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AshenWolf [she/her] @hexbear.net

Disabled Community Megathread - November 18th, 2024 to November 24th, 2024

Hi Everyone!

As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:

"Disability" is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.

Alright, with that out of the way, let's talk about COVID-19, specifically the kind that messes with you for long time, possibly forever! <-- (so fun /s)

From the Wikipedia Page on Long COVID:

Long COVID or long-haul COVID is a group of health problems persisting or developing after an initial period of COVID-19 infection. Symptoms can last weeks, months or years and are often debilitating. The World Health Organization defines long COVID as starting three months after the initial COVID-19 infection, but other agencies define it as starting at four weeks after the initial infection.

Long COVID is characterized by a large number of symptoms that sometimes disappear and then reappear. Commonly reported symptoms of long COVID are fatigue, memory problems, shortness of breath, and sleep disorder. Several other symptoms, including headaches, mental health issues, initial loss of smell or taste, muscle weakness, fever, and cognitive dysfunction may also present. Symptoms often get worse after mental or physical effort, a process called post-exertional malaise. There is a large overlap in symptoms with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The causes of long COVID are not yet fully understood. Hypotheses include lasting damage to organs and blood vessels, problems with blood clotting, neurological dysfunction, persistent virus or a reactivation of latent viruses and autoimmunity. Diagnosis of long COVID is based on (suspected or confirmed) COVID-19 infection or symptoms—and by excluding alternative diagnoses.

As of 2024, the prevalence of long COVID is estimated to be about 6-7% in adults, and about 1% in children. Prevalence is less after vaccination. Risk factors are higher age, female sex, having asthma, and a more severe initial COVID-19 infection. As of 2023, there are no validated effective treatments. Management of long COVID depends on symptoms. Rest is recommended for fatigue and pacing for post-exertional malaise. People with severe symptoms or those who were in intensive care may require care from a team of specialists. Most people with symptoms at 4 weeks recover by 12 weeks. Recovery is slower (or plateaus) for those still ill at 12 weeks. For a subset of people, for instance those meeting the criteria for ME/CFS, symptoms are expected to be lifelong.

Globally, over 400 million people have experienced long COVID.

Mask up, love one another, and stay alive for one more week.

81 comments

  • Does anyone else get so angry and upset by toxic positivity? All the people who say that you can achieve anything you want if you just put the effort in. No reason to struggle in life or be poor unless you're lazy. And when I tell them I'm a partially sighted cancer patient learning to walk again after a stroke, they still say that's not a good enough reason to be poor or an underachiever, I'm just not trying hard enough to succeed. And these idiots are always from some privileged background, have perfect health, daddy's credit card and the right connections but convince themselves they've achieved all their success themselves. And say to people like me "It's your negative mindset holding you back. Believe you can improve your life and you will!"

    Hate those people.

    • I absolutely go all-in on these types of people. It's usually "Easy for you to say when you've clearly never had your spine broken in four places. Shut the fuck up."

      I'm more mobile than most people who've had the same injuries, but I'm still limited in what I can do. There's the random ass nerve pain, too. I think it's because these are the same people who think we have a magic pill for everything and if something bad happens to them, they can just "get over it" through sheer force of will. It's the same mentality preventing the US from having universal healthcare.

      They don't think random things happen to random people and sometimes there's no way to fix it. Accepting that fact would mean their prosperity gospel, Supply Side Jesus, just world is all wrong.

    • It's so frustrating, for sure. Like, my parents seemed to have some expectation that once I started anti-psychotics, I would be able to get back to a relative normal. They knew it wouldn't magically get better, but they thought my condition would improve 'til I was able to achieve anything through hard work. Several med adjustments later I still have the occasional psychotic episode, schizospec negative symptoms have been kicking my ass, and my condition seems to have steadily declined. I did recently get a new med tacked onto the list, and it seems to be helping some of the negative symptoms. Some level of positivity is good to keep you out of the Pits of Despair(tm), but this toxic level is not helpful.

      • Same here. Having thyroid cancer itself was a double whammy, not only did I have, you know, cancer, with all the medication side effects that entails, but it was also my thyroid, which means for several years I was living with a severely dysfunctional thyroid (as it took three years to get diagnosed as no doctor would take my seriously) but then, having my thyroid removed and now living on thyroid meds with the dose changes, fluctuations, etc trying to find a stable dose, brings a whole other set of illnesses and challenges. Especially since I have to be kept on an uncomfortably higher than usual level of thyroxine to prevent the cancer coming back (as a high thyroxine dose suppresses any cancer cells that got missed by the surgeries.) Despite all this, people kept treating me like a lazy hypochondriac when I had to drop out of university and quit working. It wasn't until I finally had a stroke (caused by the cancer treatment) that has left me partially sighted and unable to walk properly, that most people finally accepted "OK, you are disabled after all, we'll leave you in peace." But even now a minority of people still treat me like a lazy hypochondriac, and they keep reassessing me over and over for benefits.

