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Living with a Chronic Illness such as Fibromyalgia, Multiple Sclerosis, Lupus, Ehlers-Danlos, etc. can be a challenge. So much of your time is taken up with medical appointments, tests, daily pain and discomfort, mobility issues and more.
We sometimes forget to take time to spend on positive, “non-medical” moments. Maybe it’s because we have to look for them, rather than have them always there. Maybe it’s because we’re so tired from being ill that it’s too much effort.
I believe it’s important though, to find those good things in the day or to create moments when necessary. I’d like to share a few ideas with you today to help you fill your time with positives.
Moments
Pets
Our pets bring us so much comfort, whether you live with Chronic Pain or not. If you do live with an Illness of some sort, this is especially true. Pets seem to have a way of knowing when we need an extra cuddle or two, and they’re always there for us. I have a wonderful cat named Dorie, who loves to lay on my legs when I’m on my laptop (like right now)
I can feel my stress dissipating as soon as Dorie lays with me. It’s a tangible and therapeutic benefit of cat ownership and a wonderful feeling period. If you don’t currently own a pet, it’s something to consider.
Books
I love to read and a good book can completely transport me away from a painful day. I get so caught up in the story I’m reading that everything else fades into the background.
My personal preference for books is stories of people who have overcome challenges, especially Chronic Illness of their own. I also love autobiographies and biographies in general, and books on True Crime. Ann Rule is a favourite author in that category.
A couple of suggested books and authors I adore:
Salt In My Soul is a wonderful book about a young woman who lived with Cystic Fibrosis. Mallory’s story is both joyous and sad as she talks about being a young woman with a fatal disease. Her mom takes up the story when Mallory can’t and shares her daughter’s life and dreams.
Let’s Pretend This Never Happened is by one of my favourite author’s, Jenny Lawson. This is a true account of her life growing up with mental illness and is absolutely laugh-out-loud hilarious. I also recommend her second book, Furiously Happy as a follow up!
You can also follow Jenny on her blog site, The Bloggess
Music
Everyone has their own preferences when it comes to music that makes them feel better. I have one friend who loves to rock out to death metal and another who prefers classical music.
I find that listening to the old classics is what works best for me, to distract me from pain and discomfort. I love Led Zeppelin, Pink Floyd, Queen, Electric Light Orchestra and so many more. When I can sing along with the songs, it’s easy to put pain behind me.
Choose a gendre that suits your style, or even your particular feelings for the day. Light and upbeat or dark and moody, the goal is to move beyond pain so your focus is elsewhere. Living with Chronic Illness is never easy, so music can often be a great distraction.
Videos/TV/Movies
Living with Chronic Illness often leaves you with a lot of free time. Some people are more visual than others and find that movies and/or TV are what helps them best. With services such as Cable, Hulu, Netflix and more, there’s an endless variety of content available.
One new thing that’s all the rage is ASMR videos. ASMR stands for Autonomous Sensory Meridian Response, and is a sensation of tingling that you get in the head and spine after viewing/hearing certain sounds or sensations. Hair brushing can bring this on, along with many other stimuli.
This Wikipedia article sums up ASMR nicely and you can find many videos on YouTube to help you experience the sensation. I haven’t personally tried it yet, but if you have, I’d love to hear about it…just leave a note in the comments section.
Another way of relaxing is by sitting outside and soaking up the sounds of nature. Birds, crickets, frogs…all of these can be peaceful and induce a sense of calm in the body.
Hobbies
I am just starting a new hobby of “Paint By Numbers” and have been given this kit by a company called Winnie’s Picks. I will be doing a full review of this product at a later date, when my painting is complete, but I wanted to share with you here what a wonderful kit this is.
Inside the solid mailing tube is everything you need to complete a full size painting. There is a canvas as well as a paper copy of the painting, several different sized brushes and all the paint you can possibly need to complete the work. You do need to frame this yourself when it’s done, but everything else is there. The prices are incredibly low for the quality of product too!
There are many hobbies that you can do when you live with Chronic Illness. You want to be able to work on things that you can pick up and put down when needed, but that still give you a challenge at the same time.
Some of the best hobbies to consider are needlework, knitting, crochet, felting, colouring, painting and working with paper, such as cardmaking. You can also get into more detailed work, such as embroidery, jewelry making, candle making, soapmaking and so much more. Tell me about your hobbies in the comment section. I’m always up for learning new things!
Conclusion
I love watching the hummingbirds that come to our feeder. They bring me such joy as they sip at the nectar I’ve left for them, and I can almost feel my blood pressure going down as I observe them.
Finding ways to live with Chronic Illness doesn’t have to be difficult. We generally have everything we need for distraction in our own homes. Sure, there are days when we just feel too ill to watch a movie or play around with a hobby, but for the most part, we can use the above techniques to distract ourselves.
What sort of things do you do on a daily basis, to manage your Chronic Illness? Share with me in the comments so we can all benefit. Remember,
I want to talk about Pain today. Physical pain is something that most people can say they’ve experienced at some point in their lives and it’s something that feels different for every person. If you live with Chronic Pain, you will experience pain in a completely different way than Acute pain, which is short-lived or fleeting.
Pain Scale
When you are in pain, you are often asked to describe how bad your pain is on a scale of 1 (being the least amount of pain) and 10 (being the worst pain you’ve ever felt). Doctors often use this chart:
I personally prefer this updated pain chart:
Types of Pain
acute pain starts suddenly and is short-term
chronic pain lasts for a longer period of time
breakthrough pain often happens in between regular, scheduled painkillers
bone pain happens when cancer is affecting a bone
soft tissue pain happens when organs, muscles or tissues are damaged or inflamed
nerve pain happens when a nerve is damaged
referred pain is when pain from one part of your body is felt in another
phantom pain is when there is pain in a part of the body that has been removed
total pain includes the emotional, social and spiritual factors that affect a person’s pain experience.
hyperalgesia – extreme and abnormally heightened sensation to pain
allodynia – Allodynia refers to central pain sensitization following normally non-painful, often repetitive, stimulation.
paresthesia – an abnormal sensation such a prickling or “pins and needles” in a part of the body caused chiefly by pressure on the peripheral nerves
visceral – pain that is felt in the thoracic, pelvic, or abdominal organs
Some of the descriptive words that are commonly used to define your pain include:
aching
tender
sharp
shooting
hot
burning
nagging
intense
stabbing
tingling
dull
throbbing
Living With Pain
For most people, pain is a response to an injury or illness and is generally short-lived. It tells us that there is a problem in the body so that we can get the proper treatment to correct the situation.
For people who live with Chronic or Persistant Pain, the body continues to send out pain signals long after the original injury or illness, or in response to an ongoing condition such as arthritis.
It’s important to talk about your pain and to work with your healthcare team to find ways to manage it. There are many treatment options available, from Cognitive Behaviour Therapy to medications such as Opioid drugs. It may help to have a trusted friend you can share with.
Some people find talk therapy a good alternative – for example, in British Columbia, Canada, there is a program from PainBC.com that pairs you up with a trained Pain Consultant in their “Coaching for Health” program.
Emotional Pain
Emotional Pain can be just as devastating as physical pain, as there is often a harder time finding ways of reducing the anguish that is felt. This is where talk therapy and Cognitive Behavour Therapy can be especially of benefit.
You may be feeling particularly distressed about the physical pain you are feeling. By seeking ways to share your emotions, you can ease the burden that’s been placed on you and come to terms with the physical pain that may now be a permanent part of your life.
I belong to a Fibromyalgia Group on Facebook calledFibro Connect. This question was recently asked and I’ve been given permission to share some answers here:
Finish this sentence: The hardest thing for me when I got chronic pain was…
Sheila Ibe McGaughey Hicks: When I don’t have anything to cure the pain and the Dr.s don’t give a da–. If it was them you can bet they would have something!!
Melissa Temple: Dealing with what I couldn’t do anymore.
Margie Daily Williams: Relationships
Vicki Fellas DeKroney: Going out with my husband and doing things we used to do. Liked dancing.
Peggy O’Connor: Having fun like I used to – it being so loud in the stores and the fluorescent lighting got to my eyes. I couldn’t wait to get home to my chihuahua and just destress. Not fun at all
Leeroy Good: I had to learn that who you talk to about certain things is important and knowing who to share with is an art.
Nikki Albert: Accept I was disabled
Marjorie Mccluskey: Sleeping
Lisa Kreimes: Having to give up my old self. The person that could do everything, and friends dropping like flies because they don’t understand why you can’t be who you once were.
Lea Cheney: To fight the anxiety and depression
Linzi Bee: I miss long dog walks so much .
Susan Weber: Everything above. You all nailed it.
Pamela Jessen: Accepting that my life was going to drastically change.
Susan Pearson: Realising I am unlikely to have children. I still try and consider other options going forward but time is ticking away and windows are narrowing. All the rest are just frustrations in comparison to this.
Conclusion
As you can see, living with Chronic Pain causes your whole life to spiral out of control. Chronic Pain affects every aspect of your life – your relationships, your work, your hobbies, your freedom, your ability to make choices…that’s why it’s crucial to work with your healthcare team to find solutions that help you. Remember…
November is Good Nutrition Month so I’d like to share some information with you to help make it your healthiest month ever! Let’s start with a definition:
nu·tri·tion/n(y)o͞oˈtriSH(ə)n/noun: nutrition
the process of providing or obtaining the food necessary for health and growth.”a guide to good nutrition”
food or nourishment.”a feeding tube gives her nutrition and water”. Similar: nourishment, nutriment, nutrients, sustenance, food, daily bread, grub, chow, nosh, scoff, victuals
the branch of science that deals with nutrients and nutrition, particularly in humans.”she took a short course in nutrition”
Origin
late Middle English: from late Latin nutritio(n- ), from nutrire ‘feed, nourish’.
Good nutrition is an important part of leading a healthy lifestyle. Combined with physical activity, your diet can help you to reach and maintain a healthy weight, reduce your risk of chronic diseases (like heart disease and cancer), and promote your overall health.
Your food choices every day help to set the tone for good nutrition. Supplements are also available to help aid you in reaching your nutritional goals.
Food Guides
Unhealthy eating habits have contributed to the obesity epidemic in the United States: about one-third of U.S. adults (33.8%) are obese and approximately 17% (or 12.5 million) of children and adolescents aged 2—19 years are obese.* Even for people at a healthy weight, a poor diet is associated with major health risks that can cause illness and even death. These include heart disease, hypertension (high blood pressure), type 2 diabetes, osteoporosis, and certain types of cancer. By making smart food choices, you can help protect yourself from these health problems.
The United States and Canada put out food guides to help people make smart choices when it comes to eating. Other countries do the same. Here are some examples:
The US uses both a Food Pyramid and a Good Plate Guide to help encourage people to eat a healthy diet. This pyramid shows the types of foods that are most recommended and the ones we should be eating more sparely (at the top) The new guide from the US helps you plan your plate appropriately, using food guidelines from the Pyramid.The 2019 Food Guide from Canada shows the types of foods you should be eating as well as the proper portions.
The risk factors for adult chronic diseases, like hypertension and type 2 diabetes, are increasingly seen in younger ages, often a result of unhealthy eating habits and increased weight gain. Dietary habits established in childhood often carry into adulthood, so teaching children how to eat healthy at a young age will help them stay healthy throughout their life.
The link between good nutrition and healthy weight, reduced chronic disease risk, and overall health is too important to ignore. By taking steps to eat healthy, you’ll be on your way to getting the nutrients your body needs to stay healthy, active, and strong. As with physical activity, making small changes in your diet can go a long way, and it’s easier than you think!
Make half your plate fruits and vegetables: Choose red, orange, and dark-green vegetables like tomatoes, sweet potatoes, and broccoli, along with other vegetables for your meals. Add fruit to meals as part of main or side dishes or as dessert. The more colorful you make your plate, the more likely you are to get the vitamins, minerals, and fiber your body needs to be healthy.
Make half the grains you eat whole grains: An easy way to eat more whole grains is to switch from a refined-grain food to a whole-grain food. For example, eat whole-wheat bread instead of white bread. Read the ingredients list and choose products that list a whole-grain ingredients first. Look for things like: “whole wheat,” “brown rice,” “bulgur,” “buckwheat,” “oatmeal,” “rolled oats,” quinoa,” or “wild rice.”
Switch to fat-free or low-fat (1%) milk: Both have the same amount of calcium and other essential nutrients as whole milk, but fewer calories and less saturated fat.
Choose a variety of lean protein foods: Meat, poultry, seafood, dry beans or peas, eggs, nuts, and seeds are considered part of the protein foods group. Select leaner cuts of ground beef (where the label says 90% lean or higher), turkey breast, or chicken breast.
Compare sodium in foods: Use the Nutrition Facts label to choose lower sodium versions of foods like soup, bread, and frozen meals. Select canned foods labeled “low sodium,” “reduced sodium,” or “no salt added.”
Drink water instead of sugary drinks: Cut calories by drinking water or unsweetened beverages. Soda, energy drinks, and sports drinks are a major source of added sugar and calories in American diets. Try adding a slice of lemon, lime, or watermelon or a splash of 100% juice to your glass of water if you want some flavor.
Eat some seafood: Seafood includes fish (such as salmon, tuna, and trout) and shellfish (such as crab, mussels, and oysters). Seafood has protein, minerals, and omega-3 fatty acids (heart-healthy fat). Adults should try to eat at least eight ounces a week of a variety of seafood. Children can eat smaller amounts of seafood, too.
Cut back on solid fats: Eat fewer foods that contain solid fats. The major sources for Americans are cakes, cookies, and other desserts (often made with butter, margarine, or shortening); pizza; processed and fatty meats (e.g., sausages, hot dogs, bacon, ribs); and ice cream.
Use the MyPlate Icon to make sure your meal is balanced and nutritious.
Tips
Prepare most of your meals at home using whole or minimally processed foods. Choose from a variety of different proteins to keep things interesting. Using catchy names for each day can help you plan. Try “Meatless Monday” with this meatless recipe.
Make an eating plan each week – this is the key to fast, easy meal preparation.
Choose recipes with plenty of vegetables and fruit. Your goal is to fill half your plate with vegetables and fruit at every meal. Choose brightly coloured fruits and vegetables each day, especially orange and dark green vegetables. Frozen or canned unsweetened fruits and vegetables are a perfect alternative to fresh produce.
Avoid sugary drinks and instead drink water. Keep a reusable water bottle in your purse or car so you can fill up wherever you are going.
Eat smaller meals more often. Eat at least three meals a day with snacks in between. When you wait too long to eat you are more likely to make unhealthy food choices.
Supplements
For some people, it may not be possible to get all the nutrients they need from food alone. Supplements are a good way to ensure that you’re as healthy as possible.
Check with your doctor who may recommend the following:
Calcium. Calcium works with vitamin D to keep bones strong at all ages. Bone loss can lead to fractures in both older women and men. Calcium is found in milk and milk products (fat-free or low-fat is best), canned fish with soft bones, dark-green leafy vegetables like kale, and foods with calcium added, like breakfast cereals.
Vitamin D. Most people’s bodies make enough vitamin D if they are in the sun for 15 to 30 minutes at least twice a week. But, if you are older, you may not be able to get enough vitamin D that way. Try adding vitamin D-fortified milk and milk products, vitamin D-fortified cereals, and fatty fish to your diet, and/or use a vitamin D supplement.
Vitamin B6. This vitamin is needed to form red blood cells. It is found in potatoes, bananas, chicken breasts, and fortified cereals.
Vitamin B12.Vitamin B12 helps keep your red blood cells and nerves healthy. While older adults need just as much vitamin B12 as other adults, some have trouble absorbing the vitamin naturally found in food. If you have this problem, your doctor may recommend that you eat foods like fortified cereals that have this vitamin added, or use a B12 supplement.
Conclusion
Improving your eating habits may seem like a challenge, but with the wide variety of fruits, vegetables and grains available, it’s actually quite easy to make good choices. Use the Plate icons as your guide for filling up, and experiment with new recipes.
Making simple changes like choosing whole grains over processed will start to become second nature and your taste buds will appreciate the new flavours as well. Introducing these healthier options to children will help them make smart choices as they grow.
I’d like to leave you with the following link to some perfect Good Health quotes! Enjoy and remember…
Living with Chronic Illness is an act of bravery. When each of your days is spent in pain and discomfort, it takes a lot of courage to keep going. I want to talk about hope…how to have it to get through your life and how it helps to keep a person going.
What is HOPE? Here is one definition I found that I think sums it up:
Hope is an optimistic state of mind that is based on an expectation of positive outcomes with respect to events and circumstances in one’s life or the world at large. As a verb, its definitions include: “expect with confidence” and “to cherish a desire with anticipation.”
Being optimistic is essential when you live with Chronic Illness, because the alternative is unacceptable. If you only see negatives, then you end up wallowing in misery and that compounds how you feel physically and mentally. I truly believe that even in the worst illnesses, there are positives to be found.
You gain a better perspective of your own strengths
You show more compassion for others who are struggling
You understand the human condition for what it is and tend to reach out more to others
Every accomplishment is a victory
You find greater wisdom from those around you
Expecting with confidence is based on faith – trusting that what you want the most will come true. Realistic faith is a good thing and ridiculous faith is even better! What is ridiculous faith? It’s when you hope and pray for something which is beyond reasonable expectations, but still anticipate that miracles could happen.
Do you need Religion to have Hope? I don’t think so. It can help in many ways, as prayer can be a very comforting thing, but I don’t think it’s necessary. Many people consider themselves Spiritual rather than Religious and find comfort in ritual, nature or other traditions. Prayer may not be a part of their lives, but they still find comfort in the routines they’ve established for themselves.
I am a Christ Follower and find prayer to be essential to my well-being. It comforts me to know that I have a God who is bigger than me and who holds me in the palm of His hand. I trust that He has a plan for my life and though I may not understand it, I accept it. Acceptance on it’s own can be comforting.
So how does one go about growing Hope in their lives? What steps do you have to take to have faith in the things that are happening in your life, good and bad?
Acknowledge your strengths. Chronic Illness can rob us of our confidence. Try making a list of all of your strengths and accomplishments. Read through the list and congratulate yourself for these positive traits. Understanding that you still have much to offer the world goes a long way in inspiring hope in the soul.
Cultivate supportive relationships. As much as you can, surround yourself with supportive and caring people. People who help you to feel good and encourage you to be your best help to increase your sense of wellbeing. Having a supportive network of friends will help you to further your interests and goals. It’s much easier to find hope within a strong community as opposed to completely on your own
Look at the activities and attitudes of people around you. See if any of them can serve as role models for what you would like to accomplish for yourself. Also, consider how the people around you act and make you feel. When you surround yourself with hope and success, it naturally trickles down into your own life. Like attracts like.
Engage in pleasurable activities. Doing things that you enjoy can also help you to develop your sense of hope. By engaging in activities that make you happy every day, you will have a greater sense of purpose. If you are not sure about what activities bring you the most joy, try out some new things to figure it out. Take a class at your local community college, try a new exercise routine (Aqua-based activities are easy on the body), learn a new skill, or start a new hobby.
Get involved with a cause. Volunteering for a cause you believe in is a great way to cultivate hope towards the future. This can be in either your local community or even an online community if mobility is an issue for you. Patient Advocacy is an area that is under-represented and working with Health Care Organizations can have a huge impact on yourself as well as others who live with Chronic Illness.
Build relationships with others. When you start to build new relationships over common goals or projects, your sense of hope can greatly increase as you see results from your efforts. Involving yourself with other people who share your interests can help you to overcome alienation, which can cause a feeling of hopelessness.
Get out of your comfort zone. This is essential to changing your thought patterns and learning to approach the world with more hope. Go out with friends after work instead of going straight home. Join a club or group so you can share new experiences with others. Develop a new hobby. Put yourself out there in ways that make you mildly uncomfortable at first.
Keep track of your thoughts and feelings in a journal. Journaling is a great way to understand why you have been feeling hopeless and it is also a great stress reliever. To get started, buy a beautiful journal and a nice pen or pencil. Choose a comfortable place and plan to devote about 20 minutes per day to writing. Start by writing about how you are feeling, what you are thinking, or whatever else is on your mind.
Try keeping a gratitude diary. Every night, think of three things you are grateful for and write them down. Doing this every day will help you to develop a more hopeful outlook and it can also help you to sleep better and enjoy better health.
Take care of yourself. Exercise, eat healthy food, get plenty of rest, and relax. By taking good care of yourself, you are sending your mind signals that you deserve to be happy and treated well which can increase your hope for the future. Make time to take care of yourself
Exercise to the best of your ability.
Eat a balanced diet of healthy foods like fruit, vegetables, whole grains, and lean proteins.
Set aside at least 15 minutes per day to relax. Practice yoga, do deep breathing exercises, or meditate.
Stay hydrated
Go for a massage or have body work such as Reiki to help balance you.
Hope doesn’t have to be a fleeting thing…it can be a strong and deciding factor in your day to day life. I live every day with the hope it will be a good day. Positivity goes a long way in making me feel better physically, mentally and spiritually. I’m realistic about what I am and am not able to do, but I never give up hope that things will be better. It’s all about attitude and choosing how you want to feel.
I hope these ideas and suggestions are useful for you. I named my blog There Is Always Hope because I truly believe that statement. Even in the worst of our moments, I believe there is always a tiny light burning bright for us. We just have to look for it. Sometimes that means stepping out of our comfort zone and doing something we never thought we were capable of, but if we can overcome our fear, we may be surprised as to what we find.
And so I end this post as I always do and I mean it even more today…
Today we meet my final guest for Interview October, the wonderful Elisa Austin. Please join me in welcoming her!
Introduce yourself and tell us a bit about you…
I am a 50 year old, mother of eight and grandmother. I’m a photographer and writer.
One fascinating fact about me is:
I am still existing.
Chronic illness(es)/disabilities I have…
I have underactive thyroid (Hashimoto’s), Fibromyalgia, and IBS
My symptoms/condition began…
The thyroid condition was diagnosed in 1999 because I was just “off” and “dragging.” Fibromyalgia was diagnosed in 2004 although I believe symptoms began earlier.
My diagnosis process was…
My doctor ruled out most things with blood tests and sent me to a rheumatologist. The rheumatologist ruled out RA and by process of elimination Fibromyalgia was diagnosed.
The hardest part of living with my illness/disabilities is…
Knowing there is no cure and I will have to deal with the pain every day for the rest of my life.
A typical day for me involves…
Medication, necessary appointments or activities, and with luck some housework.
The one thing I cannot live without is…
It rotates through warm baths, heating pads, aromatherapy, family, exercise
Being ill/disabled has taught me…
That I’m stronger and more determined than I had originally thought.
My support system is…
My family and an online group
If I had one day symptom/disability-free I would…
I don’t even know. I no longer make plans or have dreams.
One positive of having a chronic illness/disability is…
I have another great interview to share with you today…please meet Shantay Marsh Thompson!
Introduce yourself and tell us a bit about you…
My name is Shantay Marsh Thompson, and I am 42 years old. I have two grown kids that are working, and one is in college. I spend my time taking online classes since I am not able to work. I spend my time in the house the majority of the time because walking too much makes my back hurt. I do not go to stores to shop. I shop online or if it is something personal that I need, I will go to Dollar General so I can get in and out. My mother does the grocery shopping for me.
One fascinating fact about me is:
That even though I am down with this illness, I continue to learn academically.
Chronic illness(es)/disabilities I have…
I have Fibromyalgia with chronic back pain, depression, Neuralgia, Arthralgia, and Dyslipidemia. The pain in my back is worse. I have trouble sitting and standing for long periods.
My symptoms/condition began…
In 2013 after being diagnosed with endometriosis. After I had my procedure, I started hurting badly after a month. I went back to my gynecologist and asked him to please give me a hysterectomy because I needed to work. I had to wait four months before I could get the hysterectomy, so I continued to work in pain. After I had my hysterectomy in 2014, the pain was still there. I worked for about a month then had to quit my job because I could not stand nor sit for long periods.
