Monday, May 12, 2008

M.E./CFS Awareness Day

Today is M.E./CFS Awareness Day, and I want to mark the occassion and do my little bit for the cause by saying something about it. If you don't support your own illness who will?! Thing is I'm terrible at this kinda thing. Seriously, I never know what to say. Especially in the beauticians/hairdressers/opticians...the 'friendly' chat goes something like this;

"So where do you work?"
"emm, I'm not working at the moment cos I'm sick...but I used to be in college before that"
"Oh" Awkward silence
"So Whats wrong?"
"I uh....I've got this thing called M.E."
" Oh is it serious?"
"No its grand, you don't die from it or anything...basically, I just don't have any energy"
"oh, right"
" Well, its kinda serious because I can't work or do anything really...but, well, you know....."
At this point the conversation just dies, the person tries to change the subject and I feel terrible because I can't even explain my own crappy illness!

It really difficult to explain an illness like ME/CFS to people. I don't look sick. I could tell you list of my symptoms but that doesn't convey the reality of living with the illness day to day. I could tell you all the things I've lost and all the things I can't do because I'm ill but well, its a bit depressing! And then theres all the added difficulties and complexities of trying to deal with an illness thats not understood fully by science or the medical profession. To be honest, after being ill for 3 years I'm still trying to understand this illness myself so I'm not even going to try to explain it to you!

Instead I ask you to read this story. Its actually written by a girl who has Lupus but I think it also explains a little of what it is like to live with M.E./CFS.

If you want to know more about M.E./CFS check out the following links.
Action for ME (UK - easy to read)
A Hummingbirds Guide to ME (A mountain of articles and refrences if you are curious!)
Phoenix Rising - A Guide to Chronic Fatigue Syndrome (Lots of sciencey research stuff)
The CFIDS Association of America (America...obviously!)
Irish ME Trust (Ireland - Not a great website but helpful if you get in touch with them.)

P.S. If someone is selling the blue ribbons in your part of the world today today please buy one!

3 comments:

Tom K. said...

Well done on highlighting today - love the blue ribbon.

While I'm at it, in case there are other people from Ireland who read the blog, I thought I'd point out there's another ME group in Ireland, the Irish ME/CFS Association (formerly the Irish ME/CFS Support Group).

Our website is very very basic http://www.dublin.ie/websites/irishmecfssupportgroup/ (we haven't even changed the name yet - but we are having a logo competition atm for the association's new name) but it does give contact details and some links.

Hopefully eventually we'll have a proper website but we're an all-volunteer group run by sick people and we end up dealing with all sorts of work.

Angie hearts said...

Thanks for letting people understand this

ed said...
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