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.
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!" 😂🤦
Just disabled enough to not be able to work 40 hours not disabled enough for assistance
brain fog is hitting hard today. i also think i got too cold last night and now my entire body is stiff and achy and so i'm just
I was visited by the executive function fairy and managed to do the Thing. Haven't had a break for 3 straight days because I knew I had to wring that fairy for all I had. I'm done now, I release the fairy here in hopes another comrade will capture it. Wishing all of you a wonderful rest of your week. You're all amazing for being here.
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she just went by my head! I think she's looking for someone else ....
Read about RFK's labor camps idea. I don't even have words for how evil it is. Like, I guess it's hard to wrap your head around historical examples, or maybe to protect myself I just chose not to. But here it is now.
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 might be trapped in my room because I'm afraid my housemates might yell at me. One of my housemates is doing a sort of radical unmasking thing, and I'm not sure I'm coping since overt expressions of anger or frustration I can't be around. My body interprets this as them being furious at me. I don't even have bottles to pee in atm.
Unfortunately I'm in a work from home deal and my computer is in a public space. Also I just bought food and it might go off before I am comfortable being in the kitchen again.
What if you wear headphones if you’re outside your room and pretend like you can’t hear your housemates? Will they ignore you too then? I’m sorry you’re dealing with that though, it’s really awful to be scared in your own home.
I've calmed down a bit since posting this, but rationally I do not think they would have screamed at me at all, but I have a lot of trauma from previous households. Some of those would have grabbed the headphones to yell at me, block my path etc
I'm trying to be frugal with food, but atm I can't even risk crossing the house to pick up uber eats let alone use the kitchen
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
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.
We live in such an ugly world and it was all preventable
Indeed, so much pointless suffering
I really hate the fact that my disability eats up my free time. I’m supposed to be working full time, and then I’m expected to have energy to enjoy life. But I don’t, which means basically all my energy goes towards feeding capitalism. In this way it’s similar to being poor. It’s unfair in such a simple way.
Say John Doe gets 100,000 hours of concrete actually usable free time during his life, meanwhile we get maybe 1,000. And then I’m supposed to look John in the eye and try to see him as a peer. After all, we might have similar wages (we don’t) and similar working conditions (we also don’t).
John has a savings account he can use to go traveling, buy a synthesizer, drink tequilas, or whatever else he finds enjoyable. But any savings I manage to carve out inevitably go to food and rent when I’m burnt out and unemployed.
This is so true. We really do have less time than other people. I haven't worked in several years since having a stroke as a consequence of cancer treatment, and I desperately need to rest, yet my schedule is more full than I can handle, partly due to frequent and lengthy hospital appointments/treatments and partly due to fighting benefit claim appeals. The amount of work and effort that goes into these two things is really wearing me down. And if I do have any free time, I'm too tired to do anything anyway.
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.
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.
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 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.
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 think my rage would be white-hot if I were in your situation. On the other hand, because you shared this story I have my go-to response in the chamber if anyone tries to pull this on me:
"I don't mean to diagnose you but..."
"Then don't."
So I appreciate you sharing because now I'm prepared for it when it happens to me.
I didn't know this about autism, but a lot of us are processing basically a firehose of information all at once, where NTs probably only process a garden hose at best. So I am always processing all information available at all times. What ends up happening is that I guess I can seem "slow" because when I, for example, try to solve a word, logic, or math problem in school, I have to reconstruct all the information into a mental 3D image in my head in order to solve said problem. I mean I'm not in school anymore but this is just the example I came up with. But like I can drive fine, but with all the rules for "driving correctly" I didn't have enough time to build out that mental image so to speak. and had to act on the flight, essentially going into fight, flight, or freeze mode. I'm a "freezer". This is after me processing all of that from my original comment over the span of 3 days.
This is essentially why I got fired from my last job. I was help desk, as well as a software dev. Can't do both at once, but on top of that, I was expected to solve IT related issues on the fly with very, very little information. Like if I was physically at the site, I could have done it, but imagine getting pulled away from 3 hours of brain coding, just to have to try and solve a scale network issue that is a turn off and on fix, then expect to pick back up where you left off 15 files deep into a feature you are trying to write, while also trying to play catch up on programming fundamentals due to a very lackluster college education.
But do I tell the guy that? Fuck no. He already thinks there is "something wrong" with me.
So I appreciate you sharing because now I'm prepared for it when it happens to me.
I don't know if I will ever be prepared for that kind of shit tbh, I just don't understand why people can't just be respectable to one another without resorting to ableism or bigotry.
The classic top-down thinking vs bottom-up thinking or the details-oriented thinking vs the broad brustrokes thinking. I struggle so much with task switching too. It's like trying to wrench my brain away from one thing and onto another against its will.
I don't know if I will ever be prepared for that kind of shit tbh, I just don't understand why people can't just be respectable to one another without resorting to ableism or bigotry.
Agreed. My "secret" is that when I'm in a conversation with you I'm predicting the outcome of your sentence before you've said it to compensate for my poor auditory processing and to give myself an opportunity to formulate a response in a "timely" way. I'm not sure this is something I'd recommend and it's a very mentally strenuous form of (cognitive) masking. But it means that I personally am going to be able to jump in with that sort of response as the upshot of this bizarre masking routine that I've been trained into doing.
Task switching can eat my whole ass, if I am honest. If I'm hyperfocused on something and get pulled away from it, it can literally disorient me lol.
I try to predict, but I have to prep for it. It's harder with people I can have organic conversations with, but if I'm arguing online with chuds or whatever, it's almost like they just have canned responses most of the time so prediction is pretty easy.
Oh hey, I found myself while making the post on Long COVID! No Way
shortness of breath
Risk factors ... having asthma ... more severe initial COVID-19 infection
As of 2023, there are no validated effective treatments.
Who knows how else long COVID has messed me up, I was fortunate (/s) enough to be one of the first cases in my area, before anybody had taken this thing seriously. To this day, I don't know if that long period of time when I was sick was actually COVID-19. All I know is that my asthma is now way worse than it used to be, I experience shortness of breath often, sometimes when I'm not even doing anything, and I can't breathe dry and/or cold air anymore without a mask. This is assuming many other issues I have aren't related, I'm more likely to pin it on whatever's going on in my neurodivergent mind, but who knows...
memory problems
I FORGET
you're doing good work