My diagnosis process was…
Terrible. I went through several doctors in Tuscaloosa, AL. Nobody would give me the help that I needed. I cried every day because my pain was so bad. The medicine they gave me, such as Tramadol did not do anything for me. I had to move back to Mobile County to find me a doctor that could help me. I found one, and he gave me some medicine that would help me reduce the pain some. It was June 2015 before I got a diagnosis.
The hardest part of living with my illness/disabilities is…
Dealing with the pain in my back. I have tried Fibromyalgia lotions and nothing seems to work good.
A typical day for me involves…
Laying in my bed watching tv or doing some schoolwork. I make myself go to the gym to at least once a week to do strength training and walking but I pay for it the next day.
The one thing I cannot live without is…
My Lyrica. I have bad nerve pain so I take Lyrica. After my daughter turned 19 in April, my medicaid ended so I had to go without Lyrica for some weeks and I was in pain.
Being ill/disabled has taught me…
How to appreciate life more and do not take anything for granted. I have worked since I graduated in 1995 and I never thought my working career would end in 2014.
My support system is…
My one friend, my family, my fiancé, my church family, and the FIBRO CONNECT Group.
If I had one day symptom/disability-free I would…
Get out the house and treat myself.
One positive of having a chronic illness/disability is…
Being thankful that it is not a deadly illness.
One final thing I want people to know is:
Fibromyalgia is real. I would not wish this pain on no one.
I’m excited to share my next guest’s story with you…please meet Jennifer Van Haitsma!
Introduce yourself and tell us a bit about you…
Hi! My name is Jennifer Van Haitsma, the writer behind the blog Diffusing the Tension. I am 33 and I live in Northwest Indiana (about an hour from Chicago). I’m married to my love of 14 years, and we have 2 amazing children. (They are 4.5 and 2.5). In my spare time, I love to watch TV. I’m an avid binge watcher when I can. I especially love British period dramas, procedurals, and true crime documentaries. I also love to read. My goal is to read 35 books this year. I try to workout several days a week as well.
One fascinating fact about me is:
I am terrified of heights. It is strange because I am not afraid of rollercoasters or airplane rides, but any other situation involving heights petrifies me.
Chronic illness(es)/disabilities I have…
I live with bipolar disorder and chronic fatigue. Originally, I was diagnosed with depression, but my diagnosis changed about 10 years ago.
My symptoms/condition began…
I began to exhibit symptoms of depression when I was 9 years old. I was a little more withdrawn at school and acted out a bit more at home, from what I can remember.
My diagnosis process was…
When I was 12 or 13 my mom took my to my first therapist. I remember not even wanting to talk to her at first. I had a lot of anger after my cousin’s death in 1995 (when my symptoms started) and really didn’t want to let a stranger climb the walls I had built inside. But ultimately, I was diagnosed with depression. In 2009, at age 23, I began to exhibit symptoms of mania (hyper productivity, irritability, and sabotaging relationships.) I sought treatment again, and in 2010 I was labeled bipolar 2 with rapid cycling mixed episodes.
The hardest part of living with my illness/disabilities is…
Definitely the effects it has on those around me. I sometimes lose my patience when it’s not necessary, and take it out on my husband and children, which makes me feel deeply ashamed. Another incredibly hard part is the fatigue. I am so tired that it is hard to stay awake past 7:30pm.
A typical day for me involves…
Taking the day an hour at a time. I make the kids breakfast, then we do whatever we can to pass the time until lunch, etc. My fatigue makes it hard to stick to a schedule with them currently, as I often need to lie down for prolonged periods of time.
The one thing I cannot live without is…
My phone! It is where I store my pictures, others’ phone numbers, others’ address, where I get my entertainment, where I keep my to do lists… My phone is the central hub of my daily activity.
Being ill/disabled has taught me…
It had taught me resilience in a way that nothing else could. I have had to learn that each day is a fresh start, and it is possible to make the most of my situation. It has also taught me the power of speaking about my journey so that I can help others through theirs.
My support system is…
My biggest supporters are my husband and parents. My husband is my best friend, and he is always patient with me when my illness gets bad, and always stays by my side. My parents provide a lot of support where my husband can’t. The girls get a lot of play time with their grandmas during the day when he is working and I need the help.
If I had one day symptom/disability-free I would…
It’s funny how hard it is to imagine myself without my illness! I think I would get in a long workout and then spend the day doing fun things with the girls. Maybe a trip to the zoo or a local amusement park, if the weather was good.
One positive of having a chronic illness/disability is…
It helps you have more empathy for others who struggle. Before my diagnosis, I’m sure I often looked down on people with chronic illness. Now, I know they are just that: people.
One final thing I want people to know is:
I am not my illness. I am so much more than just bipolar. I am a wife, a mom, a bookworm, a TV addict, a fitness nut, a friend, a sister, a daughter, a person.
It’s time to meet my next guest, the lovely Jamie Pirtle. Enjoy her story!
Introduce yourself and tell us a bit about you…
I was born blind in one eye and with a condition called nystagmus, where my eyes continually move. The doctors are not sure why, but have suspicions that it could be because my mom smoked and had mono while pregnant.
I grew up in the south eating meat, potatoes, gravy and biscuits almost every meal. My way of eating was pretty much carbs, carbs and more carbs. A meal without a potato was pretty much a sin.
As a teen, I started to eat junk food, including diet coke and snickers for lunch and the diagnoses started coming in during my late 20’s.
Conditions you have been diagnosed with:
Mitral Valve Prolapse
High Cholesterol
Arthritis (in remission)
IBS
Lupus (in remission)
Ankylosing spondylitis (in remission)
Endometriosis (had hysterectomy)
Thyroid cancer (removed and now take meds)
I can remember staying in the bed all day one Mother’s Day crying because I couldn’t play with my 2-year-old daughter or go see my mom. The pain and unpredictable bowel movements were just too much.
I didn’t get to take vacation from work because I used all my time off going to specialist and staying home sick.
I can’t wait to hear about YOUR progress!
At about age 49, I started following a health coach on Facebook and listening to him talk about how what we eat results in autoimmune diseases. This coupled with returning from a cruise so sick I missed another week of work, I decided I had to do something
I first went gluten free and started eliminating junk food and diet cokes. Next, I cut out all aspartame, high fructose corn syrup and most fried foods. This helped, but there was still something missing.
Then I was diagnosed with thyroid cancer. When you hear these dreaded words, your world stops. I remember sitting in the parking lot of the doctor’s office talking to my husband on the phone and saying, I have to figure out what is causing this.
I started studying everything I could get my hands on and decided the only way to go was to eat whole, mostly organic foods. I also cut out as many carbs as I could and cut way back on sugar.
After improving my lifestyle, I feel SO much better in my 50’s than I ever did in my 30’s and 40’s. I went from taking 9, yes NINE daily prescriptions to just ONE (my necessary thyroid medicine) and eliminated the pain associated with several autoimmune diseases.
One fascinating fact about me is:
I went back to school at age 53 and became a certified health coach so I can help others get healthy and not have to live in pain like I did. I also beat cancer and plan to stay cancer free!
My symptoms/condition began…
In my late 20’s. (born with the eyes)
My diagnosis process was…
Long and tedious. The doctors just kept telling me I was too stressed at work and I needed to learn to relax. I also knew something was wrong with my thyroid and it took almost 2 years for doctors to finally find the cancer after I insisted on a sonogram and biopsy.
The hardest part of living with my illness/disabilities is…
People think I am ignoring them when I cannot see them out of my bad eye or they think I’m drunk or high as my eyes move. When I was in school the teachers thought I was day dreaming because it was easier for me to focus on them by turning my head and creating a null point that made my eyes stop moving. It is also hard to do fun activities like bowling due to some joint pain from time to time.
A typical day for me involves…
Eating healthy and making sure I drink lots of water, take my supplements, use essential oils and remember the food makes a HUGE difference in how I feel. I work a demanding manager job with a large aero defense company and have a side gig as a heath coach and blogger.
The one thing I cannot live without is…
My glasses for sure! But also, healthy foods and supplements – I take lots of supplements.
Being ill/disabled has taught me…
That life is precious and we really are what we eat. I have also learned not to push myself and to try to destress as much as possible.
My support system is…
My husband, family and friends. I have also found joy now in my health coaching clients. It is such a great feeling to see them losing weight and regaining energy.
If I had one day symptom/disability-free I would…
Go watch a 3D movie! They don’t work for me with my bad eyes.
One positive of having a chronic illness/disability is…
It has made me strong and made me a lifelong learner. I can no longer rely on others to make medical decisions for me and research everything a doctor tells me.
One final thing I want people to know is:
Food is a HUGE factor in your health and how you feel. Unfortunately, many doctors want to give you a pill and not educate you on the importance of good nutrition.
I’m delighted to introduce my next guest to you. This is Jenny Jones and here is her story:
Introduce yourself and tell us a bit about you…
I’m Jenny and I share my story of rare disease and chronic illness on my blog Life’s a Polyp. I have a Master’s in Social Work and provide behavioural health services to dialysis patients.
One fascinating fact about me is:
I started a research fund through National Organization for Rare Disorders (NORD) for the rare disease of Familial Adenomatous Polyposis (FAP). Life’s a Polyp shop has several designs across a variety of merchandise that helps to raise awareness of rare disease but also supports the FAP Research Fund through NORD.
Chronic illness(es)/disabilities I have…
I have two rare diseases – Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). FAP is a hereditary, rare disease that causes 100s to 1000s of pre-cancerous polyps to develop in the colon as well as extracolonic manifestations. SBS results when too much of the colon and even the small intestine is damaged or removed resulting in malabsorption of nutrients and fluids that is often complicated by severe diarrhea and dehydration.
My symptoms/condition began…
FAP is a genetic disease that I was born with but I also developed Short Bowel Syndrome due to my colon and part of my small intestine being removed as part of my treatment for FAP.
My diagnosis process was…
I was diagnosed when I was about 8 years old after having stomach pain from a pre-ulcerous condition which led my GI doctor to complete genetic testing due to my family history of FAP. It was difficult to obtain a referral to a GI doctor as my PCP told my parents I was “just a whiny child” and nothing was wrong with me.
The hardest part of living with my illness/disabilities is…
Never knowing what the day will be like or what the future will be. Working to be able to support myself is my primary goal in life and the best physical health years of my life are behind me now. I am terrified of the day that I will no longer be able to work and support myself.
A typical day for me involves…
I work full time – 5 days a week but after work and on the weekends I require a lot of resting time to recuperate from the work week so that I may work the next week. Sometimes I enjoy outings with friends and family but I have to balance all of my activities with rest periods in order to continue functioning.
The one thing I cannot live without is…
My parents – they are my foundation and support in life. They help keep me going while providing assistance as needed to care for myself. I would be lost without them.
Being ill/disabled has taught me…
The importance of taking physical and emotional care of myself and advocating for myself so that I may continue to maintain optimal functioning ability.
My support system is…
My parents and a few select friends make up my support system. I also receive encouragement from online groups for FAP and SBS.
If I had one day symptom/disability-free I would…
Probably spend the day engaging in all the activities I typically am unable to complete or am leery about completing due to my SBS symptoms.
One positive of having a chronic illness/disability is…
Chronic illness teaches us perseverance and empathy – both qualities that are important in caring for ourselves and understanding others.
One final thing I want people to know is:
Chronic illness is hard to live with – both physically and psychologically. Counseling can be a key component of learning to accept and cope with chronic illness in a healthy way. It is also essential to be proactive in one’s care to ensure the best treatment possible from all medical providers.
My next guest is the amazing Sam Moss from Australia. She has a fascinating story so I hope you enjoy reading about her!
Introduce yourself and tell us a bit about you…
Hi, I’m Sam and I live with my beautiful husband in Australia. I have been living with a series of complex medical conditions for over 9 years now. In 2014 my health deteriorated to the point of needing to medically retire.
I had lived life in the fast lane for 30 years with a successful management career in financial services. Prior to medically retiring I was an Executive Manager in the Financial Services Industry. A career I loved as it predominately involved coaching and developing a Leadership team.
I also enjoyed various change management consultancy roles for not for profit organisations. I loved every minute of those able bodied years and am very grateful for the experiences I have had.
My career highlights include;
Contributing to creating an award winning customer experience culture in the various Banking and Insurance departments I’ve managed.
Leading an inspired and motivated team of people, many of whom are now lifelong friends.
Receiving the inaugural Banking Leader of the Year Award just before I medically retired (such a special parting gift)
Restoring an historic church building to its former glory,
Appointed as a management consultant in the Anglican Church, and assisted Senior Church Leaders (Clergy and Lay) to bring about exciting reformative change.
Now I’m medically retired I’m exploring my long term passion to be a writer. I’m a member of the Chronic Illness Bloggers Network and an ongoing contributor to “The Mighty”.
With time on my hands I decided to start a blog called ” My Medical Musings” as a way to reach out to others dealing with life changing health episodes. I also founded a Global online support forum, “Medical Musings with Friends”. It’s a place for those living with chronic illness or their carers, wanting the hand of friendship, as they journey an often lonely and difficult path.
It is a place to laugh, cry, share and vent together. It’s my absolute passion and honour to walk daily with others who understand exactly what it is like living with chronic illness.
When health gets complex, it’s really important to find others who are also battling multiple issues to share the never-ending complexities that arise and share all aspects of life living with chronic disease.
One fascinating fact about me is:
Not sure there’s much fascinating about me at all. My husband and I have moved 17 times in 24 years of marriage!! Some of those moves have been interstate and we have seen a lot of Australia as a result. That part has been a blessing.
Yes we are expert movers and this last move is definitely it. The combination of my husband’s work as an Anglican minister and my work in the Bank, was the reason for the majority of the moves. We have just settled into a lovely Lifestyle village which works perfectly for my disabilities, so hopefully no need to move again…EVER!!!
Chronic illness(es)/disabilities I have…
The list is way longer and complex than I would like, but here goes:
Rheumatoid Arthritis ( diagnosed 2010)
Sjogrens Syndrome ( diagnosed 2011)
Prolapsed Rectum ( diagnosed 2011)
Permanent Colostomy ( 2013)
Progressive Rare Bone Disease which causes my long bones to pathologically fracture. This includes both my femurs, 7 foot fractures, spinal fractures and severe Lumbar Spinal Stenosis with compressed spinal cord. Fractures won’t heal and surgery to fix my spine constantly fails as the bone disease continues to attack it.
My symptoms/condition began…
In 2010 I was in my mid 40’s, at the height of my career as an Executive Manager in a major bank.
In April of that year I was getting ready to take 6 weeks long service leave to spend some quality time with my beautiful husband. We were going on a road trip through South East Queensland down to the Hunter Valley in Northern NSW and I was so looking forward to having a break.
On the way home I started feeling really unwell and I just couldn’t shake off an extreme tiredness, joint pain like I had never experienced and abdominal pain. My hands were so sore that even the slightest touch was excruciating. I couldn’t hold my husband’s hand or pick anything up. My hips were so painful that walking normally was becoming difficult unless my husband supported me. We knew something was not right.
As soon as we got home we headed for my GP and a whole list of Specialist appointments followed. Long story short, 2 months later I was diagnosed with Rheumatoid Arthritis (RA) after being first diagnosed with Q fever, Ross River Virus and a list of other false positive diagnoses.
My body was not behaving normally and my Doctors and I were to discover over the next 6 years just how abnormal it actually was. I had no idea what lay ahead.
As time went on…
With RA medication on board, I continued to work for another 12 months before my body began to basically break down bit by bit. My last day in the office was Melbourne Cup Day 2011. I was trying to push through the day and getting ready to judge my Departments “Fashion on the Fields” when my Personal Assistant found me in agony in the ladies bathroom and rang my husband to come and pick me up.
From that day my life was never to be the same again.
In 2011, I was diagnosed with a prolapsed bowel which refused to mend despite 3 attempts at conservative surgery. By mid-2013 we knew we had no choice but to accept that I needed a permanent stoma.
In November 2013 I medically retired and became the “proud” owner of a permanent colostomy. It has been quite a journey with my medical team including a Clinical Immunologist, Colorectal Surgeon, Endocrinologist, Orthopaedic Surgeon, Gynaecologist, Ear Nose and Throat Specialist, Infectious Disease Specialist, Neurologist and Dermatologist, all trying to work out what is causing my health issues.
I have been called “special”, “unique”, “one of a kind” but really they all believe overall, aside from Rheumatoid Arthritis, I have a rare idiopathic disease (a disease of its own kind).
I have lost count of the number of times I have been hospitalised over the past 8 years. I have had 14 surgeries since October 2010, with the prospect of more ahead.
I thought Rheumatoid Arthritis and a permanent colostomy would be an end to what my body was going to challenge me with. I hoped I could settle comfortably into medical retirement with my husband but I soon came to realise that my life was going to be an ongoing medical adventure.
Bone Fractures…
In October 2014 my left femur (thigh bone) broke spontaneously. Yes, all on its own, I didn’t fall from a great height or have a major car crash, which is apparently the type of accident I should have been involved in to have the strongest bone in my body break. Mine just broke as I was opening my bedroom door!
It is called a pathological break and my Specialists believe I have a rare genetic bone disease. My bones are extremely dense and marble like and my bone turnover is almost non-existent. We also now know that my bones are dying and much of the soft tissue around my bones is also dead tissue.
12 months after my leg broke, my right femur was also showing signs of disease on MRI with bone marrow involvement so a rod had to be placed in that to prevent an imminent break and repeat medical emergency like we had with my femur break in 2014.
I am constantly dealing with multiple foot fractures and none of my broken bones in my legs or feet will heal. My bone pain is excruciating on a daily basis. My left femur which snapped in two is still broken nearly 5 years later and has been diagnosed as a non-union break. I have been on two crutches or a walker since the femur broke and also have a mobility scooter. The disease is now attacking my spine and causing excess bone to grow into the spinal cord. Despite surgeries to try and remove the bone, it grows back so quickly the surgeries are deemed as “failed”.
My diagnosis process was…
Complicated to say the least. As above it was a long process but also quick in the sense that I was referred to the right Specialists and soon had a team working on my case to try and work out what was going on. Some diagnoses were by chance. 6 months prior to my femur snapping in two, my Clinical Immunologist had sent me for a Bone Density Scan.
His concern was low bone density (Osteoporosis) because I had been on Prednisone for 4 years. He was so surprised to find I had extremely high bone density, really high. That just shouldn’t have been the case. He quickly referred me to an Endocrinologist who began monitoring my bone blood markers. All was not good. High Bone Density and low bone turnover meant new bone was being laid down but the old bone wasn’t being replaced. Bone was being added to bone and my skeleton was getting thicker and thicker.
I remember my Endocrinologist saying, “hopefully it will just settle and you won’t get any broken bones”.
I was suffering with terrible bone pain and within 6 months of her comment she was by my hospital bed in a state of shock as my left femur had snapped in two so spectacularly. I was so blessed to be alive as I was told it could have severed my femoral artery. I was also the pinup girl in the hospital…well, my x-ray was!!
The hardest part of living with my illness/disabilities is…
For me it’s the constant daily pain and exhaustion that accompanies it.
A typical day for me involves…
Morning…
Wake up around 6.30am, from a generally broken night’s sleep;
Take pills before I try to get out of bed. Crutches await my descent from my bed….the first effort to get out always fails. I just can’t weight bear until the pills help a little. My back often paralyses my legs and I simply can’t move until anti-inflammatory meds help take the pressure off my spine. When I first get up I only get as far as the ensuite and then straight back to bed;
Eventually I make it to the kitchen and put the kettle on. Depending on how I am feeling and if I need to stand rather than sit, I’ll make a simple breakfast of cereal with banana and a cup of tea. If I can’t do it my husband does. We sit and eat breakfast in the lounge room and watch the morning news and chat together. I also check in on my online support forum, emails and messages;
I take my second set of morning pills with food. These help but they fatigue me for the first 2 hours of the day making it even harder to coordinate movement;
I rarely cry. I don’t feel sorry for myself. I’ve become used to my circumstances, although I still make plans in my head of all I’d like to do during the day, knowing that I’ll be eliminating items from that list constantly. Staying perfectly still the leg hurts but it’s a duller pain.
The slightest movement and it’s like I’ve broken it all over again. Fractured feet and stress fractures in the opposite leg add to my overall disability. The stenosis is by far the most crippling. Even lying down only brings temporary relief and I soon have to get up and try and move;
I’m determined but after breakfast I have no energy to get dressed just yet. I leave showering until the evening after dinner. So much easier to shower then knowing I can collapse into bed straight away.
In the morning I want to run around and stack the dishwasher, dust the furniture, get dressed and do my hair and makeup all before 7.30am. Ha! Not happening! I used to move at such a fast pace. I miss that. I will do all those things but it will take me 3 or 4 hours at a ridiculously slow pace.
I get told others should do those tasks for me but it is so important for my well-being that I keep as much independence as I possibly can. My husband does all the washing and cooking as that is outside of my capabilities.
I still have goals to get better and resume those activities, even though I know it’s unlikely. There is no cure for my disease, it’s progressive and my prognosis is unknown.
Afternoon…
After lunch the fatigue from battling the pain is beyond belief so I need to lie on the bed for at least an hour, if not longer. I’m not a day time sleeper so I just relax as best I can, read, watch TV, blog, write articles and manage my online forum.
In the late afternoon my husband and I will have afternoon tea on our back patio. The fresh air and sitting in our little courtyard/garden brings me so much joy and is so relaxing. We’ve set it up like our own private cafe and I arrange our afternoon tea as if it were served at a boutique coffee shop or tea house. The simple things bring such joy.
I sit in the lounge room for dinner while we watch the news. I take my evening pills, shower and am back in bed by 8pm. My husband joins me by 9pm and we watch TV together. We love our evenings.
I rarely leave the house aside from medical appointments but I still have goals to get out a little more and we’ve started to achieve those once a fortnight.
Stoma…
All of the above is my normal routine unless my stoma becomes over active. I then have to manage changing my stoma appliance, putting all best laid plans out to pasture.
(I have a permanent colostomy due to a severe rectal prolapse. A ‘colostomy’ is a stoma formed by bringing part of your colon (large bowel) out on to the surface of your abdomen).
I do actually love my stoma, which I’ve had for 6 years on the 11th November. The pain and disability from having a severe rectal prolapse was horrific. My stoma restored some quality of life and I’m so grateful for it.
The one thing I cannot live without is…
My husband
Being ill/disabled has taught me…
Life isn’t over with a chronic illness diagnosis and disability. It’s just different. New opportunities to connect with others and pursue new passions and goals, is achievable. It’s all about our mindsets. It’s about choosing to embrace new ways of living. I’ve learned to focus on enjoying moments, rather than planning ahead for good days/weeks or months.
In many ways so much of my life has changed, but nothing has changed where my faith and trust in God is concerned. I am resolved to make the best of each and every day I am blessed with.
I love each day, as I know despite my unrelenting pain, I will have moments within the day that bring joy, laughter and connection with others in some small way. Just writing this has been something I’ve enjoyed. I will definitely be collapsing on the bed straight afterwards but it’s been a delight and an honour to collaborate with Pamela on her blog.
My support system is…
My Husband is my full time carer and my main support.
My Online Support Forum Members provide me with so much love and encouragement on a daily basis
Close Friends who stay in touch with a text, email or a visit (for those who live close enough)
Our family all live interstate or a few hours away so we don’t get to see each other in person much but they are amazing in their care and concern, and also regularly text, email and phone my husband and I.
I have Government Funded support for Physio, Podiatry, Occupational Therapy, Carers, transport, home modifications, plus permanent approval for Residential Care if my health progresses to the stage of need 24 hour around the clock care.
Our Church, although having just moved to a new suburb, we are still in the process of forming new connections.
