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WHY ME?
The text below took me over a year to write, Interested?
……. Please read on.
My reason for writing this is to give hope to others
whether you have CFS/M.E. or caring for someone with it. I
will try not to bore you with medical jargon, but I have to
explain how severe CFS/M.E. can affect someone – it’s 24/7
it doesn’t go away!
Why me? – I must have asked myself this question for the
first 2 & ½ years of my illness. What did I do to deserve
this?. I had always been fit, healthy and energetic I really
lived life to the full, and I would enjoy mountain biking
with my husband including other sports. I was the type of
person who always tried to give my best, I had high
expectations and standards of myself and sometimes others. I
had recently gained promotion at work and I had been working
hard (too hard) in order to try and achieve my goals, my
working environment over a period of time had become very
stressful. On the 16th January 2001 I collapsed whilst
driving home from work I was taken to hospital extremely
ill, they had no idea what was wrong with me so assumed I
had a severe virus.
I was sent home and told to have complete bed rest for
two weeks. I remained bed ridden for several weeks, my
condition by this time rapidly deteriorated. I was needing
24 hours care, I could only walk a few steps. I had to be
washed, dressed. I felt so ill and completely drained of
energy. I was rushed to hospital several times I would just
collapse. My GP recognised my symptoms and referred me to
the national M.E. centre in December 2001. Professor Findley
confirmed I had severe M.E., he thought it would take
between 4-7 years before I would start to show signs of
improvement. I burst into tears, part relief as I had spent
a year not knowing what was happening to me. He said there
was no cure or medication available but they would show me
ways to manage the condition through CBT and graded
activity.
June 2003
A typical good day for me starts by breakfast (hubby has
prepared and left for me). Shower sitting down, then sit and
rest for a while, dress myself, and then rest. Go downstairs
usually on my “bottom” get onto my electric scooter and whiz
into the conservatory and sit and rest till lunchtime. I can
make myself a sandwich sitting on a perch stool, my walking
is very limited at the moment to about …… steps per day,
stairs are a big problem and of course standing. I do
standing exercises where I try to stand for 20 seconds every
hour. In the afternoon I would normally sit in the garden
maybe listen to the radio for an hour, or sometimes mum
takes me out in the wheelchair for 30 minutes or so. I
basically sit and wait till my husband gets home, he makes
the evening meal we chat off and on, he often takes me out
for rides in the car – which I love. My friend Nicky visits
me every Tuesday for 30 minutes, this is the max time I can
manage at the moment. My other friends as well as family
keep in touch with me by text, they write me letters and
send me cards my husband then reads them to me, it does help
to know that people are thinking of you.
Most of my time is spent sitting, I now know the true
definition of boredom. I unfortunately can’t watch TV or
read due to the problem with concentration, my eye muscles
are so fatigued that my vision blurs quickly- Writing is a
problem too – I can manage about 6 or 7 lines a day at the
moment. I have a limited amount of physical and mental
energy which has to last me the day, So everything I do is
split up into time slots, I work with a therapist on a
monthly basis, The idea is to increase any form of activity
very slowly so my body can cope with it. I have approx 30%
functioning compared to a normal healthy person at the
moment. The mental fatigue is just as bad as the physical, I
think it’s even worse not being able to hold a proper
conversation, or socialise, a room full of people talking or
music playing is a no go area for me – when I have had
enough a “cloud of fog” seems to form over the brain, it’s
just switches off you can’t concentrate or think clearly, I
even have to limit the amount of thinking and daydreaming I
do. When you exceed your limits you just are to rest and
recover, if you exceed your limits by too much you risk a
re-lapse (even a cold can cause a relapse) – this has
happened to me twice, it’s awful it put me back to square
one it’s soul destroying. It’s then a case of picking
yourself up and starting all over again.
I reached a point when I felt there was no hope or point
in carrying on – Thankfully I hadn’t the courage to do
anything about it. I had two options give up or fight, with
tremendous support from my husband, parents, family, friends
and GP, therapist I slowly began to improve taking it one
day at a time. It’s a constant battle of self-belief,
motivation and encouragement (knowing your body when to push
on and when to rest). You have to be determined and positive
all the time. I would write notes and stick them all over
the house to motivate myself, and to keep “thinking
positive” I would talk to myself and say “it will get better
– you have to believe this”.
