When I wrote my post An Attitude of Gratitude, I received a lot of good comments on it, both those left with the post and in other formats. I meant every word of that post and I wanted to expand on that today, and THANK my body for all it does, despite Fibromyalgia (and several other health conditions). Here are some of the reasons I have to thank my body (and my mind!)
I Have A Strong And Compassionate Heart
Physically, my heart is in tip-top shape. After experiencing some chest pain a few years ago, I was put through a battery of tests including a heart scan and an ultrasound. Everything came back showing my heart to be in excellent shape and my risk of heart attack to be at approximately 1% based on all factors in my life. Now that’s pretty amazing when you consider all the health conditions I live with, but I trust the tests and the monitoring.
What I tend to be most concerned with when it comes to my heart is how compassionate am I? Do I care about others? Do I show it? Do I reach out when others need a hand or a shoulder to lean on? Those are the heart conditions that I worry about and I work hard to make sure I’m staying heart-healthy in this area too.
I’ve Been Blessed With Common Sense
Not many people know that I never graduated High School. I only finished with a Grade 11 education, and while I’ve taken College courses to complete a Certified Event Planning Certificate, I’ve never furthered my formal education. I was able to get a good job in a field I loved by working hard and having common sense, which I believe is something sorely lacking in many people these days.
I don’t know if common sense is something you’re born with or something you learn. I only know that it comes naturally to me. It’s intuitive, it’s part of me and I don’t struggle with it…it’s just who I am. I may not be the most well-educated person in the group, but at least I have this gift. I’m always thinking and strategizing about scenarios and how I would handle them. I rarely panic anymore about things…I just seem to know how to get on with it. I’m eternally grateful for this ability and I don’t take it for granted.
I’m Able To Give Back To Others
Volunteering is hugely important to me. Having the ability to give back to others makes me feel good and that’s why I sit on committees and working groups, so I can make the improvements that enhance the lives of others. My involvement with Patient Voices Network was a game-changer from the first time I attended the orientation session. PVN is an organization in British Columbia that allows ordinary citizens to have a say in how health care is delivered in our province.
Through my involvement with PVN, I’ve been able to attend conferences and education sessions, sit on committees (4 of them at the moment!) and take part in surveys, including being part of a group that is actually creating a Provincial survey for release in the next year. I’ve traveled for my volunteer work, met incredible accomplished people at all levels of business and government and work alongside other Patient Partners who, like me, are out there making change happen.
I Can Spend Time with Loved Ones
Being able to spend time with my husband and kids and friends is critical to my overall wellbeing. Ray and I have a motorcycle and we love to go for rides around Vancouver Island and the Gulf Islands. When I travel with my volunteer work, I’m often able to meet with our daughter Ashley for lunch or dinner in Vancouver where she works, and this is a huge treat. Our son Troy is in Calgary and I am able to see him when I travel there to stay with a dear girlfriend Charlotte twice a year. These are great blessings to me!
I don’t have a lot of friends who live near me, but I treasure the ones I can get together with all the more, especially Lorna. My online friends play an important part in my life as well –I’d be lost without them. I belong to a few online groups who fulfill a need in me that only they could meet. My body and mind function better because of all these interactions and I tend to forget that sometimes, especially when I’m having a high pain day. I can get very reclusive, but it’s good to know that loved ones are there when I need them, just as I am there for them.
I’m Still Able To Read And Listen To Music
I consider myself lucky that none of my health conditions have taken away the deep pleasure I get from reading and from music. I love reading the life stories of others in the form of biographies and autobiographies. Great fiction warms my heart. True Crime stirs my compassion for others. Reading a good book of any genre is a total act of joy for me and to lose that ability would be heartbreaking, even with all the other options available.
The same goes for music. I don’t listen to music every day, or even that often, but when I’m in the mood for it, it completely fills my soul. My tastes are eclectic, running from Acapella to Zydeco and I’m grateful there are so many ways to be exposed to music in this digital age. The internet has been a wonderful source of entertainment in my life and I’m thankful my body allows me to enjoy the endless variety it brings.
