ME/CFS AUSTRALIA (SA) INC
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South Australia 5007
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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.
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Suffering In Silence
Saturday 22 August 2015
Suffering in Silence
What's in a name? When an Agassiz resident was first diagnosed with fibromyalgia, she knew it only as a strange-sounding name. Fast forward to a few years later, and it's safe to say that Leah's understanding has come a long way. In May 2016, she will host the ambitious Just One More Step fibromyalgia awareness walk in Agassiz as it makes its way from Langley to Banff.
Leah is part of a team participating in the walk, designed to help raise awareness not only of those afflicted with fibromyalgia but also of those that suffer in silence with other invisible illnesses.
“I can't do the walk because of my pain and condition, so there's no way I could train, but I will be a voice,” Leah said. “I will help with food and accommodation, and I will walk down Pioneer Street with the group.”
In 2002, Leah was involved in a serious car accident that changed her life virtually overnight. She went from being an active parent and preschool teacher to suddenly no longer feeling anything like herself. Suffering from headaches, chronic joint pain, and chronic fatigue, and often feeling like she is in a fog, Leah is no longer able to work. She now lives a life where a good day means having less pain and being able to get out of bed to function.
The change was very difficult on Leah and her family, especially at the beginning. As with other sufferers of invisible illnesses, Leah didn't understand what was happening to her. It was an emotional time marked with thoughts of uncertainty, not only for Leah, but also for her husband and two children.
Eventually, a pain specialist diagnosed her with fibromyalgia and by chance, the very next day, met Cheryl Young, founder and executive director of the Fibromyalgia Well Spring Foundation, at a Langley Canada Day information booth.
Leah walked up to the fibromyalgia booth and said, “I just got diagnosed with this and I have no idea what it's all about.”
Young shed some light on fibromyalgia for Leah, and directed her to the Fibromyalgia Support Group in Chilliwack, which Leah continues to attend. Meetings are the fourth Wednesday of every month in the Lynnwood Retirement Centre. Leah will also start an Agassiz support group if needed.
Although Young is afflicted with fibromyalgia, chronic fatigue, and asthma, she plans to complete the full walk to Banff. She had originally envisioned herself as the only walker in the event, but growing interest has prompted up to 25 other walkers to join her for all or part of the way.
Organizers are taking walker safety seriously. Young has already consulted with the RCMP and the Ministry of Transportation to establish the safest route, and she and her husband have driven every 25-30 km leg, noting locations for rest stops, food, and accommodation along the way. The walk is expected to take 35 – 40 days.
When asked about the goals of the walk, Leah explained that her personal focus “is to educate people on invisible illnesses so that there is more compassion and empathy. When you are out in public and you see someone who looks well but appears to be struggling, don't judge; maybe ask if they need help.”
She explained that many people don't realize that there are people around us suffering from fibromyalgia, or brain injuries, or other things entirely. She asks, “Why not have empathy for all people? People look at illness as something that you should look sick, you should look ill, you shouldn't look well, but that isn't always the case.”
Leah's passion is to help people have more empathy, understanding the differences that we all possess, especially when you can't see them, and she wants to help provide hope and community for those that suffer in silence.
She described awareness of fibromyalgia as still having a long way to go.
“Awareness and acceptance is just like where MS was 20 years ago,” she said.
Just One More Step continues to seek volunteers and donations. Leah emphasized that any size of donation can help, even gas cards and food cards. They are also still working on looking for accommodation sponsors in some areas.
A filmmaker will join them to make a documentary about their journey. Young is inviting other professionals on board as well, including students with medical, chiropractic, physiotherapy and even massage backgrounds.
For more information, readers can contact Cheryl Young at 778-278-3697 or visit the walk's website at www.fibromyalgiawellspringfoundation.org.
The above originally appeared here.
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