Following her advice we
pushed even harder than we already had been, struggling into school, to
keep everything up as normal, yet I seemed to be getting worse and
worse. The days where no matter how hard I tried I couldn't manage
school were getting more and more often.
We saw the
paediatrician one more time, where she conceded I'd had glandular fever
at some point in my life but from her brief examination I was still
perfectly healthy. She rather vaguely mentioned chronic fatigue but
hastily added it wasn't helpful to use labels and left us to flounder
with no real information, help or understanding.
Thankfully, not long after
that, we were given a leaflet about M.E. by my school nurse. I had never
heard of it before, yet the leaflet described perfectly everything I was
feeling. I remember one quote was that it felt like there was a giant
vacuum cleaner above your head, sucking all your energy and strength
out. It was a big relief, until then I hadn't been able to describe how
I felt and yet here was a leaflet putting it into words so clearly. It
was also a big relief to know that, contrary to how I was feeling, I
wasn't the only person in the world to be feeling ill in this way.
My dad promptly rang the
charity that produced the leaflet to find out more and they gave us the
name of a specialist paediatrician in Durham. We requested that our GP
refer us to him and within a week we had been!
Upon entering the room the
specialist looked us up and down and said "Let me guess-white,
middleclass, only child, pushy parents?" He'd heard our story, and the
first paediatrician's attitude, many times before and apparently we were
the lucky ones to have only had that!
Upon a full history and
listing of symptoms he gave me a diagnosis of "classic" ME. His advice
was to pace and know my limits. I could recover soon, or it could take
longer, there was no way to know.
That was over 6 years ago,
I'm now 20, still ill, and a lot worse than I was then. I gradually had
to cut back on school and then when I was too ill to go in anymore I had
home tutors (which we had to fight the LEA for). The tutors at first
came for a few hours a week, as I couldn't manage much, but that
dwindled with my health. Over 4 years I managed to complete 5 GCSEs,
taken at home, all A-A* grade, despite collapsing half way through one
of the maths papers!
Over the years we have spent
thousands of pounds and travelled hundreds of miles in the search of
something that would help. The specialist paediatrician I saw was at the
other end of the country and I travelled to Hertfordshire to see a
homeopath and then a Chinese herbalist on strong recommendations. I've
seen numerous people practicing various alternative therapies, from the
scientifically based to the wacky, from doctors' offices to peoples'
front rooms. I've had injections, potions, herbal drinks and pills.
Nothing has helped. The best was a doctor in Southampton who did
numerous blood tests (all privately and at great cost) and was able to
tell me that my magnesium, zinc and vitamin B levels were very low,
something which despite many blood tests the NHS had never told me.
I'm now housebound 99% of the
time and bed bound a lot. When I do manage a trip out it has to be in a
wheelchair as I can't walk more than a couple of steps unaided.
It's hard to describe what ME
is like, many people have done it better than I ever could (see the
links page), it's easier to say how it's affected your life. How you've
lost out on schooling, how your social life and most of your friends
disappeared many years ago, how exhilarating it is just to stay
downstairs for an hour without feeling like you're paralysed as a result
and how wonderful it is to see a true friend, who comes to see you even
though you cant go out and can't always hold a conversation.