I’m Grateful To Be Able To Blog
No matter what my body throws at me physically, I’m still able to write and for that, I have no words. Writing is very personal for me, as it’s all based on my life and what I’m going through. My thoughts and hopes and disappointments are all shared in equal value and it’s a unique feeling to expose myself like that. I don’t mind the scrutiny at all, because I do this of my own free will, but there are times I wonder if I should censor myself more or be even more open.
No matter how bad things get for me physically, I cling to the knowledge that it can get better. Yes, it might get worse, and often does, but even in the worst of my pain, when I’m writhing in bed in agony, there’s a part of me that refuses to give up or give in. That tiny stubborn piece of me that says “hold on, pain ends.” HOPE.
It’s an honour to know that you, dear reader, are taking in my words and finding something useful. That’s something I’m grateful to my body for, too. No matter how bad things may get physically, you can’t take that away from me.
Fibromyalgia is a complex condition that affects millions of people around the world. There are many questions that people ask when they first find out they have Fibro, and I thought I’d answer some of the more common ones, to help provide some education.
What Are The First Signs Of Fibromyalgia
There are many signs of Fibro but the ones most people experience first is widespread pain and tenderness throughout the body. You may experience pain in only one or two areas, or it may be your entire body. Typically, there are tenderpoints at 18 specific sites on your body, and these are used to help determine if you have Fibro.
Other symptoms of Fibro include:
What Are Tender Points?
Tender points refer to 18 locations on the body that are ultra-sensitive to pain when touched or pressed. Fibro is frequently diagnosed using the Tender Point Test…if you have 11 of the 18 points, you are considered to have Fibro.
Is Fibromyalgia An Autoimmune Disease?
Fibromyalgia is NOT considered an autoimmune disease. Instead, researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Fibromyalgia doesn’t qualify as an autoimmune disorder because it doesn’t cause inflammation. Fibromyalgia is difficult to diagnose because its symptoms are similar or associated with other conditions, including some autoimmune disorders.
In many cases, fibromyalgia can occur simultaneously with autoimmune disorders.
Emotional or physical trauma can cause the development of fibromyalgia and trigger symptom flare-ups. The mechanism behind this is associated with the affected individual’s hypothalamic-pituitary-adrenal axis. Emotional stressors can cause the physiological stress response to become activated, and lead to the delivery of sensory input information to the brain.
Repeated and excessive stimulation of the functional units of this response in an individual can cause their effector systems to become more sensitive. Greater sensitivity causes alternative or less significant stressors to activate the stress response easily.
The combination of the stress response, emotional reactions, physiological responses, and biological reactions that occur and interact with each other due to physical and emotional trauma can cause the development of fibromyalgia.
Of the population of fibromyalgia patients, around half has existing post-traumatic stress disorder, and two-thirds of these individuals had developed fibromyalgia after the commencement of their PTSD. Some individuals may be at an increased risk of developing fibromyalgia due to the failure of certain psychological buffers to work effectively on emotional stress that is caused by everyday life events.
Physical trauma contributes because it causes emotional stress. These mechanisms related to the patient’s brain may primarily drive the chain of neurophysiological responses known to cause fibromyalgia.
Is Fibromyalgia Real or Fake?
Doctors and patients alike state that fibromyalgia is a very real condition. Pain is often subjective and can be difficult to measure. Because there are no lab tests that can show Fibromyalgia, people assume that it is fake. As a result, the most common misconception about fibromyalgia is that it isn’t a real condition.
In both Canada and the United States, fibromyalgia is now considered a condition that qualifies for Disability. The European Parliament has signed a declaration calling for the recognition of fibromyalgia as a disease which causes disability with a right to claim exemption.
What Are The Best Medications For Fibromyalgia?