If I had one day symptom/disability-free I would…
Go for a long drive with my husband in the country. Visit little towns, stop at gorgeous cafes and walk for miles around country shops.
One positive of having a chronic illness/disability is…
I think having true empathy for others suffering with chronic illness/ disability has been a growing experience for me. We think we understand what it’s like but when you’re relatively healthy, life is busy and we don’t take enough time to look outside of our own world, to truly understand another’s needs and struggles.
Ultimately the one positive….. the gift of time
One final thing I want people to know is:
That moment when the focus shifts to the possible, rather than looking at the impossible, is a life changing moment. It’s the moment a cheerful heart has room to emerge, despite our chronic illness
It’s time to introduce my next guest, the vibrant Miss Aleisha Crabb. I’m delighted to share her story here!
Introduce yourself and tell us a bit about you…
My name is Aleisha & I live in Canberra, Australia. I was born in a country town in New South Wales called Dubbo & my parents moved to Canberra when I was 1 year old.
I am a Nurse, and I work in Drug & Alcohol. My work has given me an amazing insight into human nature, and the complexities surrounding chronic pain, opioid use & addictions. I absolutely love my job & cannot imagine working anywhere better considering my own life experience of chronic pain.
One fascinating fact about me is:
I have a ridiculous good memory for movie/TV show quotes. I remember the most bizarrely un-memorable lines from movies & shows, haha.
I injured my knee in my first year of nursing. That injury seems to have been the catalyst for triggering the onslaught of my Psoriatic Arthritis.
My diagnosis process was…
Tedious. The GP I was seeing when I first injured my knee was what I now know to be quite lazy, and was very disinterested in holistic care.
It took a very long time for him to refer me to a Rheumatologist, but when I eventually was, I was triaged as urgent & was seen in weeks. Some people have had to wait over 12 months to get into them, so for that I am very grateful.
From there I was diagnosed first as Undifferentiated Spondyloarthropathy, and as my symptoms progressed, and more specific symptoms presented, I was eventually diagnosed with Psoriatic Arthritis.
The majority of my other conditions were more easily & quickly diagnosed.
The hardest part of living with my illness/disabilities is…
The fatigue. Pain is something I have learned to manage, but the severely depleted energy levels is not something I have ever been able to successfully become accustomed to.
A typical day for me involves…
Wake up around 730am.
Medication and breakfast (if I am feeling up to it, sometimes I am too tired/nauseous).
Feed the cat. He will look at me forlornly (and disdainfully) if I don’t 😉
Work is from 9am – 530pm. (I have had my start time adjusted to 9am from 830am so that I am able to manage morning stiffness from my PsA. This gives me an extra 1hour at home due to peak hour traffic!)
Home for dinner around 6pm. Sometimes I have cooked something, othertimes it is takeaway or a pre-delivered meal service like Lite & Easy.
Medications around 7pm as one is to prepare for sleep.
Bed at 9pm after a shower usually. I do a nighttime meditation to help sleep.
The one thing I cannot live without is…
My cat. He is my ever present comfort, amusement & joy throughout the trials & tribulations of chronic illness.
Being ill/disabled has taught me…
To slow down & enjoy life. I am so relaxed about life & what I am able to enjoy now.
My support system is…
My family & close friends. They are essential to my emotional wellbeing 😊
If I had one day symptom/disability-free I would…
Walk up a mountain to have a picnic, visit a remote Indigenous site in Australia that requires lots of walking to access & camp under the stars without my CPAP machine!
One positive of having a chronic illness/disability is…
The people I have connected with as a result 😊 . The connections I have made since becoming chronically ill have become incredibly important and special to me, and I have made some lifelong friends.
Having people in your life who understand the difficulties associated with chronic illnesses and disabilities, can relate to the challenges and frustrations you face every day and truly care about your wellbeing can never be underestimated.
One final thing I want people to know is:
Its OK not to be OK.
The biggest challenge for me has been slowing down & how difficult that has been at times. I was always an active person before I became unwell; always taking on lots of challenges. Now, I have to drastically limit my activities in any given day as overactivity can bring on severe flares. This was a huge change for me & emotionally I was quite overwhelmed & became very anxious.
I want all people to know it is ALWAYS OK to tell others that they need more support if they are finding the emotional toll of their chronic illness/disabilities too hard to manage on their own.
It’s time to meet my next guest, the fabulous Keiran Potter! I’m excited about what he has to share!
Introduce yourself and tell us a bit about you…
Hello, my name is Keiran Potter, I am 21 years old and I am from the South West of England. I am currently studying English Literature and Creative Writing at University and hope to pursue a career as a writer if all goes to plan. But you know what they say, best laid plans of mice and men often go awry.
One fascinating fact about me is:
Not sure how fascinating any of my facts are but I am 22 this month and still often get mistaken for a 12 year old at my local shops. Oh and I’m gay, not fascinating but definitely a fact.
Chronic illness(es)/disabilities I have…
Celiac Disease and Various Mental Health problems but for the sake of this interview I’ll focus on the former
My symptoms/condition began…
The symptoms of Celiac were present for an awful long time before I recognised them as something that could be potentially sinister. The stomach pain, migraines and bleeding had been such a regular thing for me, that it became the norm and I failed to question it for a long time. So I’d say as long as I remember I have had the issue but it wasn’t further explored until May 2018
My diagnosis process was…
I had to have blood tests and several other samples. Celiac Disease can share some symptoms with other serious conditions like intestinal cancers, so my doctor was pretty concerned. Once they came back I got referred to a specialist on a 9 month waiting list. In the interim they told me to research about Celiac Disease and cut out Gluten from my diet. They failed to tell me that by doing this it would also put other aspects of my health at risk. Such as my heart.
When I was referred I was then asked to eat Gluten again after being gluten-free for 9 months, in order to have an upper endoscopy and biopsy of my intestines.
So all of my symptoms got more aggressive and I was in constant pain as my body had began healing in the 9 months that I had known about my potential diagnosis
The first biopsy was inconclusive. I had to wait another 3 months and get another one done. It was quite a hellish experience to be honest but I finally got the 100% confirmation of the disease. Which in many ways was a blessing as I finally had some answers
The hardest part of living with my illness/disabilities is…
The constant vigilance and endless fatigue and stomach pain. Even when doing everything you should be doing. Sometimes you have issues for no apparent reason and there is literally no answer to appease your concerns or pain.
A typical day for me involves…
A lot of thinking ahead about the risks of everyday living. Such as eating or spending the day out of the house in an unfamiliar place. A lot of time spent on or near a toilet. University, I study English and Creative Writing. Lots of medication but thankfully a lot of laughs
The one thing I cannot live without is…
Not really a thing but my support system and the people who help and love me the most. I quite literally would not be alive if it wasn’t for them.
Being ill/disabled has taught me…
To value every aspect of your life for what it is. You never know when those simple joys may be taken from you. It has also made me more appreciative of health in general. Our bodies are not as indestructible as we may like to think sometimes
My support system is…
My Family, my mum specifically. I don’t think I would show up to half of the appointments I have if it wasn’t for her dragging me there by the ear. I’m very grateful for all the help and care she gives me
If I had one day symptom/disability-free I would…
Eat some Chinese food and go do something productive and just enjoy the day without the illness. I would take advantage of some of the freedoms that I feel I don’t have as much access too since my illnesses have truly taken a hold on my life
One positive of having a chronic illness/disability is…
I think one positive is how you can then use your knowledge of your own body and conditions to educate and help others. There is also a sense of community instantly when you find people who struggle with the same illnesses and experiences. It’s important that all voices are heard, so I’m glad interviews like this amplify the voices of disabled or chronically ill people.
One final thing I want people to know is:
Only because a person may not look ill, it doesn’t mean they are not struggling everyday to live their life as normally as possible. Always be kind to everyone you meet as even if you can’t physically see it, that person could be in pain and/ or mental strife. A smile could always brighten up their day
I’m pleased to announce that Melissa Temple is my next guest for Interview October. Let’s read what this lovely lady has to say:
Introduce yourself and tell us a bit about you…
Hi. My name is Melissa Temple. I am 40 years old. I am a disability, fibromyalgia, chronic illness and Disney blogger. I am married and have 1 child. I had a blog called HappyFibroGirl but wanted to do more than fibro. So with my husband of 19 years we started Disabled Disney.
Chronic illness(es)/disabilities I have…
Osteo-Arthritis, Fibromyalgia, Depression, Anxiety, Type 2 Diabetes, Asthma, Endometriosis.
My symptoms/condition began…
I had arthritis symptoms in my 20’s but wasn’t diagnosed until my 30’s. My fibro symptoms really started after having knee surgery and a hysterectomy from severe endometriosis.
My diagnosis process was…
I went to my primary care and told her about all my pain. She said she was pretty sure I had fibromyalgia. She sent me to pain management. The pain management doctor agreed.
The hardest part of living with my illness/disabilities is…
Not being able to do everything I used to be able to do. I can’t hardly walk or stand anymore. I used to dance, hike, swim, and do so many physical things! I used to be a Certified Nursing Assistant (CNA) but I had to stop because I couldn’t stand anymore for long periods.
A typical day for me involves…
Medications when I wake up..doing some posting on social media for my blog..and eating breakfast…then a nap…then more meds and some more work on my blog and lunch…then another nap…then some more work on the blog if I’m feeling up to it…then more meds and dinner….then watching tv until bed….then more meds…then bed…
The one thing I cannot live without is…
My husband, my cell phone and my muscle relaxers. My husband is my reason to keep pushing and going, he is my light in the dark and the love of my life. My cell phone is where I do a lot of my blog stuff. It also keeps me connected to the outside world when I am very isolated at home. My muscled relaxers…if I don’t take them I can’t move.
Being ill/disabled has taught me…
Really enjoy everything because you may not always have it and you won’t know your about to lose it!
What advice would I give someone recently diagnosed…
Be an advocate for yourself. Yes the doctors have gone to school but you know yourself and you have to live your life…they don’t.
My support system is…
My hubby, my daughter and all my fibro friends on Facebook and my blogger friends on Twitter.
If I had one day symptom/disability-free I would…
I would dance, go hiking, run and jump…I would go walking around a mall….I would volunteer and be out!
One positive of having a chronic illness/disability is…
It’s time for the annual series I run on There Is Always Hope called Interview October. I have spent time asking questions about health conditions that these amazing people are living with, and their replies help bring education and hope to my readers.
Today, we’re meeting my dear friend Michelle Curtis who runs the blog site The Zebra Pit. Let’s hear her story!
Include a photograph of yourself:
Introduce yourself and tell us a bit about you…
Hello! I’m a 47 year old queer disabled woman living in greater Cincinnati. I live a housebound life due to my conditions. Though I am completely disabled by my conditions, I work from home doing freelance writing and managing two websites. Lately, I’ve been working on reviving my creative writing career as a poet and fiction writer, as I’ve managed to improve my cognitive deficits enough to go back to writing and editing some shorter works.
I have been happily married for over 13 years and have a grown stepson whom I love very much, but get to see very little. I am an avid fan of the arts (both high brow and pop), music and nature and consider myself a lifelong learner. I am a huge fan of sci-fi and fantasy, love to learn about astronomy, archeology and science, and spent much of my life protesting the abuse of marginalized peoples and our planet.
I hold a BA in women, gender and sexuality studies with minors in ethnic studies and creative writing and a master of fine arts degree in creative writing. Prior to becoming disabled by my conditions, I worked as everything from a cab driver to a college instructor and have experience in the fields of education, communications, business administration, human resources, healthcare and non-profits, not to mention my illustrious career in retail and banking prior to going to college.
One fascinating fact about me is:
This is always a hard question for me. I think all people are fascinating when you get to know them. I guess the thing that people are usually fascinated the most with is that almost nothing about me is considered conventional: I have disabling genetic disorders, I am neurodivergent, atheist yet spiritual, pansexual and feminist.
Chronic illness(es)/disabilities I have…
I am what is known as a Trifecta Zebra, as I have a trio of rare illnesses that are often seen together; Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). I also have gastroparesis, IBS, Fibromyalgia, ME/CFS, Dystonia, cognitive dysfunction with significant memory loss (both long and short term), coronary arterial spasm, degenerative disc disease, osteoarthritis, CRPS in my right leg, endometriosis, and intractable migraine. I strongly suspect and am seeking diagnosis for chairi and/or craniocervical instability and autism.
My symptoms/condition began…
As a child, though my symptoms wouldn’t become really apparent until early adulthood.
My diagnosis process was…
Fraught with misdiagnoses and errors. Despite my many health problems which I reported to every doctor, I was not diagnosed with EDS until I was almost 45. I was first diagnosed with fibromyalgia around age 40 and CSF a couple of years later. A couple of years after that, I was diagnosed with POTS. I had to find EDS and MCAS, figure out that I had them and then find doctors to diagnose and begin treating them.
The hardest part of living with my illness/disabilities is…
The cognitive dysfunction. I had developmental delays as a child and everyone thought I was just plain stupid and wouldn’t do much in life. I had terrible self-esteem and no faith in my abilities. I didn’t figure out I was probably pretty smart until my mid-twenties and finally went to college because I simply couldn’t manage doing the only sorts of jobs I could get, those with a high level of physical labor.
I spent years working toward a career I thought would save me and that I loved more than I could ever imagine allowing myself to love anything. By the time I was done, I no longer had the cognitive ability left to actually do the work I’d been trained for, even if I could find ways to accommodate my deteriorating tissues.
I’m glad I’ve found new things to consume my life with and I can’t say I regret the journey. But the knowledge that I could have had a brilliant career had I the capacity to go on is sometimes too much psychic pain to bear. These days I try very hard to focus on what I can accomplish and find focusing on the present helps me to avoid these hard truths.
A typical day for me involves…
I like to say I live on tilt, because I quite literally have to. If I spend too much time in the upright position, I suffer terrible pain and cognitive symptoms and sometimes have seizures. If I’m flat on my back, I develop pain in the back of my head. So I spend much of my day tilted back in a recliner, working on my blogs and writing, trying to avoid the pain caused by being completely upright or completely prone.
Most of my time spent upright is to cook (I cannot tolerate processed foods at all), do therapies and keep up my movement routines of recumbent bike riding and strengthening exercises. In the evening, I try to relax in front of the TV or with a good book.
The one thing I cannot live without is…
Myofascial therapy! I’d be in so much pain if not for it!
Being ill/disabled has taught me…
Never to judge other people’s lives or make assumptions about why someone does something.
My support system is…
My husband is my primary source of support, but we both have chronic health conditions so things can get pretty hairy from time to time, but we usually manage! The remainder of my support comes from within the chronic illness/spoonie community.
I know there are any number of people I can turn to for emotional support or needed advice regarding my health and wellness. I would be lost without them, as I have few others in my life.
If I had one day symptom/disability-free I would…
It would be a lot like Ferris Buehler’s Day Off without the teen angst! A great deal of sightseeing, dancing and celebrating of life, topped off by an exciting and romantic evening of a show, an amazing dinner, more dancing and a carriage ride around Fountain Square.
One positive of having a chronic illness/disability is…
It’s made me take responsibility for my mental health and taught me what real support looks like, allowing me to walk away from all the toxic people in my life.
One final thing I want people to know is:
No matter how bad things get, there’s always the possibility that things will get better, as long as you keep fighting. I spent years so inundated by symptoms and disabled by my health that I could no longer see the point of living. I nearly took my own life.
I’m so glad I managed to pull myself out of that deep depression, because it turns out I have quite a lot of life left in me. How did I succeed? I started saying yes to anything that I thought could help, searching exhaustively for solutions. It worked! I found my correct diagnoses and ways to treat my pain and symptoms that affords me a life I can live with.
Now I also have some joy and a sense of my own strength. I may not have beat chronic illness, but I am doing a pretty good job of not letting it defeat me and helping others to also find things to help them.
https://mykiewritesit.blog a site to display my writing services, poetry and short stories, and discuss writing and blogging strategies and techniques.
Fibromyalgia is a condition that consists of widespread muscle pain, cognitive failures and fatigue. Because there is no standard blood test or other medical test to identify Fibro, doctors rely on Patient stories and history to make a determination, along with using the “tender point” test.
When you have Fibromyalgia, there are particular tender points that may be inflamed in 18 areas of your body. If you have pain in 11 of these areas, you are considered to have Fibromyalgia.
What happens if you are experiencing symptoms of Fibromyalgia but you DON’T have the tender points? It could be that something else is going on in your body that isn’t Fibro but is a different condition all together.
Here are some of the conditions that can mimic Fibro and a brief description of what each of them are:
Conditions
1. Multiple Sclerosis
MS is currently classified as an autoimmune disease of the central nervous system (brain, spinal cord). The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. If damage to myelin is slight, nerve impulses travel with minor interruptions; however, if damage is substantial and if scar tissue replaces the myelin, nerve impulses may be completely disrupted, and the nerve fibres themselves can be damaged.
MS is unpredictable and can cause symptoms such as extreme fatigue, lack of coordination, weakness, tingling, impaired sensation, vision problems, bladder problems, cognitive impairment and mood changes. Its effects can be physical, emotional and financial. Currently there is no cure, but each day researchers are learning more about what causes MS and are zeroing in on ways to prevent it.
2. Lupus
Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include:
Fatigue
Fever
Joint pain, stiffness and swelling
Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
Skin lesions that appear or worsen with sun exposure (photosensitivity)
Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
Shortness of breath
Chest pain
Dry eyes
Headaches, confusion and memory loss
3. Arthritis
Arthritis is the swelling and tenderness of one or more of your joints. The main symptoms of arthritis are joint pain and stiffness, which typically worsen with age. The most common types of arthritis are osteoarthritis and rheumatoid arthritis.
Osteoarthritis causes cartilage — the hard, slippery tissue that covers the ends of bones where they form a joint — to break down. Rheumatoid arthritis is a disease in which the immune system attacks the joints, beginning with the lining of joints.
Uric acid crystals, which form when there’s too much uric acid in your blood, can cause gout. Infections or underlying disease, such as psoriasis or lupus, can cause other types of arthritis.
The most common signs and symptoms of arthritis involve the joints. Depending on the type of arthritis you have, your signs and symptoms may include:
Pain
Stiffness
Swelling
Redness
Decreased range of motion
4. Complex Regional Pain Syndrome
Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.
The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.
The key symptom is prolonged severe pain that may be constant. It has been described as “burning,” “pins and needles” sensation, or as if someone were squeezing the affected limb. The pain may spread to the entire arm or leg, even though the injury might have only involved a finger or toe. In rare cases, pain can sometimes even travel to the opposite extremity. There is often increased sensitivity in the affected area, known as allodynia, in which normal contact with the skin is experienced as very painful.
People with CRPS also experience changes in skin temperature, skin color, or swelling of the affected limb. This is due to abnormal microcirculation caused by damage to the nerves controlling blood flow and temperature. As a result, an affected arm or leg may feel warmer or cooler compared to the opposite limb. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red.
Other common features of CRPS include:
changes in skin texture on the affected area; it may appear shiny and thin
abnormal sweating pattern in the affected area or surrounding areas
changes in nail and hair growth patterns
stiffness in affected joints
problems coordinating muscle movement, with decreased ability to move the affected body part
abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.
5. Depression
Depression is a mood disorder that causes a persistent feeling of sadness and loss of interest. Also called major depressive disorder or clinical depression, it affects how you feel, think and behave and can lead to a variety of emotional and physical problems. You may have trouble doing normal day-to-day activities, and sometimes you may feel as if life isn’t worth living.
More than just a bout of the blues, depression isn’t a weakness and you can’t simply “snap out” of it. Depression may require long-term treatment. But don’t get discouraged. Most people with depression feel better with medication, psychotherapy or both. Although depression may occur only once during your life, people typically have multiple episodes. During these episodes, symptoms occur most of the day, nearly every day and may include:
Feelings of sadness, tearfulness, emptiness or hopelessness
Angry outbursts, irritability or frustration, even over small matters
Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports
Sleep disturbances, including insomnia or sleeping too much
Tiredness and lack of energy, so even small tasks take extra effort
Reduced appetite and weight loss or increased cravings for food and weight gain
Anxiety, agitation or restlessness
Slowed thinking, speaking or body movements
Feelings of worthlessness or guilt, fixating on past failures or self-blame
Trouble thinking, concentrating, making decisions and remembering things
Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
Unexplained physical problems, such as back pain or headaches
6. Lymphoma
Lymphoma is cancer that begins in infection-fighting cells of the immune system, called lymphocytes. These cells are in the lymph nodes, spleen, thymus, bone marrow, and other parts of the body. When you have lymphoma, lymphocytes change and grow out of control.
There are two main types of lymphoma:
Non-Hodgkin: Most people with lymphoma have this type.
Hodgkin
Non-Hodgkin and Hodgkin lymphoma involve different types of lymphocyte cells. Every type of lymphoma grows at a different rate and responds differently to treatment.
Warning signs of lymphoma include:
Swollen glands (lymph nodes), often in the neck, armpit, or groin that are painless
Cough
Shortness of breath
Fever
Night sweats
Fatigue
Weight loss
Itching
7. Growing Pains
Growing pains are recurring pain symptoms that are relatively common in children ages 3 to 12. The pains normally appear at night and affect the calf or thigh muscles of both legs. The pain stops on its own before morning. Growing pains are one of the most common causes of recurring pain in children.
Growing pains usually cause an aching or throbbing feeling in the legs. This pain often occurs in the front of the thighs, the calves or behind the knees. Usually both legs hurt. Some children may also experience abdominal pain or headaches during episodes of growing pains. The pain doesn’t occur every day. It comes and goes.
Growing pains often strike in the late afternoon or early evening and disappear by morning. Sometimes the pain awakens a child in the middle of the night.
Consult your child’s doctor if you’re concerned about your child’s leg pain or the pain is:
Persistent
Still present in the morning
Severe enough to interfere with your child’s normal activities
Located in the joints
Associated with an injury
Accompanied by other signs or symptoms, such as swelling, redness, tenderness, fever, limping, rash, loss of appetite, weakness or fatigue
Conclusion
As you can see, there are several conditions that can mimic the symptoms of Fibromyalgia, which is why it’s important to see your doctor as soon as possible, to get the proper diagnosis. Don’t let pain linger…if something doesn’t seem right in your body, get it checked out. Remember,
I want to talk about a difficult subject today…Chronic Pain and Addictions. When you live with Chronic Pain, you can find yourself spiraling in a dark hole. Sometimes depression becomes as big of a problem as the physical pain you live with, and in a desperate need to feel better, you find yourself turning to your medications too often, or you resort to drinking or eating as a way of filling the gap.
Addiction is easy to fall into, as often, you are not receiving adequate treatment for your pain to begin with. You find yourself taking your medictions sooner than directed, or you take more than recommended and then suddenly, you’re in withdrawal at the end of the month when your prescription has run out.
Instead of abusing your pain medications, you may turn to alcohol to increase the “buzz”, or food may become the drug of your choice. “Anything to dampen the pain” is what you might be thinking, and sometimes, it works. Other times, it feels like nothing can fill the unending gulf of pain you live with and so your depression deepens and you’re left feeling worthless. Thoughts of suicide may plague you but you resist telling others for fear they will see you as weak.
Let’s examine this problems in more detail.
Medications
Opioid abuse is an epidemic in the United States. In 2016, approximately 11.5 million Americans 12 years and older misused opioid pain medications, and 1.8 million had a substance use disorder involving prescription pain medications. From 2000 to 2015, more than 500,000 persons died from opioid overdoses, with deaths generally increasing as prescription opioid sales increased. In 2012, clinicians wrote 259 million prescriptions for opioids, enough for every U.S. adult.*
There are a variety of medications that are used in the treatment of Chronic Pain. As you probably know, there is a current push from to cut back on Opioids like Oxycodone and Hydrocodone because of perceived over-prescribing and the number of deaths linked to the mis-use of Opioids. The number of deaths from illegal Fentynal overdoses has increased dramatically, yet the people who actually require the drug for their Chronic Pain are being turned away by their physicians or are having their dosages cut back significantly.
