You are welcome, you are safe, you matter, and you belong. Have a great week everyone.
♡〜٩( ╹▿╹ )۶〜♡
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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.
Mask up, love one another, and stay alive for one more week.
Support for the mods needed!
@un_mask_me@hexbear.net and I are looking for a variety of different sources concerning our first mega featuring a group of diseases. We’re looking to give you a very general overview with further reading about auto-immune disorders/diseases. If any of you know of or have academic papers on any specific auto-immune disease or just the group of diseases in general, we’d appreciate if you could send them to us. We’re specifically looking for non-US sources. They also don’t have to be in English, so if you have a good source in any other language, we’d appreciate that too! Send them to either one of us via message and we’ll feature them in the next mega.
Thank you in advance
Have you heard of Dr Joel Fuhrman? He’s a doctor and nutritionist who has written a lot about autoimmune issues, his website might have some useful info. He is American though. He tends to cite his sources.
He’s a quack, and he cites things dishonesty. He also blames people’s chronic health problems solely on their diets.
While what he recommends, a mostly vegan and pretty healthy diet, is all well and good, he affords diet excessive power and those who fail to adhere to a “good” diet excessive blame.
To quote Dr. Peter Lipson in his criticism of Fuhrman https://sciencebasedmedicine.org/your-disease-your-fault/
As physicians, our job is to use the best available evidence to help all of our patients. It is not to dispense false promises, fake science, and a heaping portion of blame to those who don’t do everything we tell them to.
We’ll have a look, thank you
Made it one more week and now I want to cuddle
hugs back tightly
Thanks a lot hugs back tightly I can’t even visit a cuddle therapy centre so I really miss it.
I believe that. You can have as many virtual cuddles as you want! Are animal shelters an option for you? I know some let you go in and play/cuddle with the cats they have, but you’d have to check the area around you.
Sadly no :( here’s isn’t any shelter in my neighborhood and even if one was my family wouldn’t allow me, I am dependent on them for going anywhere because of my legs. Hugs you tightly and rests my head on your shoulder
Just read the WILDEST take in a post on lemmy. I posted a news article about how the new UK Prime Minister intends to make it more difficult to claim disability benefits. A lemmy user said this is good and fair because historically, the ancestors of British people subjugated other nations so we now deserve to be subjugated. What? I deserve to be impoverished, potentially to death, because hundreds of years ago white upper class people colonised other lands? Does he even consider the fact that many of us are descended from immigrants and not genetically British at all? Or the fact that it was the wealthy doing these things, not the average working class person. Or how this has any relation to disability or why it’s specifically the disabled that need to be punished for this?
I think some people take their virtue signalling against historical oppression so far that they are now glorying in the oppression of today’s vulnerable.
I am Indian, 100s millions of people from the subcontinent died at hands of British colonialism HOWEVER it’s never the weakest people like disabled people who cheer on colonialism but labour unions that these people 'critically support’s like yea critical support is important and all that and no one who isn’t bourgeoisie should be the one paying reparations but the trade unions are the ones who always chested on wars, colonialism, and all that to have their jobs. Disabled today barely have anything back then it was worse for them, they were instituiitionalised in worst possible ways.
I want some ice cream, a simple popsicle would be nice too no need for milk or any cream I’ll just do with popsicle. I want to eat ice cream away from the eyes of my family, mango popsicles are so good!! Strawberry as well, pineapple, orange, some plain sugarless syrup would go so well with it.
i got a variety pack of popsicles and cant eat the mango ones (is yucky) so i will save them for you
Thank you so much!! Appreciate you a lot!
How have you guys been doing, given the extreme heat? Are you hanging on alright?
I almost got a heatstroke while getting a haircut because I got soaked in sweat like my tshirt was so wet that you would think I just got splashed by water, aside from that I am decent.
Ouch, that’s nightmare fuel :(
Really, my ears became heavy and it got hard to hear anything, my eyes became blurry and started to black out
Oh no :( How did you manage to cool yourself down a bit?
I was getting a haircut at my place by those saloon at home thingy because all roads to local saloons have been dug up. So I first told the barber to remove their cover then had a cold glass of water
Alright, that’s good. I’ve been using a moist towel and put it over my neck and shoulders while also drinking a lot of water
That is good too, I don’t experience these regularly but the firm wanted to save some money and thought it is a nice idea to give a plastic cover instead of a cloth one which led to a snowball effect of I kept sweating but due to plastic no sir fried it which slowly accumulated and led to the mesr heatstroke. It is quite a doozy because I have used this form before and they had a cloth cover back then.
