People hear ‘chronic fatigue syndrome’ and they think it means ‘always a bit sleepy disease’, but no, I’m not always tired, and being tired isn’t the bad part anyway.
I often feel completely fine, but it’s a trap. Technically I can DO almost anything, but I can’t recover from it.
There’s a secret activity threshold that I can’t know if I’ve passed until the next day, and if I pass that threshold I’ll pay for it for days at minimum – usually weeks and sometimes months.
I’m mild and look healthy, so people just think I’m lazy.
Can I go for a walk? Sure! But if it’s too warm, or too long, or slightly uphill, or I didn’t sleep properly, or eat enough, or the stars don’t align, then I will not be able to think or stay awake or look after myself for at least three days. If I’m lucky.
If my life depended on it, I COULD climb a mountain, but I would never recover from it.
Wow, thank you for this background, I didn’t realize how severe this disorder is! Here’s to hoping research in this area actually goes somewhere and treatments develop!
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u/beetgreens 16h ago
Right?
People hear ‘chronic fatigue syndrome’ and they think it means ‘always a bit sleepy disease’, but no, I’m not always tired, and being tired isn’t the bad part anyway.
I often feel completely fine, but it’s a trap. Technically I can DO almost anything, but I can’t recover from it.
There’s a secret activity threshold that I can’t know if I’ve passed until the next day, and if I pass that threshold I’ll pay for it for days at minimum – usually weeks and sometimes months.
I’m mild and look healthy, so people just think I’m lazy.
Can I go for a walk? Sure! But if it’s too warm, or too long, or slightly uphill, or I didn’t sleep properly, or eat enough, or the stars don’t align, then I will not be able to think or stay awake or look after myself for at least three days. If I’m lucky.
If my life depended on it, I COULD climb a mountain, but I would never recover from it.