PreGabalin, Gabapentin, and mixed drugs like Tramacet (Tramadol and Acetaminophen) are now being used more frequently, but not always to great benefit. This is one of the reasons the use of illegal Fentynal is increasing – people aren’t getting adequate relief from their doctor-prescribed medications and so they’re looking to the streets for solutions.
Alcohol
Throughout the ages, people have used alcohol to manage their pain. A swig of whiskey after a bullet wound in the old Westerns, or to numb the pain of a teething baby are two minor examples. A study done recently showed that 28% of people with Chronic Pain used alcohol to help control their pain**
Although alcohol has been shown to reduce pain, it’s a temporary solution and has potential and possible fatal risks. When you drink, you are more likely to abuse your prescription medications, resulting in furthering the sedative effects of both. You also increase the possibility of liver damage or gastric bleeding. Using alcohol as a pain medication often ends up with exceeding the recommended amount that you should drink and overdose of alcohol and/or prescription medications can be fatal.
Other points to note:
Withdrawal from chronic alcohol use often increases pain sensitivity which could motivate some people to continue drinking or even increase their drinking to reverse withdrawal-related increases in pain.
Prolonged, excessive alcohol exposure generates a painful small fiber peripheral neuropathy, the most common neurologic complication associated with alcoholism.
Food
When a person is unable to control the amount of pain they live with, they may turn to food instead, as a way of finding relief. It doesn’t take away the pain, but satiating yourself gives back the illusion of that control that you’ve lost elsewhere. Anorexia and bingeing/purging become huge risks and lead to further medical problems.
Anorexia is the elimination of food from the diet, until your calorie intake is grossly under the recommended daily allowance for health. It is a psychological and potentially life-threatening eating disorder.
There are a multitude of health risks involved including mood swings, low blood pressure, heart problems, kidney and liver issues, loss of bone density and the very real possibility of death.
Bingeing and purging causes issues such as gastric problems, dental issues from vomiting and bile wearing at the teeth and gums, dehydration and depression issues. The use of excessive laxatives is hard on your bowels and runs the risk of chronic constipation, resulting in a Catch-22 of needing to use more laxatives to alleviate the constipation.
Excessive Exercise is another form of purging. By engaging in obscene amounts of exercise, you expose yourself to potential damage to your joints from overuse, dehydration, weakness and potential heart issues.
Other Addictions
Other addictions to be careful about including smoking, gambling, shopping and sex although I’m sure you can think of even more. Each of these excessive behaviours can lead to damaging consequences so it’s imporant to be aware of them. When you live with Chronic Pain, you can have an “all or nothing” mentality – you simply want to do anything that will help you focus on something other than hurting.
What Next?
The first step to any of these issues is to accept that you have a problem. Professional help is required to allow you to wean off of the drugs or alcohol, or to start a healthy relationship with food.
Support groups are available both in person and online and are highly recommended. To be with people who have gone through the same experiences as you have can be very comforting.
A Pain Management program may be suggested to help you get to the root of your problems, and to help you find solutions to managing your pain more effectively.
Talk to your family physician to start. Now is the time to be honest about what you’ve been going through and how you’ve been coping (or not coping). Accept that seeing a counsellor on a regular basis may be a requirement for your success. Having a safe place to talk goes a long way in setting goals for yourself and achieving them.
Ask about specific books that may help you understand Chronic Pain more completely. Knowledge is power.
Finally, realize that you are not a bad person. You may have made some bad choices, but recognizing them and changing them is what’s important. We all make mistakes, and even if you think you’re the worst person in the world…you’re not. You have value and worth and are deserving of the best care possible. Remember,
I am featuring another guest post from my friends at MadebyHemp.com. This article first appeared on their website.
2018 was the year we saw a strong surge of mental health awareness. The public’s focus on health broadened to also include taking care of one’s mental and emotional health. People have finally realized that one of the keys to maintaining a healthy body is to have a healthy mind.
Throughout 2019, mental health awareness will continue to be one of the bigger focuses on overall well being. Learning a few habits that will promote and improve your mental health will be a great start to your fabulous year.
1. Exercise
The secret to a sound body is a sound mind. But it could also work both ways. The secret to a sound mind is a sound body. It might not work for everybody, but for a majority of able-bodied people, a great way to boost endorphins is to go out and move. Find an exercise that you love. You don’t need to do what everyone else is doing. Some people prefer lifting weights, some like yoga, some even run marathons. Find that one exercise you want to stick with and run with it.
2. Gratefulness
Being thankful for the things you have instead of focusing on the things you don’t is a good way of bringing positive energy into your life. It will, more importantly, make you realize you are lucky to have the things you do. Practicing the habit of being grateful will help you become a more positive person.
3. Be kind
Be the person you wish other people would be to you. Make someone’s day by smiling at them, or helping them carry a heavy load, or even just opening the door for someone who has their hands full. A bit of kindness paid forward will cultivate a world of kindness. It doesn’t take much to make others smile.
4. Sleep
Get enough sleep. Sleep can do wonders for a tired mind and body. Don’t overdo it though. Get the right amount of sleep in order to feel rested and ready to tackle your day, every day. Put your screen away close to bedtime and concentrate on relaxing. Give your body and mind the time to recover and recuperate.
5. Hang out with friends
Socialize. Even the most introverted person has someone they prefer to hang around with. It does wonderful things to your soul to share your time with the people that matter.
6. Chocolate
Better yet, try Therapeutic Chocolate with Cannabidiol (CBD) oil. Cannabinoids are non-psychoactive and can reduce anxiety. If you are looking to incorporate CBD into your diet, but is not very much of a fan of its earthy taste, chocolate is the way to go. Cannabinoids are found to keep the body in neutral state, and support the functions of the brain, as well as the central and peripheral nervous system. Get your chocolate fix for the day, and get CBD’s benefits while you’re at it.
7. Laugh
When they said laughter is the best medicine, they were not kidding. Laughter helps ease stress and anxiety. Hang out with a funny friend, or watch a comedy show. Or maybe learn a few jokes and share them with your friends. Laughter is one of those things that multiply when shared.
8. Eat well
A few desserts won’t hurt you any but for the most part, feed your body the things it should be fed. Eat a healthy and balanced diet. This will ensure your body will feel healthy and will give you less things to stress or worry about. Avoid things that will harm your body like smoking or excessive drinking.
9. Love yourself
Tell yourself something nice every day. Most people are generous with giving away compliments to others but are stingy when it comes to themselves. Start your day by giving yourself a sincere compliment. It could be something simple like “oh my skin looks very nice today”. Or “I do make an amazing omelet.” And develop this into a daily habit. Because loving yourself will allow you to love others more freely.
10. Meditate
Give your mind a chance to empty itself out of the negative energy that is pervasive in the world. Give your mind the space to breathe and relax. And as you relax your mind, you relax your body. Meditation is a great way to connect your mind and your body into one plane. It is a good way to relax and to relieve yourself of any stress that you may have. Meditation also complements therapy.
What does the word meditation mean to you? When you hear it, what is the first thing you think of? Someone sitting with their legs crossed, going “ommmmm”? Someone doing yoga? A different culture or religion?
Mindfulness meditation can have many meanings, but ultimately, it’s a way of connecting with yourself. It’s a mental training practice that involves focusing your mind on your experiences (like your own emotions, thoughts, and sensations) in the present moment. Mindfulness meditation can involve breathing practice, mental imagery, awareness of body and mind, and muscle and body relaxation.
So what does mindfulness meditation have to do with Chronic Pain? Well, it’s a way of focusing on your body and using the relaxation techniques to reduce pain and tension. With the right amount of practice, you can utilize meditation to counteract against various types of pain including joint pain and nerve pain. Here are some tips and tricks to help you.
Getting Started
Learning mindfulness meditation is straightforward, however, a teacher or program can help you as you start (particularly if you’re doing it for health purposes). Some people do it for 10 minutes, but even a few minutes every day can make a difference. Here is a basic technique for you to get started, from the website Very Well Mind:
1. Find a quiet and comfortable place. Sit in a chair or on the floor with your head, neck, and back straight but not stiff.
2. Try to put aside all thoughts of the past and the future and stay in the present.
3. Become aware of your breath, focusing on the sensation of air moving in and out of your body as you breathe. Feel your belly rise and fall, and the air enter your nostrils and leave your mouth. Pay attention to the way each breath changes and is different.
4. Watch every thought come and go, whether it be a worry, fear, anxiety or hope. When thoughts come up in your mind, don’t ignore or suppress them but simply note them, remain calm and use your breathing as an anchor.
5. If you find yourself getting carried away in your thoughts, observe where your mind went off to, without judging, and simply return to your breathing. Remember not to be hard on yourself if this happens.
6. As the time comes to a close, sit for a minute or two, becoming aware of where you are. Get up gradually.
Learning how to breathe sounds so simple, but many of us don’t do it properly. We tend to breathe from the chest instead of the diaphragm, which leads to shallow breaths. Deep belly breathing is preferable and can be easily learned. Try breathing in tune with this Hoberman Sphere:
Guided Meditations
Guided meditations can be an excellent resource to help you connect the mind and body. The good people at Mindful.org have several excellent starters that you can access right here.
For content specific to Chronic Pain, these videos may be helpful for you:
Just a few minutes a day is all it takes to learn this simple practice, but the benefits can last for much longer. Used in conjunction with heat, ice and medications, you may find Mindfulness Meditation to be just the thing to ease your Chronic Pain, one breath at a time. Remember,
I’m pleased to feature this guest post by Kunal Patel, who works with a brand called Copper Clothing.
Fibromyalgia is a disorder characterized by musculoskeletal pain all over the body. It is often accompanied by fatigue, sleep andmood issues, and cognitive concerns like memory problems. There are several ways to cope with the disorder, from having the right diet to wearing the right clothes.
Here are 5 practical ways to cope with fibromyalgia.
Exercise Regularly
It may seem impossible to exercise when you have fibromyalgia but it is recommended you do. Exercising will help in relieving symptoms of fibromyalgia, especially with the stiffness and restless leg syndrome.
Light exercises and yoga also help in boosting the mood, reducing fatigue, easing the pain, improving blood circulation and improving sleep. You can go for a walk, do strength training, cycling, water aerobics, and swimming.
However, if you are too fatigued, avoid exercisingthat day.
Good Sleeping Habits
The pain and stress can hinder with your ability to sleep. However, sleep is essential to manage fatigue – the biggest symptom of the disorder.
Practice good sleep habits like:
Reduce the noises and intensity of lights in the bedroom
Adopt bedtime rituals like taking a soothing bath or journaling before bedtime
Proper Diet
Your fibromyalgia dietmust include lots of vegetables, fruits, dairy, whole grains, and lean meats. This will improve the overall health, lower weight and energize you. Eliminating sugar, foods containing food additives like MSG, and aspartame will be beneficial.
Wear the Right Clothes
Clothing choices can make a huge difference in managing daily pain and fatigue that comes with fibromyalgia. Those suffering from fibromyalgia suffer from a condition where even the slightest touch can be quite painful. Wearing loose-fitting, non-constricting and lightweight clothing is recommended.
Copper compression clothing is also used to treat fibromyalgia pain and stiffness.This disorder can affect any muscle in the body, however, it is most common in extremities like hands and fingers. Copper compression glovesprovide fibromyalgia hand pain relief due to their properties. They fight inflammation, retain warmth, improve blood flow and restore movement in the hand.
Choose cotton or copper socks as they don’t have chemicals, wick away sweat and fight odors. The latter also help in reducing pain in the legs and feet.
Stay Positive
Living with pain and overcoming fatigue is not easy and it can get exhausting. Your mind may play tricks on you and be stuck in a loop that you are not accomplishing anything. However, it will do you no good to ruminate on those things. It is essential that you stay positive.
Do not focus on the things that fibromyalgia is preventing you from doing as it will make you feel worse. It is alright to have a bad day– just focus on getting through each day and celebrate little victories.
Consult with your doctor about the best pain management techniques. Take one day at a time and this disorder can become a lot more bearable.
Author Bio –
Kunal Patel is a young and passionate entrepreneur, fascinated by the workings of the human body and natural solutions for common health problems. He’s single-minded in his aim to make Copper Defence a brand that’s recognized across the globe, by partnering with global brands to make these high-tech materials easily accessible for everyone.
Today I’m featuring an article by Guest Author Nicole Ross Rollender. Her bio is at the bottom of the page. She’s written an excellent post about Omega-3s and Omega-6s and how important they are for our bodies. When you live with Chronic Pain, you know you need to do everything possible to maintain your overall health, and diet can play a part in that. Read on to see what Nicole has to say:
No doubt you’ve gotten the skinny on good fats (hello, omega-3) from your primary care doctor or nutritionist.
You’ve probably heard this before: Omega-3 fatty acids like EPA (eicosapentaenoic acid) and DHA (docosahexaenoic acid) are found in fish oils from salmon, krill, tuna, trout, mackerel, and sardines, along with oysters and crabs.
Clinical evidence suggests omega-3s like EPA and DHA help reduce risk factors for heart disease, including high cholesterol and high blood pressure, according to the University of Maryland Medical Center.
You’ll find other omega-3s like alpha-linolenic acid (ALA) in flaxseed, oils like canola and soybean, and nuts and seeds such as walnuts and sunflower, according to the Mayo Clinic.
Along with omega-3s, omega-6 fatty acids play a vital role in brain function, and our normal growth and development.
Bottom line: Your body needs fatty acids to function, and they pack some major health benefits.
However, not as many people have heard of omega-6s. Here’s what you need to know to ensure you’re getting enough (but not too much) of this important fat in your diet.
What Are PUFAs?
Here’s a quick chemistry lesson: Like omega-3, omega-6 is a type of polyunsaturated fatty acid (PUFA), a fat molecule containing more than one unsaturated carbon bond. For example, oils (like olive oil) that contain polyunsaturated fats are liquid at room temperature, but start to turn solid when chilled, according to the American Heart Association.
“Omega-6s are essential for a whole host of things: proper brain function, stimulating hair and skin growth, maintaining bone health, promoting normal growth and development, regulating metabolism, and maintaining a healthy reproductive system,” says Laura Ligos, MBA, RDN, CSSD, a Real Food registered dietitian at Albany, NY-based The Sassy Dietitian & Designed to Fit Nutrition.
PUFAs offer heart-health benefits when you eat them in moderation and use them to replace unhealthy saturated and trans fats in your diet, according to the Mayo Clinic.
There are saturated fats in animal-based foods, such as meats, poultry, lard, egg yolks and whole-fat dairy products like butter and cheese. They’re also in cocoa butter, and coconut, palm and other tropical oils used in coffee creamers and other processed foods.
Trans fats, also called hydrogenated and vegetable oils, are in hardened vegetable fats like stick butter – and make their way into crackers, cookies, cakes, candies, snack foods and French fries.
A good rule of thumb is to reduce foods high in saturated and trans fats in your diet. Instead, choose foods that include plenty of PUFAs – but don’t go overboard.
All fats, even good ones, are high in calories – they’re nine calories per gram.
The Omega-6/Omega-3 Ratio
Humans evolved on a diet balanced in omega-6 and omega-3 (1:1 ratio) essential fatty acids, according to the journal Nutrients. Today, though, the ratio for many people is a staggering 20:1, contributing to weight gain and other health issues.
“The ratio between omega-6 and omega-3 in our bodies should stay between 2:1 and 3:1,” Ligos says. “You’re heading into dangerous territory when your omega-6/omega-3 ratio is greater than 4:1.”
Both a high omega-6/omega-3 ratio and a high omega-6 fatty acid intake contribute to weight gain, whereas a high omega-3 fatty acid intake decreases your risk for weight gain, according to Nutrients.
“When there isn’t enough omega-6 in your diet, essential fatty acid deficiency can occur, leading to excessive thirst and skin lesions, as well as more serious issues like stunted growth, skin lesions, a fatty liver, and reproductive issues or failure,” Ligos says.
Conversely, too much omega-6 (and not enough omega-3) can cause inflammatory conditions including heart disease, elevated blood pressure, diabetic neuropathy, autoimmune conditions and more, Ligos notes.
Linolenic acid, often found in vegetable oils, is converted to gamma-linolenic acid (GLA) in the body. GLA is also found in plant-based oils like evening primrose oil, borage oil and black currant seed oil.
“There’s research to support taking a GLA supplement, an omega-6 fatty acid, to reduce inflammation, much unlike all other omega-6 fatty acids,” Ligos says.
The body converts GLA to DGLA, which fights inflammatory conditions, and having enough other nutrients like magnesium, zinc, and vitamins C, B3 and B6, promotes that conversion, the University of Maryland Medical Center says.
Where to Get Your Omega-6
The good news is most of us can get the right amount of omega-6 from a healthy diet alone.
“Omega-6 fatty acids are found primarily in vegetable and plant oils, including safflower, sunflower, grapeseed, corn, cottonseed, peanut, sesame, soybean and canola,” Ligos says.
At one time, researchers believed omega-6 fatty acids metabolized in the body to then inflame and damage artery linings, which could lead to heart disease.
After reviewing the findings, the American Heart Association recommended people eat between 5% and 10% of their daily calories from omega-6 fatty acids.
It’s a good idea to replace saturated fats from foods like meat, butter, cheese and deserts with plant-based foods containing omega-6 fatty acids, including vegetables oils, nuts and seeds is a good first step.
Flaxseed and hempseed oil, nuts, borage oil, evening primrose oil and black currant seed oil, and acai are other healthy sources of omega-6.
About The Author:
Nicole Rollender is a South New Jersey-based editor and writer. Her work has appeared in Good Housekeeping, Dr. Oz The Good Life, Woman’s Day and Cosmopolitan. She’s the author of the poetry collection Louder Than Everything You Love. Recently, she was named a Rising Star in FOLIO’s Top Women in Media awards and is a 2017 recipient of a New Jersey Council on the Arts poetry fellowship. Visit her online at www.strandwritingservices.com; on Facebook or Twitter.
When I first started to blog, I wrote about my total hip replacement because I’d had problems trying to find first-person accounts of undergoing that particular type of surgery, especially for someone who was in their 50’s. Hip replacements seem to be done on mostly older folks (in their 70’s or older) but rarely on the younger set, unless you’ve been born with a hip problem or have suffered a devastating injury.
Because I was only 54 when I had my hip replacement done, I was considered “unusual” by my surgeon (and yes, I’m sure he meant my hip only and not me in general!) so trying to find others in the same position was difficult. I had read enough websites to understand the technical side of the surgery, but I wanted to find out what it was like to actually have the surgery and then recuperate and go on with life.
Since I was unable to find a lot of good information, I decided to write about my own experiences, so others in my position might be able to find what I was looking for. Once I’d written about that, it seemed natural to go on and talk about other health issues I live with and how they impact my life. From there, the blog site grew organically and became what it is now – a place for articles and posts about Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses, such as Lupus, MS, Arthritis, POTs, Ehler’s Danlos Syndrome and more.
The goal has been achieved and I’m proud of what I’ve been able to create with this site. I hope others feel the same.
Compassion
Living with a Chronic Illness is hard work. People with Chronic Pain and Invisible Illness are often left feeling isolated, and when you find someone online who speaks your language, it can be like finding an oasis in the desert.
In addition to educating people, I wanted this blog site to be a place where comments could be left freely, allowing people the opportunity to share what’s going on in their lives in a safe way. When readers have identified with a particular post, their comments reflect their own lives and situations and I take that seriously. I often respond back, not always in the comment section, but in-person to what they’ve said.
My responsibility as a writer is to ensure that not only am I educating people but I’m giving them some hope as well. Life with Chronic Illness is painful physically and mentally and when you find a spot online that reflects your own thoughts and ideas and connects with you, there’s a genuine freeing sensation. You feel less alone in the world and you realize that other people “get it”. Being understood is an amazing feeling and us Chronic Pain Warriors don’t always feel understood.
In many ways, I see writing this blog as another form of volunteering that I do. My focus on health and wellbeing extends beyond this blog site, but I consider the site to be one of service to others.
Like my other volunteer roles, I receive no compensation for producing this site, with the exception of any money I might make with Affiliate Marketing (more about that in a minute). I do this purely because I want to help others who are in Chronic Pain and who feel lost and alone and in need of information that might help make their lives better.
My other volunteer roles include committee work for Surgical Quality Improvement, improving Clinical Resources for Patients such as updating Patient Information Sheets received when you are discharged from an ER and Laboratory Quality Control to ensure that Patients are receiving the best care possible when they are providing lab samples for doctor-ordered tests. I also sit on a Provincial Measurement Working Group that is creating a survey for Patients in British Columbia, Canada to ensure that their care received has been the best it can be.
These roles, together with this blog, give me ample ways to help others, and that brings a lot of happiness to my soul.
My final reason for blogging is purely selfish…I do this for me as well. It’s therapeutic to be able to write about what’s new in health care, or what I’ve been thinking about a certain subject. I love being able to tackle controversial subjects or bring emotional issues to light, such as intimacy when you are Chronically Ill.
I consider myself lucky to be in a position where I can have some influence over others and perhaps introduce them to a treatment they haven’t heard of before. There’s nothing quite as satisfying as hearing back from someone who says “you changed my life” or “I really needed to read this”. It makes up for the research, the typing on days when my hands hurt and the work of coming up with new topics that will be of interest.
If you are a blogger, you understand what I’m talking about. If you are a reader, just let me say that having responsibility for you and what I’m producing for you is an honour I don’t take lightly. I want to make sure you’re getting information that benefits you and your health because I know what it’s like to live with Chronic Illness and I know the types of things that I’d like to read and learn from.
Thank you for allowing me to share these thoughts with you. I appreciate your comments below, or you can always write to me using the Contact Form.
I do this because I love it. I love sharing and helping others and I hope I’m able to continue for a long time to come. Remember…
When you live with Chronic Pain, you often find yourself juggling various mood swings. It’s hard to stay positive when you’re in pain all the time, so here are some quotes to help you stay on track or to turn to when you need to be uplifted.
1. “Keep your face to the sunshine and you cannot see a shadow.”
— Helen Keller
2. “Once you replace negative thoughts with positive ones, you’ll start having positive results.”
— Willie Nelson
3. “Yesterday is not ours to recover, but tomorrow is ours to win or lose.”
— Lyndon B. Johnson
4. “In order to carry a positive action we must develop here a positive vision.”
— Dalai Lama
5. “I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”
— Walt Disney
6. “Positive thinking will let you do everything better than negative thinking will.”
— Zig Ziglar
7. “Pessimism leads to weakness, optimism to power.”
— William James
8. “You can’t make positive choices for the rest of your life without an environment that makes those choices easy, natural, and enjoyable.”
— Deepak Chopra
9. “The thing that lies at the foundation of positive change, the way I see it, is service to a fellow human being.”
— Lee lacocca
10. “Positive thinking is more than just a tagline. It changes the way we behave. And I firmly believe that when I am positive, it not only makes me better, but it also makes those around me better.”
— Harvey Mackay
11. “In every day, there are 1,440 minutes. That means we have 1,440 daily opportunities to make a positive impact.”
— Les Brown
12. “I’m a very positive thinker, and I think that is what helps me the most in difficult moments.”
— Roger Federer
13. “Perpetual optimism is a force multiplier.”
— Colin Powell
14. “Attitude is a little thing that makes a big difference.”
— Winston Churchill
15. “Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so let us all be thankful.”
“Think before you speak. Read before you think.”
― Fran Lebowitz, The Fran Lebowitz Reader
“Keep your face always toward the sunshine – and shadows will fall behind you.”
― Walt Whitman
“Write it on your heart that every day is the best day in the year.”