  • I got on at the delivery job I had applied for a while back finally. I was doing the driving test and even though I've been driving for 25 years, I guess I suck at it and almost failed.

    I was doing the driving van inspection but was sort of doing it all in my head and the guy acted like I was staring off into space. Then nerves took over and I proceeded to fuck everything up. At the end, the guy was like "I don't mean to diagnose you but you go-" and then I cut him off and said I'm autistic. It shut him up but also kind of unprofessional. Not even first day and I'm already getting treated like shit for not being a functioning member of society. Feels great.

    Maybe never say the phrase ""I don't mean to diagnose you but...", okay? Fuck that guy. I hate normies.

    In any case, I start driving on Wednesday. I'm gonna hate it.

    • I don't mean to diagnose you but...

      How the hell does someone think saying that is okay?

      • The motherfucker said it twice. The fucked up think is that he also has a physical disability with his left hand and, I think, his back from how he walks and stands. Like bro, we both trying. I just have enough respect to not drop some ableist ass bullshit comments about it.

  • I seriously don't think most people have any idea how to emotionally support men. Hiding in bed and gave up on reaching out to anyone bc they never seem to understand what i'm asking for. I hope it's not like this for everyone. Maybe it's just america. Maybe it's guess culture people. Idk. Right now it's just me and my stuffed pig and hope sandoval against the Dread and the Big Sad and frankly we're kinda outnumbered.

    • Don't ever forget that your survival rate vs the Big Sad is 100%. I'm not the gambling type but if I was, I'd be betting on you comrade because that's one hell of a batting record.

      If you're interested, I've started running a Drop-In Peer Support server via a cosy game online. Sometimes we hang out and shoot the breeze, other times I'm monologuing, but I'm also there if people need to vent and you're welcome to join in.

      I've been keeping it a bit quiet and only posting about it in the neurodiverse comm so I don't get absolutely flooded by an unexpected amount of demand but survivors of the Big Sad are part of the neurodivergent umbrella (and even if they weren't it doesn't matter one bit because anyone can struggle with poor mental health and need support, which is who the Drop-In server is for).

      I'm almost certain I've been up in your replies talking mental health before. If you've ever found any of that from me useful, the Drop-In server is an opportunity to get more of that but in a way that is a bit more relaxed and dynamic/interactive so it means I'm able to draw upon different methods while providing peer support.

      I can point you to a post with more information if you're interested.

    • I'm female and I've never had a shred of emotional support either. My friends stopped bothering with me when I got too sick to be fun any more. I haven't had any kind of social life or companionship in years. I've got no family to speak of. Even the nurses and doctors aren't kind. I was laying in bed crying after my cancer surgery because I was scared and in pain and the nurse crossly said to me, "Oh stop whingeing. Lots of people have it worse than you." That's just one example. Now I'm destitute even the support agencies (like macmillan, citizens advice, etc) just keep passing the buck to each other, when I beg them for help with things like accessing food or any other kind of support, they just try to pass me off to each other instead of helping me. The only people I've actually had help from are those here on hexbear/lemmygrad.

      Even when I got so desperate at my situation that I made a suicide attempt, everyone including the medical staff treated me like absolute crap.

    • I seriously don't think most people have any idea how to emotionally support men.

      Toxic Masculinity makes any kind of emotional support as difficult to give as to receive. A lot of it just boils down to starting when people are young and being receptive when they come calling. If you're trying to reach out to a father or an older sibling or an old school friend who just isn't having it, you're going up against decades of contrary social conditioning.

      Maybe it's just america. Maybe it's guess culture people. Idk.

      My grandfather was physically abusive to his kids, but my mother's father was comparatively very kind and chill. When my dad had me, he decided to be more like his mother's father than his dad, and he raised me with all the kindness and compassion in the world. He also gave me his mother's father's name.

      Now that I've got a newborn son, I'm striving to be the kind of parent my dad was to me. I'm giving him my dad's name and I'm hoping to raise him to share that kindness and compassion with others. And hopefully he'll pass it on to his kids. And on and on.

