ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
Closed while relocating
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Disease often misunderstood
Thursday 24 May 2012
Disease often misunderstood
CORNWALL — When Denise Hurtubise was feeling achy and sore, having bladder and stomach problems, it took several visits to several doctors to finally find the answer, even though it is the third most common chronic illness: fibromyalgia.
Even with all the doctors’ visits and constant pain, many in the medical profession didn’t believe she had anything to be concerned about.
Nineteen years later, Hurtubise knows that fibromyalgia is a very real and very debilitating illness, having forced her to quit her job and occasionally keeping her prisoner on the couch.
“You have to pace yourself,” said Hurtubise. “There are good days and bad days, but the bad days are really bad.”
Pain is the new normal.
Fibromyalgia and myalgic encephalomyelitis (M.E.), also known as chronic fatigue syndrome (CFS), are the only chronic illness of the top six most common without a strong public image and funding source.
Others, like heart disease, diabetes and HIV/AIDS, garner considerable support, but fibromyalgia is raising awareness slowly through the purple ribbon.
And those suffering from the disease have support from each other.
The Seaway M.E./ Fibromyalgia Help Group brings together 30 or so local residents struggling with the condition for moral support and weekly aqua fitness — the best workout for those suffering.
The disease takes on many forms and has many consequences for those suffering, including pain in tendons and ligaments, migraines, memory problems, cognitive difficulties, irritable bladder and itching skin.
There is no known cure, but research is ongoing.
Carol Boileau is also living with fibromyalgia, and is running into the challenges of navigating the disability coverage and insurance world.
The disability tax credit is helpful, they said, but only once you are able to meet the requirements to be accepted. Those needing to manage long-term financial security while suffering from a disability can also apply for a registered disability savings plan.
“I’ve always wanted to go to Disneyland,” she said, “but I know I can’t do that now.” She can’t walk for long periods of time.
Hurtubise said the key is coping. With that comes first accepting that there will be limitations in your life and then making your family understand as well.
May 12 is recognized as the International M.E./CFS and Fibromyalgia Awareness Day, and it will be recognized locally as well after Mayor Bob Kilger signed a proclamation this week.
The Seaway M.E./Fibromyalgia Help Group will also be meeting Friday (11 May 2012) for a picnic at 1 p.m. in Lamoureux Park as well.
Their weekly swims take place Tuesdays and Fridays at noon at the Aquatic Centre.
For more information, Hurtubise can be reached at firstname.lastname@example.org.
The above, with comments, originally appeared here.
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