Today I did my full array of morning exercises! That means it’s a pretty good day. No day is what it used to be for me. I have fibromyalgia and its pesky cousin, Chronic Fatigue Syndrome (CFS), so I’ve had to re-define the measure of my quality of life. This puts an interesting perspective on each day and, in some ways, it has made me far more conscious of how I map out and assess each day. I live more deliberately.
Incidentally, if your visual of me exercising includes a gym, machines, power walking, yoga - let me clarify that those places and activities defined exercise in my life before the limitations of my condition. Now, my ‘exercise’ happens before I get out of bed, so that I can get out of bed. I stretch my stiffened muscles (painful), and do strength building repetitions (painful). It’s a comical comparative to five short years ago when I would power walk four miles in an hour and then, because I still had energy to burn, I’d power dance for another half hour.
When I’m feeling particularly out of step with my peers, or longing for my prior health, there are two things I focus on. First , I bring to mind the accomplishments of two people, Laura Hillenbrand, author of the book Seabiscuit, who has Chronic Fatigue Syndrome, and Stuart Murdoch, an amazingly talented musician and songwriter in the band, Belle and Sebastian, who suffered with fibromyalgia at an early age, while trying to get his music career underway. Second, I think about the women in other parts of the world who feel like I do as they go through their fibromyalgia/chronic fatigue day - but for them there is a potentially hostile military presence in their streets, stressing them with worry for the safety of their children and others they love. I think of the strength they need to care for their families, with limited access to water, electricity and food. That’s when my ‘no whining allowed’ banner starts waving in my mind! Having these conditions is a huge challenge, but I have so much to be grateful for, if only I consider the luck that put me in a time and place where I can drive a peaceful hour to some of the best medical care in the world. Amen.
In the U.S. today, two to four percent of the population is considered to have fibromyalgia.
In a study just completed in Europe, where a similar percentage of the population has fibromyalgia, there shows an increase of diagnosed fibromyalgia patients of 200% to 300% in the last three to four years. A study underway in the U.S. expects to reveal similar numbers. (This information was shared at the August 16, 2006 Fibromyalgia Conference in Boston, MA.)
Nine out of ten people with fibromyalgia and chronic fatigue syndrome are women.
The U.S. Centers for Disease Control and Prevention has committed to a $6 million public awareness campaign, to educate the public about this disease. They are sponsoring a traveling photo exhibit , "The Faces of Chronic Fatigue Syndrome," which until July 23, is at the Boston Public Library. See www.cfids.org for dates that the exhibit might be in your area.
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