― Ralph Waldo Emerson
“Do not pray for an easy life, pray for the strength to endure a difficult one”
― Bruce Lee
“Even though you may want to move forward in your life, you may have one foot on the brakes. In order to be free, we must learn how to let go. Release the hurt. Release the fear. Refuse to entertain your old pain. The energy it takes to hang onto the past is holding you back from a new life. What is it you would let go of today?”
― Mary Manin Morrissey
“To handle yourself, use your head; to handle others, use your heart.”
― Eleanor Roosevelt
“Everything in moderation, including moderation.”
― Oscar Wilde
“Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible without surrender, be on good terms with all persons. Speak your truth quietly and clearly, and listen to others, even the dull and ignorant; they too have their story. Be yourself. Especially do not feign affection. Neither be cynical about love – for in the face of all aridity and disenchantment it is perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you from misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world.”
― Max Ehrmann, Desiderata: A Poem for a Way of Life
“Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are.”
― John Wooden
“Dream as if you will live forever; Live as if you will die today.”
― James Dean
“Do all the good you can,
By all the means you can,
In all the ways you can,
In all the places you can,
At all the times you can,
To all the people you can,
As long as ever you can.”
― John Wesley
“Always acknowledge a fault. This will throw those in authority off their guard and give you an opportunity to commit more.”
― Mark Twain
“The way to happiness: Keep your heart free from hate, your mind from worry. Live simply, expect little, give much. Scatter sunshine, forget self, think of others. Try this for a week and you will be surprised.”
― Norman Vincent Peale, The Power of Positive Thinking
“The past is behind, learn from it. The future is ahead, prepare for it. The present is here, live it.”
― Thomas S. Monson
“Run mad as often as you choose, but do not faint!”
― Jane Austen, Love and Friendship
“Sit in a room and read–and read and read. And read the right books by the right people. Your mind is brought onto that level, and you have a nice, mild, slow-burning rapture all the time.”
― Joseph Campbell, The Power of Myth
“Be grateful, be smart, be clean, be true, be humble, be prayerful.”
“Never tell your problems to anyone…20% don’t care and the other 80% are glad you have them.”
― Lou Holtz
“Don’t count the days, make the days count.”
― Muhammad Ali
“Live simply, love generously, care deeply, speak kindly, leave the rest to God.”
― Ronald Reagan
“May I share with you a formula that in my judgment will help you and help me to journey well through mortality… First, fill your mind with truth; second, fill your life with service; and third, fill your heart with love.”
― Thomas S. Monson
“Meditate.
Live purely. Be quiet.
Do your work with mastery.
Like the moon, come out
from behind the clouds!
Shine”
― Siddhārtha Gautama
“In dwelling, live close to the ground. In thinking, keep to the simple. In conflict, be fair and generous. In governing, don’t try to control. In work, do what you enjoy. In family life, be completely present.”
― Lao Tzu
“Being yourself is all it takes. If you want to impress someone don’t be someone else just be yourself.”
― Selena Gomez
“The most important thing to do if you find yourself in a hole is to stop digging.”
― Warren Buffett
“Never lie in bed at night asking yourself questions you can’t answer.”
― Charles M. Schulz
“Before you speak, listen.
Before you write, think.
Before you spend, earn.
Before you invest, investigate.
Before you criticize, wait.
Before you pray, forgive.
Before you quit, try.
Before you retire, save.
Before you die, give.”
― William Arthur Ward
“Think in the morning. Act in the noon. Eat in the evening. Sleep in the night.”
― William Blake, The Marriage of Heaven and Hell
“Breathe properly. Stay curious. And eat your beets.”
― Tom Robbins, Jitterbug Perfume
“It is foolish to tear one’s hair in grief, as though sorrow would be made less by baldness.”
― Marcus Tullius Cicero
Note: This post contains Affiliate Links which pay me a small percentage of your purchase price at no cost to you.
When you live with Chronic Pain, everything you do becomes a new challenge. Working, socializing, taking care of kids and/or a home – you still need to do it all and live your life, but now you have persistant pain as your constant companion. Often, you find yourself compromising or looking for better ways of doing things, so your pain isn’t exacerbated.
One of the areas of life with Chronic Pain which is often not talked about is intimacy and your sexual well-being. These are crucial components of a good relationship, but what happens when pain causes you to withdraw from sexual relations, and intimacy begins to suffer? Let’s talk about some of the reasons this happens and what can be done.
Difficulties with intimacy may stem from various causes, including increased pain during sexual activity, a lack of arousal and accompanying vaginal dryness, the inability to reach orgasm, side effects from the use of opioids and other commonly-used medications (eg, certain antidepressants), a past history of sexual abuse, and issues with communication in general.
Because of Chronic Pain, you may find your overall relationship has begun to suffer. A partner may withdraw from you because they don’t know how to help you. This translates to the bedroom, where they may be afraid to cause you more pain or they’re dealing with their own issues regarding your health. Perhaps your partner has become resentful of the extra burden placed on them with your inability to do certain chores now.
A change in standard routines can be upsetting for everyone and this may cause extra fatigue for you both, which also causes you to withdraw from intimacy. Sleep may be what you crave the most, and when your partner wants to have sex, it’s the last thing on your mind.
So how do you overcome these issues? What do you do to make sex more enjoyable for both of you? Here is an expanded list of ideas from a previous post that might be a good starting point.
Talk. Make a point of talking openly and honestly about what you are feeling. If there is fear about pain, talk about it and what you can do to alleviate any extra. If you feel disconnected from your partner because it’s been a long time since you last were intimate, talk about those feelings and what you’re worrying about. Do you have scars or extra weight that is causing you concern? Be honest about how you feel. It can be very vulnerable to speak the truth, but it often brings you closer to your partner in the long run.
Touch. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
Self-stimulation. Masturbation is a normal and healthy way to fulfil your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active.
Oral sex. It can be an alternative or supplement to traditional intercourse.
Toys. Use of various sex toys can help loosen inhibitions, relax the body and make intercourse more enjoyable.
Different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
Pillows and wedges. Make use of pillows and wedges to help find comfortable positions that alleviate pressure points. A good sex shop can help you find products specifically made for this purpose.
Change your expectations. Because reaching orgasm can be almost impossible when you are on certain medications, you may find changing your expectations for sex will help you enjoy lovemaking more. Don’t make orgasm the ultimate goal…just enjoy sex for what it is – a pleasurable experience.
Ask for what you need. Listen to your body and what it’s telling you during sex. If certain activities make you feel better, do more of that. Lovemaking doesn’t always have to end in intercourse. Oral sex during a lovemaking session may be all that you desire, and there’s nothing wrong with that.
Prepare in Advance. It’s important for people with Chronic Pain to understand that sexual activity often takes a lot of planning. There is not as much spontaneity as there used to be. You may find you need to take your pain medication, apply heat, or stretch before sexual activity. This is also a good time to try increasing your arousal by reading erotica, watching a video, or having your partner give you a massage in the area of your pain.
Timing. Choose a time of day when you have less pain as a time to be sexually active. For some people as the day goes on, the pain gets worse, but the opposite also may be true for others. If you have kids, you may have to sneak away for a quickie, but even that is better than no sex at all. If you can arrange for the kids to be away overnight, it gives you plenty of time to relax and set the stage for intimacy.
Sex is meant to be a natural part of a relationship. Just because you live with Chronic Pain doesn’t preclude you from being able to enjoy lovemaking with your partner. You might want to try some of these products to bring a new spark to your bed (or living room or bathroom or…)
Today’s post is from Guest Author Amanda Lasater. She’s bringing us information on important Lifestyle changes that can help improve your overall health.
For those of us suffering from Chronic Pain, Chronic Fatigue, or an Invisible Illness, it can feel like you’ve tried pretty much everything to improve your mental and physical well-being. Whether we’re trying a new “miracle” treatment in traditional medicine or an “ancient” holistic therapy, it’s easy to simply feel defeated by our illness. And, like with all illnesses, there will likely never be a one-size-fits-all treatment for these conditions – however, there are lifestyles changes that have been shown to significantly help improve the quality of life for those suffering from many of these life-altering illnesses. The following list contains three powerful choices in your day to day life that, over time, can help reduce the physical and mental anguish that comes along with these maladies.
Incorporate CBD Oil Into Your Supplement Regimen
Due to the relatively new popularity of CBD oil, we don’t have enough long-term studies to make any definitive statements about its efficacy as a treatment for chronic pain, fibromyalgia, and other invisible illnesses. However, the studies we do have, combined with personal testimonies, are extremely promising. CBD – short for cannabidiol – is extracted from the cannabis plant, but it does not have any of the psychoactive properties of THC (aka, it doesn’t get you “high”). Currently, it is being used for a large number of medical purposes, including:
So far, CBD has been shown to help with three major symptoms of many invisible illnesses: pain, anxiety, and insomnia. And for many suffering from any of these conditions, relief from even just one of these symptoms would significantly improve their quality of life. We recommend that you research CBD and your specific illness to identify all the potential benefits and decide upon which brand and dosage is best for you.
Address Your Microbiome And Gut Health
The gut “microbiome” is what we call the highly important collection of more than 100 trillion microscopic organisms, or microbiota, that live inside our gastrointestinal tract. These organisms, which include bacteria unique to your body, play a vital role in our health by contributing nutrients and energy, protecting against infection, and supporting the immune system. In addition, we’ve discovered that these trillions of bacteria in our gut communicate directly with the neurons in our brains. More and more studies have found a link between the condition of the microbiome and many illnesses including:
Inflammatory Bowel Diseases (IBD)
Fibromyalgia
Depression
Anxiety
Chronic Pain
Autoimmune disorders
Often accompanying gut dysbiosis is an overgrowth of candida (a fungus or yeast), which releases toxic byproducts into your bloodstream and causes a host of unpleasant symptoms. Many doctors report that most fibromyalgia sufferers have had Candida overgrowth. The bottom line is that the gut biome is essential to our health – and addressing and improving your gut health can improve many symptoms of invisible illnesses. The best ways to improve your gut bacteria include eating probiotic foods, eating fiber and prebiotics, avoiding antibiotics (unless absolutely necessary), quitting smoking, reducing alcohol intake, avoiding excessive sugar consumption, exercise, and eating gut-friendly foods like bone broth.
Start An Elimination Diet To Identify Food-Related Health Issues
The food you’re eating may be the cause of many of your symptoms. For example, gluten has been linked to over 55 diseases. In fact, the major symptoms of gluten intolerance are neurological – not digestive. These common symptoms include:
Chronic pain
Chronic fatigue
Depression
Cognitive impairment
Sleep disturbances
Gluten intolerance is identified as one of the possible root causes of fibromyalgia by many practitioners of functional medicine – a branch of medicine that aims at treating the underlying cause of an issue instead of the symptoms. The best way to identify if you have any allergies or intolerances is to start an elimination diet and introduce foods one at a time.
While we have all felt defeated by our illnesses, we’ve also learned the importance of always keeping our head up and moving forward. We’re here to tell you that you’re not alone – use these three lifestyle changes to drastically improve your quality of life and “keep on swimming.”
About The Author
Amanda Lasater is on the editorial and research team at MattressAdvisor.com, a mattress reviews site with the mission to help each person find their best sleep ever.
There has been much talk about the use of Cannabis for treating Fibromyalgia and other Invisible Illnesses. I recently featured John Martinez from Axon who wrote about using CBD Oil for treating migraine headaches. Today I want to share various ways you can use CBD Oils to obtain optimum health.
While there are many cannabinoids in the plant, THC and CBD are the ones “in charge” for fighting pain and inflammation. What about Hemp? Hemp has some very mild “anti-pain” properties, its use is best suited in other applications. This article by Cannadish gives an excellent breakdown of all three components.
So how do you use Cannabis to help with a medical condition like Fibromyalgia or MS or arthritis?
As an example, a Cannabis-infused Topical lotion can be applied to the skin on the areas affected by your health condition, but having a bath is a great solution to have your whole body relax with cannabis oil. It’s especially great before going to bed. One easy way to do this is by making cannabis-infused bath bombs.
The Process
INGREDIENTS
100mg CBD from the dealer of your choice*
1 tablespoon olive oil or coconut oil.
1 cup baking soda
1/2 cup Citric Acid (can be purchased at any soap making store)
1/2 cup Epsom Salt
1/2 cup corn starch
1 teaspoon water Food colouring of your choice
Your choice of essentials oils 30-40 drops
INSTRUCTIONS
Place the dry ingredients in a large bowl and mix together with a whisk.
In a small bowl, mix the liquid ingredients together, including the CBD oil until well blended.
In the large bowl, very slowly add the liquid mixture to the dry ingredients a little bit at a time. The mixture should hold together when squeezed without crumbling.
When well mixed, pack the mixture into your bath bomb mould and pack tightly, then let it dry. Make sure you work quickly so the mixture doesn’t dry out in the process.
Bath Bombs need a full day to fully harden. If they’re not quite hardened enough, they may crumble when you handle them, so check to make sure before taking them completely out of the mould
Makes one good size bath bomb, or several smaller if you are using smaller moulds
*Note: Depending on the strength of the CBD oil you have, the volume (drops or ml) of oil needed for this recipe will vary. For instance, an oil containing 1mg CBD per drop will require 100 drops. Having trouble calculating? Try this CBD oil calculator.
To use your new bath bomb, simply add to a tub of warm, almost hot water and relax for 20 minutes (min).
Other Forms Of Use
The Patch
Cannabis can be used in other forms as well. Some companies have been selling a Patch. Like the patch used for the diabetic nerve pain treatment, it provides the patient with a controlled release of the medication:
Through a porous membrane covering a reservoir of medication.
Body heat melting thin layers of medication embedded in the adhesive which will contain high potency cannabinoid (CBD) extract. This extract slowly enters the bloodstream and then penetrates the central nervous system of the patient thus delivering the pain relief sought.
Edibles
This excellent article talks about Cannabis Edibles and the many ways you can enjoy the benefits of this particular form of consumption. Instructions are given as to dosage, benefits, side effects and more, and it also contains a bit of history as to how edibles came to be so popular.
The author and I share very similar views that all these forms of ingesting Cannabis are beneficial to those who suffer from Fibromyalgia, MS, Lupus, Arthritis, and more.
I recommend finding a store near you where you can begin a relationship with the staff to get all your questions answered. Many US States are now allowed to sell legally and Cannabis is legal in Canada as well.
Get to know the staff, let them show you their favourite products and ways to use Cannabis, and before you know it, you’ll hopefully be finding the relief you’ve been seeking. No, Cannabis doesn’t work for everyone (in fact, I’ve tried it myself and am one of the people that it does nothing for!). Don’t get discouraged right away…try other forms such as the bath bomb if an edible didn’t work for you, or vice versa.
Cannabis is NOT a miracle cure, but when it works, it can really bring relief to an overwhelmed body. I hope you find this to be true in your case. Remember…
If you live with Chronic Pain, or know someone who does, you probably know that there’s a lot that is missing from life. Chronic Pain is a thief – it takes from so many areas of your existance, but rarely gives back. I want to talk about this in more detail, so we can hopefully find ways of fighting back.
Chronic Pain affects every aspect of your health, from the conditions that cause the pain to your everyday normal functions. Moving, exercising, taking care of the house or children…all of these are extremely difficult with Chronic Pain and often something has to suffer in order to get through each day. Perhaps you use more processed foods in your cooking instead of “from scratch” meals. Maybe the laundry goes unwashed for another day so you can spend time with your kids. Whatever the situation for you, you still have to deal with the fact that Chronic Pain has changed your daily life.
Chronic Pain Robs You Of Your Sleep
Painsomnia is the term used for Insomnia that is caused by pain. When you can’t sleep, you effectively lose your ability to function well the next day. Pain at night keeps you from getting the refreshing REM sleep that is so necessary to repairing the body.
There are medications that you can take to enhance your sleep, but they often don’t work and even when they do, you can end up groggy in the morning and feeling “hungover”. That feeling, combined with pain, makes for a difficult day indeed.
Chronic Pain Robs You Of Contributing To Society
If you live with Chronic Pain you may find that you have to give up your job or hobbies in order to function. It can be very demoralizing to leave a career you love or a job that you’ve worked at for an extended period of time. I went on disability in 2009 because pain and brain fog robbed me of the essential skills I needed to do my job well. I was at the top of my career as an Administrative Specialist and Event Planner, and was working at a great company with lots of potential for my future.
After too much time taken off because of health issues, I realized I wasn’t doing anyone any favours by staying at work, so went on short term disability that ultimately ended up becoming long term disability. I was devastated to leave work, but my HR team was helpful and encouraging and made the process easy for me. It took me awhile to realize I was never going to be able to go back to work, but oh, how I cried when it finally hit me.
If you are a volunteer or have special hobbies, you may find you’ve had to give them up as well. It’s hard to watch the world go on while you’re stuck in limbo. Even when you push yourself to maintain a working life or hobbies, you still have to deal with the reality of pain on a daily basis and that makes everything more difficult to manage.
Chronic Pain Robs You Of A Social Life
Living with Chronic Pain makes it hard to socialize with others. When you’re no longer involved in your regular activities such as work or hobbies, you tend to not be invited out to social gatherings with the gang. Even when you are invited, you may struggle to attend functions, or if you do attend, you pay the price for days (or weeks) afterwards.
Sometimes it’s easier to say no to something, knowing how you will end up feeling, but doing so puts you at risk of not being invited to events in the future. It’s a Catch-22 and there is no right answer for how to manage.
If you are in a relationship, Chronic Pain can rob you of the companionship you used to enjoy with your partner. You may have given up work or hobbies, so you have less to talk about, and it’s hard to hear how well someone else is doing when you’re suffering on your own. Sex can become painful and thereby less frequent and intimacy starts to dwindle – even just cuddling can cause discomfort.
You may find your list of friends depleted because no one has time for you anymore. You’re not the same funny outgoing person you were and other people get tired of hearing about your struggles. When you have nothing new to add to the relationship, it slowly begins to die off and the effort of maintaining friendships becomes too much. Especially if you’re not able to go out and socialize like you did in the past.
So how do you manage life with Chronic Pain? How do you navigate this new world that you live in?
Some people find that Chronic Pain strengthens their faith and seek solace with the religion they practice. I personally find that prayer really helps me when I’m struggling – I remember all that Jesus went through in His life and it puts things in perspective for me.
You may find that while you’re no longer able to work, you can manage some volunteer activity based on what it is, and what is being asked of you. I belong to 4 different committees that all have a health focus, but the time requirement for each is minimal. I’m able to attend meetings online when they happen and while I do travel to a different city for one of the meetings, getting out for the day/overnight can be refreshing for the time, even though I know I’ll pay for it later. Just being with grownups discussing how to solve problems helps me realize my brain isn’t dead and I still have a lot to contribute.
If you are no longer working, you may find yourself in a position where you can start a activity for the first time, or devote more time to a long-standing hobby. Even if you’re only able to start reading more or colouring or knitting, it’s something you weren’t able to manage before and that can be empowering. Learning a new hobby doesn’t have to be expensive or difficult, it just needs to be something that brings you joy.
When it comes to socializing, you may be happy to give up a whirlwind of activity and discover that you’re a homebody after all. Perhaps you invite people over to your place more often, instead of going out. You’re able to set the pace which helps you manage your Chronic Pain in a better way.
Chronic Pain is a thief, there’s no doubt about that, but with careful planning, you may be able to trap that thief and get back what’s been taken from you. A cheerful and positive spirit can go along way in helping with that. There’s simply no point in wallowing about the negatives in life as it serves no purpose and only makes you more miserable. Don’t let Chronic Pain rob you of your essential being. Fight back and try to find ways to incorporate joy into your life again. It’s the simple pleasures that give the most reward.
I want to tackle a hard subject today…the emotions that surround living with a Chronic Illness. Every day, we survive the physical pain, but we don’t always talk about the emotional pain that comes with being ill. Let’s change that now.
When I first started feeling the effects of Fibromyalgia and Osteoarthritis along with my other Chronic Illnesses, I was generally able to function without a lot of changes in my life. I needed some pain medication but found that it helped and didn’t really alter my life, so ended up having some fairly easy years after my initial diagnosis.
After a period of time, the medication needed to be increased and new drugs had to be introduced to help combat the increasing pain and symptoms. I started taking Lyrica for my Fibro – a drug that saw me gain 40lbs in 3 months. This is when I first realized that having Chronic Illness was affecting me mentally – I was pissed about the weight gain but resigned to the fact I’d have to live with it. Thankfully my doctor worked with me to find Cymbalta instead and I managed to lose most of the weight I had gained.
Thus began a pattern where the drugs would work for a while and then lose their effectiveness, necessitating an increase or change in meds, which triggered more anger and emotion. It was a vicious circle…I just wanted to be rid of the pain I was in, but it was getting harder and harder. The side effects of the various meds being introduced were also debilitating and my anger grew at what my body was putting me through.
As Things Changed
Then came the point where my body had become so broken down that I needed to leave my job and go on long term disability. I can still remember to this day, 10 years later, how incredibly disappointed in myself I was. My body had betrayed me in every way possible. I was at the top of my career with the opportunity to move into some dream roles and suddenly that was all snatched away from me. Devastated doesn’t even begin to come close to how I felt and I ended up in a depression that was hard to come back from.
It took me a long time to realize that my feelings were valid and I was entitled to feel how I felt. I thought I had to suck it up for everyone around me, and that just wasn’t a place I was ready for. I hadn’t processed my emotions, and they felt just as raw a year later as they had when I first left work. It was only through taking some Cognitive Behaviour Therapy (CBT) classes that I started to see how I could validate my feelings yet work through them and come out stronger.
Having these strong emotions was scary though because I couldn’t separate them at first from the actions of being in pain, and just feeling like a failure as a person. It took time to realize that I had not failed, but my body had. Two very different things. By recognizing the difference, I was able to start accepting that I was not a bad person and that I had done nothing to cause this to happen.
I didn’t ask for Chronic Pain and Chronic Fatigue. I was simply unlucky enough to be a person to have to live with these conditions and that meant I had to find a healthier way of dealing with the emotions this generated. I was not unreliable, my health caused my reliability to suffer. My worth was not just because of my job, but by virtue of simply being here. I was still a good person who had something bad happen to her.
Do you see where I’m coming from and what I’m trying to say? Just because you have a Chronic Illness doesn’t make you a bad person. This condition has happened to you and changed you, against your will. Learning how to live with it becomes the new normal. Once I recognized this, I was able to take a step back and start taking my life back again.
Making Changes
I worked with my doctor to find a treatment plan that benefited me. This included some medication changes and additions, as well as adding healthy new components to my life such asmeditation, music therapy,gentle exercise, stretching, beginners yogaand balancing my eating habits. I stopped feeling guilty when I had to cancel or change plans because Illness took over. I couldn’t help it when those things happened, so why blame myself? I put the blame where it belonged…on my Illnesses, and left it there.
I was blessed to be able to start this blog, so I could reach out to others with Chronic Pain conditions and help them navigate their way through their experiences. It was very empowering for me and I gained back huge amounts of confidence as I wrote articles and posts. Knowing I was reaching others and actually helping them was a huge confidence booster.
I also found myself able to start volunteering again, and now sit on 4 different committees, all devoted to aspects of health care. I am a member of a Provincial Measurement Working Group, creating a survey for patients in BC, Canada about their ER experiences. I continue to seek out new opportunities to volunteer and was recently nominated for two WEGO Health Awards – one for Best in Show: Blog and one for Best Kept Secret (regarding my blog). You can clickherefor more information about my nominations.
To wrap this up, I want to reiterate that I think it’s important to sit with your feelings on a regular basis when you live with Chronic Illness. If you need the help of a professional therapist to process what you’re going through, do it. There’s no shame and definitely no harm in learning how to deal with all the emotions that come with a Chronic condition. In fact, I highly recommend it as a part of your overall treatment plan.
