#you do not have to be miserable to be disabled

[crippledpunks]

chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

#chronic fatigue #fatigue #cfs #cfsme #cfs/me #myalgic encephalomyelitis #chronic fatigue syndrome #actually disabled #chronic pain #disability culture #cripple punk #fibromyalgia #crip punk #cripplepunk #cpunk #disability rights #disability advocacy #chronic illness #chronically ill #depession #adhd #autism #neurodivergence #neurodiverse #neurodivergent #schizophrenia #arthritis #cancer #diabetes #diabetic

[bebsi-cola]

people are constantly trying to deny disabled people the privilege of their own anger. we're forced into situations we don't want to be in have to rely on people or institutions we don't want to, have to constantly project the idea that we're thankful, hopeful, trying our best... it's ridiculous. when a disabled person is angry about something people flock to tell them that they shouldn't feel this emotion. "doctors are trying to help you", "be grateful you even have what you do", "you're the one making yourself miserable". at the end of the day it just goes to show that they don't think disabled people deserve even the meagre amount that we are given, so that's why they think we have no right to be angry

#bebsi posting #disability #physically disabled #cripple punk #chronic illness

[matchakuracat]

chronically ill/physically disabled people, how do you deal with doctors appointments? what do you say/do to advocate for yourself? im autistic and not diagnosed with a chronic illness yet and i really struggle to know what to say to get them to listen to me and understand so that i can get the help and care i need. even if i bring someone with me, they also need to know what to say and i don't know anyone who understands well enough to explain to the doctor for me, which means that i have to tell them what to say before going. but that's the problem since i just don't know.

i have chronic joint pain that ive had for years but has only gotten worse over time. i also have hypermobile knees which are the worse they've ever been right now. i'm chronically fatigued and barely have the energy to eat and do basic hygiene. i have a few friends that i talk to fairly regularly and im very thankful for them but i still struggle so much with maintaining a social life when i cant even maintain my own physical wellbeing. i only go outside when i absolutely have to/when my pain is low enough and i have enough energy. on average i probably leave my house about once or twice a week, usually to go to medical appointments, to an internship i have once a week or to go grocery shopping. i usually try to do both at the same time if i can (like going grocery shopping after my internship) but most of the time i have to ask my parents to get me groceries since i dont have enough energy to. all i want is to be able to go outside just to take short walks and enjoy nature and the fresh air but i can't do so without the right treatment/a mobility aid. everything im doing right now is bordering the line of too much. im constantly tired and overwhelmed and everything feels like a struggle, even the smallest tasks most people do everyday without thinking twice about it.

i have almost only had bad experiences with doctors and other medical professionals like physiotherapists, which has given me a lot of extra anxiety on top of my already pretty bad social anxiety. i really struggle to make appointments and even more so to go to them, and when i bring myself to do so i really struggle to express myself and explain how i feel and how i want them to help me. i almost always get shut down and offered no actual help with any of my problems. i just don't know what to do anymore.

if anyone has any advice i'd really appreciate it. i know that i can't give up because my life right now without accommodations is too miserable, but i also don't know how to move forward.

sorry if this was hard to understand. i really tried my best to explain but im having a bit of a hard time expressing myself right now due to feeling worse than usual.

#chronically ill #chronic illness #autistic #actually autistic #physical disability #physically disabled #mentally and physically tired #chronic illnesses #chronic pain #chronic fatigue #undiagnosed chronic illness #undiagnosed chronic pain #cripplepunk #crip punk #cripple punk #chronic illness rant #disabled #actually disabled #disabled rant #mobility aid #mobility aids #medical gaslighting #doctors appointment

[batwynn]

Alt text:

It’s ok to be disabled and happy. Being disabled does not mean you have to constantly suffer.