NSAIDs (non-steroidal anti-inflammatory drugs) like naproxen (Aleve) and ibuprofen (Motrin, Advil) don’t appear to work for fibromyalgia pain. Opioid narcotics are powerful pain-relieving medications that work for some types of pain, but they don’t always work for fibromyalgia. They can also be harmful—and addictive.
The narcotic-like Tramadol (Ultram) has been shown to have some effectiveness with Fibromyalgia for pain relief. Low-dose amitriptyline can also be helpful. Tizanidine and cyclobenzaprine are muscle relaxants that help treat muscle pain from fibromyalgia.
There are three medications that have been approved for use for fibromyalgia. These medications include Cymbalta (duloxetine), Savella (milnacipran) and Lyrica (pregabalin).
Each of them works in the brain: Cymbalta and Savella belong to a class of medications called serotonin and norepinephrine reuptake inhibitors (SNRIs) whereas Lyrica is a drug that targets nerve signals. It has long been used to relieve nerve pain in patients with shingles and diabetic neuropathy. It is also used to treat partial seizures.
For other treatments, this post offers several suggestions for ways to help with Fibro pain. Another option is to try Cannabis or CBD Oil.
How Life Changing Is Fibromyalgia?
Fibromyalgia can affect you in both mild and severe forms. You may find that with medication, you are able to continue to work and engage in other activities without discomfort. Other people find that even with medications, they are in too much pain to maintain their previous lifestyles.
Disability may need to be sought if you are unable to continue working because of your Fibro. You may need to modifiy activities, use mobility aids or adaptive devices or otherwise change your lifestyle to accomodate your pain and fatigue. Every individual will feel their Fibro differently and you may find that your condition changes constantly as well.
What Helps Fibromyalgia?
Rest, good nutrition, mild exercise and a positive frame of mind all go a long way in helping to live with Fibromyalgia. Lack of movement is one of the biggest mistakes you can make if you have Fibro. It causes your muscles to tighten even more, so exercise such as walking, biking or swimming can be helpful in keeping you flexible and having less pain.
A diet rich in fruits and vegetables, lean protein and good carbohydrates is essential. If you are overweight, you might want to try losing some extra pounds to help with joint pain.
Getting the proper amount of sleep can be very difficult with Fibromyalgia. Follow a sleep plan at night to get your best rest possible and nap if you need to during the day in moderation. A well-rested body is better able to function fully.
Finally, try to maintain a positive perspective. If you find yourself struggling with negative thoughts, it may be helpful to seek counselling or coaching. Support groups either in-person or online can also be very helpful.
Fibromyalgia can be a very difficult condition to diagnose and treat, but as you can see, there are things you can do that make a difference. The more you can educate yourself, the better your outcomes can be. Remember,
Living with Chronic Pain is never easy. You’re desperate for the pain to end, but most doctors are unprepared in helping you live with Chronic Pain. They seem to be limited to treatments like prescription medications and that’s about it.
There are many ways that you can help improve the quality of your life and I’d like to share several of them with you. I have not personally tried every technique listed, but all of them are worth investigating so you can gather as much information as possible on whether they are worth it for you. Let’s get started.
There are various types of massage available and all of them have the potential of making your Chronic Pain feel better. Styles include:
Each style works the body in a different way and all styles have the ability to help with:
Chiropractic is a discipline that is concerned with the diagnosis and treatment of mechanical disorders of the musculoskeletal system, especially the spine. Chiropractors have proposed, especially those in the field’s early history, that such disorders affect general health via the nervous system
Chiropractic care provides diagnosis and treatment without the use of drugs or surgery for problems related to your muscles, joints, nerves, and spine. Common conditions that are treated include low back pain, neck pain, sciatica, headaches, and sprains. Chiropractic doctors can also provide advice on nutrition and exercise to support recovery and promote prevention.
Ayurvedic medicine (“Ayurveda” for short) is one of the world’s oldest holistic (“whole-body”) healing systems. It was developed more than 3,000 years ago in India.
It’s based on the belief that health and wellness depend on a delicate balance between the mind, body, and spirit. Its main goal is to promote good health, not fight disease. But treatments may be geared toward specific health problems.