We go through so much on a daily basis that the notion we’re not affected emotionally is ludicrous. Don’t fall into the trap of being “stoic” and taking the attitude that you can handle things on your own if you truly can’t. Reach out for help, whether it be a professional, a friend, or a spiritual advisor. The peace of mind of knowing you’re not alone in your feelings is precious. And remember…
Note: This post contains Affiliate Links which provides an income to me at no cost to you.
In 2016, an estimated 20.4% of U.S. adults had Chronic Pain and in Canada, the numbers say approximately 1 in every 4 people lives with Persistant Pain. Chronic/Persistant Pain is described as pain that extends beyond 3 months of the estimated recovery time of an injury.
The author dealing with an Atypical Trigeminal Neuralgia flare up
Causes
Chronic Pain can be caused by the following:
Past injuries or surgeries
Back problems
Migraines and other headaches
Arthritis
Nerve damage
Infections
Fibromyalgia, a condition in which people feel muscle pain throughout their bodies
Other invisible illnesses such as Lupus, MS or Ehlers-Danlos Syndrome.
Symptoms
Chronic pain can range from mild to severe. It can continue day after day or come and go. The pain can feel like:
A dull ache
Throbbing
Burning
Shooting
Squeezing
Stinging
Soreness
Stiffness
Sometimes pain is just one of many symptoms, which can also include:
Feeling exhausted despite rest
Loss of appetite
Sleep disturbances (I’m writing this at 2:30am)
Mood changes
Physical Weakness
Depletion of energy
Chronic Pain and Your Mental Health
Chronic pain can interfere with your daily life, keeping you from doing things you want and need to do. It can wear on your self-esteem and make you feel angry, depressed, anxious, and frustrated. A persistant feeling of sadness may accompany Chronic Pain. Often, people with Chronic Pain have to give up work, hobbies and activities they enjoy, which leads to further depression, etc.
Fighting Back
With such a high prevalence of Chronic Pain in North America, how does one fight back? How do you manage living with Chronic Pain and still maintain quality of life? There are a number of ways to manage, such as:
Pain Management Courses
These courses can be a combination of Cognitive Behaviour Theraphy, Meditation and Mindfulness, Injections to help with certain types of pain, and group talk where you have the support of others in a healthy moderated environment. There are also online pain management courses for those unable to get to programs in other locations. These include:
It is my sincere hope that some of these suggestions may be just what you need to help you manage your Chronic Pain. Don’t forget to check for Pain Management Services at your local hospital as well. They often run classes of 4-8 weeks that can help you learn how to support yourself.
Medication And More
Medications play a huge role in managing your Chronic Pain. Opioids are in the news now as doctors across North America are being forced to scale back the number of prescriptions they write, but there is still a useful place for them and it’s worth discussing with your doctor to see if you can benefit.
Other medications that help include drugs like Cymbalta, Lyrica and Savella for Fibromyalgia pain, Gabapentin for nerve pain, Amitriptyline for anxiety and pain, and supplements like B12, Glucosimine, Magnesium, SAMe and Vitamin D
This article from Medical News today lists a number of essential oils that can help with pain, and discusses other complementary tools such as acupuncture and yoga.
I hope that some of these suggestions will help you manage your Chronic Pain and give you some relief. If you have any suggestions for products that work well for you that I should consider in a future post, please feel free to leave a comment using this form
Today’s post is from my dear friend Michelle at the Zebra Pit. She’s sharing information about Myofascial Therapies and how they relieve the symptoms of Fibromyalgia. Read on!
Fibromyalgia is a complex condition that often comes with a plethora of symptoms that can be confusing. Fibromites live with constant pain and for many even a gentle, caring pat on the hand can become unbearably painful.Fibromyalgia is a common comorbid condition to many chronic illnesses, yet doctors often have no idea how to treat our many symptoms. Could it be the biggest culprit in our widespread pain and the formation of our tender points is a little known bit of connective tissue known as fascia.
Fascia and Myofascial Dysfunction
Fascia is a network of thin connective tissue that runs throughout our bodies in bands and sheets. It is the tissue that helps keep everything in place and is comprised mostly of collagen. It wraps our organs, muscle and bone, creating dividing lines, holding the perfect position for our organs, while keeping our muscles and joints in proper alignment. Because fascia holds the body together and keeps everything in place, it is responsible for the body’s shape and form.
Just like tendons and ligaments, this connective soft tissue can become dysfunctional. Unlike these other soft tissues, the fascia is connected with the autonomic nervous system and some believe it to be a second, separate nervous and endocrine system, based on study findings. When myofascial tissues become dysfunctional, there are a number of things that can go wrong with the fascia, creating a scar tissue that is generally referred to as myofascial adhesions. This may be caused by mechanical or chemical failure or injury to the body.
The worse this dysfunction becomes, the greater the pain and number of myofascial adhesions. If you have myofascial adhesions, you can sometimes feel them as lumps when you run your hand firmly over your skin. Often, they are sore and painful even when using a light touch. These adhesions can also cause small fatty tumors to form. These fat deposits, along with the way fascia pull on the skin can dimple the skin, causing cellulite.
Myofascial dysfunction can be localized or widespread. If you develop tennis elbow (tendonitis), you might just develop myofascial adhesions around the injury. This is why you sometimes still experience pain even after an injury has healed. It could also grow and become widespread, as this interconnected network of tensile fibers tends to interact heavily. When fascia bunches up around one joint in order to protect it, it sometimes pulls other areas of our fascia out of alignment.
My myofascial problems ran from head to toe, causing awful tension headaches that also helped to feed my migraines, small fiber neuropathy throughout my hands and feet, 14 tender points with widespread pain and my fascia had become so tight that it was actually pulling some of my joints out of position. Neither my right hip nor shoulder would stay in place any longer.Not only that, my myofascial tissue had grown so dense about my skull that it actually inhibited my natural hair growth and I feared I was going bald. I also had the “family curse” of cellulite and varicose veins on my arms and legs. I had regular TMJD pain and my hands were so tender, I couldn’t even knock on a door without bringing tears to my eyes. I also had tremors, it took twice the amount of time for me to go numb at the dentists, and I was constantly freezing, because my fascia were cutting off some of the blood flow and circulation to my skin.
How Myofascial Massage Helps
In the 3 years I’ve been doing myofascial massage, I haven’t needed a pain medication stronger than toradol to treat my fibromyalgia pain. My head pain is at an all-time low despite suspected CCI and chiari. While my small fiber neuropathy isn’t completely gone at this point, it’s at an all time low and rarely causes issues. All of my joints function more normally and I spend a lot less time dealing with dislocations and subluxations. My hair and eyebrows are now thick and healthy. I rarely have problems with tremors anymore and even my POTS symptoms improved. I’m no longer quite so intolerant of heat or changes to the atmosphere. I have an abundance of hair and my eyebrows have grown in much thicker, too.
The traditional medicine model of pills and surgery offer poor solutions for these symptoms, but there are a number of myofascial treatments available that could improve your symptoms significantly. These therapies can be done in the comfort and privacy of your own home and there are several kinds of myofascial therapy you can have done professionally.
Each of these therapies work a little bit differently, but the long-term results are still largely the same. Each of these tools seeks to destroy any overgrown fascia and help to restore the myofascial lines to a healthy state. It is not always easy work. Some of the tools require a bit more oomph than others and the toxin release can be significant, as can the bruising. It’s worth it. The relief is greater than any of the drawbacks.
Today’s Options for Myofascial Therapy
Ashley Black Guru has a number of myofascial tools which are very effective. Her videos and book are a great way to learn about how fascia functions, along with some great techniques. While it’s one of the most strenuous forms of myofascial massage, it’s still one I recommend highly. Since you have to put a little grit into it, it will help to build up stamina, strength and new muscle. This is essential to maintaining healthy joints and fascia as your body heals. Black’s methods and tools are highly effective and you can’t go wrong with her tools, though I recommend you go slow and be as gentle as possible. These tools are self-driven so you can control how hard and fast to go, how often to blast and find the best routine to suit your needs. If you need help choosing which tools are right for your specific issues, take a look at myFasciaBlaster Buying Guide.
An ultra cavitation machine is a handheld personal use version of ultrasound, which is used to help break up myofascial adhesions and release toxins, along with far infrared light to facilitate in healing. It’s deceptively simple to use, but very powerful. After only 4 sessions, my cellulite has decreased so dramatically, I don’t even recognize my own legs anymore. It’s amazing how something that seems so gentle can mold such terrain so dramatically. It’s also an easier, more leisurely tool to use. The pace of this tool is slow and provides a gentle touch, so there’s no pain involved.
Cupping is another form of myofascial therapy you can opt for. In this therapy, bell like cups are applied to the skin and heat is used to create a vacuum within the cup. The suction helps to pull and release the overgrown fascia. I’ve heard good things about it from others with fibromyalgia and EDS. Cupping can be a passive form of self guided myofascial therapy, but you can also get this treatment done professionally.
Along with cupping, ASTYM is provided as a professional medical service. According to the website, ASTYM regenerates healing by eliminating scar tissue and helps to regenerate new, healthy tissue. The claim about this therapy is that it is very restorative and powerful, but they don’t share how they actually accomplish the therapy itself.
Ultra Cavitation can also be done professionally and may be more effective than self-use tools available on the market. The ultra cavitation is marketed as a tool for beauty, as it works well to create slimming, contouring and weightloss. In fact, all of these tools are marketed for their cosmetic benefits and I’ve certainly reaped my fair share of aesthetic benefits from using these tools. It isn’t my main concern, but it can be a good motivator. I’ve lost over 50 pounds while fasciablasting; a feat that seemed impossible for me due to lipedema. I’ve also really enjoyed the tightening effects on the only thing that reveals my age; my turkey neck.
It’s also possible to have a massage therapist do your myofascial treatments utilizing your own FasciaBlaster. The number of MT’s using the fasciablaster is small but growing. Many who don’t know also seem quite willing to learn about it and you can really benefit from their knowedge and experience. The best blasting session I ever had was from a licensed MT.
Performing Myofascial Therapy Safely
With all the services and self-use tools available, it seems like there’s a myofascial therapy that’s right for almost everyone: However, it’s important to note that myofascial therapy isn’t for everyone. If you have a blood clotting disorder, take blood thinners or have a vascular disorder such as vEDS, you should not undergo myofascial therapy. Like all therapies, whether doing a self-use tool or seeing a professional, be sure to consult with your medical team to ensure it’s safe for you first.
Safety should always be paramount when choosing a therapy for your health. Time to carefully research how to perform these treatments should be taken prior to beginning myofascial work. The risk of injury is greater if you don’t know what to watch out for and it’s easy to abuse such a tool, causing severe bruising, fatigue, toxic overload, injury or other problems. These tools need to be used only as recommended, for no longer than the specified time stated for each tool.
People with fibromyalgia and other health problems need to take these therapies very slowly. It is not unlikely that myofascial therapy will be a bit of a shock to the system, so it’s essential to ease your way in. It is possible to make yourself very sick from detox and overdoing it, causing fatigue and even a flare up in your conditions. To avoid this, start slowly and use these tools more gently than recommended. For pacing, I recommend people begin with one body part (a leg) or section (the abdominals) a day and work their way up to more based on tolerance. Take days off in between if your body is struggling with payback. To get more tips on safety and proper usage, take a look at23 Tips for FasciaBlasting with EDS and Fibromyalgia.
Myofascial therapy may not be for everyone, but for those of us suffering with the daily pain and other debilitating symptoms of fibromyalgia, it can offer significant relief from our daily symptoms. It can even eliminate some of those terrible tender points which develop and are a criterion for diagnosis. As of today, I am down to only five; so few I no longer qualify for thediagnosis. Myofascial therapy may not address your every symptom, but since I’ve begun utilizing it, my life has been a lot more comfortable and I now enjoy many more symptom-free days.
Michelle Curtis is a poet and writer with hEDS, POTS and MCAS. She is managing editor for theZebra Pitwhere she writes about spoonie health and wellness, as well as art and culture. She has a BA in women, gender and sexuality studies from BGSU and an MFA in creative writing from NU. She lives in greater Cincinnati with her husband David and two Russian Blue cats. She thoroughly enjoys spending time with her family and friends. In her spare time she enjoys books, movies, art, music and the great outdoors (even when her MCAS doesn’t).
Chronic pain and Invisible Illness are difficult conditions to live with and can lead to social withdrawal and loneliness. When you get sick, not only do you have to process and deal with things like surgeries, recovery, medications, new symptoms and flare-ups but socially you may have to give up hobbies and activities you once loved, making it hard to nurture friendships and relationships with those close to you.
It’s hard for those who love you to understand why you might have to cancel plans last minute or leave during the middle of the evening. Because they’ve never experienced what you’re going through, it’s hard to have a frame of reference. Unless you’ve lived it, it’s impossible to make others understand.
Social Isolation Is Serious
Because of these changes that we have to make – like leaving in the middle of something or cancelling plans – we open ourselves up to feelings of social isolation, depression and anxiety and guilt.
Social isolation is defined as an occurrence when a person lacks opportunities to interact with people while loneliness is the subjective experience of distress over not having enough social relationships or enough contact with people. It is possible for a person with a chronic illness to be socially isolated and not feel lonely and someone with a chronic illness can feel lonely, while not being socially isolated. There are several issues that people with chronic illness face that can lead to social isolation and feeling lonely:
Disbelief from others when you don’t have a clear diagnosis
Physical limitations due to pain or fatigue
The unpredictability of symptom onset
The trigger of symptoms related to noises, smells, etc.
Lack of a strong support system (Family and/or Friends)
Changes in employment or financial stability
Loss of hobbies and outside activities
Social isolation and feeling lonely are important health problems and should not be overlooked. The chronic illness population is at an even higher risk for social isolation and this problem should be addressed with your Doctor along with other symptoms and risk factors.
What You Can Do About It
When you are socially isolated and have feelings of loneliness, it can actually make your chronic illness worse. The longer you are experiencing isolation or loneliness, the more you start to develop feelings of shame, guilt, inadequacy, distrust and abandonment toward yourself and others. The more these feelings grow, the less likely you are to seek out real human connections.
So what can you do when you start having these feelings?
1. Recognize loneliness for what it is, and accept that you have these feelings. Self-awareness is important in making positive changes. When you catch yourself falling into old habits, you’ll be able to more quickly turn things around.
2. Use Cognitive Behaviour Therapy (CBT) to help reframe your thoughts to become more positive and open to socialization. This can be done with the help of a therapist or through online courses and over time, can be very effective.
3. Resist the temptation to isolate yourself and start forcing yourself to recognize if this is your “go-to response. Deliberately try doing the opposite of what you’re feeling – instead of retreating into watching TV, take a walk or pick up the phone and call someone. The more you resist the temptation to isolate, the easier it becomes
4. Fill your life with loving positive people who are patient and trustworthy and who truly try to understand what you are going through. They will be your encouragers and biggest support system. Remove negative people from your life…you don’t need their energy.
5. Try one new thing each week that will get you to meet new people. Try an art class, go to yoga, volunteer… anything that will get you to meet new people who like doing things that you like to do.
6. Seek out a support group for your illness. This is a great way to meet people who really do understand what you’re going through. Even an online group is fine to get started as being with like-minded people will help to engage you instead of isolating you.
7. Ask for what you need in your life. Don’t feel you’re being a burden on others…when someone asks what they can do for you to help, they genuinely want to help. Let them…give them the opportunity to be of service to you. Perhaps it’s to invite you out for coffee once a week or to go take a class together. You’ll be helping them as much as they will be helping you.
8. Consider therapy. It can help you explore any deeper issues that might be contributing to loneliness or social isolation. Therapy can also be a great accountability and skills training support to help you manage all of the difficult things you are going through in a safe way.
Today I am featuring an article that first appeared on MadebyHemp.com, with their permission.
Health and Wellness Trends
This year has been a year when most of the world focused on health and wellness in a more holistic manner: both physical and mental wellness. So what can we expect to see in the health and wellness sphere for the rest of 2019?
1. Ayurveda
The 5,000-year-old health system, Ayurveda (in Sanskrit means “knowledge of life”) is responsible for a lot of health movements in 2018. Perhaps the most familiar of which would be the ketogenic diet. Ayurveda is an old system of medicine that incorporates plants and animal products, particularly fats. The practice of Ayurveda involves using fats both for consumption, meaning eating fats like ghee, and external use, like oils for the skin. The practice connects both mind and body in bringing about wellness.
2. More Plant Based Alternatives
2018 has seen therise of plant based food, a whopping 23% rise in sales. Gone are the days when the choices we had regarding plant based food were TVP and tofu. Now it is beginning to look like there will be a huge movement in the plant based fish sector. Expect your local Whole Foods aisles to have more plant based fish meat choices. The plant based fish movement stemmed from the awareness of people of the negative impact of overfishing has on our environment.
3. More Sleep
A lot of people, students and workers alike, are severely lacking in sleep. In the coming year, we will have a better understanding of our circadian rhythm and the effects of melatonin and cortisol on our sleep patterns. If these two hormones get out of whack, our circadian rhythm will be thrown out of its cycle and our sleep gets messed up.
4. CBD Oil
This year has seen a massive rise in popularity of CBD oil. Despite its being taboo in certain circles, Whole Foods Market’s projection predicts that CBD oil will have an even higher spike in popularity in 2019.
Expect that in the coming year, we will be learning more about the endocannabinoid system or the ECS. This is a major bodily system which compounds like CBD and other cannabinoids interact with. We have seen how CBD oil has helped manage anxiety and we’ve marveled at its anti-inflammatory and anti-seizure effects. Cannabis might also help with setting our sleep pattern straight. It most certainly helps with keeping a lid on anxiety and stress.
5. Eco-consciousness
More and more people are becoming aware of global warming and the dire situation the Earth is currently in. Expect that in 2019, the strong rise of the eco-friendly movement will continue. It is predicted that the use of single use plastics and other single use items will see a further decline and the BYOB (bring your own bag) movement will continue to become more popular.
6. Mental Health
This year, mental health continues to be given its due importance. People are now realizing that in order to be physically healthy, you need to think about your mental health as well. Hemp based products (like CBD oil) has become a more popular alternative to the usual stress medications. It is predicted that 2019 will see the continuation of this mental health trend.
7. Oat milk
Is oat milk the new soy? This year, sales have grown by an impressive 45%. Lactose averse people have found a good alternative to dairy and soy milk and the rise of its popularity does not seem to be ending soon. Grab yourself a bottle of oat milk this 2019 because it looks like they will be flying off the shelves still.
8. MCT oil
Aside from CBD, 2018 brought MCT (medium chain triglycerides) oil into the spotlight. This oil is odorless and colorless and stays liquid at room temperature. Putting MCT oil into your coffee, making it “bulletproof” is a good way of boosting your energy. Expect to see MCT become even more popular in 2019 as more people become aware of its benefits.
9. Body Positivity
Thanks to Rihanna and her Fenty brand, body positivity moved from the fringes to mainstream. Body positivity saw a rise in popularity in 2018 as more and more people focus on loving their bodies instead of shrinking them to fit into the mold that society wanted them to look. As more people shift their focus to mental health, this 2019 will see an even bigger rise in the body positivity movement.
10. Hemp based products
Aside from CBD oil, hemp based products have found their way into our lives from our beauty products, to our food. With the 2018 Farm Bill already signed into law, hemp based farming will be legal nationwide. Expect that in 2019, there will be more choices in hemp based products.
These are the hottest trends in 2019…which ones have you been paying attention to? Remember…
Some of the most creative people in the world live with Chronic Pain or some type of health challenge. I know, because I’ve gathered a bunch of them together to showcase their talents, right here. Read on!
Meet Julianne Ryan
Julianne is currently working as an art mentor for an artist with disabilities whilst volunteering her time to Mixed Palette Inc. an inclusive art group in Rockingham.
Julianne uses natural substrates, wood panels and recycled papers and works mostly with watercolour, ink and pencil to create depictions of feelings and experiences. Her latest works are multilayered with overlapping images that explore her experiences of chronic illness while correspondingly relating to her connection with nature. She also produces digital drawings, illustrations of birds and poetry that link to her memories, experiences and to current wellness practices.
She is currently working towards her first solo exhibition to be held at Forest Heritage Centre Gallery, Dwellingup in July/August.
Here are four samples of her amazing art:
Undergrowth series: Inktense pencil, ink and watercolour on wood panel
Christalle Bodiford is an artist, advocate, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she’s not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband.
Christalle was recently featured on this blog as one of my Interviewees for Interview April. Read more about her here.
Here are some examples of the work she’s done on her incredible book:
Christalle has provided this next page as one you can print out and colour:
For more information, please visit Christalle at her website. She supports the Epilepsy Foundation which can be reached here.
Meet deni
deni weber is a 67-year-old psychologist turned artist after major traumatic life events triggered multiple chronic illnesses. A Christ-follower, she uses her God-given gifts of creativity to help and encourage others as well as provide healing for herself, while recovering from limbic system traumas. Formerly bed-ridden for years, she is now finding healing using neuroplasticity techniques – creativity being a major healing component. She is an artist, singer-songwriter, and writer having several unpublished novels and screenplays hiding in a drawer. Giving credit to God, she declares her works are, “by His grace, and for His glory.”
Here are some examples of deni’s work:
“Welcome to My Garden Series – Purple Butterflies” Acrylics on Linen Canvas – 2.5” x 3.5”
“Forgiven” Graphite on 140# Cold Press, 12” x 12”
“Hidden in the Woods” PanPastel on Colourfix Board 2.5” x 3.5”
Alisha Nurse is a trained broadcast journalist, and enjoys sharing stories. She lives with various chronic health problems including fibromyalgia, depression, anxiety, complex post traumatic stress disorder and borderline personality disorder. These often challenge her creativity but they’ve also been her greatest inspiration to tell stories that make a difference.
She is interested in stories that change the narrative about ethnic minorities, chronically unwell people and those often cast on the sidelines.
Her favourite things include cheese, curries, and interacting with the world around her.
She has graciously allowed me to share one of her poems here:
~~~~~~
I do not recognise myself standing in the many shadows of you. You, towering, all-consuming, ever present but hidden away, in plain sight. Yet I feel you in every part of me. Trying to become me.
Not all monsters lurk like you. Once awakened, you thrive, clamour, steal, reverberate …through the length and breath of my mortal body, Silently leaving deadly, indelible traces of your mark, like on a cracked egg, ready to fall apart, any, anytime now, but still holding itself together as the lines spread and spread, Until I am finally broken.
Your crack lines emerge in places impossible. From earthen shell to the soul and heartland of me. Breaking, smashing, pillaging anything and everything, until I am nothing of my former self; nothing of possible Me(s).
But even broken things can be beautiful. With floods of tears and streams of blood I shall, I shall put me back together again. I emerge not the ‘Me’ that once was, was to be or had been imagined with dreams for the future.
I rise as someone, something else entirely–Pained but persevering. Flawed but fluid. Broken but beautiful and believing that I shall conquer. I am and will be the ‘Me’ that never was imagined. I am the ‘Me’ that’s emerged from the ashes of pain. I will not fit your cardboard cutouts or your nicely stencilled stereotypes.
And I am not sorry.
To survive, I change. Constantly. As the monster morphs so will I – imperfect still, but ready to give bloody hell in all battles to come.
~~~~~
Wow! That’s powerful. To find out more about Alisha, visit her website. She blogs about overcoming chronic illness on www.theinvisiblef.comand shares other fictional works on www.alishanurse.com
Meet Chrissy Joy Bell
Meet Chrissy Joy Bell. She lives in Columbus, Oh, USA. and says “I’m married to an awesome guy named Ryan. I received a fibromyalgia diagnosis in 2008 after a serious illness, and I live with chronic migraine. I own a hand made business where I create all sorts of fun and snuggly things out of yarn. I originally used creativity to handle the changes that were happening in my life. Now it gives me a serious sense of fulfillment to know “Hey, I made that!””
Most recently Chrissy self published a coloring book of hand drawn mandalas, a project she began for her own enjoyment that others are now also sharing with her. My hopes for the future are to continue making, and to help others understand their journey in life and with chronic illness.