Posting and drawing in the park. There’s a spot right next to the fountain that’s actually pretty cool. I can almost do a proper stick figure.
That sounds like a lovely place to chill out in! And I’d love to see your stick figure progress, but only if you feel like sharing it
My stick figures are not ready for prime time, and may never be. Which is a problem because I specifically wanted to learn to draw to show people. What a conundrum.
Your stick figures look great, I’m sure! Stick with it, and they will get even better
opens a box of sub sandwiches there’s for everyone I take mine and start eating it please take yours as well everyone.
Thank you very much!
Of course! Hugs you back
I get manic over techy things. I feel like if I didn’t swing back into depressive episodes periodically, I’d be making the next TempleOS complete with the whole of Terry’s mental illness. (sidenote, damn his story is so sad and I see people make fun of him and it makes me cry almost every time) Like recently I’ve been falling into this Reticulum network stack. It may not be anything spectacular, but I think it’s neat. So now I’ve been staying up all night trying to make this one firmware work on my T-Deck, but the build is so bad. Like, it checks out its dependencies at certain versions to make sure it all builds correctly, but even with its own controlled environment, it still fails to build for a variety of reasons. So I tweaked things and edited some header files and shit, and it finally builds. I get it to flash the firmware. And the thing doesn’t turn on. Like, I’m wondering if the whole thing was vibe-coded because it’s just so bad. So now I’m up at midnight, forcing myself to go to bed, nearly in tears because I can’t get this thing working and I just reminded myself of Terry Davis. Sorry, that was really rambly, and I don’t know if any of it made sense. Hugs to all who made it this far!
What the fuck. I tried installing the release binary again and it just worked. It didn’t work last night, but whatever. Guess I’m glad it works now.
Sometimes something will happen and I get a taste of belonging, and then when the taste is gone the yearning is so bad it hurts. I’m at the stage where it hurts now.
It’s weird, I feel loneliness and madness approaching but it recedes just before doing unrepairable damage. My head spins, I can’t say how I feel because it is impossible to say. Imagine you have entered a room and you call someone and tell them you entered said room bhut then they insist that you have to enter said room again from the door they’re coming through. Imagine you just selected a paint for the wall and wall has been painted over but now suddenly when you go for couch shopping you’re again asked to pick a paint for the wall by the person with whom you selected the paint in the first place. This is the feeling, it’s like a groundhog day but you have to find evidence that it isn’t to move on.
I haven’t been very active here due to my laptop not working, but the situation is on the way to being sorted and I have been lent an ipad for the next few days so I can finally chat here. I’ve been having a horrible time, trapped in this house with my landlady’s very smelly creepy husband, alone while the others all go out (he never goes out and just creeps around here all day, hanging around outside my door a lot and making me scared to come out.) As if this isn’t bad enough, I always get sick when he comes. He always has coughs and colds, even claims to have covid at times yet comes here anyway. He coughs his lungs up constantly and now I can’t stop coughing too.
On top of this I got robbed twice today. Justeat marked an order as delivered when it wasn’t, the last of my credit, and sainsburys have vanished the last of my credit from my online account with no explanation. So I’m without food too.
And my bladder issues have really flared up quite badly again. I’m really stressed out about all this and don’t know what to do about any of it, and literally starving.
Anyway, I hope all of you are OK, I’ve missed having people to chat to lately.
I feel like I’ve lost a few billion neurons since my CPAP machine broke among other things I’m too embarrassed to share
It sucks
I’m going to try to chill and play Minecraft without feeling guilty
I’ve always wondered how people can sleep with a CPAP, it looks really uncomfortable.
You get used to it pretty quickly according to people I’ve spoken to. Also the alternative is sleeping even worse.
I used to use a similar machine, AVAPS for a long long time and got used to it quickly because when such a thing, your lung aren’t breathing well as is so there’s no alternative.
Finally had my appointment with the urologist today. Completely useless. They just blamed all my symptoms on my fibroid and said the best they can do is give me another medication to try but this medication might raise my blood pressure. And on the way there and back, had to go past the sea. The beach stinks to high heaven because sewage is being pumped into the sea. Had to breathe through my mouth for 10 minutes because of the stink. This country is an absolute hole.
