Friday, November 07, 2008

The Face of CFIDS

The Face of CFIDS is an exhibit traveling slowly across the country right now. The faces of a number of people with this illness are in large printed photos and their stories told in text and by video. The below quotes were taken from this article at this link. One of the videos shows a man who's been able to return to work, but that's it. He sleeps the rest of the time. Most of the people with this illness whom I know are unable to work, yet want to. That includes me. It's difficult, frustrating, and frightening to have your ability to function taken away from you.

Even harder is the fact that very few doctors are expert in helping with recognition and symptom management. Those few are aging and none take medicare. I'd been seeing an immunologist who did, for 8 year, then switched like the others to fee on service. $250 for a half hour with him. I had to stop and find a general internist who does at least know about the illness, but medicare dicates such limited time that I see him for barely 15 minutes and never long enough to address very much more than the basics. I've been in the worst crash in years for the past 4 months now. I can barely walk through the house, lifting my arms is like lifting stones, my mind is swimmy and thinking is difficult. Writing this takes all of my energy. I'm afraid I won't pull out of this but surely I will. The fear lingers, though.

The quotes below:

CFS is characterized by at least six months of profound, incapacitating fatigue that gets worse with exertion, be it physical or mental activity. Other defining symptoms include impaired memory or concentration, sleep problems, muscle and joint pain, headache, sore throat and tender lymph nodes. Some people recover with time, some go into remission at times. Some get progressively worse. The disease is four times more frequent in women than in men.

Calling it mere “fatigue” is a gross understatement, says McCleary.

“You hear people who have it saying, ‘This isn't a death sentence but it's a life sentence,'” she says. Moreover, labeling this disease as “fatigue” has been unfortunate.

“That makes it sound like it's a lifestyle issue when it's really much more serious and complicated than that,” she says. “People don't understand what you're going through, because you look perfectly fine. They happen to see you in the grocery store and they don't realize the trip is going to put you back in bed for two or three days. This isn't a visible illness

“This is total exhaustion,” says Westerman, whose condition is so severe, her husband of 37 years, a successful real estate developer, has had to take over all the household duties, from laundry to grocery shopping. “You go to sleep at night, and if you've even slept, you don't feel one bit different in the morning than when you went to bed. ... There's no part of your life this doesn't impact. This illness will either make your marriage stronger or it will end it.”


JimK said...

I hope somebody is researching
something on it..

JimK said...

It's exhausting just
reading the symptoms:
Almost seems like always being
on that front edge of a bad virus
with no resolution.

Pris said...

Some research is going on, but not nearly enough and cfids foundations often have to do fund raising. Initially several prominent researchers were interested in cFIDS but could get no government funding, so switched to research on AIDS. AIDS is clearly a major problem but people all over the country and the world are funding research on it now. About five years ago, a reporter uncovered the fact that NIH had been diverting what paltry funds it had for CFIDS to other illnesses because they didn't 'believe in it'. Now a watchdog committee from congree monitors that funding (still paltry, though)

And yes, it's like having flu all of the time. When it's at its worst, I can barely stagger through the house.

Thanks for commenting. This isn't exactly an 'upper' post:-)