Note: this post contains Affiliate Links which provides me with a small income at no cost to you. Clicking on the links will take you to specific products I suggest. You are under no obligation to purchase, these are simply my recommendations.
When you’ve been living with Chronic Pain for an extended period of time, you know that you’re going to have good days and bad days. What do you do when you start worrying about the bad days – when they’re going to hit, how long they’re going to last and how can you manage to get through them?
I think one of the most important things you can do with Chronic Pain is to acknowledge it. Just because you live with it every day doesn’t mean you’ve come to peace about it. You may try to ignore it, hoping it will go away or you may confront it head-on. It’s important to recognize it for what it is though…pain that disrupts your life and causes your world to spin on a wobbly axis.
Chronic Pain is a force to be reckoned with. You may live most of your time with your pain at a manageable level, but inevitably, there comes a time when a flare-up happens and you find yourself struggling to manage. There are tips and tricks for flare-ups that might help and I’d like to suggest the following:
Easier said than done, but when your body has launched into “fight or flight” mode, you need to find a way to slow that adreneline down to where you are back in control. This is a good time to try some deep breathing techniques such as the 7-4-7 approach.
Breath in for a count of 7, hold for a count of 4 and breath out for a count of 7. Do this several times until you are able to feel your body starting to relax a bit. By focusing on the breathing, you trick the body into believing the danger is over, so your heart rate returns to normal. You will likely still feel pain, but it should be more manageable.
Heat and/or Cold
Heat and cold are both equally good for dealing with pain. I personally prefer heat as it helps to relax my tense muscles. Cold is better for acute injuries or when inflammation is a problem. Using a heating pad like this one can offer the benefits of a steady source of heat without injuring the skin:
Many people find that Essential Oils offer them benefits to help relieve their Chronic Pain. Certain blends of Essentials can help to control pain, relax you and ease your state of mind. There are many sources of Essential Oils – I like these ones on Amazon.com:
Knowing more about Chronic Pain can help you deal with it better. There are numerous books out there that serve as excellent resources for knowledge. I personally have read these two and found them extremely useful:
Support Groups, either in person or online can be so valuable when it comes to dealing with Chronic Pain. Just knowing that others are going through the same thing as you can be empowering. To find a support group in your local area, trying Googling “Pain Support” and your city’s name.
Online, I suggest finding a good Facebook group. There’s one for almost every Invisible Illness (and Visible Illnesses as well) and can be easily found by searching by name in Facebook. One that I recommend is here:
Based in Australia, they have members from around the world, but predominantly Australia, the USA and Canada. I am a member here and the group is extremely outgoing, friendly and they “get it”. Everyone lives with their own medical challenges, so they understand what you’re going through and are super supportive.
Note: This post contains affiliate links. I will receive a small percentage from the total purchase price at no extra cost to you.
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.
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.
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!
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.
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.
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!
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,
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:
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.
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:
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
Headaches, confusion and memory loss
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:
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.
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
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.
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
Shortness of breath
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:
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
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 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.
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.
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.
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.
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.
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.
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.
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)
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:
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.
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
Chronic Pain can be caused by the following:
Past injuries or surgeries
Migraines and other headaches
Fibromyalgia, a condition in which people feel muscle pain throughout their bodies
Other invisible illnesses such as Lupus, MS or Ehlers-Danlos Syndrome.
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
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)
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.
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
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
Let’s welcome our next guest, the adorable Amber Blackburn!
Introduce yourself and tell us a bit about you…
Hi y’all! My name is Amber Blackburn, I am 33 (almost 34) and live in the middle of the United States. I am a Registered Nurse by trade who is now a Chronic Illness Blogger and Advocate due the fact that my health has declined to the point that I can no longer work a standard job!
Chronic illness(es)/disabilities I have…
Way too many for someone my age! I don’t even know where to start!! I have Systemic Lupus (SLE), Fibromyalgia, Bertolottis Syndrome, IBS, Anxiety, Depression, Endometriosis, Interstitial Cystitis, Secondary Adrenal Insufficiency due to long term steroid use, POTs, Debilitating Migraines (Some of which are hemiplegic). I think that’s all my conditions. Or at least the important ones. I will note that many of my issues alone are not disabling but in combination with all the others they can be.
My symptoms/condition began and My diagnosis process was…
I am going to combine these two questions as it makes my response easier.
I was admitted to the hospital for a respiratory illness in February 2012. I was in the hospital for 5 days and they could never really figure out what was going on. So I was put on high dose steroids and antibiotics and was told that would probably fix it. Over the following months more symptoms started showing up beyond the respiratory issues like extreme fatigue, joint pain and joint swelling. They had done all kinds of labs up to this point and nothing had shown up. But finally my Pulmonologist did a repeat ANA and lupus markers in April 2012 and they came back very positive. The joint pain and swelling continued to worsen to the point that I had to buy bigger shoes and could hardly walk.