    • Hiding in bed has been my mood for the past year. I’ve tried to reach out to friends and they show up for a while but then they forget about me again. Me and my stuffed elephant lie in solidarity with you and your stuffed pig.

  • Sending so much love to all my disabled comrades!

    I've been trying to touch grass, but it's not going so well. Feeling very overwhelmed and tired. Spent today going between feeling pissed off and being on the edge of tears.

    It's so hard to get people to show up for me in any way that matters. I feel like I spend more energy trying to get everyone around me to help, than I ever get in return by the time they forget about me again...

    • My experience is the same. All of my social group has abandoned me and I just don’t have the energy in me to rebuild only to have them abandon me too. It’s just my wife and I at this point, and I don’t know if that will ever change. I wonder if there will ever be a reckoning for this when (not if) COVID comes for all of them too and suddenly they realize they have alienated any of the population that could have ever helped or been there for them. We live in such an ugly world and it was all preventable.

  • I had a nice dream last night (as in, not a nightmare), which is a legendary rarity event for me. I was in some different world without covid, with a light rail in my home town and living a life where I have people around me that I'm connected to. All that happened was that I went to some kind of organising event and stayed a while after to chat with friendly folks. Casual physical touch, which would make me panic irl felt pleasant and welcome. Afterwards I took the light rail back home and ran into one of my most treasured friends who was on their way somewhere else. That's it, that's the dream... It sucked so bad waking up into hellworld, and realising that the time to start working to make this dream a real possibility was years, if not decades ago. Taking a moment to grieve that future by typing this up I suppose. Hope everyone is doing alright out there

  • It’s been months and I still can’t find a job. I can’t even get an interview.

    Can any comrades help me with getting porky to notice me? Like what sort of things should I put on my resume. I don’t care if they’re lies. Looks like I need to lie if I ever want a job. Is it an ATS thing? If so what words do I put?

    • The market for pretty much everything that isn't in the service sector is complete dogshit if you're in the states -- I don't know how bad it is elsewhere. Years ago I paid a guy whose whole thing was puffing up resumes so that they get past the word filter shit they do now and it still doesn't work. I have lied on my resume and interviews, I have been completely honest and candid, and nothing works. I am sorry to say it's pretty much nepotism or luck right now. I have been in my field for a long time and it has never been this difficult to find work. Anyone who tells you the recession is "coming" (it has already been here for a while) or that jobs are good right now are rubes or grifters, maybe both. I don't think there's a cheat code or anything that can be done to help it; we live in the bad place and in unprecedented times. All you can do is keep rolling.

    • I don't have many tips, but my boss did tell me that for public-sector jobs (might help in private sector as well), look at the requirements that the job has, or what they are looking for in an employee, and tweak the wording on your resume to be very similar. This supposedly helps with algorithms. Also tweak resumes as necessary depending on what you're applying to, some groups may want to see different things on that page than others.

      Anyway, this is just my two cents, as someone who's still in school and has only worked minimum-wage service jobs or seasonal positions (still minimum-wage) for the most part. You might already know this, but I don't know much more. I also don't have a resume and never have, just to add to my credibility even further.

    • Are you applying through places like indeed and linkedin? I've found I have a much higher call back/rejected but not just ghosted rate going to the company's website and applying there if possible. A lot of the posts on job boards are scrapped from company websites and nobody is actually seeing your application.

  • I am getting more and more terrified by the day by all the stuff in the British news about how they are cracking down on benefits and even the disabled will have their benefits stopped and have to work, or starve. I worked for 16 years, I even kept struggling on for a while after being diagnosed with cancer and suffering all the side effects of the illness and meds. Now I'm partially sighted and learning to walk again after a stroke too, my doctor wrote a letter to the DWP (benefits assessors) telling them I'm totally unfit for any type of work at all, still I get re-assessed frequently and had my benefits stopped at the last assessment, as the DWP said there's nothing wrong with me! Now I'm going through an appeal, completely penniless.

    Of course the idiots over at reddit are all for this, saying what a good thing it is, sharing stories about all the people they supposedly know, who pretend to be disabled to claim benefits. Stories like "my dad/neighbour/friend pretends to be a helpless blind cripple to claim benefits but on the side he runs marathons and has a part-time job as an acrobat for cirque de soleil." Completely ignoring the fact that even the DWP themselves admit that the rate of disability benefit fraud is tiny, the vast majority of claimants are genuine cases. Genuine cases who they still give zero points to and make us go through endless appeals and assessments just to keep our tiny pittance.

