#fibromyalgia stuff

[rhiandoesfandom]

Fibromyalgia is so ridiculous.

What do you mean the name just means "muscle hurt"

What do you mean the pain is worse when it rains

What do you mean its a whole body systematic thing that half of doctors think is make believe.

What do you mean my body is so tired I could sleep for ten years.

[xxpunkbovidxx]

I believe having a cane has improved my quality of life by miles already and I've only had it for a day or two, who knows what a wheelchair would do for me

I may have to graduate from a cane to forearm crutches though, I put too much weight on it

[disabled-bug]

I’m so proud of people living with chronic health conditions. That shit is HARD. Idk who needs to hear this, but if no one else has said it: I’m proud of you. You’re sticking it out through so much pain and grief. That’s no small feat.

Every small thing you do for yourself health adds up. The grief is heavy and it comes from a place of love. The grief knows the pain is wronging you.

I’m proud of you. I hope on the good days you can be proud of yourself.

Keep going.

[kittycommitte]

@spoonie-living

[hexcii]

Me when my disability does indeed make me disabled: by talos this can’t be happening

[insidestory1]

I want to live in a world where people are treated as valuable just for existing. I'm tired of this society where there's a list of things a person has to do or be in order to be considered worthwhile, and those of us who can't tick all the boxes on it are made to feel like there's something wrong with us. People don't have to be SOMETHING in order to matter. They just have to be. It doesn't matter if you're not able to work. It doesn't matter if you need help with daily living. It doesn't matter if socialising is difficult for you. It doesn't matter if you can't speak. It doesn't matter if you can't control your body. Non of these things have anything to do with how much you are worth. People are worthwhile just because they exist.

[hellyeahsickaf]

The way addicts and chronically ill people are dehumanized is so exhausting

The normalization of this shit in medical and casual settings is genuinely mind boggling. Addicts and disabled people go through so much bullshit. I've dealt with many fucked up doctors when I just needed help

I had a kidney infection, some months back. This is always extremely medically urgent, and I was likely only hours from sepsis. I went to the hospital reporting my pain to be a 9/10. 9 because my 10 was gallstones. I experienced severe malpractice at the hospital and the doctor reported exams that never occured and false information while making me wait with nothing more than tylenol to hold me over (didn't touch the pain) and bring my fever down but that's a whole other story

They did however, deny me the pain medication I needed until it was time to go home. I'm deathly allergic to NSAIDS, but that's something an addict might say so they witheld pain relief because they'd rather me suffer just in case I'm a different kind of sick. An entire night, maybe 6 hours in the ER and they couldn't give me anything, not a small dose of morphine or one norco even a few hours prior to take the edge off of the pain while I was curled up shaking and crying. Just in case I was an addict looking for my fix, and my suffering was just withdrawals and good acting. In that case maybe I deserved it and should be denied my humanity. God forbid in that case I'm so desperate to alleviate unbearable withdrawals that I spend all night in the ER crying. Not the first time I've experienced red tape just to get relief from excruciating pain

But whatever. As per protocol I was asked to follow up with my pcp. So a few days later I called to set an appointment, but I'd also run out of norco and desperate to relieve the pain I asked if I could be filled even enough for a few days, until the pain was bearable. I had difficulty walking, laying down, and I again, can't take most pain relievers. The receptionist was nice and understanding, actually got me in touch with the doctor because she wanted me to be able to get my refill. Probably heard the pain in my voice even. She believed me

She transfers me over to the doctor and I tell him I'd like a follow up and ask if he could fill my painkillers. I would've acceped a no from him, I just needed my follow up. He asked about my condition, I told him my diagnosis and how much pain I was in

And he laughed.

Got a real hoot out of it, like he had me all figured out. Like he caught me trying to cheat the system. I must be trying to get high or make some money with a few days worth of norco as i'm nearly in tears from the pain even while calling

He tells me through his laughter "I don't prescribe painkillers for 'kidney infections'" saying it with a mocking emphasis on those words, as if I'd said "stubbed toe". Follows with "Yeah haha, bye." and hangs up on me. No follow up like I called for. Needless to say I no longer have a pcp but truly if he thought I was an addict trying to take advantage of him he should have still treated me professionally. Maybe not cackled when I said my pain was excruciating for a start

I just don't understand why the hell so many doctors can be so apathetic to people's suffering. Addicts deserve better and so do disabled people- whether you think they're addicts or not. The assumption that we're lying, trying to trick them and are feigning pain to do it is disgusting, listening to your patients is so important. And if that were the case they could have some sympathy and ask themselves what it would take for someone to go those lengths, take such drastic measures and go through that trouble to obtain those substances.

