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ME/CFS Australia Ltd
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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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Staying Hopeful Amid Life With Severe Myalgic Encephalomyelitis

Sunday 26 July 2020


From Yahoo! News (via The Mighty):


Woman lying in hammock
A woman is lying in a hammock reading a book

Staying Hopeful Amid Life With Severe Myalgic Encephalomyelitis

By Naomi, The Mighty
July 16, 2020
© 2020 Yahoo! News and The Mighty.

Myalgic Encephalomyelitis (ME) is a neuroimmune illness that affects 1 in 4 people severely, according to the Action for M.E. I am one of them. In the United Kingdom, there are 250,000 people — children, young people and adults — living with ME.

My mornings start usually feeling more tired than when I went to bed and despite living my day permanently exhausted, some nights I can find myself hit with insomnia. But with changes to my daily routine and things like not drinking caffeine after 4 p.m., my sleep is much better these days.

There is no “typical” day for me as I can never predict one half-hour to the next. One moment I can be typing a story for The Mighty, then I can be hit with a brick wall of fatigue and exhaustion rendering me almost catatonic and unable to function. The unpredictable nature of ME can be hard to deal with and I’ve had to learn my limits. I now feel less guilty with cancelling plans, letting things go and prioritizing and learning that it’s OK to do things another day. Thankfully I have understanding friends who are OK with me cancelling plans or taking a while to reply to messages or letters.

I have a schedule or “daily plan” for my day which my occupational therapist and I put together. We built up my plan gradually to what it looks like now. I find it to be really beneficial and I find it helps with pacing (an important tool to learn if you have a chronic illness). I find having a structure to my day really beneficial as it gives my day purpose; not only does it benefit me physically, but with my mental health too.


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