    And each time this happens you sink further into debt, as you end up maxxing out your overdraft and getting whatever loans you can to survive during the appeal, meaning you end up with a ton of interest to pay off as well as having to pay off the original debt. If you win your appeal and get backpay, it's never enough to pay off the debt and interest.

    But seriously, what do these people expect someone like me to do? I'm exhausted and brain foggy from cancer treatment, I'm learning to walk again and struggling with becoming partially sighted since the stroke. My balance and coordination have been affected too, I struggle to do even basic things like get dressed. I do not feel well enough to hold down a job any more, nobody would hire me anyway. The population don't want to financially support me with benefits, they've also decided I should not have the right to a peaceful exit via assisted suicide. All the easy painless suicide methods have been made illegal and difficult to get hold of. I've already tried once, that was a disaster that left me in intensive care for 5 days. And if we end up homeless on the streets, we'll be ciminalised for vagrancy/begging/loitering/whatever charges they throw at us for being homeless. And if we do manage to commit suicide ourselves then society wails an endless chorus of "How can you be so selfish as to kill yourself? Don't you realise people care about you and were hurt by your suicide? Some poor person had to find your body! WhY DIdn'T You jUSt aSK foR HelP?"

    God, I hate our society. I am not being dramatic when I say that the British government and majority of the British public are worse than the Nazis. At least the Nazis were open and unashamed about committing a genocide of the disabled. They didn't hide behind making it about employment figures, they didn't pretend they were acting in the best interests of the disabled. Which the British government do, saying disabled people will feel less depressed if they work. How about asking us? It is not in our best interests to be starved and threatened into working when we cannot even care for ourselves without help.

    In the reddit thread, they outright acknowledged that genuinely disabled people would die because of these proposals, but think that the greater good of reducing unemployment makes the price worth paying. We aren't even seen as human, we're just unemployment statistics and useless eaters. Don't these people ever worry that this could happen to them? It only takes an illness or an accident and you find yourself unable to work too. Then they'll find themselves saying "They came for the disabled and I did not speak out as I was not disabled. Then I became disabled and they came for me."

    EDIT: Now those redditors are claiming that everyone on benefits is a criminal who is constantly being arrested for petty theft and draining police resources. well, maybe if benefits weren't so low and constantly being stopped at reassessments, people wouldn't need to steal to survive?

    EDIT2: Now they're claiming people on benefits don't bother voting, so we deserve whatever we get. I need to stop reading that thread.

  • Winter is so tough. Can’t heat above 16C because gas is expensive so I basically have to hide in my blankets all day with a hot water bottle. Can’t go outside without 5 layers and still it takes so much energy to be in the cold that I can’t do it often. Basically most of my energy goes into staying/getting warm or preparing to go out in the cold. I miss the freedom of going outside in the summer, even if I could only do it for short moments.

  • we need to beat the "omg you people can't do anything" post OP to death with hammers for egregious discourse crimes at this point

    • what do you mean people are using it for epilepsy. it's already bad enough. are we at the social nadir where we're putting seizures in the 'hysteria' set too

  • I have been touching computers again. I am a tinkerer at heart and I just can't help myself. Trying FreeBSD on my laptop since I've been a linux user for pretty much all of my adult life and never gave other Unix-likes a shot. I like the philosophy a lot. The port/package system is very cool. The linux "scene" if it can be called as much is losing me for many reasons. Thinking about messing around with gemini protocol because I am very much

    about a lot of modern web browsing & general computing habits. It seems pretty cool to me to try to revive the home-grown net experience I grew up with, and I don't think this is just nostalgia talking...but we'll see. If I like it, I'll host my own capsule & will link it here for anyone who cares. Who knows? I miss computers & the web being fun instead of a localized torment nexus hyper-tuned for the purposes of hustling, grifting, etcetera.

  • sat on the edge of the bed to put my socks back on this morning, and felt a little pop and then pain when I got up, but I didn't sweat it because I was sure I'd work it out over the course of the day

    I did not 😐

    it's good that I find this shit so funny. "what did you do to your back?" "oh nothing, just put on my socks!" 😂🤦

  • Update on me doing anxiety inducing stuff: I’m really just trying to be more assertive which is scary for some reason. So far I’ve had a few negative reactions but a lot of positive ones. Some nights I just lie awake drowning in anxiety but then I’ll take it easy for a bit until I feel more calm. All my work is volunteer work currently and it’s really easy to just step away for a few days when I need to. Also I get a lot more done on my volunteer jobs due to being more assertive so I don’t think the people I work with really mind. I’m being vague for security reasons lol.

81 comments