Students of CAM therapy believe that everything in the universe – dead or alive – is connected. If your mind, body, and spirit are in harmony with the universe, you have good health. When something disrupts this balance, you get sick. Among the things that can upset this balance are genetic or birth defects, injuries, climate and seasonal change, age, and your emotions.
Those who practice Ayurveda believe every person is made of five basic elements found in the universe: space, air, fire, water, and earth. These combine in the human body to form three life forces or energies, called doshas. They control how your body works. They are Vata dosha (space and air); Pitta dosha (fire and water); and Kapha dosha (water and earth).
Everyone inherits a unique mix of the three doshas. But one is usually stronger than the others. Each one controls a different body function. It’s believed that your chances of getting sick — and the health issues you develop — are linked to the balance of your doshas.
An Ayurvedic practitioner will create a treatment plan specifically designed for you. He’ll take into account your unique physical and emotional makeup, your primary life force, and the balance between all three of these elements.
The goal of treatment is to cleanse your body of undigested food, which can stay in your body and lead to illness. The cleansing process—called “panchakarma”— is designed to reduce your symptoms and restore harmony and balance.
To achieve this, an Ayurvedic practitioner might rely on blood purification, massage, medical oils, herbs, and enemas or laxatives.
Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by “laying on hands” and is based on the idea that an unseen “life force energy” flows through us and is what causes us to be alive. If one’s “life force energy” is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.
A treatment feels like a wonderful glowing radiance that flows through and around you. Reiki treats the whole person including body, emotions, mind and spirit creating many beneficial effects that include relaxation and feelings of peace, security and wellbeing. Many have reported miraculous results.
Reiki is a simple, natural and safe method of spiritual healing and self-improvement that everyone can use. It may be effective in helping Chronic Pain, and generally creates a beneficial effect. It may also work in conjunction with other medical or therapeutic techniques to relieve side effects and promote recovery.
Healthline.com says that in recent years, the treatment of fascia has exploded in popularity. The idea is that the fascia, or myofascial tissue, contributes to pain and cellulite when it’s tight.
For this reason, fascia manipulation, a technique that aims to loosen the fascia through physical manipulation and pressure, has become a trending topic in the health and wellness realm.
One widely popular method is fascia blasting. This technique uses a tool that’s designed to loosen the fascia, which is supposed to reduce pain and cellulite.
A non-physical method of managing Chronic Pain, Cognitive Behavior Therapy, aka CBT is a structured, time-limited, problem-focused and goal oriented form of psychotherapy. CBT helps people learn to identify, question and change how their thoughts, attitudes and beliefs relate to the emotional and behavioural reactions that cause them difficulty.
It works on Chronic Pain by helping to remove limiting thoughts about your pain, and move you towards a better understanding of what pain is, and how you can manage it. Pain doesn’t always mean something is getting worse…and when we catastrophize pain, we can actually amplify it. By using CBT, you:
identify distortions in your thinking
see thoughts as ideas about what is going on, rather than as facts
stand back from your thinking to consider situations from different viewpoints.
Acupuncture is a form of traditional Chinese medicine that has been practiced for centuries. It’s based on the theory that energy, called chi (pronounced “chee”), flows through and around your body along pathways called meridians.
Acupuncturists believe that illness occurs when something blocks or unbalances your chi. Acupuncture is a way to unblock or influence chi and help it flow back into balance.
Acupuncture is done by putting very thin needles into your skin at certain points on your body. This is done to influence the energy flow. Sometimes heat, pressure, or mild electrical current is used along with needles
As you can see, there are many alternative forms of treatment that might be worth looking into. Which ones have you tried already? Which ones would you like to try? Leave your comments below. Remember,
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.
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.
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…
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.
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…
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.
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.
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…
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
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.
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.
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.
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 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.
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’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.
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
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.
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.
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
“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
Live purely. Be quiet.
Do your work with mastery.
Like the moon, come out
from behind the clouds!
― 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…)