At 36, I was a happy-go-lucky Mum
who was mad enough to try anything, go anywhere and the sky was the
limit. That changed overnight, back in August, when I got a virus and
haven't been the same since. I was in bed for two weeks constantly,
waking only for food and the toilet. I was absolutely exhausted and have
been left with extreme fatigue which affects me every day.
I have to rely on my partner and my
children (luckily they are 16 and 11 and are able to help). This is
really hard for me. I was so independent (being a single parent for the
last 8 years), working full-time and running a home, just like many
other Mums. I was the 'rock' for my children and that rock just crumbled
overnight. They have never seen me like this so it is very hard for them
too.
I have had lots of very low days,
crying and despairing of the illness. It is so frustrating, only being
able to do a fraction of what you are used to. The mind wants to carry
on but the body can't.
I can't plan anything as I cannot
last more than a few hours without rest. We haven't been out for the day
for ages and I haven't lasted a full day since September. Hard to
imagine, but true. I have to pace myself, be patient and be grateful for
being able to do what little I can each day. This is extremely hard.
I am taking herbal supplements to
help me cope with these low times and I have fantastic support but I
know I am really lucky. I know there are many sufferers who do not have
anyone and often feel suicidal as there seems to be no way out.
I am normally a really positive
person and this has helped me through, yet I still find it hard to
accept that I may be like this for a long time. I have friends who have
had the illness for more than 10 years and I can't bear to think of
that.
The worst bit was accepting that
there was something fundamentally wrong that I couldn't fix. I have
never come across this in life before. I always managed to 'fix' even
the worst situation. This one has beaten me.......
As for my job, I have been off sick
for 6 months now and am signed of until 22nd May. I am likely to be
signed off again as nothing much has changed. My money has dropped to
half-pay, which is an added problem.
Until I can last a full day of
reasonable activity, I cannot even contemplate returning to work. I have
a really high profile, demanding job which I love and the thought of
having to give it up due to my illness is very upsetting. I keep hoping
that I will wake up one day and I will be better.
I have worked really hard to get
this job and having to give it up will affect my pension, my lifestyle
and my children's lives dramatically. We will have to reconsider our
financial situation and future plans.
My employers are unsure about what
to do as there is little guidance so they have taken the view to 'think
of the worst' i.e. that I won't be able to come back to my job and will
have to find a lower paid job with less demands on me. This only makes
things worse.
The future…..
There is no cure and therefore no
treatment offered by the NHS. As a result I have joined thousands who
have tried every avenue desperately trying to get better, spending over
£1000 of my own money and having ongoing expenses for supplements which
have been trialled and recommended. All I can see is an ongoing battle
with the symptoms - the main one being fatigue - and spending more and
more money in the hope of getting better. I know I am not as affected as
some but I still find it hard.
Although my GP has been very helpful
(he diagnosed the illness very quickly, has referred me to a specialist
and asked for Cognitive Behaviour Therapy for me) he cannot give me a
timescale or a prognosis.
There is a desperate need to find
the cause of this illness and give sufferers a chance of getting their
life back. In the meantime, there needs to be a standard 'help package'
as the only information I have is what I have found from the internet or
from other sufferers.
There seems no end to this at the
moment so I join all those who are demonstrating today as one of a large
number of highly successful, intelligent and able people who have been
struck down and had their lives turned upside down, often overnight. We
are willing to work and want to get better, rather than rely on benefits
but that is all we are offered.
I hope this demonstration will
further highlight the plight of ME sufferers and their families and
reiterate the need for more research into the cause and, ultimately, a
cure in the near future