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'I was, many days, crying in pain'
Businesswoman Shirley Westeinde joins campaign for fibromyalgia
Kelly Roesler
The Ottawa Citizen
May 10, 2005
Shirley Westeinde, who
suffers from fibromyalgia, says many doctors view the chronic pain and
fatigue as a mental illness and tell patients to 'just deal with it.'
Shirley Westeinde, one of
Ottawa's busiest businesswomen, suffers from fibromyalgia, a chronic
disorder marked by constant muscular pain and fatigue. Nevertheless,
she has found a way to manage. And in doing do, provides hope and
inspiration for thousands of others.
"It's an arthritis of the
muscles. Instead of your bones and joints being sore, it's your whole
body," she said, describing the symptoms of fibromyalgia. "It's pain
all over."
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| Mrs.
Westeinde, chairwoman of the Canadian Construction Association and
co-owner and manager of the Westeinde Group of Companies, is one of
several prominent Ottawans involved in an awareness campaign to garner
attention -- and money -- for FM-CFS Canada, a national charity
promoting awareness of fibromyalgia and chronic fatigue disorder.
According John Ernst,
executive director of the organization, at least 100,000 Ottawans
suffer chronic pain, and about 40 to 50 per cent of them have
fibromyalgia. Unfortunately, he says, there's a stigma attached to it
because "there are a lot of doctors who don't believe it's an illness."
He wants further education and research into the disease, and hopes
the federal government will provide $10 million as a two-year seed
investment.
About one million Canadians
are currently affected by fibromyalgia, or chronic fatigue syndrome,
says Mr. Ernst. "We consider this a public health crisis. It affects
the equivalent of a small city every year."
Mrs. Westeinde is one of
them. She was diagnosed with fibromyalgia about 15 years ago. Coping
with the illness while conducting a fast-paced career has been a
constant struggle. "I was, many days, crying in pain, and I would carry
on. But it was so difficult I just wanted to get under my desk and go
to sleep," she said. "It was just so difficult to get through my day,
so I have major empathy for so many people who are suffering so much
from this disease."
Over the years, she's used
light exercise, massage therapy and swimming to cope with the "deep,
muscular pain" of the illness. But a few years ago, the pain became
almost too much to bear, and she considered resigning from her job. "I
was so sick that I truly considered resigning because the schedule was
so hectic, and the travelling," she said. "I knew I couldn't do it.
That's when she tried "braingym" -- a series of physical and mental exercises to improve her circulation, which she does twice a day, every day.
"It's been a bit of a
miracle for me," she said. "It certainly hasn't gone away, but it has
allowed me to do what I've done the last two years."
Her busy life has actually
helped her deal with fibromyalgia, it seems. "I actually think being so
busy is a good thing. When your adrenaline is flowing and you're busy,
then you don't have time to think about the pain." And when the pain
does become severe, "you just talk to yourself and force yourself to go
forward. If you've got things to do, you cope."
Coping with the daily pain
is just one of the issues surrounding fibromyalgia. Feelings of
helplessness are common to those diagnosed with the illness. The
results can be tragic. "There have been many suicides from people
suffering from fibromyalgia and just couldn't cope anymore," says Mrs.
Westeinde.
Reprinted with permission from Mary Hogan, as printed in the Ottawa Citizen's City section, May 10th, 2005
"Brain Gym is a registered trademark of the Educational Kinesiology Foundation / Brain Gym International."
One of many letters of moral support, may we invite yours?
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