So I saw a Rheumatologist in the summer of 2012 and was diagnosed with Systemic Lupus and Fibromyalgia. But looking back my symptoms go back to the late 90s, early 2000s. During my junior year of High School in 2001 I was diagnosed with Mono and it lasted SIX months, which does not happen. So we are pretty sure part of that was actually my first lupus flare. My official Endometriosis and Interstitial Cystitis diagnosis was in November 2011 but those symptoms went back to 1998 when I started having such horrible abdominal pain that no one could diagnose and blamed it on IBS. The hardest part of living with my illness/disabilities is…
If I am being 100% honest the hardest part of living with my illnesses is not always dealing with my health. Outside of the pain and fatigue when they get really bad, I find the hardest part to be the social aspects. This may sound silly but it’s super hard to have to stay home all winter because you pick up every germ despite wearing a mask and washing your hands. It’s hard having to cancel plans because you don’t feel good enough to leave the house. Also, trying to explain to those who aren’t sick why you are canceling for the third time this month is awful and hard on relationships. For me (and surely others) the social aspect is probably the hardest part of living with a chronic illness, outside of the obvious health issues.
A typical day for me involves…
A typical day for me starts with me waking up and rolling over and stretching. Trying to see what hurts and what doesn’t. Then spending the next 10-15 min actually getting out of bed because if I don’t do it slowly I’ll pay for it later. What happens after that depends on the day. If I have a doctors appointment or somewhere to be, I will start the getting ready process which can take 10 mins or an hour depending on how I feel, and how ready I need to be. As well as how many breaks I will need to take. If I don’t have anywhere to be I go straight upstairs to eat and take care of my dogs. In the morning I will always be checking social media and do my daily posts (that sometimes become 3 times a week posts) on all my platforms.
I will most likely be writing for my blog and posting if it’s a day to post. I try to write something for the blog everyday, that way I don’t feel rushed at anytime because I don’t have anything written. I may not get a whole piece written every day but I try to write something. There is always an afternoon “nap” if I can’t get comfortable and sleep than I at least lay in bed and rest. And the evenings are usually pretty chill. Generally speaking, I spend the evenings watching a show or reading a book. I take a shower and try to be in bed by nine. When I fall asleep will depend on what I did that day and how much pain I’m in. Everyday is different for me because I never know how I will feel. I always know if I did a lot the day before that the next day will be a day of rest. Honestly, I can’t plan to far in advance because I never know how I will feel.
The one thing I cannot live without is…
I hate to admit this, my phone. I say this because I use my phone for everything. I use it for communication, with my friends, family and medical providers. I use it to help run the Chronic Illness Support Group on Facebook (Lupie Groupies) I started about 5 years ago which continues to grow. I use it to blog, to research, and post on social media. And I use it for my jobs, I sell Senegence Makeup as well as the Chronic Illness Symptom Tracker that I created for those with chronic illness.. For those reasons my cell phone is important to me.
Being chronically ill/disabled has taught me…
Being chronically ill has taught me so so many things. But I honestly think the biggest thing is that being sick has a way of showing you who your true friends (and family sadly) are. I know it sounds cliche but it’s very true.
What advice would I give someone recently diagnosed…
The biggest piece of advice I would give to someone who was recently diagnosed would be to find a support group! No matter if it is online or in person, just find one. Your friends and family are good to talk to, but a support group filled with people in similar situations is imperative for anyone newly diagnosed as well as for those who have been ill for many years. A support groups gives you a place where you can share what is really going on and know that you are talking to people who will understand and won’t judge you.
My support system is…
My support group is AMAZING!! I have the most amazing family and group of friends a person could ever ask for. If I didn’t have my family I don’t know where I would be right now. I am truly lucky. If I had one day symptom/disability-free I would…
Go to the beach or lake (really any body of water) and spend the day outside playing in the water without the fear of a flare.
One positive of having a chronic illness/disability is…
One positive thing about having a chronic Illness is meeting a group of wonderful and amazingly strong people whom you would have probably never met had you not gotten sick.
Let’s meet our next Guest (with the gorgeous smile), Ellie Trinowski, and find out more about her:
Introduce yourself and tell us a bit about you…
My name is Ellie Trinowski, and I live in Cleveland Georgia. I’m a wife, mother, and Grammie.
Before I stopped working, I was an event planner and coordinator for weddings in the Northeast Georgia Mountains. I worked with wineries and catering companies to create memorable events in picturesque settings. I loved my work. Now, I am a full-time grandmother of a talented little gymnast named Violet. I love this gig, too!
