Debbie Bagley knows what it's like to get "the stare" in a shopping center parking lot.
At age 43, with her dark brown hair and trim figure, dressed in a fashionable denim jumper and melon shirt, she looks the very picture of health. Her eyes are clear and bright, her gestures animated, and she has the sort of personality that makes you instantly feel comfortable with her, as if you've known her for years.
It's just that some days, she can't take that first available parking space and walk half the length of a football field from her car into the store. On her bad days, her "down" days, she confides, that much activity would send her to bed for the next 24-72 hours. Some days she has to use her handicapped parking sticker, take that space closest to the store.
And that's when she gets "the stare." "I understand it," she says. "You look just as healthy as you can be, and there you are, taking a handicapped parking space. People wonder what you're doing - you can feel them looking at you."
"You know, that makes you think about a lot of things, having that happen. You wonder sometimes if you've gotten the wrong impression about somebody else. You don't ever really know what all is going on in somebody else's life."
What's going on in Debbie Bagley's life is, first and foremost, fibromyalgia - with associated mitral valve prolapse syndrome, and all the pain and frustrations that go hand in hand with both.
Bagley and her healthcare providers (her physician at Mitral Valve Prolapse Center is Dr. Susan Phillips) think the Tuscaloosa, Ala., resident began suffering from fibromyalgia in about 1990, when she was actually misdiagnosed as having contracted Lyme disease. The year before had not been a good one for Bagley; her father had died and she went through a divorce, all the while dealing with ongoing job stress in her combined position as an executive secretary and marketing director for a credit union. "I couldn't walk, my vision was real blurred and my nerves were shot," Bagley remembers. "The best way I can describe how this feels is like when you're taking the flu and your body just aches all over.
"That was the same year that the American College of Rheumatology set the criteria for fibromyalgia, so it still wasn't very widely known."
Later on, more symptoms would add themselves to what at times seemed to Bagley an already overwhelming list. She couldn't sleep, suffered panic attacks, and at times her heart would race wildly, sending her "in and out of the emergency room" trying to find the source of her medical problems. In the summer of 1995, after a hospital stay and what seemed like innumerable rounds of tests, Bagley was directed to the Mitral Valve Prolapse Center, where she began to learn about the links between her primary condition of fibromyalgia and mitral valve prolapse syndrome.
"I have improved because I have accepted what I have," Bagley says. "At first I couldn't go to the Center without crying, but now I understand what's going on, and I know what I can do to help myself."
Some of those self-help techniques including drinking at least 64 oz. of water a day ("I keep my Mitral Valve Prolapse Center cup filled up and with me all day," Bagley says, gesturing to the coffee table), taking 120mg Cardizem-CD daily, and 1 mg Klonopin and 100 mg Desyrel when she can't sleep. Her day begins when she rolls out of bed and goes immediately to the treadmill her husband moved to the bedroom for her. ("He's my greatest source of support," she says of Paul Bagley.)
After the treadmill routine, she takes a warm shower and does stretches while in the warm water.
"If I go two days without exercising, without my treadmill and stretches, I can tell it," says Bagley, who is group leader of the Fibromyalgia Self-Help Group in Tuscaloosa. "When people call me and ask for advice, one of the first things I ask them is if they exercise. When they tell me 'No, I just can't,' I tell them I understand it's hard to do, but it's so important."
A favorite book she recommends to callers and those attending meetings is Laugh at Your muscles II: A Second Light Look at Fibromyalgia
by Mark J. Pellegrino, M.D. and Barbara Dawkins. She also tells them that finding a source of support outside of the immediate family, be it the self-help group, a psychologist, church or a combination of all of those, is very important.
"The most important thing is to keep a positive attitude," she says. "Even on the days when you feel your worst, make yourself get out of the house for at least a little while, even if it's just to go to the grocery store. And support groups help even when they're not meeting, because you can meet people there who you can call when you're having a down day, and they'll understand what you're talking about."
Bagley says the Tuscaloosa support group follows a once-a-moth meeting schedule, with time off during the summer and winter holidays. Physicians, psychologists, massage and physical therapists and chiropractors have all been guest speakers, and once every third month the entire evening is devoted to members sharing experiences with one another.
"What's said at our meeting we like to leave at our meetings," Bagley says, noting that many people are very concerned about the confidentiality aspect of discussing health-related matters. "We also stress that everybody's different - just because one person takes a certain kind of medication and it works for them doesn't mean it will work for everybody. And we talk about patience; I've learned that you can't take a new drug for a week and expect it to work immediately.
"Dealing with all of this - the medications, the changes in your lifestyle - it takes time."
For more information about a fibromyalgia support group near you, visit this site:
http://www.fmnetnews.com
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