Ainslie Eccleston would rather look silly and wear her underwear on the outside than suffer an “invisible illness’’ in silence.
The Albion Park Rail resident has been battling Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since 2006.
ME/CFS affects around 17 million people worldwide. It is a neuro-immune condition with wide ranging symptoms including profound and disabling fatigue and pain.
The Undies on the Outside Challenge is encouraging supporters to shine a spotlight on the invisible nature of the illness by revealing what usually stays hidden.
Mrs Eccleston hopes the community gets behind the campaign to raise awareness about an illness which has rendered her bedridden for long stretches of time over the years.
“It’s bloody horrible,” she said. “The first three years were horrendous.
“I basically had to come home and mum had to feed me and look after me because I just couldn’t cope with the very very simple things such as get out of bed and prepare food.
“It was basically bed to bench to eat, bed to toilet, then back to bed...it was horrible.’’
Mrs Eccleston turned a significant corner at about the six-year mark before meeting her now husband Troy, who was diagnosed with MS around 13 years ago.
In a bizzare twist of fate, just as she was improving, Troy's condition became one of rapid secondary progression meaning that she had to step into the role of carer and advocate for him while doing her best to balance her own health.
“That’s difficult because I’m effectively someone who could do with a carer, but I’m being a carer,’’ she said.
“The last three years have been much better but I’m still very effected. It’s just that over the period of time I’ve used various different mechanism strategies to help get the most out of my life and also to help manage my energy.
“Every day I have what I call a siesta, but really it is just lay there and hope it is doing some good.
“I also pace myself really gradually and do little bits of the things that I need to and the things I enjoy and am passionate about basically to keep me feeling helpful and productive.’’
International ME/CFS & FM Awareness Day is on Thursday, May 12. Mrs Eccleston encouraged people to drop by Green Poppy Cafe in Shellharbour Village on that day from 11am for some fun and to raise funds for Open Medicine Foundation’s End ME/CFS project.
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