#“chronic pain”

[weirdo-with-a-nametag]

I've always had trouble falling asleep, and it used to just make me sad, I'd lie in bed in despair or get up to exercise and just be glum the whole time. Now it's making me angry. I'm frustrated and like mad at the world because I need sleep and can't get any

I want to find the helpful parts of anger, it's heavily associated with parts of my life that I don't want to recreate but there's got to be something I can use, there. It makes me want to lash out at people and make problems though, so I do have to keep an eye on myself.

It's a sign that this feels like too much, that my needs aren't being met, so that's useful information. But, in this case, that's something I knew? I'm trying to make it happen, take care of myself, I dunno. I guess the anger can be a signal to put more energy into improving my sleep. But it's hard to be patient when I'm this frustrated, and I'm so very low on energy already.

Have a pain clinic appointment (months of waiting after finally getting a referral) tomorrow so I want to remember about how much pain has added to my difficulty sleeping. Maybe the pain doctor will be more helpful for sleep than my pcp has been. Because it's pretty bad right now, and the sleep deprivation and pain feed into each other in that awful way. Sleep meds, pain meds, positions and braces to help my joints be comfortable in bed? That one might be more for a hypermobility specialist, but it's worth asking

Also want to ask the pain doctor about bracing my neck for computer work, and driving with neck/eye/arm/back/hip/knee issues. Positioning plays a huge role, might need lumbar pillow and/or neck brace / something else

[nondivisable]

I need to say something and I need y'all to be calm

if it isn't actively bad or harmful, no representation should be called "too simple" or "too surface level"

I have a whole argument for this about the barbie movie but today I wanna talk about a show called "the babysitters club" on Netflix

(obligatory disclaimer that I watched only two episodes of this show so if it's super problematic I'm sorry) (yes. I know it's based on a book, this is about the show)

this is a silly 8+ show that my 9 year old sister is watching and it manages to tackle so many complex topics in such an easy way. basic premise is these 13 year old girls have a babysitting agency.

in one episode, a girl babysits this transfem kid. the approach is super simple, with the kid saying stuff like "oh no, those are my old boy clothes, these are my girl clothes". they have to go to the doctor and everyone is calling the kid by her dead name and using he/him and this 13 year old snaps at like a group of doctors and they all listen to her. it's pure fantasy and any person versed in trans theory would point out a bunch of mistakes.

but after watching this episode, my little sister started switching to my name instead of my dead name and intercalating he/him pronouns when talking about me.

one of the 13 years old is a diabetic and sometimes her whole personality is taken over by that. but she has this episode where she pushes herself to her limit and passes out and talks about being in a coma for a while because of not recognizing the limits of her disability.

and this allowed my 9 year old sister to understand me better when I say "I really want to play with you but right now my body physically can't do that" (I'm disabled). she has even asked me why I'm pushing myself, why I'm not using my crutches when I complain about pain.

my mom is 50 years old and watching this show with my sister. she said the episode about the diabetic girl helped her understand me and my disability better. she grew up disabled as well, but she was taught to shut up and power through.

yes, silly simple representation can annoy you if you've read thousands of pages about queer liberation or disability radical thought, but sometimes things are not for you.

[wishful-seeker]

I would like to see more people talk about how jobs treat disabled employees.

I used to prep, wash dishes, and cook at mellow mushroom. I had chronic pain that wasn't NEARLY as bad as it is today, but it was still very debilitating. I told my employer "i cannot stand more than 4 to 6 hours. I CANNOT do shifts longer than this due to my illness." And even though i made my boundaries VERY clear, everyday i worked it was 8 hours at the least and 10 or 12 at the most. I would go up to my manager and say "look i really need to leave, my shift is over, my chronic pain is killing me." And he'd say "we really need to here, you HAVE to push through." And so i did, and after one, ONE month of that job my crps got incredibly worse to the point where i could no longer walk my dog around the block which was .5 miles. I quit, and that was FOUR years ago, and ever since that day I HAVE BEEN BEDRIDDEN AND HAVE TO USE A WHEELCHAIR. It is my biggest regret in life.

My best friend who has seen my whole journey has recently developed undiagnosed chronic pain, and she is in the EXACT same scenario i was 4 years ago. Busting her ass at a pizza place with extreme pain that hurts her so much she tells me "im in so much pain i don't even feel like a person." She doesn't feel LUCID. And her manager and coworkers are saying the same thing "if you don't help us you will let us down, we'll be in the shit."

