Today is International Awareness Day, and there are an unprecedented number of ways to participate without ever leaving home
Origin of the event
The May 12 Awareness Day event was founded by Tom Hennessy in 1992, and here's the story. (CIND stands for Chronic Immunological and Neurological Diseases and these diseases include Neurofibromatosis, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)/Myalgic Encephalomyelitis, Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivity.)This is an excellent interview with Mr. Hennessy by Cort Johnson of Phoenix Rising.
The May 12th date was chosen to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross.
Stuff to read, watch, listen to or do
CFS State of the Union podcast by Dr. Teitelbaum
What You'll Learn
Dr. T's podcast will update listeners on the following topics:
- Latest CFS/FM news — U.S. and global.
- Recent and upcoming research and findings.
- New treatments (pharmaceutical and natural therapies).
- Center for Disease Control CFS Awareness Campaign.
- Outlook for CSF sufferers — there is hope!
- How to find help/support groups/other resources.
The American Pain Foundation has an excellent collection of Awareness Day information and links including one of my personal favorites, the Pain and Creativity Project. There are some really stupendous works of art in this twelve page .pdf display of paintings and poetry.
This is called Passages and it's from Olga Gerrard via Flickr:
"For some time, I have been grappling with the reality of a body that is far from perfect. I'm not talking about issues of weight, anorexia, wanting to be a model - I'm dealing with a body that once would carry me running over mountains 20 miles at a time, ski down hills for days on end, that was able to support me through every day, every adventure, every passionate embrace, and a gratifying career.
"Through the intricacies of some weak genes, my once dependable (but mortal) coil turned on me. Along for the ride, my brain chemistry has skewed. It is a cruel thing, and I just loathe the facts. And yet, there are so many people that have far more serious issues to deal with than do I, and I have a whole new appreciation for the strength of will and character that it requires to go through life with disabilities and challenges that the "average" human does not have to endure.
"Through my illnesses, I have found heroes- the caretakers of the sick and ailing, those who dedicate their lives to bettering the quality of life for others, and do so for pennies, compared to what someone like Paris Hilton gets paid for being - nothing.
"I’m changing. As I become weaker, I find strength I did not know existed previously. As I shed tears, I cast off prior assumptions. Life is an interesting journey, and no matter how well prepared you feel you may be, you just never know what waits tomorrow.
Passages on life's way. "
Passages, originally uploaded by Olga Gerrard (going off the grid again, CU soon).
The National Fibromyalgia Association has been doing weekly podcasts, and their 2009 Awareness Program "Fibromyalgia Affects Everyone" includes a guide to telling to telling your personal story.
The Fibromyalgia Network has excellent advocacy and awareness resources.
CFIDS Association of America has an Awareness Day packet with some good info.
PANDORA, Inc. has a great 2009 Awareness Day poster.
You might also want to check out...
World ME & FM Meditation and Prayer Day
for FM Awareness Day
This post has a wonderful balance between raising empathy and awareness. Thanks for sharing all that is here. I got my post up today, too.
ReplyDeleteThanks, Marj, & I'll check your post out too.
ReplyDeleteRaising empathy and awarenesss is fine all day long but in the end.... I'm still lucky if I can gather enough energy to get out of bed to showr by 6 p m, 8. 10 p m oe midnight! Somedays I have no energy to shower at all. Some people say to take certain minerals and well that's only for people who have money, see. I'm on disability, oh yes, they just increased my check after the recestion of 5 years. Increased it by $12.00. In the end I still only receive less than $7,000 a year. Who can live on that? My husband also has it and works only on commission, if he doesn't sell anything, we don't eat. In all, our income is less than $30,000 a year. As a bedridden person who saw the last 22 years and the best years of her lives slip away (when my children were young and growing up) I'm so sick of this awareness stuff. I want real answers, now! I was so used and abused the "the system" in which doctors give you the "carpet treatmentz' in their offices and declare you to be depressed when you know your not.They made me see the same shrink for 17 years who experimented on me with everything. Some things every gave me grand mal seizures. You know what happens when a well minded person takes that crap? They act crazy. My own brother won't speak to me because of the antics which occurred on those pills. All because I had no energy. I still don't & need amphetamines everyday just to wake up and stay up so I'm nervous all day. Provigil 600mg helps a lot also, Doctors, Wake Up & get with the program! I had to diagnose myself because I ran out of money giving it to quacks. Go back to school, I haven't even mentioned the constant pain I'm in 24 hours a day. It feels like lightening bolts going thru me. Then there are the migraines, daily constant.
ReplyDeleteI wish you were in my body for 6 month. If I'm lucky, I might have 5 good days a year so that I can go out for like an hour? I live in Orange County where there are supposed to be good doctors? They're good at taking you money My entire life has been a complete waste.