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ME/CFS South Australia 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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'My Life Is Lockdown' - New Zealand ME/CFS Sufferer
Wednesday 13 May 2020
From New Zealand news outlet SunLive:
 Tauranga woman Angela Larsen says more people need to understand the struggle of those living with the chronic illness ME. (Photo: Supplied.) |
‘My life is lockdown’ - Tauranga ME sufferer
Completing daily tasks like getting out of bed, showering, cooking a meal is a “full-time job” for a Tauranga woman battling with chronic fatigue syndrome.
Angela Larsen, 25, was diagnosed with the debilitating illness, also known as myalgic encephalomyelitis, back in 2018.
She has been forced to accept a new way of living - learning to slow down, rest up and find joy in the simple things.
Today marks International ME Awareness Day. Angela is urging the community to show more respect and understanding to those living with the “invisible” illness.
ME can cause disabling symptoms exaggerated by physical and mental exertion.
According to the Association of New Zealand ME Societies, more than 20,000 people in the country have the disease.
Angela experiences fatigue, brain fog, post-exertional malaise and body aches from ME.
She also has fibromyalgia, which she was diagnosed with in 2017. It took about four years for her to get this diagnosis.
The hardest part of living with ME and fibromyalgia is the grief that comes along with it, Angela says.
“There’s so much grief because you have to give up what you thought your life was going to be. Not to say that I have a terrible life or anything, it’s just very different from what I imagined.
“I don’t work, I can’t hold a job. Because my full-time job is living - just being able to shower and cook some food.”
Angela uses a shower seat and walking stick regularly. Needing these at 25 makes her “a bit sad”, but it is something she is gradually starting to accept.
Many people in the community don’t understand how crippling the illness is, says Angela.
“I don’t think the wider community understands it at all. People will say to me ‘oh we all get tired - it’s just life'. ”
“But this isn’t a regular tired - it is so much more than that. We don’t have restful nights of sleep, and our batteries never fully recharge.”
She says chronic illnesses, like ME and fibromyalgia, are invisible.
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