That job thats hurting you isn't fucking worth it. I promise you no money is worth losing all your physical abilities and never getting them back. Your coworkers and boss do not give a shit about you, so don't you dare suffer for them. They will never understand your struggle and they will never try. They truly think being understaffed is worse than whatever pain you experience. They would rather you permanently damage yourself than inconvenience them. FUCK THEM. DON'T FUCKING DO IT!

[i-say-stupid-things]

what is it with able bodied people saying “get well soon” after you say that you’re chronically ill?? like? i am not gonna? and i once literally responded with “i’m not gonna, it’s chronic, as in permanent.” and they went like “oh well, hope you get better!” like bro 💀

[bl0w-m3]

[pleaseletmeexist]

When I say “school should be disability accessible”, I don’t just mean we need handicap rails and EAs. Kids should be able to miss a day without failing out of school. You shouldn’t be dismissed from clubs because your attendance record is “spotty” (true story). I once missed an entire week of school because of a terrible, unending migraine. I was expected to keep up with my studies despite the blinding pain that came with working on my computer. When I heard my teachers say that you couldn’t miss exams, I asked what I would have to do to be excused from them. Their response? “Either get a doctor’s note an hour before the exam or death of an immediate family member.”

I cannot express how rigid this expectation was. First of all, with my condition, I wouldn’t have enough warning about my sickness to go to the doctor and request a note. For many people, this is exceptionally difficult, especially with the current shortage of medical professionals. Next, it ignores the fact that my schedule may not line with theirs because of my medical needs. Once, I had to visit a hospital a province away (which I was on the waiting list of for over a year) on the same day as an exam. I begged my mother not to take me because I was so nervous that I would be marked as an automatic fail. I was lucky enough to make it work, but that’s only because of my spectacular support system consisting of family members and wonderful doctors.

Disabilities aren’t always about needing a bus that can accommodate wheelchairs. It’s already difficult enough for many of us to maintain school attendance without the harsh punishments involved for skipping a day. We need to be able to miss school without being punished. Only than can you claim that the school is “accessible”

[lupusbaby]

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

[bee-fox]

I think that it's really important for people to realize that being disabled is traumatic. genuinely. your body and brain feel like they are breaking down and wrong. you are in constant heavy stress from stuff like chronic pain. most disabled people i know have a somewhat regular emotional break down from the trauma of it all. and we are expected to just smile through it by society, to not be in the way, to not be an issue.

[celeste-tyrrell]

is it really true that the average person's pain level is a 0?

[purrfurnax]

[owlmylove]

the flesh is unwilling and honestly, the spirit isn't too keen on the idea either

[chronicillnesshumor]

[take-a-dip-in-the-deadpool]

THIS!!

THIS IS AN AMAZING WAY TO THINK OF CHRONIC PAIN

[thedisablednaturalist]

Kinda fucked up that we all coo and sympathize with "former gifted kids" but never talk about the students who had to stay late after school or over the summer for remedial classes/clubs, who struggled to get above a C, who were given up on or punished. Who tried so hard to understand or just couldn't. Who were grouped with the "stupid kids" (a classmate called us that in remedial math btw)

Autistic kids and adhders who can't relate to their gifted peers and are constantly alienated by them. Kids who struggled in school due to dealing with a chronic or mental illness or physical/learning/developmental disability. Those of us who have had to drop out of highschool or college. Kids who worked so hard and wanted to be seen as smart, but never were. Who watched as their peers seem to fly by them in school, while they were left behind. Who were bullied and put down by those in the gifted and honors classes. Whose confidence was absolutely destroyed by education.

I love you all and I'm so sorry the school system failed you. I'm sorry you weren't properly accommodated and given the education you deserved. I'm sorry people put you down for something that they never had to fight for.

[post-grammatic-stress]

If you've ever told a person who's had to be bedbound for a period of time that you wish you could "just stay in bed", DO IT.

Stay in bed. For days. But don't get up if someone needs you to, or you get bored, or you get antsy. Don't do anything other than rest. Just lie in your bed, whether you need to get stuff done around the house or socialize or anything else "productive". You'll have to cancel on people, you'll disappoint them, they won't understand.

And if you're thinking, "well, i CAN'T just be in bed. There's stuff that has to be done - I have plans", maybe ask yourself why you assumed a disabled person doesn't have plans or things to do or desires.