Here are some examples of the different work that Chrissy has done:
Description: Sergio Garcia is a Writer atTravelevil.com, he is a music, travel and writing lover, can’t stop thinking about the new article to publish. Sergio believes that travel can heal both soul and body, this is why he joined Travelevil community where both writers and readers share their stories and exchange knowledge about the various travel experience they had in the past.
Beside Blogging and Marketing, Sergio is a certified scuba diver, another world that a lot of people need to discover and enjoy.
I am in serious awe of these talented people! I hope you are too! Please feel free to leave your comments about their work as each of them will be happy to answer questions as well.
And what about you? How do you show your creativity, whether you live with Chronic Illness or not? Share in the comments and tell us what you like to do.
If you’d like to be considered for a future post showcasing even more talent, please fill out the contact form found hereand let me know. I’ll be in touch to discuss a second post for later in the year.
The only thing better than an inspirational quote is an inspirational quote about things you should never do. You should never judge a book by its cover. You should never count your chickens before they hatch. You absolutely should never look a gift horse in the mouth (what exactly IS a gift horse??).
If you want to live your best life, enjoy this list of things you should never do*.
Career and Business Quotes
“Never mistake knowledge for wisdom. One helps you make a living and the other helps you make a life.” – Sandra Carey
“Never become so much of an expert that you stop gaining experience. View life as a continuous learning experience.” – Denis Waitley
“Never mix negative thinking with negative people. Multiplying negatives, in this instance, won’t make a positive.” – Richie Norton
“Never rest on your laurels. Nothing wilts faster than a laurel sat upon.” – Mary Kay Ash
Funny Quotes
“Never play leapfrog with a unicorn.” – Anonymous
“Never moon a werewolf.” – Mike Bender
“Never go to bed mad. Stay up and fight.” – Phyllis Diller
Hope Quotes
“Never deny a diagnosis, but do deny the negative verdict that may go with it.” – Norman Cousins
“Never confuse a single defeat with a final defeat.” – F. Scott Fitzgerald
“Never give up. Today is hard, tomorrow will be worse, but the day after tomorrow will be sunshine.” – Jack Ma
“Never let the future disturb you. You will meet it, if you have to, with the same weapons of reason which today arm you against the present.” – Marcus Aurelius
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead
Relationship Quotes
“Never love anybody that treats you like you’re ordinary.” – Oscar Wilde
“Never ruin an apology with an excuse.” – Kimberly Johnson
“Never underestimate your power to change yourself. Never overestimate your power to change others.” – H. Jackson Brown Jr.
“Never tell a child that something is too hard for them.” – Mitch Albom, quoting his mother
“Never explain – your friends do not need it and your enemies will not believe you anyway.” – Elbert Hubbard
Personal Development Quotes
“Never let the fear of striking out keep you from playing the game.” – Babe Ruth
“Never stagnate. Life is a constant becoming: all stages lead to the beginning of others.” – George Bernard Shaw
“Never treat time as if you have an unlimited supply.” – Og Mandino
“Never place a period where God has placed a comma.” – Gracie Allen
“Never reject an idea because you don’t have the money, manpower, muscle, or months to achieve it!” – Syed Ather
“Never interrupt someone doing what you said couldn’t be done.” – Amelia Earhart
“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.” – Robert Frost
“Never say more than is necessary.” – Richard Brinsley Sheridan
*Sources include, but are not limited to Brainyquote.com, Oxford Dictionary of Quotations, and Neverisms: A Quotation Lover’s Guide to Things You Should Never Do, Never Say, or Never Forget.
If you live with Chronic Pain or an Invisible Illness, has someone ever said to you “I’ll pray for you” or “You’re in my prayers”? What does that mean to you? Do you have Spiritual Beliefs that make those prayers easy to accept? Do you believe in a Higher Power? In God? Or do you believe that when we die, that’s it…there is nothing afterwards. No afterlife, no Heaven or Hell, no God of any type?
I am a Christ Follower. I call myself that because too many things have been done by “Christians” in the name of Christ that taint the Holy name, and I refuse to be associated with them. I’d rather try to live my life the way Christ modelled it, and so being a Christ Follower is a much better way of describing my religious leanings. I believe that He is the only way to Eternal Life and I believe in Heaven and Hell. I don’t talk about this often and almost never in public, but when I say I’ll be praying for you, trust me…I WILL be praying for you.
I also believe that everyone has a right to their own beliefs, and I will never push my beliefs on anyone else. If you want to talk about God with me, I’m happy to do so, but I won’t raise the subject first. It’s not that I’m shy or embarrassed about God, but more that I’m respectful of others, and I prefer to wait to discuss religion until the subject is brought up by others first. I am definitely NOT an Evangelist.
So, why am I talking about it now? Well, the reason is that the question came up in a Chronic Pain forum I belong to when someone asked the forum members “do you have Spiritual beliefs that help you cope?”.
I haven’t seen anyone else answer yet, but I wanted to share my response. Yes, I have a God who loves me dearly and who has a plan for my life. Right now, that plan includes me living with Chronic Pain and Chronic Fatigue from the many conditions I deal with. I think the plan includes these illnesses because He’s using me to help others, through my blog and my volunteer and advocacy work. What type of volunteer and advocacy work do I do?
I work as a Patient Advocate for a group in BC, Canada where I live called the Patient Voices Network.
Anyone in the Province can join, and it’s designed for ordinary people to have a say in how Health Care is delivered in the Province. Through my involvement, I am currently sitting on 4 committees, plus assisting on a project involving virtual reality and connecting with your doctor, and helping one Provincial Working Group where we are designing a survey to measure Patient satisfaction with their experiences in the Emergency Department and subsequent transfer to an Acute Ward before going home.
The committees I sit on do such work as:
Laboratory Quality Control
Updating Patient Information Sheets for discharge from Emergency Rooms
Quality Improvement Measures for Surgeons
The Oversight & Advisory Committee for the Patient Voices Network
I also had the honour of being part of The 2017 Canadian Guideline for Opioids for Chronic Non-Cancer Pain. I recently took part in a “Research for Canadian Anesthesiology” conference and I’m hoping to soon be a Facilitator of a Pain Management Support group.
So as you can see, my work is wide and varied and brings me together with many different people on a regular basis. I’m often asked “why” do I do what I do. Why do I volunteer my time to all these causes when my own health is so compromised and the truth is, it’s complicated.
I get a lot out of volunteering and blogging. It helps me stay relevant in the world around me. I get to utilize the skills I had while I was still able to work. I like to help people, and I genuinely care about others, especially those who are experiencing the same types of health conditions that I have. And yes, there is a spiritual component to it for me as well. It feels good for me to give back, to help my neighbour, just as Jesus commands me to do in the Bible. To love one another. This is how I show my love. I don’t see it as a duty at all, it just happens to be something I’m passionate about (another blessing from God) and something that’s easy for me to follow.
It’s also these Spiritual beliefs that help me deal with my own Chronic Pain on a day to day basis. I couldn’t do this alone, there’s no way I could live my life every day without God’s help. I put my trust in the Lord to get me through every day…and this is the part that confuses people or scares them off or makes them suspicious. How do you “put your trust in Jesus”? How does the Lord make things better?
Well, I’d be lying if I said I had the answer to that. All I know is that when I gave my life to Christ in 2001, I made a decision to trust Him, that He would always be there for me, and I’ve never once regretted it. When my pain is that the worst, I know that He suffered more and that He understands. He is with me in my agony and will never leave me. It helps to know that and makes dealing with it easier. I know that He weeps for me. So why doesn’t He heal me?? Because He has a bigger plan for me and I GET THAT. I know I can’t see His plan, but I TRUST HIM. And while I wait, I make the most of my time here instead of wallowing and crying and whimpering about. He gives me the strength to do that and I do my best not to let Him down.
It’s all about Faith my friends. You either have it or you don’t. No one can force you to have faith; it comes from the heart and it’s between you and Him. I believe that God is taking care of me, that His plan is the best plan and that one day, either here on Earth or in Heaven, I’ll find out exactly what that plan is. I’m content to wait until it’s revealed to me. And in the meantime, I’ll keep doing what I’m doing, helping others as best I can, following His guidance. I covet the prayers of others, and if you ask me to pray for you, I will. Heck, I’ll pray for you even if you don’t ask. And if you ask me to take my religion somewhere where the sun don’t shine, I’ll respect your request.
Spiritual beliefs are tricky but they don’t have to be. It’s all about respect for each other, keeping an open mind, and loving your neighbour. Remember…
Writing this blog brings me a whole lot of satisfaction – I love knowing I’m reaching others, sharing information about Chronic Pain and Invisible Illness and helping others as they live their lives with Disabilities. I don’t expect much in return, so when my blog is recognized, it truly delights me. And that’s why I’m thrilled to say I’ve been awarded the Sunshine Blogger Award
So – what is the Sunshine Blogger Award?
The Sunshine Blogger Award is recognition given to bloggers by their fellow bloggers. The aim is to honour those of which bring inspiration and positivity to the world through their blog content.
Rules for the Sunshine Blogger Award
Thank the person who nominated you and provide a link back to their blog.
List the Sunshine Blogger Award Rules and display the logo on your site.
Answer the Sunshine Blogger Award questions given by the person who nominated you.
Nominate 10 other bloggers and ask them 10 new questions.
Notify the nominees of their nomination.
Thank You
I want to extend my thanks to Davis at Everything Starts With Tea. She nominated me for this award and it totally came out of the blue. I was touched and flattered that she thought of me and liked my blog enough to consider it for this award. Thanks Davis…I appreciate it so much!
Questions
What has been your biggest achievement?
My biggest achievement in blogging has been being nominated for 3 WEGO Health Awards for this year (2019)
What is your motivation to blog?
I like knowing that my blog is reaching people who live with Chronic Illness and is helping them to find answers and affirmation that they are not alone. I work hard to bring information and humour to my posts – I want people to feel this is a solid resource when they have Chronic Pain, Chronic Fatigue, Fibromyalgia or Invisible Illnesses.
What’s one thing you wish to accomplish before you die?
I would love to take a “Round the World” cruise before I die.
What’s your greatest dream in life?
There are two things – seeing my kids and grandkids have happy healthy lives and to find a cure for Fibromyalgia.
What’s your favourite book and why?
Furiously Happy by Jenny Lawson. It’s a hilarious account of her life with mental illness and is truly “laugh out loud” funny!
Pick any moment in life you feel has defined you the most and tell us, why do you feel that’s the case?
I think it’s when I was a single parent and had just started my first job. I went into a position as a receptionist where there were 12 incoming lines, and the computer system was completely different than what I had just been taught in the computer courses I’d been taking to prepare me for work. I knew at that moment I could either sink or swim and I chose to swim. I learned the new system in no time, mastered all those phone lines and discovered I LOVED doing administrative work – I was well suited for it. I thrived and never looked back.
If we were all colours, what colour would you be and why?
I would be pink! Pink is happy and light and cheerful and always makes you feel good. Even when it’s dark pink, it’s still pretty!
Tell me, what is one mistake you’ve made that you’ll never make again?
I will never marry again!!! LOL…that’s because I finally got it right with my current husband…my second attempt.
If you had the ability to fix one of the world’s problems, which would you choose to fix?
I would choose to end world hunger. With a full belly, you can achieve so much, but when you’re starving, everything else is a huge challenge.
You’ve been given a genie lamp – what three wishes are you asking the genie to grant?
What is the best advice you could give to an up and coming, new Blogger?
What was your favourite class in High School and why?
Why did you start blogging?
Do you have a blogging goal?
What is your favourite food?
Is there a tradition from your heritage you’d like to share?
What is your favourite holiday memory?
So there we go…the Sunshine Blogger Award! I hope you enjoyed reading through this and to those of you I’ve nominated, I hope you appreciate how much I care about you and your blog. Please accept the honour in the spirit it’s been given, but if for some reason you are unable to participate, don’t feel bad!!! I know that some people prefer not to share in these awards and my feelings will NOT be hurt in any way if you choose to pass.
Share with your friends and feel free to nominate your own winners! Remember…
For those with “invisible” illness, it’s difficult to find a doctor who believes you’re sick – not just depressed, not just anxious, not just tired – but sick.
So what happens when you find that Physician and then they move on?
I started out by seeing a Naturopathic Doctor in Victoria because I needed nutritional care. My previous doctor had supplied me with enough of my prescriptions to last for 3 months, so that wasn’t as big a concern for me. Dr. Holewa let me know that a new GP would be opening his practice in the same clinic she was located and I called to be put on the waiting list to belong…news about the new doctor had already started circulating in the community and everyone was signing up!
I was still able to get an appointment though, for the last day before the Christmas holidays in 2013. It was basically an interview between the Doctor and me, to see if we were a fit and if he was willing to take me on as a patient, given my challenging health history. Dr. Leong and I really hit it off and he agreed to accept me into his practice (along with my husband). What a relief!
Now, I don’t know what it’s like to try and find a doctor where you live. If you are in the USA, I believe it’s fairly easy. The problem is finding the RIGHT doctor…one who meshes with you in terms of beliefs and who blends with your personality. You want strong medical knowledge, a good office staff, decent parking and hours and the feeling that you’ve found “the best” when you see him/her. I found all of that with Dr. Leong and so we began a 5-year patient/doctor relationship that took us through all my health problems, including my hip replacement, brush with skin cancer and more. And then one day, he told me he was leaving the practice and moving to a smaller town up-Island.
Closing The Practice
The word I heard most from his other patients has been “devastating,” I absolutely concurred. Dr. Leong was highly respected and well loved and the thought of being without him was almost too much to take in. His main reason for leaving was that he wanted to live in a smaller town, and at first, I thought I would simply continue to see him, as his new practice was only a 30-minute drive away. The reality though was that there were no buses that took me there and I would be forever reliant on my husband taking time off work to drive me. That just wasn’t feasible so not only was I losing a good Doctor, I was going to have to find a new one too (there were no plans to replace him in the clinic).
What’s the big deal? Well, as I said, there is a shortage of doctors in my Province. Recommendations filled my email, but the fact was no other doctor in town was taking on new patients. It looked like most of us were going to be resigned to using Urgent Care for our medical treatment. The thought of that filled me with dismay. I needed a good working relationship with my Doctor because of my history and that simply wouldn’t happen in an Urgent Care facility.
Then one day, about three weeks after first receiving the news, word came from the office receptionist that there was a new doctor in town who would be taking on a limited number of new patients. My clinic’s receptionist faxed the referral to the office where this new Doctor would be setting up – not that far from where I was currently going. It seemed that this Doctor had requested from several medical offices that they send their “best patients” to her…and I was one of them! Dr. Penny Wilson agreed to take me on along with my husband! What a relief!! She is here for a year from Australia but promised that if she decided to go back home at the end of the year, one of the other doctors in the new clinic would take us on. My relief was immense.
Conclusion
For those of you who are going through this situation right now, you have my sympathy and my empathy. It can be frightening to be left without a safety net. Keep asking at other offices about being put on a waiting list, and check with your family and friends to see if their doctor can take you on because of your relationship and closeness.
So what DO you do when your doctor leaves and there is no doctor to take over? I wish I had an answer for that. Many doctors have replacements come in when they leave, or the clinic they are leaving hires someone new. When that’s not in the works, you can be left scrambling and in the case of being a Patient with Chronic Pain, that’s so frustrating. Frequent visits are normal because of medication changes, new symptoms to be checked and old symptoms revisited. My best advice is to check with the Doctor who is leaving and ask if there is a succession plan. What do THEY recommend you do?
Having a Doctor leave his practice is a scary prospect. I hope that you never find yourself in the same position I was in, but if you do…I hope it works out well like it did for me. Keep the faith…remember,
Fibromyalgia is a condition that affects millions of people in North America. While typically thought of as an “everyday person”s condition, there are a number of celebrities who live with Fibromyalgia who have talked about it in public. It’s helpful to know we’re not alone, and because of these people, Fibromyalgia is starting to gain more recognition.
Here is a list of 10 Celebrities who live with Fibromyalgia.
Lady Gaga
Lady Gaga is perhaps the most well-known celebrity with Fibromyalgia. After struggling with chronic pain for many years, she confirmed in September 2017 that the cause of her pain was fibromyalgia.
In her Netflix documentary “Gaga: Five Foot Two,” released on September 22/18, Gaga opened up about the challenges of finding treatments and coping techniques to help manage her symptoms. She is seen using ice packs and trying deep massage and dry needling as ways to help manage the pain.
“I am praying that more and more people come forward and we can all share what helps/hurts so we can help each other” Gaga said in a recent tweet.
Morgan Freeman
Morgan Freeman is the actor best known for roles in The Shawshank Redemption, The Bucket List with Jack Nicholson and for winning an Academy Award for his role as a beaten up cornerman for Clint Eastwood in Million Dollar Baby.
In 2008, Morgan Freeman was involved in a car crash that left him with multiple injuries, including a shattered left arm. He went through a 4-hour long surgery to save his arm and has talked in several interviews since he continues to experience “excruciating” nerve pain and now lives with fibromyalgia.
In 2015 he told The Daily Beast he treats the pain with marijuana. “Marijuana has many useful uses,” he says. “I have fibromyalgia pain in this arm, and the only thing that offers any relief is marijuana”.
Lena Dunham
Though she had previously been vocal about her struggles with endometriosis and chronic pain, Lena Dunham revealed in an Instagram post in October of 2018 that she has fibromyalgia. She described what it’s like to have an “invisible” illness like fibro, writing, “I appear to be totally able-bodied but it’s complex, and I am just trying to do everything required to maintain a life of joy and service. My work costs everything I have. This is fibromyalgia. It’s little understood and so even though I have a lot of knowledge and support it’s hard to shake the feeling I am crazy. But I’m not (at least not this way!) and you’re not.”
Dunham continued to say that pain, however it presents — whether it has a visible culprit or not — is valid. She wrote, “Your pain, whatever shape it takes, is yours and so it is real. I believe you when you say you hurt. I have learned time and time again how important it is to believe.”
Sinead O’Connor
Sinead O’Connor is an Irish singer-songwriter who stepped away from music in 2003 because she was struggling with fibromyalgia and wanted to take care of her children.
“Fibromyalgia is not curable. But it’s manageable,” O’Connor said in a 2005 interview with HOTPRESS. “I have a high pain threshold, so that helps – it’s the tiredness part that I have difficulty with. You get to know your patterns and limits, though, so you can work and plan around it. It is made worse, obviously, by stress. So you have to try to keep life quiet and peaceful.”
Sinead returned to the music scene in 2005. Despite numerous setbacks, she said she hopes to continue singing and doing what she loves but stays away from the parts that cause her excessive stress, which can exacerbate fibromyalgia symptoms.
Mary McDonough
“The Waltons” actress Mary McDonough has been very open about her battles with fibromyalgia, lupus and Sjogren’s syndrome. She believes she developed the conditions after having an adverse reaction to breast implants she had inserted in an effort to reinvent herself following the series’ end.
“Within 24 hours I broke out into a rash all over my back and my chest,” McDonough told Smashing Interviews Magazine. “But over the course of the 10 years, I just couldn’t put my finger on that. I just didn’t feel right. The chronic fatigue set in, the rashes, the rash across my nose and the bridge of my face which we now know is like a lupus rash, the joint pain, the muscle stiffness, eventually being diagnosed with fibromyalgia, and then the collagen disorder called Sjogren’s syndrome, my hair fell out and I would be tired all of the time.”
McDonough is now a public speaker, author and workshop leader, often talking with young women about their struggles with body image and self-esteem.
Kyle Richards
“Real Housewives of Beverly Hills” star Kyle Richards said she first became sick while her mom was sick with cancer, but was initially told she was depressed because her mom had passed.
A friend told her she might have fibromyalgia, so she went to a doctor who specializes in the condition who confirmed her diagnosis. “All of a sudden I felt like I had an answer and I felt better because it causes so much anxiety [not knowing],” Richards said.
Richards has since sought out alternative methods for treating her fibromyalgia pain — on “The Healer,” she worked with Charlie Goldsmith, an “energy healer” who aims to help people reduce their chronic pain.
Janeane Garofalo
Actress and comedian Janeane Garofalo has been very open throughout her career about her struggles with fibromyalgia as well as mental and emotional issues, including anxiety and depression. She has even incorporated her fibro into her stand-up routine, using humour and laughter to cope with the pain she experiences.
“I had no idea I was chronically dissatisfied,” she saidabout being prescribed an antidepressant for her fibromyalgia.
Michael James Hastings
Michael James Hastings, known for his role as Captain Mike on “The West Wing,” had to retire from being a school teacher at age 35 due to fibromyalgia. It was his chronic pain that led him to move to Los Angeles to pursue a part-time acting career.
Hastings has said that he copes with the symptoms of fibro with natural means, such as supplements, exercise, massage therapy, acupuncture and visits to the chiropractor.
“I also have learned to accept that some days I am not going to be able to keep up with my schedule or other peoples’ schedules and I just need to rest and ‘lighten up,’” he said in an interview with the website Back Pain Relief.
A.J. Langer
Actress A.J. Langer, best known for her role on “My So-Called Life,” “Seinfeld” and “Three Sisters,” was diagnosed with fibromyalgia as a teenager but continued to pursue acting. After filming “Three Sisters,” Langer took a break to figure out how to manage her symptoms and put her health first. She has experimented with a number of alternative therapies to help her cope with fibromyalgia, including surfing, yoga and meditation.
In an episode of the Aches and Gains podcast with Dr. Paul Christo, Langer said, “There are different levels of learning you go through with fibromyalgia… One is I’m all alone, you know, no one else understands this pain. And then there’s a point you can get to where it becomes universal and you understand that everybody’s got something. I’ve come to terms with the fact that my body has a fragile ecosystem and I’ve gotta tend to it.”
Kirsty Young
Kirsty Young, a broadcaster on the BBC Radio 4 show “Desert Island Discs,” announced in 2018 that she would be taking a break from the position due to fibromyalgia. She explained: “Casting away some of the world’s most fascinating people is a wonderful job – however, I’m having to take some time away from Desert Island Discs as I’m suffering from a form of fibromyalgia.”
Young indicated that she hoped to spend some time healing and then return to the show.
It’s nice to know that celebrities are just like the rest of us and suffer through the same types of illnesses that we do. I commend all of these people for sharing their stories in the public eye. To them and to you, I say…
If you ask someone how they slept last night, chances are you’ll get one of two answers – “fantastic” or “not at all”. It seems like a lot of people have trouble getting a good night’s sleep. The reasons can be many – having young children, an uncomfortable bed, too hot, too cold, too much stress…the list goes on.
When you live with Chronic Pain, it’s an entirely different story. Pain is usually the main factor in keeping us awake, and the likelihood of a good night’s sleep is generally not to be expected. Read on to find out more about what it takes for a good night snooze.
Sleep And Your Immune System
Without sufficient sleep, your body makes fewer cytokines, a type of protein that targets infection and inflammation, effectively creating an immune response. Cytokines are both produced and released during sleep, causing a double whammy if you skimp on shut-eye. Chronic sleep loss even makes the flu vaccine less effective by reducing your body’s ability to respond.
Stock Up on Naps
To stay healthy, especially during the influenza season, get the recommended seven to eight hours of sleep a night. This will help keep your immune system in fighting shape and also protect you from other health issues including heart disease, diabetes, and obesity. If your sleep schedule is interrupted by a busy workweek or other factors, try to make up for the lost rest with naps. Taking two naps that are no longer than 30 minutes each —one in the morning and one in the afternoon—has been shown to help decrease stress and offset the negative effects that sleep deprivation has on the immune system. If you can’t swing a half-hour nap during the workday, try grabbing a 20-minute siesta on your lunch hour, and another right before dinner.
