What is an engaging, informative, short, accurate description for ME/CFS?

EzzieD · Dec 23, 2020

Colin said: ↑

Or to a driving enthusiast: Imagine driving down a country road on a sunny day in a Maserati convertible with the wind in your hair and then running out of fuel... Imagine having to get out and push the vehicle down the road and then up an increasingly-steep slope while yahoos in Ford Escorts and yokels on tractors drive by giving you rasberries. The more you push, the worse you feel so you stop by the road and collapse in the dirt looking up at the shiny sports car that should be whisking one away to faraway fields, which is now only a heavy burden. Is there even a gararge up the road where there is fuel? You don't even know.
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LOL, love this!! (I am, well was, before illness, a classic car enthusiast, so can relate!)

Ravn said: ↑

Actually, this may not have the expected effect. I tried that phrase out on some friends and a few of them interpreted it as positive. As in "I was living this horribly rushed and stressed life and then the illness gave me a chance to turn my life around and now I'm so much happier". Aargh!
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Yes, life-changing will most likely have not the desired effect. Life-destroying, more accurate.

Trish said: ↑

ME/CFS makes you feel like you've got the flu all the time. There is very little energy for daily activities, and energy runs out really fast, so you have to keep stopping and resting. You can't exercise yourself better, the more you do, the sicker you get.
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This, 100%. The way I explain it to others is 'flu-like': "Imagine the worst flu you ever had, one that forced you to go to bed and stay there, feeling really rough and horrible and sick and weird all over. Now multiply it 1000 times. That's ME!" They usually at least sort of get the idea, and are equally usually shocked that it's not just 'tiredness' as the popular press and a certain group of UK psychiatrists and their chums would have one believe.

Mij · Dec 23, 2020

Ravn said: ↑

Actually, this may not have the expected effect. I tried that phrase out on some friends and a few of them interpreted it as positive. As in "I was living this horribly rushed and stressed life and then the illness gave me a chance to turn my life around and now I'm so much happier". Aargh!
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I've tried various expressions, but they're all opened to interpretation. It's truly incredible how friends and family want to hear what they want to hear- that you're getting better.

MeSci · Dec 23, 2020

Mij said: ↑

I've tried various expressions, but they're all opened to interpretation. It's truly incredible how friends and family want to hear what they want to hear- that you're getting better.
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Yes - I get so tired of Xmas cards saying "hope you're well."

No I am bl**dy not!

Trish · Dec 23, 2020

RoseE said: ↑

some people say it doesn't feel like they have the flu?
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I was thinking that as I wrote it. It makes me feel ill all the time. I understand that's not true for everyone. Hmm.

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What is an engaging, informative, short, accurate description for ME/CFS?

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What is an engaging, informative, short, accurate description for ME/CFS?

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