Jan 2004
After my 2nd relapse I decided with my therapist to set
myself a goal of a holiday abroad first time since I fell
ill, it felt like a huge decision to make- it was carefully
planned we would drive there and rent a villa and stay for a
month, I would have to stick to my programme as though I was
at home.
Aug / Sept 2004
My holiday was a turning point for me. I was now walking
a few more steps the sun was like a tonic, the beach was 50
metres away but I couldn’t walk to it- we got the wheelchair
stuck, as there were pebbles. I was desperate to go to the
beach so my husband came up with a ‘plan’ the wheel barrow
came out of the garage, he threw everything on top of me and
off we went to the beach, it was brilliant, normality at
last. I wasn’t well enough to go out for meals or shopping
but we went for lots of rides in the car sight seeing and
enjoying being at the villa, I would go to the local
hospital every week for my B12 injection. This holiday left
me with a feeling of achievement and hope for the future.
When I got back friends would say I looked much better which
pleased me so much.
March 2005
My main aim is to walk again I’m still in the wheelchair
but can now do a few short walks to the loo and to the end
of the driveway. I can manage a one to one conversation for
45 minutes I still can’t watch tv or use the computer, read
or write normally but I hope this will improve in the
future. I have been out for a few meals as long as I don’t
over do it and stick to my programme. My symptoms should
stabilise. – with CFS there is a very fine line between
doing enough and doing too much. I have found that setting
myself monthly goals, helps me. I write them down and stick
them on the wall this helps me move forward. No matter how
small and simple they are. It doesn’t always go to plan
though but you have to give yourself something to aim for,
and look forward to, the graded activity programme and
cognitive behaviour therapy has been crucial in my
improvement.
Like with many other serious conditions CFS has an
enormous affect on your emotions, one day I was full of
energy and life then several days later I wasn’t. I found it
very difficult to come to terms with what happened to me it
took me about 2 years to climb out of my “pit of despair”
and stop feeling sorry for myself. I felt so isolated and
alone I just seemed to sit and watch everyone leading a
normal life and I couldn’t. I would sit in the car whist my
husband went shopping and just cry – he would take me to
watch a Mountain Bike Race he would sit me in a chair next
to the track- it was like ‘torture’ for me watching them all
ride pass I would think to myself they don’t know how lucky
they are (the feeling of debilitation was over whelming).
I can’t find words strong enough to convey how awful
severe CFS can become.
I would beat myself up and assume I was so ill because I
had been a ‘bad’ person and deserved it in some way. I was
always looking for answers as to why this was happening – I
really felt this condition had total control over me and
that it was slowly trying to destroy me bit by bit. I told
my husband if he wanted to leave me I would understand- he
told me to stop being “silly” we are in this together he
said. One day we will look back on this and laugh he said as
he slowly and cautiously began to shave my legs for me!! I
hated going out in the wheelchair people would stare, I
would watch them scan me up and down with their eyes trying
to work out what was wrong with me. Now I’m not bothered
they can stare as much as they like – I look back at them
and just smile!
My therapist told me I was her most severely affected
patient, so my message has to be to anyone with CFS/M.E if I
can improve you can too, there is always hope – you can move
forward. I know I still have a long way to go but life does
become worth living again – the small things I took for
granted before I fell ill become so precious when you can do
them again.
This experience has taught me a valuable lesson of just
how much I took my life style and health for granted. I am
determined a positive has to come from my situation. It may
sound corny but I tell myself every day how lucky I am, I’m
grateful for every extra step or bit of progress I make. I
realise my situation could be a lot worse, I’ve been there –
I don’t want to go back to that. They say that life begins
at 40 – well, I’m living in hope.
ME/CFS can ruin your life – if you let it that is!!
Special Thanks
My wonderful husband, parents, brothers, family, friends,
Tigger my cat, GP and therapist and everyone who has taken
the time to ask how I’m doing. I won’t forget your support
and encouragement I hope that I can repay your kindness one
day.
Thank you to everyone who has donated/raised money for
the research fund.
PS: WHY ME? I don’t ask the question anymore!! |
