Living with an invisible illness…
I figured it was about time I face up to the reality of my current situation, as a way of helping me to deal emotionally with what is going on with me physically. Since the age of 14 I have been fighting against my own body.
It all started back in 1990, a few months after an operation to remove my adenoids (for the second time). I had always been a very active child and teenager, with so much energy I didn’t know what to do with it. So when I collapsed at school more exhausted than I could ever imagine or explain for no apparent reason, I was distraught. I was so tired, I ached from head to toe, I literally felt as though I was dragging ten tonne of lead weights around with me all the time.
The months that followed were pretty awful, I was subjected to so many blood tests I felt like a pin cushion. My doctors had no idea what was wrong with me. First they thought I had flu, then they thought I had Glandular Fever (I remember having a sore throat that lasted for about 12 months) and I never seemed to get an answer.
I remember finding it extremely difficult to get up and get myself to school. On “bad days” I would stay home, the school would send work home for me so that I didn’t miss out on any education. On “good days” I would drag myself into school because I had had enough of being stuck at home resting, only for my parents to get a call, usually by lunch time, requesting that they collect me as I had “passed out” during class or recess. This would go on for weeks at a time, sometimes even months. And still the doctors had no idea why or how to treat it. Around the same time there were regular newspaper reports of “yuppie flu” – hard working adults in high powered jobs were also “burning out” and suffering similar symptoms as myself.
However, as a teenager I kept on fighting with myself. I carried on going to school when I could, I put up with the doctors telling me that any pains I had were just growing pains due to puberty. I put up with the tiredness, resting when I could, but still trying to keep an adolescent social life going. I continued to visit the doctors every time the symptoms got bad or something new was happening with me. They begun to make me feel as though I was making it all up, a hypochondriac, a fraud! I completed school and went out into the grown up world of full time work, but still I was being plagued with extreme tiredness, pain, dizziness, periods of “blackout”, fainting, lack of concentration, loss of coordination and intolerances to various foods. I don’t remember how many times I changed jobs and career paths trying to find one that fitted my needs, and yet I was still getting nowhere with the doctors. Repeated visits with repeated conversations going over the same symptoms time and again. This just made me more tired and more saddened because I still had no answers.
Then at 21 I fell pregnant, my whole life changed. I had a renewed energy and a new lease of life. At first I was more tired than ever before but at least most of the pain was subsiding. By the time I was 4 months in to the pregnancy I began to feel alive again, I had energy that I never had before. After seven years of feeling “dead to the world” I was able to do everything again. Those were the best months of my life and then my daughter was born. The energy levels continued for a few weeks and then I began to “crash” again, same as before. This time though the doctors put it down to post-natal depression. So I began to have counselling, only to find that I wasn’t suffering from that at all. Within a year of my child being born, I was finally being heard by my doctors. By this point I had done a little bit of research about the old “yuppie flu”, there was now a name for it, Chronic Fatigue Syndrome, and it was just starting to be recognised as an illness by the medical profession and so my gp referred me to a clinic in London for assessment.
In 1999, after two more years of doctors appointments, blood tests and good old British waiting lists, I finally got seen by a specialist. I had been living with extreme fatigue and pain for nine years and had pretty much retrained my body to cope by doing short activities followed by rest, not working a full time job and relying on my family to help out with everyday chores. I spent over an hour with the specialist, explaining everything from the tingling in my fingers, to the constant muscle aches to the uncontrollable sleepiness, detailing my daily routines and how I was coping with running a home and looking after a toddler. Only to be told at the end that “you may have had Chronic Fatigue Syndrome but as you have had it already for nine years and are coping, you are at the other end of it now and you should see a full recovery within the next couple of years. Just carry on as you are.” So I did …
During that decade I did carry on as I had. I was a stay at home Mum, had my second child, I began volunteering at the local primary school a few hours a week, studied a vocational course part time, volunteered at the local Scout group, walking/geocaching, camping and eventually began working part time at the primary school. All because I was feeling so much better and well again. I really believed that the “illness” had gone. So much so that I took on my first full time job in 12 years. It was all beginning to look very good, it was as though I had beaten whatever it was that plagued me for all those years.
And then it hit me like a head on car crash! In December 2011, at work, in a classroom with secondary age children, I was struggling to keep my head up and eyes open, I could hardly manage to climb the stairs because the pain in my legs was excruciating, my shoulders felt as though they were being crushed and I eventually collapsed in a heap in the staff room and I knew it was happening all over again.
The unfortunate thing is, although I saw a specialist all those years ago he never did give a definitive diagnosis, so for the last 18 months I have had to go through the entire process again. Which has resulted in missing work, losing my job because of too much time off and not being capable of even the easiest of everyday chores. No diagnosis – no treatment – no cure! There is a massively long list of illnesses that need to be eliminated before any referral to a fatigue specialist can take place, and finally we have got to that stage. The gp has ruled out hypothyroidism, rheumatological problems, dietary causes, glandular infections and more. I am trying out a medication used by sufferers of Fibromyalgia (chronic pain) and going through the whole activity/rest/activity process, but as yet I am still unable to manage working. The symptoms change almost hourly, and the “crash & burn” can happen at anytime with no warning. The wait for the specialist and any form of diagnosis can be up to twelve months, with little or no financial help.
I have been hunting the internet for advice on how to manage the symptoms, looking for answers on how to ease the pains so I can at least continue with everyday chores (most of the time I force myself), and trying to find a regime that will enable me to go back to work. I have trawled through UK Fibromyalgia and ME Association websites only to find that what I am doing at the moment is what both sites recommend. So to protect myself against muscle wastage, I continue to walk everyday despite the pain levels and the fact that it leaves me feeling as though I haven’t slept in weeks. I force myself to get up every day and try and complete at least one household chore without help. However, it leaves me continually trying to recover, doing my damnedest to not become depressed and to hide the majority of the tiredness & pain and inability from my children, parents and grandparents.
I am Faye, I am 37, I am living with an invisible illness and today is not a “good day”…