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.
Pointless complaining
Been sick since last Thursday, my best guess is caught it from family who was visiting me. Coronavirus test is negative, but who knows how reliable these things are for all the new variants. Feel absolutely nasty and had to cancel the thing I was looking forward to where I could’ve spent hours doing cool stuff related to special interest
Instead either sleeping or wasting my time on this website
guess we doin spoilers now
It’s really hard not to be annoyed when my toddler is sick because they’re a literal baby and can’t control how they feel but holy shit “please i have to work at 6am can we please just go to bed” (this is me last night)
Similar complaining
spoiler
My housemate told me yesterday she had a head cold and I didn’t think much of it. I think I never put together that “head cold” is the same thing as “the cold” aka rhinovirus. Well, now I can’t sleep bc I have apnea and I can’t use the cpap machine if I can’t breath through my nose.
She could have worn a mask. If she knew she was sick he could have worn a mask. She could have said “hey I’m sick you should wear a mask.” Aside from one bout of Covid I can pinpoint to a specific action on a specific day I haven’t had a comunicable illness since 2019. I wasn’t thinking about protecting myself at home. Just, like fuck. She could have worn a mask, we have so many damn masks. Why wouldn’t she wear a mask after all the shit Covid has brought down on the world? But she didn’t, and I didn’t make the connection of “head cold” = contagious illness and now I cannot sleep. Shit sucks yo i am so bone dead mortally existentially exhausted
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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.
There’s a German film called Never look Away. It’s about a Third Reich doctor murdering and sterilising ill and disabled people during ww2. At the end, when the Russians take over, a Russian commander asks the doctor, “If my child was born with health problems, should it be put to death?”
The German doctor replies, “Space and resources on this earth are limited. Should they be given to the healthy or the sick?”
And this is the exact perspective and thought process that the majority of the British government and public have. That money, and space in housing, are limited, and shouldn’t be wasted on the sick. The logical consequence of this is that payments to the disabled are stopped and the disabled die. Die a longer and slower death than being put in gas chambers.
I’m right there with you, it’s absolutely unbearable. I’ve already been homeless once since I burnt out on work, and it fucked with me pretty bad. And I didn’t even end up sleeping rough, I was very lucky.
I am not being dramatic when I say that the British government and majority of the British public are worse than the Nazis.
No, you really are not. I’m convinced that the british only go so hard on teaching about the horrors of nazi germany in schools to deflect from their own incomprehensible evil. The union jack is a hate symbol worse than the swastika; death to fascist britain.
Have the doctor tell them that the only work you can qualify for is MP because every other job requires some degree of physical or mental proficiency.
lol.
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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.Still unemployed and broke, feels like can’t do anything right. My support system is one person and they constantly put me down and have unfair rules about what I am allowed to do because I am living in their house. I’m a grown adult and I can barely function. Been exercising, but I can’t find energy to make myself food or clean up after myself and I miss my cat.
I’m sorry, that sounds really hard. I hate how commonplace the “being broke is your own personal failure” narrative is. It completely doesn’t match reality.
Trying to pace myself with my hand sewing and it’s messing with me that I actually have the energy to do something but have to restrain myself because of my chronic pain :/
I am getting better at taking breaks more often and it does reduce the amount of pain I feel overall but still
i feel you. when i actually have the energy to weave i tend to overdo it just cause i love it and i’m just happy to be making things but it’s really detrimental. breaks are really important and i need to take more of them too, but it’s really hard to find the right balance!
just out of curiosity, what are you sewing?
I doing the basting step of the florin quilt (https://www.talesofcloth.com/products/small-change-quilts-kit_pos=2&_sid=c78ba8694&_ss=r the one with the small flowers)
It’s english paper piecing so you form the fabric over the paper template, baste it in shape, then later you hand sew them together and can remove the papers and basting stitches. It’s pretty time consuming but I love the process and end result
This will be my second project I’ve started but the first one I had no idea what I was getting into and unintentionally gave my self a multi year project. I’m hoping having a second one that I can go back and forth on will make both seem faster
And omg you weave too? I have a rigid heddle loom that I love! Im still a beginner but I have so much fun with it
oooh that’s sweet!! i’ve been wanting to try english paper piecing. i’ve always found quilting so cool, my grandmother used to make these gorgeous quilts but she never taught me how. i’ve been seeing tutorials here and there i’m interested in following, maybe something small like a coaster
having more than one thing going always adds a nice change of pace. those kinds of projects always take a long time but the payoff is so good and i bet your work is gonna be spectacular.
and yesss, another weaver!!! i do rigid heddle as well as tablet weaving and it’s honestly my favorite thing. i would do it forever if it wasn’t killer on my back. i get so excited to see other weavers cause i don’t know any in person so i’m
Omg please try it, I’d love to have someone to talk to about weaving and quilting
Tablet weaving is like magic to me, you can create si many intricate designs with so little tools.
What do you like to weave on your rigid heddle?
