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 healthy people to share their opinions on disability.

Rules

Be excellent to each other
Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc
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.
No denialism or minimisation This applies challenges faced by chronically ill people.
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”.
Respect the Group’s Purpose. It’s a support forum for people with chronic illness to vent and share and talk together. It’s not a place for healthy people to come and give their opinions.

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.

founded 2 years ago

MODERATORS

mecfs@lemmy.world

graphito@sopuli.xyz

FundMECFSResearch@lemmy.blahaj.zone

ShareMySims@sh.itjust.works

ShareMySims@lemmy.dbzer0.com

Venting about chronic pain (sh.itjust.works)

submitted 7 months ago by replicator@sh.itjust.works to c/chronicillness@lemmy.world

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I am disabled. It's fibromyalgia.

For the last god knows how long this has been going on, I wasn't able to move. If it's not my chronic pain, then it's my depression, and when they work together, well, let's just say that one of the pastimes that has been forced upon me is just fucking existing. Like a void where the only thing you could do is feel pain, and all of the fucking physical needs that your body needs, food, water, going to the toilet, warmth, etc. Woke up today, couldn't do anything decided to go to sleep. Slept a lot, which is like, hey! I can sleep now! With the help of fucking anti depressants!!! On the other hand, now that I can sleep, I don't have the only reason that kept me functioning for so long, fucking adrenaline. The only thing that made me able to get up, walk, eat, and shit, was motherfucking adrenaline. So after I woke up, I couldn't move, was very fucking hungry, somehow managed to find the energy to make breakfast after arguing with my family, then I went back to my room, and I just laid down. Laid down for maybe 4 or 5 hours, then tried to get up and realized that oh no! I can't fucking move, apparently. And the only fucking reason that I am here, typing this, through the pain, is pure fucking rage and spite. That's how I got up. I thought of something, it made me very angry, and I jolted out of bed.

And so on the topic of suicide,

I don't even. I might just kill myself in spite of everyone. EXCEPT THAT WON'T FUCKING MATTER, NOBODY FUCKING CARES IF I LIVED OR DIED. NO ONE. So I have always thought about making it a spectacle by setting myself on fire or something. But I'm way too fucking tired and paralyzed to do any of that. So no, I won't kill myself. But you bet that I'm considering it

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[–] Eeyore_Syndrome@sh.itjust.works 5 points 7 months ago (2 children)

Fibro fucking sucks. I'm on year 7 of being diagnosed.

And no, time didn't make anything better.

More like I just grieve the life I used to have/will never have again.

Out of 7 days a week, I have maybe 1/3 of a "good day" now.

[–] replicator@sh.itjust.works 3 points 7 months ago

God that's so fucking true. I believe I'm on year 2, and for a long while I didn't get any help for it. It is only recently that I looked into getting help, mainly medication. The anti depressants did something alright, but the pain is still there, pulsing. Yeah truly 1/3 of a good day, the rest is just a makeshift haphazard duct tape operation of trying not to fully lose it, at least that's for me.

[–] replicator@sh.itjust.works 2 points 7 months ago

About grieving the life that you used to have/will never have. I got this at a pretty young age, so I don't really, I guess I miss being able to run. And sleeping and having most of the pain being gone. Ah yes, the grief, it's still there....

[–] clove@kbin.melroy.org 5 points 7 months ago (1 children)

The horrors persist, but so you do. Continue to exist to spite the universe, if nothing else. <3

[–] replicator@sh.itjust.works 4 points 7 months ago* (last edited 7 months ago)

an angry emoji showing it's teeth and frothing. It looks feral

[–] guaraguaito@lemmy.blahaj.zone 2 points 7 months ago (1 children)

Sending hugs my friend. Chronic Pain is absolutely awful and the societal/medical indifference and gaslighting compound already enormous suffering.

I hear you. It sucks. 🫂

[–] replicator@sh.itjust.works 1 points 6 months ago

Thank you 🫂, even though I'm 9 days late. I still needed this today.

[–] Zarobi@aussie.zone 0 points 1 month ago

I know this is a late reply but I just found this community.

I've had severe chronic pain, along with many other issues, most my life. When I was 8, I got sick, and everything went to shit; so I was just old enough to remember what it was like before.

I had multiple mental breakdowns throughout the years. No drugs help, talking about it didn't help, nothing helped. Not going to lie it got pretty dark at times, the weight of all that pain and knowing it'll never end for my entire life. It's not something humans are designed to endure.

But one day, after 20 straight years of pain, my brain gave me mercy. Suddenly, I lost about 50% sensation in my whole body. Doctors said it's like a "noise gate" my nervous system put in after so long.

It has it's pros and cons of course. I burn myself a lot, get heat stress often, don't notice injuries, and get hypothermia a lot. But honestly it probably saved my life. The pain went from a 6/10 constant to a 3/10. I see it as a blessing.

I think the signals are still "there" in the background. I notice tension in my body from my parts reacting physiologically to the nerves, but they don't affect me as much anymore. It still sucks but it's survivable.