Chronic illness(es)/disabilities I have…
I have psoriasis(PsO), psoriatic arthritis(PsA), fibromyalgia, epidermolysis bullosa acquisita(EBA), and bullous pemphigoid(BP).
Beyond these autoimmune diseases, I have also survived multiple bilateral pulmonary embolism, and I live with a supraventricular tachycardia.
My symptoms/condition began…
I was 17 years old when the psoriasis begin. It wasn’t until I was 44 years old that I was diagnosed with psoriatic arthritis. Within the next year, symptoms of fibromyalgia began.
In the summer of 2017, I began realizing symptoms of a rare skin disease called epidermolysis bullosa acquisita. By the end of the year, I was diagnosed with bullous pemphigoid.
My diagnosis process was…
I have been very fortunate in the duration that it took for my disease processes to be diagnosed by medical professionals. The largest obstacle was the pain and limited mobility that came with PsA initially. It did take almost two years of suffering before I found the right doctor to diagnose me with PsA. Dr. Jatin Patel also diagnosed me with Fibromyalgia and recognized the symptoms of my rare skin disease. He was expeditious in getting me to a dermatologist, Dr. Carmen Julian, for evaluation. After several biopsies and blood work, I was diagnosed with EBA. Finally, it was determined that I also had BP at Emory in Atlanta by Dr. Ronald Feldman, who is the professor of dermatology at the clinic for blistering diseases.
The hardest part of living with my illness/disabilities is…
I do not appear sick. It is incredibly frustrating to have people judge me when I use a mobility cart in a grocery store and have people ask me why. I’m 50 years old. Once I had an elderly woman walk up to me, while I was on a mobility cart, and she asked me to get off because she needed it more. Of course, there was no way for her to know that I had a flare of all of my diseases at the same time. I was in a lot of pain, I couldn’t walk well and my skin disease was causing ridiculous itching. I was feeling frustrated and embarrassed because she did this in the middle of the pharmacy area of the store. I relinquished and gave up the cart to her.
A typical day for me…
Involves a lot of driving!
Now that I am a full-time Grammy, I drive my granddaughter to school, and I pick her up every day. I take her to gymnastics practice, and we might go to the park if there is no gym. She helps me pick up groceries and we head home.
If I am not flaring, I plan dinner most days, and if I’m doing really well dinner actually gets made! I try to do one thing that contributes to house cleaning every day, like vacuuming the living room or cleaning a bathroom. I find that things don’t get too out of hand that way. Violet always helps me out with chores, as well.
By early evening, I am typically on the couch because I’m toast! I will make it into my room, take my medicine and fall into my bed by 8pm, where I watch Netflix.
The one thing I cannot live without is…
The support of my family! I am blessed beyond measure! My husband works full-time and still does the laundry for me and anything else that I can’t handle that I would have done before my disabilities. My mother and father live right next door, and they are incredible when it comes to anticipating my needs. Dad gave me a cane when walking became difficult. Besides checking on me often, my dad brought a walker over before I admitted I needed it. My mother randomly shows up with leftovers or muffins, and a smile to cheer me up. My little Violet fetches things for me, and helps me in the kitchen, or when I need to tidy up the house.
Being ill/disabled has taught me…
Although I have never been one to judge, being disabled has taught me never to judge a book by its cover. You never know what somebody is going through. It has also taught me that life is short and that you must make the most of every day. After being admitted to the hospital on October 5, 2017, and being told I was lucky to be alive after blood clots had been found in both of my lungs, I tend to look at every day with different eyes. I’m incredibly grateful for my life.
It is not always easy on painful days, but it is imperative when you consider it might be your last.
What advice would I give someone recently diagnosed…
I would tell someone who was recently diagnosed with an illness or disability that they must stand up for themselves. It is so important to speak your truth and ask plenty of questions. Take notes and research responsibly. Instead of researching on Google, type in Google Scholar and utilize that platform for reliable research. Ask for a second opinion if necessary and get to know others who suffer from chronic illness. This gives you a sense that you are not alone and it is also a great resource to gather ideas to help yourself.
My support system is…
I have always believed that it takes a village to accomplish anything. As I mentioned my family is my number one support. I also value the social media community of chronically ill patients. I am grateful to the people who spend time sharing their experiences and knowledge with others to effect change in policies, as well as, suggestions for the lifestyle alterations we must make in our lives. Others who have lived our pain and challenges sharing their experience is a priceless resource I am grateful for!
If I had one day symptom/disability-free I would…
Go for a hike in the mountains with my granddaughter. I used to push Violet in her stroller all over this beautiful place we live in. When she became a toddler, I would take her with me on hikes to wear her out and get a good nap out of her! I had no idea back then that this simple ritual would be taken away from me before I was 50 years old.
