this post was submitted on 30 Sep 2024
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Chronic Illness

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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.

This is a support group, not a place for people to spout their opinions on disability.

Rules

  1. Be excellent to each other

  2. Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc

  3. 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.

  4. No denialism or minimisation This applies challenges faced by chronically ill people.

  5. No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.

Did your post/comment get removed? Before arguing with moderators consider that the goal of this community is to provide a safe space for people suffering from chronic illness. Moderation may be heavy handed at times. If you don’t like that, find or create another community that prioritises something else.

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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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[–] LouNeko 4 points 2 months ago (1 children)

I'd say people run around their whole life chasing peace. Having the time to 'just wait' is the contrast to the 'stress' people experience in heir daily lives. A guy I know recently said 'Work gives us purpose', since you're retired you have served yours and can now peacefully enjoy your free time. I'm not I'll, but I sleep a lot too. Sleep is by far my favorite thing.

If your body is failing there's plenty for your mind to do. Mental exercise burns almost equal amounts of calories compared to physical. Learn something new, do puzzles, do inverse Laplace Transformations, do the taxes, do whatever is mentally stimulating. If you read a lot, and dream a lot, then maybe you should start writing.

There's a difference between being a burden and accepting help. Helping each other is what makes us human. Arguably the first sign of human society was a prehistoric humanoid skeleton with a healed broken leg. If you feel like a burden, try to to quantify why? Are you asking for to much assistance? Are you asking too often for it? You can set clear boundaries with your family on how much assistance you feel comfortable accepting, and how much you actually need.

The end game? You've already reached it, now you can do what ever you want and are capable of. Nobody expects you to work in your condition. The young and healthy work so that the ill can deal with their struggles. That's what the whole 'No man left behind' attitude is all about.

[–] [email protected] 2 points 2 months ago (1 children)
[–] LouNeko 3 points 2 months ago (1 children)

I recently got surgery and during my healing period I felt severely disabled. I was in constant pain and had severely reduced mobility. Of course nobody expected me to do any heavy lifting or work. But what made me happy was doing small things nonetheless that weren't expected of me that helped others. For example I was obviously the last one to leave the bed in the morning. But I would still try to straighten out the bedsheets, puff out the pillows and open the window to let some fresh air in. There are small simple things one can do around the house that in sum amount to a lot. Most people rather do the big chores all at once but neglect small but constant maintenance. If somebody could keep up with the small stuff, others would likely very much appreciate it.

[–] [email protected] 1 points 2 months ago

Another really good one. You seem like a wise person.