#disability #disability positivity #disability rights #disability justice #it’s also ok to NOT be happy #like you don’t have to perform happiness for other people’s comfort #but if you’re disabled and feeling good about yourself? #that’s really ok #you deserve happiness and people expecting you to be unhappy because you’re disabled #are shitheads #you do not have to be miserable to be disabled #and you don’t have to be happy to exist in society #two things existing at once #♥️ #tw: animal #tw: bird

[yourheartinyourmouth]

googling “jobs for gay idiot adhd losers who can’t do math and have no skills and have never been able to mentally and emotionally handle the responsibility of being employed” weirdly didn’t bring back any results???????????

#adhd #hi i have adhd i sound intelligent bc i have surface level knowledge of many things but actually i am not that good at anything and #while i should qualify as disabled no one but other neurodivergents seems to agree #i suck at Being An Employee and don’t think i should have to do something that makes me Actuvely And Emotionally Miserable #for some reason this makes people BIG MAD #including ppl who aren’t supposed to judge you. like therapists #bc protestant morality is a fucking cancer & society at large is terminal #oh well #guess i’ll die #🤷‍♀️ #i’m not good at anything but society doesn’t have a place for ppl like me #we’re just supposed to fuck off and die i guess

[nonbinarychaoticstupid]

i mentioned this in the tags of another post somewhere but there rly is something so theatre kid core insane in rehearsing les mis and learning how to build a barricade and playing the role of a student in the rebellion at the same time as an awful winter is descending on you and you have no real way of knowing how much money you're going to have left and the coronation of king charles, which will most likely be millions of pounds worth of money spent on watching another racist idiot put a hat on, seems to be a more important use of the government's expenses than feeding and heating the homes of the rest of the country. like idk i really would love to hear the people fucking sing. or something.

#sep texxt #just in case you forgot i'm a theatre kid #another important factor is that at this time i was slowly becoming more and more of an anarcho-communist #its like. pov you're 17 year old me channeling all your rage and leftism into singing fucking one day more in your secondary school + #+ production of les miserables #we could barely even afford to buy the stuff for my costume so i had to borrow like half of it from a friend #i do have some pictures of my costume somewhere actually i did look great #i was also the captain in lovely ladies #and part of the chain gang at the start #and i was in master of the house too as part of the chorus of the inn #so sorry to zaphod and enid who have had to hear me ramble about this for several months straight #and to mercy to whom my rebellion costume looked like that of a confederate soldier #building the barriade (which we did with bits of wooden furniture) was great but awful for my joints g-dbless #<- disabled

[esleep]

explain to me why windows just added an ai chatbot TO MY TASKBAR, in place of my NOTIFICATION VIEW BUTTON which they just straight up removed.

#I AM GOING TO KILL AND MURDER #every single established tech company is in competition to make their product as miserable to use as possible. #microsoft and apple especially are in a neck-and-neck race to the bottom. #i figured out how to disable it immediately #(which fun fact you cannot do from within the app - you have to go to your taskbar settings and turn it off which only hides it) #(this means your tech-illiterate parents and grandparents are unlikely to be able to figure out how to turn it off at all) #(it is almost impossible to remove from the system entirely - i checked) #but jesus christ why would you even put it there to begin with #why are you doing this to my beautiful laptop #whose idea was this. i just wanna talk.

[the-hopeless-haze]

Ok but Wilson baby girl this isn’t why House told Stacy to leave.

I think it’s interesting how House didn’t tell Wilson that he talked to Mark. That scene is probably the best Mark is in and like the desperation like he’s at the end of his rope and he’s where House was five years ago. House’s face when Mark says “I don’t know how to stop yelling at her” he recognizes that…. I don’t know how to not transfer this pain I’m feeling and I don’t know how to not resent you. That scene where both of the men Stacy fucked over (the original girlboss fr) that scene where both of them are struggling to walk up the stairs and Mark has to lean on House like it’s so good.

But Mark will get better. House knows Stacy is running to him because it’s bad right now but Mark is going to get better. House is not. And… he knows the pain of being left behind by a partner when struggling with a disability.

