(FIBROMYALGIA, LYME DISEASE, LUPUS, MS, THYROIDITIS, DEPRESSION, HYPOCHONDRIA, CFS, AUTO-IMMUNE CONDITIONS, HERPES, IBS AND FRIENDS)
A personal journey into the world of chronic sickness, it’s diagnosis and treatment.
Angela Kennedy – Authors of our Misfortune: I hadn’t come across this book before but her approach and detailed examination of the debates that rage within the ME world triggered me to write this.
In a way being diagnosed with ME in 1989 destroyed my life. I don’t mean that having ME destroyed my life,I mean the diagnosis.
Because of it I lost my marriage, my home, my career and any hope of quality of life. As a social science graduate myself I found myself caught up in all the debates about thenature of ME/CFS and struggling not only with my illness but with trying to understand the nature of my health problems.
Sadly, I internalised the idea that my condition was psychogenic whilst always suspecting this might not be the case. I, as Angela describes so well, lost all confidence in my own body and mind, doubting myself on every level.
Prior to the ME diagnosis the majority of my symptoms were attributed to depression and anxiety. When I was finally diagnosed with ME, for a brief period I felt a sens eof relief. At last there was an explanation and a way forward. I had monthly appointments with Prof. Pinching at Bart’s and moved from London to Brighton to try and live a calmer more relaxing life, to rest and to pace. It didn’t work.
Prof. Pinching was convinced that ME was a real condition and despite there being no bio-chemical markers asserted that his clinical assessment of my symptoms should suffice for me to accept the diagnosis. I did not. In fact I remained convinced that the cause was psychogenic, that with enough support and therapy I could fight my way out of it.
Over the years, I spent thousands on CBT and therapy, and tried to ignore all the physical symptoms, forcing myself to keep working and functioning beyond what was comfortable. I believe now that internal struggle caused me eventually to become seriously depressed and to suffer from anxiety and panic attacks.
I felt isolated and unsupported and could not wholly accept either explanation – that there was one single unifying underlying biomedical cause for the diverse symptoms attributed to ME but nor could I accept that the condition was merely psychogenic. Both seemed fraught with dangers because both meant that no further attempts would be made either to diagnose any other underlying conditions or to provide any meaningful treatment, let alone cure.
As the years went by several things fell into place. First that surgery I had for a burst appendix in 1982 (which had caused some peritonitis, followed by a termination, failed sterilisation and further pregnancy and miscarriage, followed by a pelvic infection and ovarian cyst and consequent hormonal imbalances – all within the space of 18 months in my mid-20s had rendered my body weakened and vulnerable. In particular, in the following years, I suffered persistent throat infections, yeast infections and shingles. I was trialled with hormone patches (which caused very severe depression) but otherwise unsupported medically.
At that time I was studying for my degree with a young son,a relatively new partner who I later married, politically very active, set up, ran and lived in a Housing Co-op and had an full and active social life.
Over the next few years I drove myself on…. I had a successful career in Housing and, with my husband, set up various smal lcompanies running nightclubs, a promotions company, a small label and a management company. Exciting heady and successful days.
After diagnosis and the move to Brighton my health continued to deteriorate. I had bouts of horrendous fatigue where I could barely lift a cup to my mouth. I felt physically under attack. I had episodes of bizarre symptoms, muscle spasms (the throat particularly), migraines, chronic digestive problems and sensitivities to foods, Vertigo, unexplained pain in inexplicable places,sexual dysfunction, thrush, shingles, weakness, palpitations, ectopic beats,mental fatigue and confusion (popularly known as ‘brain fog’), inability to concentrate, panic and despair. Well,who wouldn’t?
I seldom went to the doctor over the next five years and if I did I told them I had ME and suffered from anxiety. They offered me anti-depressants and I refused. Persistently. Deep in the corners of my mind I did not believe I was depressed. When I didn’t feel too ill I was so full of joy and enthusiasm for life. I knew that was my ‘real’ personality. Ifeared that anti-depressants would take that away and I would never get to thebottom of my problems.
I went down the alternative route. I meditated, chanted, did yoga (when I could), exercised (as much as I could), got a dog and walked (as much as I could), had homeopathy, acupuncture, osteopathy, saw chiropractics, aromatherapy ,massages, had hopi ear candles, crystals – you name it I tried it, to no avail or with mild palliative results, particularly from Shiatsu. But the onslaught of symptoms continued.
I stopped going to see Prof. Pinching who was a lovely man but was unable to help me to feel better.
Instead I read about ME and found all the information unsatisfactory. I decided to approach it academically and spent two years studying OU courses in Health and Disease. I was too ill to process much of what I read and grappled with the issues the ME diagnosis presented.
In 1995 my partner of nearly 20 years left me, finding it intolerable living with someone who was so utterly unpredictable physically (and mentally) and was no longer able to be the partner he wanted. I had a year of being completely broken and truly wanted to end my life. I had no career left, lost my best friend, my home and was alone and vulnerable.
Somehow I managed to get through it. Eventually I found menial admin work at the Local authority and managed to do 30 hours a week, mainly because it was flexible. I lasted nearly ten years there, gradually decreasing my hours and eventually when my mobility became more serious problem I lost my job. I left under a Compromise Agreement with a settlement that was meaningless after they failed to make ‘reasonable adjustments’.
Crushed, unemployed and feeling unemployable in my mid-50s I was forced to claim benefits –and my timing could not have been worse. I walked into the minefield that was the new system – just as I needed it Incapacity Benefit was scrapped and I was forced to apply for Employment Support and Allowance. I was subjected to endless medicals carried out by ATOS and to pursue medical support and evidence for all my conditions.
Ironically, in some ways, this was both the worst and the best thing that could have happened.
The pain in my hip, knee and foot turned out to be arthritis– I need surgery for all 3.
I discovered I had a hiatial hernia and diverticulitis and that the IBS spasms were so strong they had trouble removing endoscopes.
I suffered from Hashimoto’s Thyroiditis, a condition which untreated causes anxiety and ectopic beats and fatigue and muscle pain and spasms.
All of these symptoms had been considered simply part of ME.
I was told I also suffered from Fibromyalgia.
On being unemployed the internet became central to my life and through it I became aware of the thousands and thousands of other people suffering similar multiple chronic health problems. The majority fell into 3 camps. They were diagnosed with (and believed their conditions to be) either a) ME/CFS/FM b)Thyroid related or c) Depression and anxiety related.
Whichever one of these they fell into, they felt unsupported by the medical profession, there seemed inadequate treatment, unclear prognosis, and little sympathy. Worst still – other conditions got overlooked.
However, I also became aware that some people, whose clinical symptoms were more similar than they were different, were diagnosed with MS (or even atypical MS), Lupus, Rheumatoid Arthritis, Lyme Disease and a variety of other, more unusual, auto-immune conditions.
These other diagnoses only came about because the individuals had GPs or Consultants WHO SEARCHED FOR THEM.
To date, I have not been tested for any of the above.
Getting diagnosed with arthritis, Hashi’s, diverticulitis etc suddenly catapulted me into a world where the same symptoms were taken far more seriously, I got far more support from GPs as well as friends and family. I crossed into a world where I was NOT TO BLAME
The question is…. Why? What are the benefits of an ME diagnosis? And to whom?
I have recently been referred to an ME/CFS clinic in Sussex and intend to try and document my progress, or lack of it…..
fionagoffe 