This Fibromyalgia awareness day seems like a good day to share a little of my experience of living with and learning from fibromyalgia. I should tell you what fibromyalgia is. From the definition it means pain in the muscles and tissue. This does not nearly begin to describe the many challenges people living with fibromyalgia face. The research yields ever changing theories to explain the many symptoms. The lack of a conclusive test provides those who lack compassion with absolute evidence that “it is all in our heads” and we are “just looking for attention“. Fibromyalgia people will tell you that the greatest challenge by far is a lack of support and acknowledgement by those we most need support from. This poster provides more of an understanding than the definition ever could.
My diagnosis process only came to some form of clarity around September 2014. The rapidly moving pain and the intensity of the muscle twitches alerted one of the many medical practitioners to the fact that I was struggling with fibromyalgia. I learned about tender spots the painful way. The physiotherapist was applying ultrasound to my hands and arms when I kept flinching from the “shocks”. I thought her machine was faulty but she kindly informed me about tender points. Tender points is another type of diagnostic tool used by less progressive practitioners. They also say the pain must last for at least 3 months. Mmmmmm – how about 34 years!!!!!
I have realised that I probably had fibromyalgia for the better part of my life. In my teens I struggled with severe spasms in the abdomen which eventually resulted in an emergency major operation at the age of 16. The cause was recorded as prolonged periods of nervous tension and anxiety. While the operation managed to save all the organs and stitch them back into place, I have struggled with abdominal pain and spastic attacks ever since. The gastrointestinal specialist referred me to a psychologist to deal with the anxiety and panic attacks which manifested as tremors, sleep apnea and sweats.
Throughout my life I struggled with migraine headaches. The horrible ones that cause you to throw up and pass out if you don’t get help in time. Too much sun, over stimulation, stress and other things can set it off and leave you quite helpless. I have had a few narrow escapes with migraines that have left me in harms way. When I was younger and I did not know how to manage myself I drove home with a migraine and probably had the same competency as a drunken driver. I passed out as my husband opened the door. I put myself and so many others in danger that night. The worst of my narrow escapes was on an evening where I was at a conference in my very first job. I was a size 6 at the time and worked for a giant of a man. He observed my tiny frame and my deteriorating state as the migraine took hold of me through the dinner. He took full advantage of my vulnerability and insisted we complete a report in his room later that night. Yes you guessed it – he saw a rape opportunity! I found myself on the bed with his hands under my clothes. I was passing out from the pain and he was well aware of it. A miracle transpired and I “came to” just enough to realise what was happening. Angels guided me to manipulate him into thinking I wanted to freshen up and so planned the escape to my colleagues in the conference centre. I relate this story to help you to understand how debilitating a migraine can be.
At the age of 22, I started at the Centre for Conflict Resolution. I could not have been happier and still count it as my greatest career blessing. I was ready for any challenge and boy did the job challenge me. At that time, I became very ill and could not shake a common cold. The common cold tiredness lingered on and on and eventually I was diagnosed with chronic fatigue. What? I am 22 for heavens sake and I love my job! Well anybody who has ever suffered with chronic fatigue will tell you that we resist, fight,kick and scream only to find out it does not help. Tonic and vitamins were the order of the day. The bouts of fatigue continue to return at their will leaving you to wonder what you did to cause it. More importantly, the accompanying guilt adds emotional toxin to your already failing muscles. The feeling of being useless then finally finishes you off with a healthy dose of toxic shame.
At the same time, I started with intense muscle spasm in my neck. I was quite active at that age. I walked to work, swam, love aerobics and danced whenever I could. I found my neck spasm to be aggravated when I swam or did floor exercise at the gym. I landed up at the physiotherapist who then placed me in neck brace. Over the years the physiotherapist got replaced by spinologists, acupuncturists and naturopaths. When my baby was born, my back spasms were competing with my neck spasms. On the really bad days they seemed to collaborate to wage war against me.