Other Healthy Tactics
Of course, there’s more to boosting your immunity and guarding against illness than getting ample sleep. It’s also important to practice smart stay-healthy strategies such as washing your hands with soap regularly, avoiding close contact with people who are obviously under the weather and talking with your doctor about getting an annual flu shot. And remember: Even if you do come down with a case of seasonal sniffles, you’ll be able to bounce back faster if your body is well rested.
11 Tips For A Better Sleep
Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
Set a bedtime that is early enough for you to get at least 7 hours of sleep.
Don’t go to bed unless you are sleepy. If you don’t fall asleep after 20 minutes, get out of bed.
Establish a relaxing bedtime routine. Use your bed only for sleep and sex.
Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
Limit exposure to bright light in the evenings. Turn off electronic devices at least 30 minutes before bedtime.
Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
Exercise regularly and maintain a healthy diet.
Avoid consuming caffeine in the late afternoon or evening.
Avoid consuming alcohol before bedtime.
Reduce your fluid intake before bedtime.
Take your medications on a regular basis. If you take sleeping meds, take them on a regular basis as directed instead of just hit and miss each night.
From time to time, I like to share quotes that I think are beautiful, to help inspire my readers or just make you think. Here are 25 of the most inspirational quotes I’ve found lately to share with you today.
Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be? Marianne Williamson.
Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. Dale Carnegie.
Anyone can give up; it’s the easiest thing in the world to do. But to hold it together when everyone would expect you to fall apart, that’s true strength. Chris Bradford.
Life is full of screwups. You’re supposed to fail sometimes. It’s a required part of the human existence. Sarah Dessen.
Hard times don’t create heroes. It is during the hard times when the hero within us is revealed. Bob Riley.
When you have exhausted all possibilities, remember this: you haven’t. Thomas A. Edison.
You can play it safe, and I wouldn’t blame you for it. You can continue as you’ve been doing, and you’ll survive, but is that what you want? Is that enough? J.M. Darhower.
Fairy tales are more than true: not because they tell us that dragons exist, but because they tell us that dragons can be beaten. Neil Gaiman.
Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow where they lead. Louisa May.
Be grateful for what you already have while you pursue your goals. If you aren’t grateful for what you already have, what makes you think you would be happy with more. Roy T. Bennett.
It’s not about perfect. It’s about effort. And when you bring that effort every single day, that’s where transformation happens. That’s how change occurs. Jillian Michaels.
Reach high, for stars lie hidden in you. Dream deep, for every dream precedes the goal. Rabindranath Tagore.
Limitations live only in our minds. But if we use our imaginations, our possibilities become limitless. Jamie Paolinetti.
When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn. Harriet Beecher Stowe.
You may be the only person left who believes in you, but it’s enough. It takes just one star to pierce a universe of darkness. Never give up. Richelle E. Goodrich.
You never know what’s around the corner. It could be everything. Or it could be nothing. You keep putting one foot in front of the other, and then one day you look back and you’ve climbed a mountain. Tom Hiddleston.
If one dream should fall and break into a thousand pieces, never be afraid to pick one of those pieces up and begin again. Flavia Weedn.
Just because you fail once, doesn’t mean you’re gonna fail at everything. Keep trying, hold on, and always, always, always believe in yourself, because if you don’t, then who will? So keep your head high, keep your chin up, and most importantly, keep smiling, because life’s a beautiful thing and there’s so much to smile about. Marilyn Monroe.
Don’t let something make you miserable if you can do something about it. If that’s what makes you happy, go for it. Kate Brauning.
A boat is always safe in the harbor, but that’s not what boats are built for. Katie Couric.
Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover. Mark Twain.
Your complaints, your drama, your victim mentality, your whining, your blaming, and all of your excuses have NEVER gotten you even a single step closer to your goals or dreams. Let go of your nonsense. Let go of the delusion that you DESERVE better and go EARN it! Steve Maraboli.
I don’t believe in failure, because simply by saying you’ve failed, you’ve admitted you attempted. And anyone who attempts is not a failure. Those who truly fail in my eyes are the ones who never try at all. The ones who sit on the couch and whine and moan and wait for the world to change for them. Sarah Dessen.
Even the darkest night will end and the sun will rise. Unknown.
Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world. Harriet Tubman.
For many years now, people with Fibromyalgia have been left in the dark when it comes to having a definitive test for the disease. The only reliable way to make a diagnosis currently is by listening to the patient’s description of symptoms and doing the standard 18 Trigger Point Test, in which you need to have 11 of the 18 tender points to qualify as having Fibromyalgia.
I’ve written in the past about a company that has come up with what they claim is a blood test that shows Fibromyalgia, but although it’s been approved by the FDA in the USA, it hasn’t been backed by any of the major medical foundations or research hospitals. Now there’s a new research study out and it might prove to be on the right track.
The research comes from Ohio State University and was reported in The Journal of Biological Chemistry. Here is what OSU is reporting about the study*:
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For the first time, researchers have evidence that fibromyalgia can be reliably detected in blood samples – work they hope will pave the way for a simple, fast diagnosis.
In a study that appears in the Journal of Biological Chemistry, researchers from The Ohio State University report success in identifying biomarkers of fibromyalgia and differentiating it from a handful of other related diseases.
The discovery could be an important turning point in the care of patients with a disease that is frequently misdiagnosed or undiagnosed, leaving them without proper care and advice on managing their chronic pain and fatigue, said lead researcher Kevin Hackshaw, an associate professor in Ohio State’s College of Medicine and a rheumatologist at the university’s Wexner Medical Center.
Identification of biomarkers of the disease – a “metabolic fingerprint” like that discovered in the new study – could also open up the possibility of targeted treatments, he said.
Dr. Kevin Hackshaw examines fibromyalgia patient Barb Hartong at
The Ohio State University Wexner Medical Center.
To diagnose fibromyalgia, doctors now rely on patient-reported information about a multitude of symptoms and a physical evaluation of a patient’s pain, focusing on specific tender points, he said. But there’s no blood test – no clear-cut, easy-to-use tool to provide a quick answer.
“We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been,” Hackshaw said.
Though fibromyalgia is currently incurable and treatment is limited to exercise, education and antidepressants, accurate diagnosis has many benefits, Hackshaw said. Those include ruling out other diseases, confirming for patients that their symptoms are real and not imagined, and guiding doctors toward disease recognition and appropriate treatment.
“Most physicians nowadays don’t question whether fibromyalgia is real, but there are still sceptics out there,” Hackshaw said.
And many undiagnosed patients are prescribed opioids – strong, addictive painkillers that have not been shown to benefit people with the disease, he said.
“When you look at chronic pain clinics, about 40 per cent of patients on opioids meet the diagnostic criteria for fibromyalgia. Fibromyalgia often gets worse, and certainly doesn’t get better, with opioids.”
Hackshaw and co-author Luis Rodriguez-Saona, an expert in the advanced testing method used in the study, said the next step is a larger-scale clinical trial to determine if the success they saw in this research can be replicated.
The current study included 50 people with a fibromyalgia diagnosis, 29 with rheumatoid arthritis, 19 who have osteoarthritis and 23 with lupus.
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We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been.
Dr. Kevin Hackshaw
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Researchers examined blood samples from each participant using a technique called vibrational spectroscopy, which measures the energy level of molecules within the sample. Scientists in Rodriguez-Saona’s lab detected clear patterns that consistently set fibromyalgia patients’ blood sample results apart from those with other, similar disorders.
First, the researchers analyzed blood samples from participants whose disease status they knew so they could develop a baseline pattern for each diagnosis. Then, using two types of spectroscopy, they evaluated the rest of the samples blindly, without knowing the participants’ diagnoses, and accurately clustered every study participant into the appropriate disease category based on a molecular signature.
“These initial results are remarkable. If we can help speed diagnosis for these patients, their treatment will be better and they’ll likely have better outlooks. There’s nothing worse than being in a grey area where you don’t know what disease you have,” Rodriguez-Saona said.
Graduate student Didem Peren Aykas uses the experimental diagnostic tool, which measures metabolic activity in the blood, distinguishing fibromyalgia from other chronic pain conditions with near 100 per cent accuracy.
His lab mostly concerns itself with using the metabolic fingerprinting technology for food-related research, focusing on issues such as adulteration of milk and cooking oils and helping agriculture companies figure out which plants are best suited to fight disease.
The chance to partner with medical experts to help solve the problem of fibromyalgia misdiagnosis was exciting, said Rodriguez-Saona, a professor of food science and technology at Ohio State. Rodriguez-Saona said for the next study he’d like to examine 150 to 200 subjects per disease group to see if the findings of this research are replicable in a larger, more diverse population. Hackshaw said his goal is to have a test ready for widespread use within five years.
Fibromyalgia is the most common cause of chronic widespread pain in the United States, and disproportionately affects women. The U.S. Centers for Disease Control and Prevention estimates that about 2 per cent of the population – around 4 million adults – has fibromyalgia. Other organizations estimate even higher numbers.
About three in four people with fibromyalgia have not received an accurate diagnosis, according to previous research, and those who do know they have the disease waited for an average of five years between symptom onset and diagnosis. Common symptoms include pain and stiffness all over the body, fatigue, depression, anxiety, sleep problems, headaches and problems with thinking, memory and concentration.
Eventually, this work could lead to the identification of a particular protein or acid – or combination of molecules – that is linked to fibromyalgia, Rodriguez-Saona said.
“We can look back into some of these fingerprints and potentially identify some of the chemicals associated with the differences we are seeing,” he said.
In addition to identifying fibromyalgia, the researchers also found evidence that the metabolic fingerprinting technique has the potential to determine the severity of fibromyalgia in an individual patient.
“This could lead to better, more directed treatment for patients,” Hackshaw said.
Other Ohio State researchers involved with the study were Didem Aykas, Gregory Sigurdson, Marcal Plans Pujolras, Francesca Madiai, Lianbo Yu and Monica Giusti. Tony Buffington, formerly of Ohio State and now at the University of California, Davis, was also a co-author.
The research was supported in part by the Columbus Medical Research Foundation.
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These are exciting times to be in research for Fibromyalgia. Remember
Having Fibromyalgia, or any Invisible Illness is hard to live with. People can’t see your pain like they can with other conditions, and we often have to put up with the platitudes of “but you don’t look sick”, or “oh, I get aches and pains all the time too”. Hearing these comments over and over can lead to depression, frustration and resentment. Stress builds and makes you hurt even more, and so a vicious circle begins.
It’s time to read something more positive, words that you can cling to and keep close at heart. These quotes are from a variety of different people who seem to have a handle on anxiety and stress. I hope their words help you. Thanks to Live Purposefully Now for the list:
Quotes
1. Anxiety’s like a rocking chair. It gives you something to do, but it doesn’t get you very far. Jodi Picoult
2. You don’t have to control your thoughts. You just have to stop letting them control you. Dan Millman
3. Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength. Charles Spurgeon
4. I promise you nothing is as chaotic as it seems. Nothing is worth diminishing your health. Nothing is worth poisoning yourself into stress, anxiety, and fear. Steve Maraboli
5. You can’t always control what goes on outside. But you can always control what goes on inside. Wayne Dyer
6. When you change the way you look at life you literally shape a different life for yourself. Elle Sommer
7. I just give myself permission to suck. I find this hugely liberating. John Green
8. Stress is an ignorant state. It believes everything is an emergency. Natalie Goldberg
9. Don’t try to force anything. Let life be a deep let-go. God opens millions of flowers every day without forcing their buds. Osho
10. Breath is the power behind all things…. I breathe in and know that good things will happen. Tao Porchon-Lynch
11. You must learn to let go. Release the stress. You were never in control anyway.Steve Maraboli
12. If the problem can be solved why worry? If the problem cannot be solved worrying will do you no good. Shantideva
13. The key to reducing anxiety is to let each situation be what it is, instead of what you think it should be. Elle Sommer
14. One of the symptoms of an approaching nervous breakdown is the belief that one’s work is terribly important. Bertrand Russell
15. Many a calm river begins as a turbulent waterfall, yet none hurtles and foams all the way to the sea. Mikhail Lermontov
16. The greatest weapon against stress is our ability to choose one thought over another. William James
17. Stress is the trash of modern life we all generate it but if you don’t dispose of it properly, it will pile up and overtake your life. Danzae Pace
18. Rule number one is, don’t sweat the small stuff. Rule number two is, it’s all small stuff. Robert Eliot
19. Today I refuse to stress myself out about things I cannot control or change. Anonymous
20. If you are distressed by anything external, the pain is not due to the thing itself but to your own estimate of it; and this you have the power to revoke at any moment. Marcus Aurelius
Living A Stress-Free Life
Re-examine Your Values
Or examine them for the first time. Your values will always make it clear to you what you want in life.
Once you are clear on your values, you can begin to identify the things you could do away with. Those things will probably be your stressors, so this tip helps to clear your mind and prepare for the changes ahead.
Forgive Yourself
You can’t begin to live stress-free if you can’t forgive yourself. If there are issues from your past you haven’t dealt with, you are likely to be filled with stress over them. Living with regrets is also stressful.
Life is meant to be enjoyed. And it’s a journey, not a destination. Just because you took a detour to the wrong side doesn’t mean you can’t find your way back to the right path. Work toward becoming a better person. Let your mistakes be life lessons. Everyone makes mistakes, remember that. And put the past in the past where it belongs.
Forgive Others
This goes hand in hand with forgiving yourself. Just as it’s important to forgive yourself, it’s equally important that you forgive others for the wrongs they’ve done to you.
Others are just as worthy of forgiveness as you are. Forgiving others frees you more than it frees them and the extra baggage you’ve been carrying around is liberating to let go of as well.
Accept Your Life Just The Way It Is
No one is promised a perfect life. Though we all strive to achieve happiness and contentment in our lives, it doesn’t always turn out that way. The key to acceptance is to accept it just the way it is. Accepting it doesn’t mean settling in it. It means consciously acknowledging it instead of running away from it in denial.
Whatever your life circumstances, accept them. Only when you accept your life circumstances can you begin to take steps to improve them. This will definitely help you to live stress-free.
Think The Best Of Every Situation
Whatever the situation is that you’re going through, be it divorce, disease, failing at school, getting fired from work, etc., you can still find some good in it. I know that sounds simplistic, but there are always reasons to be grateful as long as you don’t play the victim and accept the circumstances for what they are.
You still have the power to change things. That power is what leads to a stress-free life. Acceptance can be liberating.
Be Present In Everything You Do
It’s easy to be preoccupied with other things while we are doing one thing, and this elevates stress. If you are washing dishes, but now you are worried about paying the bills and the kids’ tuition, and the mortgage, then stress is bound to overwhelm you.
Instead, learn to be present in what you are doing. You can teach yourself to think of only washing the dishes. You can compartmentalize everything so that you don’t let your stressors dominate all your time. This way you don’t let stress prevent you from being productive.
Declutter Your Life
And do this in every way imaginable if you want to live stress-free. People have a lot of stress because they have a lot of material, mental, emotional, financial, intellectual and social clutter. If only they could declutter their lives.
You don’t need all those other things outside of your basic needs. Stop hoarding stuff because managing it means stress. Simplify your life in the best possible way.
Be Grateful
Don’t underestimate the significance of gratitude if you want to live stress-free. Most people can’t get out of stress because instead of being grateful for the good things in their lives, they are busy whining about the bad things in their lives.
Sometimes they whine even about the good things because they’ve become blind to how lucky they are. If you are like that, it’s time to change. Gratitude is the best antidote for stress, so take a spoonful and live stress-free.
Fibromyalgia is a difficult condition to treat because no one seems to present with the same set of symptoms. Every person describes their pain in different ways (aching, throbbing, burning) and their pain can manifest in different parts of the body than where you may experience it. One treatment option is to use Supplements to help the body where it may be lacking in a certain substance.
How Do Vitamins Work?*
A vitamin is a small molecule that your body needs to carry out a certain reaction. Your body has no way to create vitamin molecules itself, so the vitamin molecules must come in through food that you eat. The human body is known to need at least 13 different vitamins:
In the body, proteins, carbohydrates, and fats combine with other substances to yield energy and build tissues. These chemical reactions are catalyzed, or accelerated, by enzymes produced from specific vitamins, and they take place in specific parts of the body.
The vitamins needed by humans are divided into two categories: water-soluble vitamins (the B vitamins and vitamin C) and fat-soluble vitamins (A, D, E, and K). The water-soluble vitamins are absorbed by the intestine and carried by the circulatory system to the specific tissues where they will be put into use. The B vitamins act as coenzymes, compounds that unite with a protein component called an apoenzyme to form an active enzyme. The enzyme then acts as a catalyst in the chemical reactions that transfer energy from the basic food elements to the body. It is not known whether vitamin C acts as a coenzyme.
When a person takes in more water-soluble vitamins than are needed, small amounts are stored in body tissue, but most of the excess is excreted in the urine. Because water-soluble vitamins are not stored in the body in appreciable amounts, a daily supply is essential to prevent depletion.
Fat-soluble vitamins seem to have highly specialized functions. The intestine absorbs fat-soluble vitamins, and the lymph system carries these vitamins to the different parts of the body. Fat-soluble vitamins are involved in maintaining the structure of cell membranes. It is also believed that fat-soluble vitamins are responsible for the synthesis of certain enzymes.
The body can store larger amounts of fat-soluble vitamins than of water-soluble vitamins. The liver provides the chief storage tissue for vitamins A and D, while vitamin E is stored in body fat and to a lesser extent in reproductive organs. Relatively little vitamin K is stored. Excessive intake of fat-soluble vitamins, particularly vitamins A and D, can lead to toxic levels in the body.
Many vitamins work together to regulate several processes within the body. A lack of vitamins or a diet that does not provide adequate amounts of certain vitamins can upset the body’s internal balance or block one or more metabolic reactions*.
Why Do I Need Vitamins?
Optimal nutrition creates a body that is strong and healthy. When you live with Fibromyalgia, you may be at risk of poor nutrition, due to various factors. Some reasons contributing to your fibromyalgia nutrition problems can be:
1) lack of nutrients in the food you consume 2) lack of nutrients in the soil in which your food is grown 3) a spasm in the artery leading to the muscle 4) poor digestion 5) lack of exercise 6) stress (which increases your demand for nutrients) 7) chronic fatigue 8) hormonal imbalances 9) viruses and toxins 10) chronic pain, which makes it difficult to eat
Which Vitamins Are Best For Fibromyalgia
The above chart can help you determine which vitamins might be best for you. Where possible, it’s always best to get your vitamins from a natural food source, but supplements are fine as well. Talk to your doctor so that the two of you are working together to find a plan that fits with your current medications and lifestyle.
In particular, pay attention to the B Vitamins, Vitamin C, Vitamin D and Magnesium. These four are the powerhouses for Fibromyalgia, working on bones and muscles as well as nerves. Since Fibromyalgia is thought to be a condition in which the messages between the brain and the nerves to the spinal cord are messed up, good nerve function is critical to the care of your Fibromyalgia. Magnesium can help with the heavy muscle pain that Fibromites often feel. The B Vitamins are crucial for maintaining your overall good health, including that of the muscles and nervous system.
Other Supplements That May Help
SAMe
S-Adenosyl methionine, more commonly known as SAMe, is a synthetic form of a compound the body naturally produces.
We need it for proper immune function, and it plays a role in forming cartilage and our DNA. As we age, our bodies produce less of it, which may explain the increased aches we feel after each new birthday. Taking a SAMe supplement not only lessens chronic pain, but it also can boost your spirits, as it assists in the production and breakdown of neurotransmitters, such as serotonin, norepinephrine and dopamine – brain hormones that influence and regulate moods.
Fish Oil
Because of its omega-3 fatty acids, fish oil has terrific anti-inflammatory properties, which can help reduce fibro pain. It reduces the body’s production of inflammatory hormones (prostaglandins) and that may mean less stiffness or fewer tender joints.
The recommended dosage is 1 or 2 capsules (or 1 or 2 tablespoons) daily to reduce inflammation and boost your immunity. But check with your doctor first – especially if you take blood-thinning medications, such as aspirin or warfarin (Coumadin).
Ribose
Tight muscles are a common cause of fibro pain. To relax and release, muscles need energy and that’s where ribose supplements come in.
Ribose, a simple sugar, can increase energy by an average of 61% – and cut the pain experienced by fibromyalgia sufferers by an average of 15.6%, according to a 2012 study published in The Open Pain Journal. The author of the study recommends a 5 g dose three times a day.
Brown Seaweed Extract
You may not be familiar with these capsules, but this supplement is one to look for. It’s showing great promise in the fight against chronic pain.
In fact, taking 1,000 mg of brown seaweed extract daily can reduce joint pain and stiffness by 52%, according to a 2011 study from Australia’s Centre of Health and Wellbeing, published in the journal Biologics. Even better: These benefits kicked in after just one week, so you don’t have to wait long to find out if it’s working for you.
Conclusion
There are many options available to you in regards to Vitamins and Supplements when it comes to treating your Fibromyalgia. Check with your doctor for more information and find the ones that may work for you.
If you’ve read my blog before, you know that I live with Chronic Pain and Chronic Fatigue. My pain comes from Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a condition called Trigeminal Neuralgia, Diabetes (and Neuropathy that comes from that), Pelvic Adhesions, a spinal condition called Forestier’s Disease, aka D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis, Gastroparesis and several other medical conditions.
My many faces of pain
I’ve been living with Chronic pain for over 30 years now, from the time I was a teen, and I’ve learned a few things in those years. I’d like to share 10 of those things with you now.
1. THERE IS ALWAYS HOPE
No matter how long I’ve been in pain for, I’ve never given up hope that things are going to get better. Some days I have are pure agony. Some days are pure delight. I cling to the good days as a reminder that things can be better and often are. There is always hope.
2. A GOOD DOCTOR IS TO BE TREASURED
Doctors have a hard time treating patients with chronic pain because they haven’t been trained well. They’re trained to diagnose a problem and solve it, so chronic pain is frustrating for them as well. If you don’t have a sympathetic doctor who is doing everything they can for you, find another doctor. When you do find one, be honest with them. Share everything…your depression, your anger, your worries. A good doctor wants to help you, but if you can’t share with them, you’re not giving them the chance to do all they can.
3. SUPPORT GROUPS AREN’T RIGHT FOR EVERYONE
Some people thrive in a support group. Others tend to get tired of the constant back patting and “Oh my gawd, I’m so sorry” conversations. Some are in the middle. I think a support group can be a great thing, as long as it’s the right fit. You want a group where you can feel heard and valued while offering support to the others as well – not just a one-way street. I also think it’s important to not jump into every group you hear about. That just becomes confusing and almost like a competition, to see how much sympathy you can drum up. You have to be willing to give back and you can’t forge honest relationships with people when you’re in a dozen active groups in my opinion. Unless that’s all you do all day long. And if that’s the case, I feel sorry for you, because you’re obviously not getting something you truly need.
4. CHRONIC PAIN IS ALMOST IMPOSSIBLE TO EXPLAIN TO OTHERS
Despite having great tools like the Spoon Theory and the Battery Analogy to talk about how much energy it costs us to live with chronic pain, it’s almost impossible to get others to understand what it’s like to live with chronic pain day in and day out. Here’s the thing…THE PAIN NEVER GOES AWAY. I can’t make it any more clear than that. No matter what I’m doing, or not doing. I’m hurting. Sometimes I’m in agony, like when I get a Trigeminal Neuralgia Flare up. Try to imagine the last time you experienced brain freeze from eating/drinking something cold…do you remember that sensation? That agonizing pierce of pain in your brain? Now try to imagine that same feeling but in your cheekbone…for 12 hours in a row. Can’t imagine it?? Go try and get brain freeze as a reminder. That’s what my TN flare-ups are like. They start in my cheekbone and spread to my sinus cavity and my eye, then down to my jaw, and to my esophagus. I get spasms in my throat and often I get chest pain as well. For 12 hours.
My Fibromyalgia pain feels like my limbs are in concrete…it’s a heavy throbbing sensation in my arms and legs