#house Md #s2e11 #Stacy lowkey sucks so bad though #I think when he was on the roof with her and she was saying she didn’t know what to do he already was realizing #I mean I get it sucks both the men she loves ended up with disabilities but the fact she’s so quick to up and leave both of them? #idk I mean I can only imagine House must have made her life a living hell. #but still like. idk. she just sucks. #I think he was also realizing she can’t do this long term. she can’t be with someone with a chronic disability #she couldn’t do it for him when it first happened and his leg is never getting better #there was a lot of truth in what he told her when he told her not to stay but I think it’s a little deeper #I think he genuinely couldn’t stomach doing it to her or mark #house is more selfless than all the characters give him credit for even Wilson was like #‘oh so you just ended this so you can be miserable.’ #like no. #he kind of deflected it to himself too when the patient gave up her liver to lie to her husband #he said he can’t even put the toilet seat down. and yes he has disregard for a lot of things #but so does Stacy. Stacy wouldn’t sacrifice anymore either

[unopenablebox]

new sources of guilt for today:

fell asleep on the couch last night, could not be woken up enough to move, slept on couch for most of night before eventually regaining consciousness and going to bed

because set alarm in context of above, did not remember that i was going to need to get up with or before 🌸 in order to buy milk; accordingly 🌸 bought milk

allowed my dad’s insane thing about vacations to actually come out of my stupid mouth, have probably defused but will maybe have to re-defuse again later, 🌸 took it gracefully but jesus fucking christ

it’s not like i needed another reason to add to the list of reasons that it’s intrinsically impossible for me to stop doing this job but i’m pretty sure i’m hanging on to 🌸’s parents’ tolerance primarily through an adequate display of aspiration to upward mobility and quitting my phd would really bring my, um, solidly middle-class doesn’t-know-about-financial-instruments uncouth jewish executive dysfunction qualities back into the foreground

#box opener #it's a shame that you. can't ever stop doing a phd. because you also secured unpausable funding #and have no other skills #and all the jobs you're networked for make way more sense for a person to pursue. with a phd in hand already. even if theyre not The Job #and if you just go try to do something like . idk. teach. temp work. something not insanity inducing #you are also going to have to find out what happens when you actually for real disagree with your girlfriend's parents about something. #and once you stop doing any of this for even a second. you cannot ever go back to doing it. even the lower-prestige bits that don't totally #miserably suck. #even those are barred to you if you commit the sin of harm reduction quitting #i guess i could make up. a reason i need medical leave. i could........... break a leg on purpose. except that severer physical disability #also seems like a trigger for the 🌸's parents subroutine. so who fucking knows jesus

[lesbiansanemi]

Me: maybe 8 days off will fix me, maybe going back to work won’t be so bad. It’s fine. It’s fine. It’s alright

Also me: *is at work for less than two hours and already Wants to Die* Ah. Great.

#this morning already frustrated me #because so much shit was done wrong or wasn’t done at all while I was gone #because I basically manage the department even though that’s NOT MY JOB #so ofc I come back and everything is on fire and everyone is one omg you HAVE to fix this we just couldn’t do it/figure it out 🥺 #when it’s something that’s so simple they just didn’t wanna do it well or right #but also #the stupid fucking gm was like ‘hey I need to talk to you. it’s about your disability accommodation’ #and I. a fool. got really excited like omg!! are they finally going to approve it!!! #no. no. he basically told me to get fucked and it wasn’t going to happen #he said I could WEAR A FAN????? AROUND MY NECK???? and use that for white noise but that was it???? #what???? the FUCK????? #number one I cannot express how much worse a fucking FAN going in my ears all day long would just make my sensory overload 10 times worse #but also how is that not MORE of a distraction and ‘unprofessional’ than just letting me wear my fucking headphones #I feel like crying. I just want to not leave work with a developing migraine every day because of sensory reasons #and a part of me is like suck it up you’ve been dealing with this for a year it’s not actually a big deal #at least you CAN work and it’s not so bad that you can’t that’s a privilege #and like… yeah…. but I literally feel so drained and miserable every single day #and this stupid job makes me want to kms #but I can’t quit cuz the pay is too good #and it’s just so frustrating because they’re like ‘we’re such a good and diverse company we treat our employees so well’ #and the general public thinks it’s a GREAT company #so I just constantly here about how great and awesome and inclusive they are #but they won’t even let me have the accommodation of wearing fucking headphones #something every other job has let me do…. #and it makes me so mad on behalf of every other person who probably got told no over disability accommodations for even more important and I #intensive things #and I just. yeah. I kinda wanna cry #but as always I cannot cry because I’m so emotionally stunted that all I can ACTUALLY feel are pissed off and frustrated #anyways. I need to break something #kaz rambles