I was always armed with an infrafil heating lamp as I had long given up on creams and gels claiming to provide relief. The pain would leave me so exhausted and I would eventually just crash. I remember one incident when I woke up to the smell of burn and then a very hot feeling in my neck. Yes! I had set myself alight. In my fave pj’s – lavender with purple butterflies – how is that for “fibro branding” – all puns intended! (purple butterfly is fibro awareness symbol)
The strange thing about these spasms is that my mom always told me, “Michelene, that sounds like fibrositis!” I paid little attention because my mom always says the craziest things. In all this time, all my many practitioners never picked up that my ailments were related. The gastrointestinal specialists dealt with my abdominal pains and that was that. They put me on antispasmodics and said goodbye. The migraines are a family trait handed down through the generations so I accepted my lot. The fatigue – mmmmm – I can’t quite recall how we explained that one. Unfortunately, my story has another twist.
At the age of 6 I was rushed off to hospital after a sudden attack of weird pains in my left knee. You probably guessed by now that I had an emergency major operation. I woke up to find myself plastered from my waist to my ankles and a stick in between. There was a huge cage over my legs to prevent the blankets from touching my body. This trauma continued for months and eventually saw me enter a convalescent home where I had to try to walk again with no guarantees. Grace and courage saw me walk out of the hospital and lead a normal childhood without disability. The diagnosis was osteitis – inflammation of the bone. We had no guarantees it would not manifest again. I think this episode is how we explained my struggles with joint stiffness and as my brother always says, “the way I have to kick start my hip” and other unwilling joints.
In 2012 I started to manifest with Raynaud’s Phenomenon which I learned recently is also a form of arthritis. The extremities of the body (like the hands and feet) react negatively to cold which cuts off the blood supply. This causes pain and infection if it is not properly managed. I refused to have the suggested operation given the bad experiences of others who did have it. Sheepskin slippers, mohair socks and subzero gloves is how I keep my hands and feet from turning blue.
The year 2012 also marked the beginning of a very challenging journey which would take its toll emotionally and physically. I was at the beginning of what was supposed to be a great new life. Endless disappointments brought a number of challenges. My feisty spirit and strong mind helped me to overcome many trials and tribulations. I was very determined to stand tall in the midst of my struggles. Despite my strong mind and spirit, my body crumbled and I could not continue. I hated myself and my body for failing me.
Ironically, it was the very challenges and agony that took its toll on me that also lead me to the way out.
The way out was simply SURRENDER!
I really don’t like long blog posts so we have to fast forward to September 2014. This is where the intense muscle twitches felt more like a baby kicking in the womb. My fatigue resulted in legs that felt like jelly – as though I had run a race I did not prepare for. An additional diagnosis of arthritic tendinitis gave the depression a new lease of life. I reached my lowest low when I could not cut my food and wept every time I was unable to do the simplest tasks. Financial pressures added to the cauldrons of anxiety. The emotional drain of a now failing second marriage had me in the throes of absolute despair and confusion.
Things are very different now but I had to change many things in my life in order to get out of the torment I was in. The coping mechanisms and learning process are blog posts on their own. The journey of self-love and forgiveness requires its own blog! So many miracles are manifesting in this time. My teenage love, first husband, father of my children and friend for 31years – David – has risen to the challenge of taking care of me and our girls when I cannot do so myself. The greatest cure I do believe is unconditional love. My children are learning grace and compassion as they help me and see me being helped. My friends and family – they teach me daily about love!
Finally, let’s acknowledge my mom! Fibrositis is another word for guess what? FIBROMYALGIA She had the diagnosis all these years!
If you have read this post I thank you deeply. By becoming aware you have effected change and become part of the cure.
Of all my favourite childhood stories, The Princess and the Pea certainly ranked high up there. I am sure it was one of those Ladybird books with a gold covered spine. Somehow it remained on my bookshelves for many years. I remember my sisters reading it to me and then at some point, I read it on my own – over and over!
Times Between with Michelene 