When Sandra Cowan contracted chronic fatigue syndrome, the medical world was still asleep to the illness.
The Warracknabeal woman has started a support group for community members who suffer from the complicated disorder and related illnesses.
Sandra has been living everyday with chronic fatigue syndrome since 1991. She wants to be able to support others who may be feeling the same disconnection that she deals with daily.
Sadly and yet surprisingly, there are enough sufferers in the Warracknabeal community alone to form a support group.
In 1991 Sandra was keeping busy as a realty custodian and gardener who enjoyed playing guitar and singing during her recreational time. Not long after recovering from a bout of chicken pox, she became aware of increased lethargy.
Despite this, she maintained her active lifestyle which included regular long walks. Sandra said it was during one of these long walks that her life would change forever.
“I had walked to the park and when I got there, I felt so exhausted that I couldn’t get home again,” Sandra said.
“I had no idea what was wrong with me but it was a frightening feeling.”
Sandra told her doctor that she was constantly experiencing an overwhelming feeling of exhaustion and nauseousness. She was diagnosed with having anxiety though she was quite sure that wasn’t the case.
Her quest to find out what was actually wrong led Sandra to a naturopath who eventually made the accurate diagnosis. Chronic fatigue syndrome is described as a complicated disorder characterised by extreme fatigue that cannot be explained by any underlying medical condition.
Sandra’s illness has changed her life significantly but she has learned to live with it and accept it.
“You never know how much energy you’re going to have each day and you can’t exercise your way back to good health,” she said.
“If you overdo it with physical or mental activity, you will only end up more fatigued but resting doesn’t make you any better either.”
Sandra said one of the most difficult aspects of the illness was a genuine lack of empathy from others.
“You hear people saying that ‘a lot of it is in the mind or that people with the illness are just naturally lazy’,” she said.
“It’s really hard to digest such comments and that’s why I believe the support group is so important.
“You start to disbelieve yourself about how you feel because everyone else disbelieves it.
“The only people who totally understand how you’re feeling is a fellow sufferer.”
Sandra said mutual support from fellow sufferers has helped her significantly.
“Mutual support is invaluable so you can talk to others and share what symptoms you might have in common and a few suggestions on how you cope,” she said.
“I’m also appreciative that our GPs have a genuine acceptance and better understanding of the condition these days.”
Sandra finds a source of therapy in poetry. She has written poems about her condition and some have been published nationally.
NB: The cause of chronic fatigue syndrome is still unknown and there is no cure. Symptoms may include constant, debilitating fatigue or lethargy, muscle and joint pain, headaches, dizziness, nausea, blurred vision, cognitive problems, low immunity, post-exertional malaise, sleep difficulty and depression or anxiety due to the symptoms and the inability to lead a normal life.
Warracknabeal’s Chronic Fatigue Syndrome, Myalgic Encephamyelitis and Fibromyalgia Support Group meets at 1pm on the first Tuesday of each month at Rural Northwest Health’s campus. Carer’s friends and family members are also welcome to attend the informal gatherings.
For more information on the support group, contact Sandra on 5398 1970.