It started in 1987 when I was 32 years old and had recently taken up residence in Greece with my new husband.
I came down with a particularly nasty bout of flu which
was immediately followed by a persistent gastrointestinal problem. Overwhelming
fatigue, muscle and joint pains were still present 6 months later.
Previously, in the UK I had been a successful Marketing
Executive of a computer software house. At the time I became ill, I had given up
that career to set up a restaurant on a Greek Island with my then husband. The
fatigue and muscle pain with a myriad of other symptoms worsened and it became
increasingly difficult to fulfil my role as Restaurant Manager.
For each particular symptom I saw a different
specialist (as was the practice in Greece at the time). Each found nothing
physically wrong with me.
Finally, one doctor concluded that I was simply
homesick for the UK. My husband believed him, doubted my commitment, considered
my illness imaginary, my marriage fell apart and eventually, I returned to the
UK with my son.
I then started on another medical treadmill that lasted
over 2 years.
I went to my GP in the UK. He took the view that I was
depressed as a consequence of my failed marriage. He prescribed antidepressants
which I refused. I didn't know what was wrong with me but I knew I wasn't
My family called the doctor to the house on one
occasion after I had
become too weak to walk or talk and couldn't make the bathroom without
The GP advised me to go out for a jog in the sunshine.
As luck would
have it a neighbour stumbled upon a book on Myalgic Encephalomyelitis in the
local library. She read a couple of chapters and found striking similarities in
the symptoms it outlined and my symptoms, so she brought it for me to read. It
was the first time I had ever heard of ME. At the time I had been mainly
bed-ridden for 6 months.
I read the list of symptoms on the inside cover and
wept, partly with relief that I wasn't going mad after all. I read the book and
contacted the ME association, whose address was at the back. They offered an
information pack for GP's but it had to be at the direct request of the GP.
set about writing a letter to my GP, told him about the book, expressing my
concerns that I may have the disease. I asked him to send for an information
pack that would assist him in making a proper diagnosis.
He didn't respond.
went to see him. He refused to acknowledge that ME was anything other than
hysteria. He said my letter raised in him concerns for my mental wellbeing and
suggested a psychiatric referral. I refused. I did agree to see a Consultant who
turned out to specialise in chest complaints.
He told me that I couldn't
possibly have ME because I had no muscle wasting!
Eventually, I managed to track
down a Consultant Immunologist who was working with ME patients just outside my
area. I contacted him by telephone and asked him if he would see me privately.
He explained that it would be far too costly for me to go to him privately
because the 'treatment' was likely to be protracted. He was trying a program of
desensitisation, injecting allergens to stimulate the immunity. Each injection
cost a small fortune.
I had to go back to my GP to ask for a referral. He
reluctantly agreed to refer me.
I waited 11 months to see the consultant
immunologist. During this waiting period my son reached an age where I was no
longer entitled to income support, I was forced to visit my GP to ask to be
officially certified sick, so that I could continue to claim financial aid as I
was unfit to return to work.
I could not walk without assistance at the time and
had to lay across two chairs in the doctor's waiting room because the walk to
his surgery had thoroughly exhausted me.
He asked "can you lick stamps?" I had
to accept that I probably could and on that basis he refused to certify me sick.
I left his surgery in floods of tears. I decided to change my GP. The doctor at
the new practice quizzed me as to why I was leaving my previous doctor. He was
He had no hesitation in telling me that he did not believe
in ME and warned me that he would not be prepared to prescribe expensive
supplements (then evening primrose oil was being recommended, along with
I never went back to him or any GP for some time. I tried to obtain
disability living allowance. A female doctor came to the house, I was having a
'good day'. She asked lots of questions about how far I could walk, whether I
could cook/ shop/ clean / wash for myself. I tried to explain that the symptoms
varied in severity from day to day, even hour to hour... I might accomplish 2 or
3 tasks one morning and be exhausted for two days following. So that, yes I
could cook for myself today and possibly walk to the end of the street but that
I would pay for it with pain and exhaustion in the following days.
I was turned
down for disability living allowance.
Finally, almost 3 years from falling ill,
I saw the consultant immunologist who was to change my life. He diagnosed ME,
certified me sick, prescribed supporting vitamins and supplements, gave me
nutritional advice and started me on a desensitisation program.
Slowly I began
In 1996 (9 years after falling ill) after doing a part time degree
in Law, I qualified as a Criminal Barrister and moved to London. ME never
completely went away. It began to follow a pattern of remission and relapse.
relapses following hot on the heels of stressful episodes - and in my line of
work, there were many. However, I did finally find a very supportive doctor and
that made an enormous difference to my life. I tried to reduce the stress in my
life by taking a law lecturer's post and reducing my practice at the Bar to
part-time. The relapses became shorter and less severe and the remissions
Unfortunately, I had to have an operation 3 years ago and that brought
on a major relapse, complicated by shingles. This was a considerable set back
and I never became well enough to return to work.
18 months ago I decided to
take early retirement and move to France for a quieter, more stress-free life.
ME is still with me but I'm managing it. I'm still learning about it...how to
recognise when I've done enough and stop before I go too far. And I'm now facing
a new challenge - trying to get my French doctors to understand ME.