[lucyvsky]

thinking

#ok so like. ignore this i just need to type things out #it’s weird because i don’t ever know what to call my hyperacusis right. like i don’t know what to do about it i just call it a sound thing #and move on but it’s like. i don’t know if it’s a disability or not because yeah it’s like. well it makes my life miserable and impacts like #everything about how i interact with the world. etc. but since i can manage it better now it doesn’t worry me as much and i don’t think that #i struggle with it as much as i used to so it just doesn’t count for me. but it’s also like. i don’t know. my audiologist thinks it’s caused #by me playing trombone but i’m willing to bet it’s all the concerts too but in any situation it’s my own fault and i don’t know how bad i’m #allowed to feel about something that i did to myself. like just the consequences of my actions. etc. on another note though it’s hard too #because i can’t find like. anything concrete about hyperacusis really like it sort of exists but also not really but demonstrably it exists #because i can feel it but there’s no research. and so i don’t know how to figure out my relationship with my sound thing. at all. because on #some levels it’s just like nooooooooo :(( too loud noise but then you go on the wikipedia page it’s like. people have killed themselves #because they had this and it’s just like. ok so that’s a possibility here. great. and i need to survive this?? #i don’t know man. blame the random onset of tinnitus five minutes ago for this #it’s just hard because i don’t know how seriously i should tell other people to treat it like my friends from high school were there with me #when it was the worst it has ever been and so like. they know how bad it could get but i just get really dismissive of it now when people #ask me about it because it’s like. well it hasn’t been that bad in a while but it could be at any time. and so having to define how much it #bothers me to other people is hard because on some days i’m so normal and then on other days i’m near tears over something #i just miss my friends

[intertexts-moving]

hate it when disabilities are like. u know. debilitating. etc.

#have been trying to avoid thinking ab it or whatever for a while but wow!!! hate it!! #trying to drag my brain into being nice to me like it's a fucking dog on a leash. -_- #didn't get around to doing anything fun like art or design or even fucking opening csp today which well ive barely #done that all fucking summer because of the other commitments and also the disabilities too but like. idk. sucks man.!! #& then i'm like. oh my goddd this was ur 1 free time chance to work on art. and u just sat around playing magic & listening to video essays #slow clap.& then i have to be like jesus fucking christ you have been miserable and stressed and so fucking busy and exhausted all fucking #summer with ZERO time to urself it is ok and expected to not do shit if u havr the chance!!!! however it still sucks that i didn't do as #as id have liked :( #idk. feelsbadman! anyway i am so sleepy tired but i really should take a shower b4 i go sleep. hhggbh. maybe. #txt #neg

[pepsimaxolotl]

Trying to figure out how to start a fucking life a little later than the rest so Im trying to google where to start but its all just toxic positivity bullshit for people in their 30s :| I'm a 20 year old who wasn't given very much with no work experience. Can we PLEASE go from there