Addiction is not a moral failing. Many disabled and chronically ill people unfortunately rely on medications that have addictive properties. About 80% of heroin addicts first misused prescription drugs. However only about 4-6% of those addicted to prescription drugs switch to things like heroin. And instead of help or compassion for people who just need help (addicts or not), they just figure we're one in the same and treat us like subhuman degenerates, leeches on society. And I think people need to change how they view addiction. Doctors need to change how they view addiction

[chronically-izzzzle]

[uhbasicallyjustmilex]

ughhhh i try not to vent too much on here about irl stuff because i like keeping it as a safe little space for escapism, but i need somewhere to get this out bc i’m SO FRUSTRATED right now. basically as a result of my various chronic pain conditions (endometriosis, fibromyalgia), having a normal working career has been very challenging for me. over the years i have worked unbelievably hard and sacrificed so much to get through uni, train as a counsellor, hold down various part time jobs etc.

when i got offered my dream job to work for a mental health charity a couple years back, i was over the moon. it was everything i'd wanted and it ended up being even better than i could have hoped for. only i caught covid while working there and my health deteriorated massively. like to the point where i couldn't even cook food for myself or get out of bed, and was consistently in some of the worst pain i've been in my whole life (which oh boy. is really saying something for me). it was genuinely terrifying and it became rapidly impossible to convince myself or anyone else i was capable of continuing my job, so i had to hand in my notice. it honestly still hurts to think about.

for the last year and a half, i have been slowly recovering and have finally got to a place where i'm feeling much better in myself. realising that 9-5 work is probably going to be beyond me for years to come, i decided i wanted to explore more flexible working and got a place on a course to train as a somatic massage therapist. this is something i've been interested in for years, and i was absolutely over the moon to get accepted to study it. it was advertised as being two teaching days per month, plus two extra days of practise. and i was like perfect, this is a schedule that actually feels really achievable for me. i was so excited to get started and to do something that felt genuinely manageable for me. and then today we got sent the list of the course dates. they're two days in a row each month, and EVERY SINGLE ONE is the same date each month that my fucking period is due on.

as someone with endometriosis, doing anything (and i mean anything. i literally cannot move from my bed and regularly pass out from the pain) on the first couple days of my period is impossible. i can't even fucking shower or eat without help on those first two days of my period, let alone get a bus across town and do a 9-5 study day. and i'm just so, so frustrated because if the course dates were on literally any other days in the month, i would be fine. i could do it, learn fascinating new skills and meet people and get a qualification that would allow me to work independently and help people. but i can't, because i'm going to be stuck in bed or on the goddamn floor in agony from something that isn't my fault but which i still have to live with for the rest of my life. and i'm so so tired of it. this course i was so excited about is going to become yet another thing i'm going to have to back out of, and it's just so exhausting to find myself trapped back in this spiral every time i think i'm getting out. i try to hold onto hope that things will shift and that there will be ways i can meaningfully contribute in society and participate in my own life, but it honestly gets harder and harder to believe that will ever be true.

[cryptid-stuff]

Was SUPER not happy with my zeph design, amd they're a very special ghoul to me so I felt like I had to do them justice!!

This was also admittedly I tiny bit? Of a vent art? Obviously it doesn't outwardly look like that, but my health has been. Not great! And I'm not gonna get into it much here (if you wanna know for some reason, I ramble a lot on my main lmao)"but drawing a character I like with mobility aids was. Cathartic in a way :]

[vind3miat0r]

do you guys think Avior developed some sort of chronic pain after Hush ripped himself out of Avior's being

[rhiandoesfandom]

"at least it's not a disease that progresses"

I'm sorry, actually, I'm not. What the fuck kind of 'encouragement' is that?

Not to mention I'm already in an immense amount of pain from my CHRONIC PAIN SYNDROME that is literally designed to just give me pain.

"oh but it's not actually damaging your muscles and joints"

Fuck off. Fuck all the way off. I am in pain ALL OF THE TIME. And that is valid damnit.

[after-nine-at-the-oasis]

Happy disability pride month to people with pain disorders :)

Be that CRPS, AMPS, fibromyalgia, or anything else :). Your pain is real, and you are not alone <3

[disabled-bug]

Reminder at all, someone with a disability/chronic illness might be capable of completely different levels of activity from day to day. You can’t hold yourself or others to the best version of the physical self every single day. That goes for able bodied people too! Energy levels fluctuate, and for people with a disability/chronic illness that difference will be even more extreme.

Be patient. Be gentle with yourself and others.

Just because the other day you did a workout, went grocery shopping, and/or washed your hair, it doesn’t mean you’re less valuable today while you’re stuck in bed.

Be kind to yourself.

[kittycommitte]

[melodymorningdew]

If I hear someone tell an autistic person to read the room one more time... 🙃

Not everyone has an iOS brain some of us gotta deal with a Motorola for a prefrontal cortex.

CANT DOWNLOAD YOUR STUPID BODY LANGUAGE SOFTWARE. PLAYSTORE DONT HAVE ITalright I've taken the metaphor too far.