Right now I only use cotton so even if I don’t like the results I can use it as a rag but I mostly make towels anyway lol
@Whatsnots too: after reading this lovely sub thread I saw someone showing their weaving in another mega https://hexbear.net/comment/5670202 Thought youse might be interested.
oh hell yeah, thank you for sharing!
all weaving feels like magic tbh!!! cotton is really nice, it has a great texture and it’s strong so i usually stick to using it too!
right now i got a log cabin patterned tablerunner on the loom that i’m chipping away at. i also enjoy making scarves, and towels too from time to time.
other people sew bags and other things out of their woven fabrics and it’s so inspiring, i’d love to learn how but until then i’m really happy making my squares and rectangles lol.
i’m genuinely always down to chat about any crafting stuff, i may ask you for advice once i give quilting a go if that’s ok?
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.
Just realised winter hasn’t even officially started yet
bleh
I keep having this experience on this site, where I’ll get pulled out of reality by people talking about going to cafés and gigs and whatnot like it’s 2019. I feel like it just makes me grieve for all the things and people we lost since 2020 all over again every time. But not in some deep, meaningful or insightful way, more in a I’m-on-the-receiving-end-of-a-“fuck-you-got-mine” kinda way. I’m reaching a point where I feel like I’ve got to ask ppl to put up CWs for their reckless and careless behaviour. But am I just going mad? Is this a reasonable thing to do? What would the CW even be? “cw: covid related reckless behaviour”
But also it just seems like a prime way to get into heated discussions over covid, because the same covid denial that makes them not acknowledge the recklessness of their behaviour in a cw, is the exact same covid denial that allows them to “go back to normal” in the first place. And I don’t have the spoons rn to be unpacking other people’s nasty covid brain worms.
spoiler
I get this a lot and pretty much it just makes me stop looking at the site for some amount of time until I feel like I can stomach it…and then stop again once I can’t, on repeat. It’s not very fun, it’s extremely alienating, and I also don’t know what to do about it. I have an extremely pessimistic viewpoint on anything to do with this virus anymore and I wish I didn’t. I inhabit such a vastly different world than even other disability-oriented spaces who, in my experience, are also minimizers. If people would do even the bare minimum to inspire confidence I could deal, but like…they don’t. At all. At any socio-political stratum. It’s terrifying. I wish I had anything better to say.
spoiler
I inhabit such a vastly different world than even other disability-oriented spaces who, in my experience, are also minimizers
Yeaah, I’m glad I’m not the only person with this experience. Just everywhere I go I feel like going out of my mind about this shit. I’m also very pessimistic, between this and the overwhelming racism on this site… I guess a good start is to have dedicated spaces for us like minded folk to chat to get enough of a culture going so it can stand in contrast with the wider site culture. But on the other hand, that just feels like one more way for us marginalised people to finally step up to the task and end our own oppression once and for all, while the “allies” are continuing as “normal”, waiting for the marginalised folks to snap them out of their haze and educate them.
If I just don’t look into it, then it’s not my fault! I didn’t know any better!
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.
I know we’re meant to be bigger people and wish people well, but I DON’T. I honestly wish that all the bullies who treat us like this and think what we deal with is nothing, would become disabled themselves, and have to deal with all the challenges and unkindness we deal with.
Oh these prosperity gospel people piss me off so much. “I accepted Christ and everything became sunshine and rainbows!” Cool, I accepted Christ and my condition has declined at an increasing rate since. Glad Jesus saw fit to miraculously heal you, but I didn’t get the magic fix, and do not dare tell me I just need more faith! (sorry, got a little heated in my head; no anger towards anyone here, I promise)
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™, 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.
Ugh, yeah. Abled people can be so awful sometimes. I’m so sorry.
feeling worse about myself every day
I feel like I can’t do anything right, I’m always confused and hear the wrong things, say the wrong things, choosing the worst possible decisions
I’m sorry that things have gotten you down.
You have intrinsic worth that cannot be erased by making bad decisions or because you hear or say the wrong things. You are both valuable and valued.
Continually disappointed by “we would make great friends though!” as a euphemism for “leave me alone, weirdo”.
For some reason this happens mostly with fellow ND people who emphasize the importance of honest communication prior to meeting.
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.
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 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.
grim, negative yapping
I stopped taking the tramadol (37.5mg) dose I was on, mostly because my brain felt pretty foggy after the best part of a year on it. I do feel clearer, but also ow, my skull, my sternum. Walking for half an hour to get meds and groceries was doable but painful, Idk where that falls on the 1-10 scale. I should probably get cbd something but that shit better be a miracle substance.
I promise I won’t spam these megas with like 99 OW I AM DYING posts.
This mega is for spamming OW I AM DYING posts so please do if you feel like sharing
thank u
Just disabled enough to not be able to work 40 hours not disabled enough for assistance
It snowed a lot yesterday and today here and it’s just so quiet. Just so lovely, snow puts the world on mute.
Yees, I miss snow so much :(
Death to fascist britain.
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.
I
now🧚♀️
she just went by my head! I think she’s looking for someone else …
