(* Dr. Seuss in Horton Hears a Who)
Just like those tiny Whos living on the dust speck in Horton Hears a Who, all of us with CFIDS must speak up and let our voices be heard by those who have the power to save us.
Today in the U.S. is the 14th Annual CFIDS Association Lobby Day, when 90 participants are visiting members of Congress to ask for increased funding for CFIDS research. I had planned to join them but had to cancel when I realized I wasn't well enough to manage the short trip to Washington. Friday is International CFIDS/ME Awareness Day.
I am severely crashed today. I've spent all day in bed, which is very unusual for me. I am in the process of using up every precious drop of energy I have today so that my voice will be heard, even though I couldn't make it to Washington.
My health and my life - and the lives of my children - are at stake. I work very hard to accept my life of limitations and make the best of it, but I desperately want to get better and want my boys to be able to live normal, healthy lives. Nothing will happen without more money for research and more attention from the government.
Go to www.cfids.org and click on the Grassroots Action Center to send letters to Congress and others with the power to change our lives. It's automated and only takes a few moments. I took a few extra minutes to add a couple of paragraphs about the impact of CFIDS on our own lives.
Go do it now. If you live outside of the US, take 10 minutes to write a letter to the editor of your local newspaper about ME/CFIDS Awareness Day.
Our representatives need to know that those 90 people at Lobby Day today each represent another 10,000 of us with CFIDS who couldn't be there.
We are here!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
We are here indeed! And spending too much time in bed.
ReplyDeleteThat's great that 90 people showed up for Lobby Day. It sucks that people as sick as us have to lobby to be treated appropriately. So often it feels like such a Catch-22: we can't lobby effectively because we're too sick, but if we don't lobby we'll stay sick. Ugh.
Thanks for doing your part with your post. :)