May 12 – ME/CFS Awareness Day
Posted by: ninacolors on: April 29, 2010
Since there will be many posts closer to or on May 12, I am posting now to reflect on how devastating this illness is, how hundreds of thousands of people suffer silently, and how much COURAGE it takes to live like this — year after year after year after ……
I have had CFS for over 20 yrs, and altho I can now function normally on most days, I was recently made aware of how vulnerable our population is. The state of Illinois is bankrupt, and funding for the free, books on tape service will end by August. It was not long ago that I wasn’t able to read at all, and depended on this service for my very existence. Altho my body was very sick, my mind still needed and wanted stimulation. I’ve done the usual phone calls, letters and emails to state government officials, but I”m not sure they matter much when money is tight, and a huge population of people who cannot read for various reasons, is invisible.
I am not an eloquent wordsmith, so I leave you with a visual designed by the always visually eloquent Rachel Creative
8 Responses to "May 12 – ME/CFS Awareness Day"
April 30, 2010 at 4:20 am
Lovely to hear from you. I too, have lost the ability to read narratives and rely on listening. As we approach a General Election over here there is much talk about impending cuts to public services and I fear our libraries will suffer badly – as well as many other areas.
I make frequent and copious use of the BBC radio iPlayer, especially for Radio 7 which broadcasts loads of drama. I believe it’s freely accessible world wide, no subscription.
http://www.bbc.co.uk/iplayer/radio/bbc_7
You are my artistic inspiration. I hope to meet you one day.
April 30, 2010 at 5:54 am
Wow – thanks so much for the BBC link! I love listening to dramas. I haven’t figured it all out yet, but sure hope it works on a mac:-)
May you be spared public library cuts; the pundits here say the economy is picking up (a jobless recovery – God save me from pundits).
If I am anyone’s inspiration, that makes my heart grow big w love. Thanks. And we WILL meet!!
May 13, 2010 at 3:00 am
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May 13, 2010 at 4:09 am
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July 12, 2010 at 9:18 am
Hello from a very old friend … Glad to read (and see) that you are an artist these many years later! Bravo!
July 12, 2010 at 11:14 am
Hello old friend! Wow — you’ve know about CFS as long as I have:-) Thanks for stopping by to comment.
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My 10-minute life on flickr
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April 29, 2010 at 8:19 pm
Hang in there. After 20 years of CFS, I think I see light
at the end of the tunnel ! Not only XMRV and the blood
donation bans around the world this month. The May 12
CFS / ME rally in Toronto will be b-i-g. I hope it will be the
Stonewall for ME people. Thanks for these inspiring pics !!
April 29, 2010 at 8:22 pm
Thanks for the encouraging words, Paul. I hadn’t heard abt the big meetup in Toronto. I love Toronto:-) I also hadn’t heard abt the blood donation bans. That’s what I get for being an artist who hates to listen to the news!!