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| MEme M.E. me is ready for action |
MEme and the
Dublin Protest
In 1998 I got
suddenly very ill with suspected meningitis. This was luckily not the correct
diagnosis. However, this sudden onset of extreme fatigue, terribly headaches,
the inability to coordinate my movements, to sit up for any length of time, or
to have a conversation was the start of a now 18 year long journey with M.E. (Myalgic Encephalomyelitis).
My life
changed within weeks from being a self-employed artist to needing care with
even the most mundane of actions, like opening a tube of toothpaste. The
ability to create detailed sculptures vanished. My love of reading became a
task no longer available to me.
The first few
years I was more or less housebound. After begging with the HSE, I was given
home-help every day of the week, twice a day. At first I was told this was not
available to me, as I was only 36 years old. You needed to be over 65... But I
got it. Maybe as I otherwise needed to be taken into full time care? In today’s
world getting home help for so many hours seems like an absolute miracle.
Times
have changed.
What has not changed that in all these years there is still not an
absolute diagnosis of M.E. given by any doctor in Ireland. The term Chronic
Fatigue Syndrome is more often used, but is in no way correct.
There is no consultant in Irish hospitals who deals specifically with M.E.
There is no consultant in Irish hospitals who deals specifically with M.E.
It is not
unlikely to end up in hospital and meeting a doctor who would ask: “M.E., What is
that?”
Often M.E. is
written about in the media with a notion that “It is all in your head”. A purely
psychological illness. Trust me, it is not. I wish. I wish I could get my body
to function properly again through talk-therapy, or through anti-depressants. I
wish.
Throughout the
years I have found ways to make my life the best it can be, within all the
limitations I still experience. Mainly through creativity, pacing and silence.
This is not a cure, by any means, but a positive halfway point. A place in which I can escape the reality of illness.
There is no
proper interest from the HSE to deal with estimated 14,000
people living with M.E. in today’s Ireland. To bring this injustice to the
attention of politicians and the HSE, a group of inspiring
(mostly) women have come together to see if this can be changed.
On Thursday 11th May there will be a
demonstration at the gates of Leinster House, between 11am and 3 pm, under the Millions
Missing Banner. We have asked politicians to come and talk to us. To our representatives.
All the millions of people living with M.E. world-wide who
are missing from schools, work places, family events… from life as we know it.
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| MEme M.E. me is ready for action |
I won’t be able to travel there myself. But MEme
(a little stuffed penguin: M.E. me) who is my alter-ego, and has traveled for
many, many years to places and people I could not get to, will be taken my
place.
And hopefully will help in our bid to change the lives for the better of
all of us living with this most challenging of illnesses.
We would like to ask you for your support. Many
of us will not be able to travel to Dublin and will be protesting from our
beds, couches and homes through social media. Please be at
Leinster House instead of us?
Thank you!
Contact Corina Duyn
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| MEme M.E. me is ready for action |
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