Real people, real lives and a really accurate insight into life with ME/CFS:
“What is it like to suffer with ME? Those who are most severely affected can have the most horrible symptoms – paralysis, nausea leading to the inability to eat, hypersensitivity to light, sound, smell, fatigue so intense that they cannot even sit up. Some of the worst affected spend months or even years in dark rooms, flinching at every sound, in constant discomfort and totally dependent. I am fortunate – my illness has never reached this level. Since becoming ill 3.5 years ago I have always been able to look after myself, although sometimes with great difficulty and pain.
I want to raise awareness of people like me, the people who are just well enough to be independent but ill enough to lead a highly restricted and uncomfortable life. For me, ME is not just a list of symptoms [as given above], it is what it has done to my life. I can still study and I could probably work part time, but I cannot take energy for granted. I have to measure my energy out in spoonfuls. If I take too much, I suffer more, but I always want to take more.”
From ME/CFS Awareness Day – James
“I NEVER wake up feeling good. Every day I wake up feeling like I have a viral hang-over. I always have some kind of illness type headache, you know the kind you get when you are coming down with something, I ache all over, somedays more than others, but it is always there and I cannot eat in the morning because I feel so sick. I do not have good sleep and often wake up gasping for breath, not like an asthma type inability to breath but like my throat has closed up or I have been strangled – I think my muscles in my throat are that weak that they just relax to the point of closing.”
From My M.E. Week – Beauty
“If you see me looking well – which I do when I’m in public, most of the time;
or see me getting to the supermarket – which I do some of the time;
or if you have a conversation with me and I’m upbeat – which I try damn hard to be all of the time;
you cannot be expected to understand the reality.
I have tried to be a bit more explicit, but when I mention how exhausted I am – you might say, oh yes I’m tired too…”
“To argue that my exhaustion is so deep it is like a coat of lead that I wear 24 hours a day – that prevents me getting out of bed, that means I hurt to wash my hair and hang out my washing because my arms have to be held up, that means I pant after going up the stairs and need a rest after washing, then after dressing, then after eating my breakfast…
To explain that it is hard to get things done because my brain doesn’t work properly any more. You know how you feel when you’re hung over? Like your head is full of wool and your body is poisoned? That is my normal state. I forget things that used to be second nature. I struggle to make a cup of tea if you’re talking to me, to hold a conversation without losing my thread, to write a blog without wanting to smash the computer because I keep getting words wrong, to run a bath without putting the wrong tap on and flooding the house, to put toothpaste on the brush and not Veet.”
From My ME – Ros
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