"Rosa is very unwell at the moment. She has had a series of episodes
of being sick and a bad cold. This has left her very low in energy and
spirits. Any communication from people who understand would cheer her
up a lot.
Kind regards
Julia"
I would really like more communication from the outside world, whoever
you are, but I'm too poorly atm to reply regularly. Anyone who would
be happy to contact me regularly without expecting a reply would be
greatly appriciated. It would help conserve my sanity a lot!
My E-mail is 6chestnuts@googlemail.com. I now expect a lot of e-mails
from nutters!
Apologies to those who have seen the message from my mum already :)
Sunday, 20 May 2012
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
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
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