One positive of having a chronic illness/disability is…
The ability to effect change. Because of outlets like the National Psoriasis Foundation and the Arthritis Foundation, I can connect with others and use my voice to effect change in my state and even in my country. I am currently advocating for step therapy reform in the state of Georgia. I was able to bring my voice to this legislation by traveling to the Capitol on Advocacy Day and share my story with others. I love that sense of accomplishment and progress.
One of the hardest parts of living with an Invisible Illness such as Fibromyalgia, MS, Ehlers Danlos, etc. is that you quite often look just fine on the outside, while your insides are screaming in pain. This leads many people to wonder if you truly are ill, or how serious your illness actually is. How do you handle this, as a Person with Chronic Pain (PwCP)?
For one thing, you should never have to make excuses for your pain to anyone. What you feel is what you feel, and there is never a reason to justify it or prove it, not even to your doctors. For years, people with Fibromyalgia went undiagnosed or misdiagnosed because Pain was often the only symptom a patient could describe. There are no other outward symptoms and nothing comes back in the blood tests or x-rays that a doctor might order. It’s only through using the 18 Tender Points and determining how many of them you have that a definitive diagnosis can be made for Fibro.
Other diseases often come with outward symptoms – the “butterfly rash” of lupus, the enlarged joints of Rheumatoid Arthritis, the dislocating joints of Ehler Danlos, the varying symptoms of MS – all of them a visual reminder that there is something wrong with a person. Fibro doesn’t present itself that way, and so a person can often look “normal” like everyone else, yet be in a flare up.
So how do you handle it when the people who are closest to you don’t believe you are ill or doubt the severity of your illness. The first step is to educate them on what Fibromyalgia is: a disorder characterized by widespread pain, which causes many symptoms like extreme fatigue, sleep issues, memory loss and mood issues. It is essentially a very painful, exhausting disease, for which there is no cure and few treatments.” It is becoming much more recognized in the Medical field, unlike in the past, and is well accepted as a legitimate condition, just like arthritis, Lupus, MS, etc.
Basically, your brain miscommunicates with the nerves in the spinal cord and sends out the wrong messages to your body, resulting in an overload of symptoms. This graphic may be helpful in showing you just some of what you can experience:
And this is the reason it’s such a hard disease to diagnose because these symptoms are often looked at just on their own, and not seen as part of the bigger picture. It’s no wonder people look at us and think we’re crazy. To have all these symptoms and yet still look perfectly normal on the outside…well, I’d wonder too perhaps. That’s where the education comes in. The more we teach people about Fibromyalgia and how it mimics so many other diseases, the more people will realize just how huge a burden we are carrying every day.
Nobody wants to be told they look awful though, so how do you break this Catch-22? You want people to see you as you really are, but you don’t necessarily want to look ill at the same time. Are you obligated to dress up and put on makeup everytime you go out, just to look “good” for strangers? Of course not, but I am advocating that you do it for yourself if you’re able. Run a brush through your hair, throw some lipstick on, go for a trendier haircut or a manicure. Never do it for someone else though and never let a stranger’s comments get to you. Only you know how you’re feeling at any point and sometimes it’s just not possible to do these sorts of things. Pain may get in the way, or finances or depression…in these times, just do the best you can with what you have in the way of energy and time and desire.
Remember…you are perfect just the way you are…everything else you do is a bonus.
Education of others is key, and I truly believe that the more we can share about Fibromyalgia and other Invisible Illnesses with them, the more they will understand what we are going through, and the more compassionate they will become. Perhaps then they will stop commenting on how “fine” we look, and will start seeing us in a true light. Maybe they will see our struggles, our problems, our symptoms and what we have to go through on a daily basis just to survive and finally understand how difficult our lives truly are. Then and only then will come the appreciation and admiration we’ve been waiting for.
I’ve just had a new piece of writing published on the Pain News Network as a guest columnist. I wanted to write about how we grieve when we lose so much of our lives to a diagnosis of Fibromyalgia, Osteoarthritis, MS, Ehler-Danlos, Lupus and other Invisible Illnesses.
Now, I saw information about the Pain News Network on the blog of someone I follow. I looked them up and saw that they accept articles from guest writers. I contacted the Editor to see what the requirements were and he told me that basically anything to do with real life and pain, as long as it hadn’t been previously published. So I sat down, thought for a few minutes and literally banged this out. He thought it was good enough and voíla, it was done!
Here is the link, and I would love your thoughts about it in the comments below. I guess I’ll have to update my “I’ve been published” section…this is my first publication outside of The Mighty!!!
I’m so excited and I’m really damn proud of myself!
There is always hope!