Chronic Illness

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A community for chronically ill people.

Rules

Be excellent to each other
Absolutely no ableism, although good faith questions that take an ableist stance will be left up pending moderator discretion.
No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.

founded 2 months ago

MODERATORS

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How do folks here handle the feeling that they're just waiting, not serving a purpose, and being a burden on their family as well. (lemmy.dbzer0.com)

submitted 3 days ago* (last edited 3 days ago) by [email protected] to c/[email protected]

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I wake up, I eat, I read a little, I go back to sleep. I wake up, I eat, I read a little, watch a show with my wife, go back to sleep. I try not to eat more than 1500 calories because my activity level is so low I'll get fat if I go above that.

What's the end game here?

EDIT, FOR CLARITY:

I can't work. I need to sleep like 14 hours a day. I'm exhausted all the time. I get fatigued after about 5 to 10 minutes worth of any labor, including things like going upstairs or loading a dishwasher. My hands shake all the time, to where I can almost not clip my own fingernails anymore.

I work a job for years and retired from it there's plenty of money coming in. I just find myself in a place now where this chronic, undefined illness has taken over my life.

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[–] [email protected] 4 points 2 days ago (1 children)

Good stuff, and very positive! I'm sure the diagnosis is key. I've got nothing except what it isn't so far, and I know if it's long COVID then it's bad if I exercise so I'm holding off.

[–] [email protected] 5 points 2 days ago (1 children)

Obligatory not a doctor but, if it's long COVID or you suspect it's long COVID, look into mast cell activation disorders. They're often triggered by an illness or injury - mine was triggered by a massively stressful situation combined with getting COVID. Anecdotal, but every person I've personally known who has 'long COVID' ended up being ultimately diagnosed with MCAD once they saw a knowledgeable doctor and their symptoms markedly improved after treating it as such.

If you ever have any questions or need anything, feel free to drop me a message. We all have to stick together!

[–] [email protected] 3 points 2 days ago

Thank you so much, I'm paying attention