 Alter your diary |
Your info |
Other stuff |
Diaryland stuff |
|
|
messages to jewel-girl:
(click here to add new message):
| from
a-rainbow : |
|
Please takea couple of mins to read this, and if possible email it out to
your friends and family, raising awarness and having people understands can
make such a difference to the quality of our lives...
ME Awareness Week 2003
May 12th - May 18th
- sent to you on behalf of all the members of the international online
association 'BRAINFOG!!' -
The following piece of writing was written by Vikki George. She is just 18
years old. Although she has had the symptoms of the illness ME/CFS for much
of her life, she has been officially ill for 9 years. For someone so young,
she has endured so much but somehow she has managed to keep going. She is a
remarkable inspiration to so many of her fellow Brainfoggers from all around
the world who are also living with this isolating and debilitating illness.
She wrote this powerful piece of writing as a way of conveying her life to
those who believe this illness is just about fatigue when it is in fact
about so much more! For many people, this extreme degree of ME is a reality
and not one that we often hear about, as communication at this level can
often be impossible:
Can you imagine?
Can you imagine waking up not able to move, not even a finger,
Wiggle a toe, move an arm or a leg?
Can you imagine laying there not able to move, but vomiting,
Being too scared to breathe, choking till your parents roll you over?
Can you imagine being so ill you can hear the voices of your parents but not
know who they are?
Or hear English but not understand a single word?
Can you imagine going months on end without seeing anyone outside the
family?
Not a single soul, not even a milkman or a passerby.
Can you imagine being in so much pain that you just want to give up?
Feeling like there are thousands of hot pins sticking in you?
Can you imagine going years and years with a continuous migraine,
Not easing for a minute or a second of your life?
Can you imagine going over a year without sitting up or being propped up,
Feeling so dizzy that you can't see straight?
Can you imagine feeling like you are moving, falling over backwards,
And at the same time rotating sideways all the time?
Can you imagine going 6 months without going downstairs in your own house?
Not seeing the living room, kitchen, garage, or garden?
Can you imagine life like this?
I don't need to imagine, after all, I live like this every single day.
Still think ME is just about feeling tired?
by Vikki George - Feb 03
ME Awareness Week - 12th 18th 2003
ME Awareness Week coincides with the birthday of Florence Nightingale, who
after returning from the Crimean war spent a long period of her life
housebound whilst displaying the symptoms of ME. Until now there has been
little acknowledgement of the devastating impact ME can have, despite it
being around since at least the 19th century.
Now for the first time in history, the UK Government officially recognises
the illness. The Chief Medical Officer, Sir Liam Donaldson issued a major
report in January of this year describing ME as 'a disease in the wilderness
'. He also conceded the terrible prejudice, which has afflicted the lives
of the thousands of people who develop the illness each year.
What is ME?
ME (Myalgic Encephalomyelitis) / CFS (Chronic Fatigue Syndrome) is an
incurable chronic condition which has many symptoms, commonly including
pain, exhausting fatigue, sore throats and swollen glands, difficulty in
thinking clearly, and an overwhelming malaise which has been described as a
feeling of being "poisoned". It is an extremely debilitating illness, which
leaves many people with ME, bed or house bound for many months and in many
cases for years on end. The causes of the illness remain a mystery despite
years of research which has shown many anomalies in the immune, nervous and
endocrine systems of sufferers. The best available estimate is that it
currently affects 240,000 people in the UK, 40,000 of whom are children.
Because of the mystery surrounding ME, there is widespread ignorance and
misunderstanding about it on the part of the general public and sadly of
many GPs. This increases the difficulties facing sufferers. A recent
report by the Chief Medical Officer (CMO) has done much to validate the
illness, and the Medical Research Council (MRC) have now finalised a
Research Strategy. But this is only a very small drop in the ocean. The
only thing that is really known about it is that it has ruined many
thousands of lives across the globe and will continue to do so for years to
come unless Awareness is heightened and more is done to fund Research so
that a cure can be found.
What is 'The Brainfog Association'?
'The Brainfog Association', www.brainfog.org is an international online
community founded and created two years ago by Ally, an ME sufferer from
Sussex, England, now 27 years old. It was designed specifically to offer
support and help to people worldwide with the illness ME through fun,
friendship and understanding. It is named after one of the common symptoms
of ME - an inability to think clearly. Brainfog currently has over 700
members, who rely heavily on it to provide crucial social contact in the
isolated and lonely world of the chronically ill. Although it is quite
clearly a website for people with ME, there is one obvious difference from
many other online ME support groups; this is clear from the motto of the
website: 'BRAINFOG!! - Keeping the lighter side of ME and life, well and
truly ALIVE!!'
If you would like more information about ME and the website Brainfog, please
e-mail Ally on ally@brainfog.org or visit the 'The Brainfog Association' at
www.brainfog.org
Alternatively, if you feel you are in the position to offer a donation to
'The Brainfog Association' to help fund the ongoing development of the
website / forum, please e-mail the Brainfog Treasurer, Fiona Sanderson at
treasurer@brainfog.org for details.
Useful references
BRAINFOG !!: http://www.brainfog.org/
Action for ME: http://www.afme.org.uk/
The ME Association: http://www.meassociation.org.uk/
25% ME Group: http://www.25megroup.org/
AYME- http://www.ayme.org.uk
CMO Report: http://www.doh.gov.uk/cmo/cfsmereport/index.htm
MRC draft research strategy:
http://www.mrc.ac.uk/index/public-interest/public-press_office/public-press_
releases_2003/public-1_may_2003a.htm
|
| from
angelshauna : |
|
Hey sweetie. :-)
|
| from
rosyposie : |
|
I hope you feel better.
|
| from
jewel-girl : |
|
i can't make this make sense... but anyway write me!
|
back to jewel-girl's profile
recommend this diary to a pal?
Other diaries starting with the letter:
a
b
c
d
e
f
g
h
i
j
k
l
m
n
o
p
q
r
s
t
u
v
w
x
y
z
Back to Diaryland
|
|
Recent public entries |
Users online right now
|
|
|