#like ok yeah i dont feel like i can get a reference from an education place from how spectacularly i collasped #and like. I have no work experience??? #and im a disabled 20 year old? #whod fucking hire me right #you legally have to pay me more than the equally clueless and inexperienced able bodied 16 year old #and I'd LIKE to move away from my house hold and home town cause im miserable here #i just. I dont know what to do #/tw vent

[wawhii]

The older I get the more and more glad I am that I don't give a shit about internet problems anymore (I say with my fists fucking balled)

#Marlinisms #Vent tw #This is about the 'pathologizing your symptoms' post btw #I genuinely think that's an awful post with extremely ableist underlying rhetoric #But also the amount of takes that are like 'NO WE DON'T HAVE TO TAKE RESPONSIBILITY!!!! FUCK YOU OP!!!' is so dire #Yes take responsibility for your actions. Yes if someone is hurt you should apologize and fix things. #YES everyone is capable of harm and it's unbelievably important to at least mitigate the amount of harm you can do. #No people do not always control their reactions to things. No people cannot always fix this. #Also what's healthy in one relationship is miserable in another. #That and how worded to be a fucking spike pit trap for severely disabled + morally anxious people it is #I need to get outside more I literally have not been able to stop thinking about this post since I saw it

[ranger-kellyn]

apparently in the new pokemon games there's no overworld cue of any kind, visual or audio, of when a shiny pokemon appears on the screen and like that's a clear accessibility issue.

one of the youtubers i follow, johnstone, was talking on twitter about being willing to commission a mod for it, which he acknowledged still doesn't solve the issue for everyone not using emulators or hacked switches, but like....the people being absolutely heinous in his comments being against it like...........what the fuck is with gamer bros who are just absolutely against accessibility features???????????

why do gamers hate disabled people SO FUCKING MUCH????? not everything is about you??? step outside of your own fucking worldview for six fucking seconds good god

#like i'm not visually impaired in that way but STILL i can acknowledge it's bad to have taken that away #the comment that pissed me off the most was the one that was like 'what? do you want us to catch the pokemon for you too???' #like?????????? #get off your abelist high horse you fucking weirdo #anyways i'm sorry to every single disabled person #knowing people are this fucking weird about something so minor i can only imagine the horrors of what else people are weird about #what a miserable society we've created

[feline-evil]

Clasping my hands together in prayer and wishing The GamersTM weren't also fans of what i'm a fan of

#jay talkin #the pain of being a fan of a specific character who has so many things that The Gamers are Fucking stupid about #constant cinema-sins esque gotchas abt stuff that they think they r so smart for pointing out #when in fact they are being so facking dumb. do u know my pain as a kazuhira miller liker #everyday The Gamers do a 'gotcha' of 'oh he couldnt do that he's blind' #do we need to talk about how uncomfortable that is to hear parroted around #do we need to have a talk about the wide range of sight loss covered under the diagnosises that get you labelled Legally blind. #do we need to talk about the fact being blind does not always = total 100% sight loss. #do we need to talk about Being Normal about a disabled man for once in our miserable lives. #also you can't tell him what to do thats hellmaster fucking miller are you kidding me. #also had to bear witness to people callong him a weeb for being called Kazuhira.... #my brother in christ how are you gonna act like you know shit abt what yr talking abt #when you don't know that kazuhira fuckin miller is a whole ass japanese man with a backstory #that involves the discrimination and xenophobia he faced as a man who looks like he does #a WEEB? A WEEB?? HES FROM. JAPAN. #oh no way the guy from japan has a japanese name? must be weeb shit guys bc our lil racist addled brains #cant understand that japan is a country outside of our commodification of it bc we r less smart than a bird #WHEEZE. SORRY. I GOT MAD AGAIN FOR A MOMENT. anyway. #GamersTM are insufferable and lack the media literacy to actually be metal gear fans so i wish they'd Go Away #putting metal gear but especially kazuhira miller up on a shelf till you guys can learn to behave