Wak­ing up the world

The Weekly Advertiser Horsham - - News - BY PETER MILLER

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 peo­ple 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 might 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 walks that her life changed for­ever.

“I had walked to the park and when I got there, I felt so ex­hausted that I couldn’t get home again,” she 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 and ac­cept the con­di­tion.

“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.”

Lack of em­pa­thy

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 had 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. • The cause of chronic fatigue syn­drome is still un­known and there is no cure. Symp­toms can 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.

Peo­ple seek­ing more in­for­ma­tion on the sup­port group can call San­dra on 5398 1970.

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