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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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 2 months ago* (last edited 2 months ago) by [email protected] to c/chronicillness
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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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[–] De_Narm 12 points 2 months ago* (last edited 2 months ago) (1 children)

Now, I can't give you actual advice, if this is something that's constantly bothering you, you might want to speak to a therapist. What I can offer is my perspective - however, you might want to know beforehand that I'm not chronically ill. I had medical issues which weighed on me quite a bit, but those turned out to be resolvable after about 2 years.

I don't think live has any grand purpose and you'll never be content if you try to chase one either. There is no point in waiting for something that may never come. The best thing you can do is to find things you enjoy and maximize whatever you can get out of live. Try lots of different things within your means, visit places and meet new people. The worst thing you can do, from personal experience, is to repeat the same things every day. Your days blur together and there is no meaning to be found in them.

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

That sounds like good advice

[–] [email protected] 9 points 2 months ago (1 children)

I don't really know how I handle it. I'm bedridden, leaving it only for my number two. I guess my wife and kids telling me that they love me keeps me going. And sometimes there are funny videos on YouTube.

Today's my birthday and one if my friends donating to https://mecfs-research.org/ for me brought me to tears. So I guess I still have hope.

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

Thank you for sharing with me. Happy Birthday, and may your loved ones fill your heart with joy.

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

Hang in there!

[–] [email protected] 5 points 2 months ago* (last edited 2 months ago) (1 children)

Hey fellow sickie!

I feel this post. I'm also chronically ill and it limits the amount and types of activity I can do. No heavy (or even moderately medium) lifting, I need tons of sleep, I can't push myself too hard, etc. This pushes a ton of work onto my wife and it sucks.

My advice is to do what you can, when you can, and never give up trying for more, even if it's just the barest sliver of improvement. Let me break some stuff down. I know you won't be able to do some of these things (maybe you can later), but this was my journey.

My diagnosis (Ehlers-Danlos syndrome and mast cell activation disorder) took almost a year of seeing seemingly endless doctors, but I eventually figured out what I have. It took another year of more pointed doctor shopping to find one that was both intelligent and knowledgeable enough to handle it. A diagnosis is key - you can't treat something if you don't know what it is.

All the while, I did physical therapy exercises, improved my diet, and tried to be as healthy as possible. When I started, I couldn't lift more than a pound or two with either arm without being in excruciating pain later. Four years later, I can lift about eight pounds with either arm a few times, or light items many times. I've learned to use speech recognition and head/eye tracking for computer usage. It's all small, but for me it's huge. I can drive a car, brush my own teeth, and pick up my cat without too much pain. I'll keep doing my exercises and gradually improving, it just takes dedication and a lot of time, and it's frequently unpleasant. The key for me was finding how far I could push myself before I pushed too far.

I've learned to make sure my wife has ample opportunities to tell me about her thoughts and feelings. We do what we can together, even if that's me staying awake through part of a movie with her. It's the thought and effort that counts most: I do what I can, when I can, and I just keep doing it. It's not perfect and it's definitely not what either of us deserves, but it's enough because we keep trying and we're working on it together.

It's all small improvements, but it builds up with time. At the rate I'm going, I might even be close to normal function for my age by the time I die!

[–] [email protected] 4 points 2 months 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 months 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 months ago

Thank you so much, I'm paying attention

[–] sturlabragason 4 points 2 months ago* (last edited 2 months ago) (1 children)

https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490 ?

Don’t let it get to you! You are probably awesome. Hopefully you will get better!

[–] ShunkW 8 points 2 months ago (1 children)

Also you should know that there are other diseases that can cause similar symptoms. I have mixed connective tissue disease. It causes me to have tremors, sleep constantly, and my biceps and calves hurt intensely after a little effort. It's debilitating. It took me a year to get diagnosed.

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

I'm not convinced that I don't have a connective tissue disorder. It sounds so much exactly like what I deal with, but I have been told that I don't have one. I've been told "maybe ME/CFS", but that doesn't explain all of my symptoms, particularly the most debilitating--the muscle fatigue and pain.

[–] 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)

That's really beautiful

[–] 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.

[–] Olgratin_Magmatoe 3 points 1 month ago (1 children)

My girlfriend and I are in a similar boat, but she is the one that is chronically ill. So I can say from the caregiver's side of things, it isn't a problem. I'm happy to help make sure my girlfriend is able to get through the day, and I don't see her as a burden.

I'm sure you've already talked to your wife about it, but if you haven't you absolutely should. There is no guarantee that they see you as a burden.

I hope the feelings you're experiencing get better.

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

We do talk a lot and she, like you, is a caring partner who loves me and doesn't see me as a burden. She is also transparent about how hard it is at times. It's strange to comfort her over something that is caused by a problem I have.

So much conflicting emotion.