Breaking the mould media campaign

May is ME awareness month. This year to raise awareness the ME community trust ( http://mecommunitytrust.org/ )is running a media campaign called 'Breaking the mould'. They wanted personal case to illustrate their article so I wrote in this short summary of me;


I've had ME for 12 years. Before that, typically, I seemed a healthy
child. I was always playing; I loved the Puppy and Kitty in my pocket
sets (still do, really)! I also went to ballet + modern dance lessons,
swimming, watch club, was beggining to learn the violin + was a junior
member of the RSPCA. Then when I was eight my grandma + hamster died
in quick succesion, followed by a unknown virus of the gut. I had a
terribly high temperature + was sick on everything even water

After such a terrible virus you'd expect me to to be rather weak but,
unfortuneately, I didn't recover. I was diagnosed with ME quite
quickly but, sadly, this didn't make my treatment any better. I was
admitted to hospital and given physio, then sent home and relasped
terribly

I don't really remember the following year. I know I lived on complan
all that time until we finally persauded our doctors to give me a
tube. I was admitted to hospital again around that time, which was a
painful experience, but was discharged after a few months

All in all I was paralyzed and bed-ridden for 7 years and was tube-fed
for 5 and a half. I remained at home, cared for by my parents. My
symptoms included; paralysis especially my legs + swallow,
hypersensitiveity, headaches, muscle pain, 'brain fog', muteness,
Orthiostatic intolerance, insommnia, spasms, severe nausea with a
period of vomiting and extreme tiredness

When I was 15 my health rapidly and dramaticly improved. My symptoms
receded. I was able to stand and use a wheelchair. At one stage I was
even able to walk independantly around the house though still needed a
wheelchair outside. I became very involved with my local wildlife
trusts. I enjoyed visiting their reserves, attending 'wild
learning'courses and was even part of a youth group.

However from the end of 2009 my health slowly worsend again until last
year, when I had a tooth infection and a bad back, I had a major crash

My worst symptom at the moment is vomiting which caused me to lose a
lot of weight (over 2 and a half stone). It comes and goes. I feel
rather like someone pushing a boulder up a hill. I'll just start to
feel better and put on weight, then a bout will hit me again. This has
led to a general worsening of symptoms especially tiredness,
hypersensitivity, cognative functioning and insommnia. I am now
housebound and have two part time carers to help look after me as well
as my parents.

I have tested positive for Mitochondria abnormalities which basically
means my body is litterally producing only half as much energy as
normal people. As well as this being a potential cause of why I feel
unwell, it also accelerates the ageing progress and causes problems
for the immune system

I always beleived that one day my body would naturally heal itself and
I'd return to my previous levels of health. Now I'm less confident of
recovering- unless someone finds a treatment.

I'm a member of the Let's do it for ME planning group - a campaign,
started by Invest in ME, to set up the 1st centre of excellence for
ME/CFS in Europe. The centre will conduct large scale, translational
research into ME/CFS funded by the charity

I haven't seen a GP once the entire lenth of this relapse. In fact its
a bizzare fact that I have only visited a GP surgury once since being
diagnosed

The centre also aims to educate medical professionals and treat
sufferers. Find out more at blog.ldifme.org

All I want is to be like other 20 year olds; to travel and go to uni;
to socialise and be independant; to walk, swim, dance and ride. I've
already lost a decade of my life to this wretched illness. Please
don't let me lose another