I noticed custodial work has a degree of autism coding in my limited interactions with coworkers. Couple weekends ago I was at the Dollar General because coupons and I think I needed tp at the time, one of my coworkers was there buying energy drinks one part because they help, one part because he likes the artwork on the cans and he actively collects them. He also figures with the rise in coffee prices and environmental costs might as well, he was also old music head went to all the concerts in the 60s. So as he’s buying pure liquid caffeine some dude in line harasses him a guy his age shouldn’t be buying energy drinks because they’re bad for his heart, coworker shrugs it off, I mean what can you even say to that nonsense? To make the RL comedic skit in DG for real after my coworker left the dude bought smokes.
I also have a sad grossout work-birthday story thanks to cyclosporia from a while back(cw illness, exploitation under kkkapitalism, and body grossout stuff)
spoiler
So it was after my birthday party and my last relative left, everything was right in the world, I had exactly what I wanted to eat, a pizza and a cake, nothing special. Then 0 warning, 0 anything, I throw up on my nice carpet, I have to go in to work later that day since 2 days of the week are basically 80pct of my paycheck and my bday falls upon one of them this year, so I clean everything up and drag myself in. I manage to survive the shift, but its rough af. I had to give my birthday leftovers to relatives since I was too ill to finish it myself.
Fast forward a few days, weeks, whatever later, cyclosporia appears to have intermittent symptoms for me, and its a extra rough long day, but hey, dat paycheck. I have to take plenty of trips to ‘go’ and at my second job site I feel nausea kicking in. There’s the one single stall bathroom at this work site that’s always btfo/torn up sure as the sun rises, puke in sanitation box ,poop and pee sideways all over, booger graffiti, c*m on the door etc. Anyway, I go into that bathroom just to scope it out, big mistake, even though it wasn’t the worst I’ve beheld of it, I still I end up recreating the puke scene from Team America but the custodial edition. Puke-clean loop like 3 times. It was a damn miracle I completed my shift, I never felt my legs so weak.
I keep wanting to tell people. I even think I posted here before and deleted it. But it keeps popping into my brain and I cant get over it
We had a case of an alcoholic inuk patient who had to sit on his ass waiting for hours because nobody wanted to deal with him. When he was finally seen I was the only one who wanted to be there. And at one point he tells me that he was being discriminated against, that he was being profiled and that was why it took so long and why he was being treated that way. And it was. And I had to sit there and tell him to stay because he deserved to be treated just as much as the white people. Because he did, and he needed to be seen, and this wasn’t right.
And then he starts being so fucking sexist to the doctor I dont know what to do and I just have to stand there assuring him that the doctor who waited 4 hours (of the 12 he waited) to treat him because he’s inuk isn’t a bad doctor because she’s a woman while trying to convince the head nurse that I am not going to wrestle a man for his vodka bottle no matter if im larger than him or not.
I tell him that as far as i was concerned the vodka was anasthesia just to avoid a fight.
He gets seen, the doctor wants a scan to co er her ass and when he’s told he’ll have to wait for it, he leaves because he knows they will use any excuse not to see him so it will take forever. I try negotiating but he’s right. He’s so fucking right in everything he says.
He leaves against doctor’s order and I am the idiot having to follow around the people who did this to him.
I’m the only guy who he’ll talk to and also the only guy who wants to be there. He got treated poorly, he didn’t get his follow up and he’s not gonna seek out his own doctor to get his results and his own doctor might be a fucking racist too.
I keep going back to it. I know i can’t like fix racism, but he was done so wrong and I couldn’t make it right.
Thanks for posting this. The discrimination doesn’t even apply to me but this resonates with me anyway because I’ve been getting the runaround for a long while now and it’s wearing me down. I’ve been admitted to the hospital a few times recently but never a diagnosis for the aspects that are actually life-ruining because those are outpatient issues and I am consistently not heard in outpatient. I don’t know how to summarize the details of how I am suffering in just ten minutes, I have no idea which details are relevant and which aren’t, and no one with the knowledge to help has more time than that. I try to work out guesses before each visit of what symptoms might be a clue, come in with a narrative to focus on, but sometimes I just feel defeated and take a few months to regroup.
In my case I’m not sure it’s even the fault of anyone I’m interacting with, the people pushing me aside are generally burned out and overworked. When I’m in the moment though it’s hard not to feel neglected. There have been moments where I have to remind myself that healthcare professionals are not a monolith working in lockstep to push me aside.
I haven’t opened these megathreads before because I’ve perceived the intended purpose as a safe space for the disabled, which I ostensibly am not. In reality I’ve been functionality disabled with recovery just around the corner for two and a half years now. It’s becoming harder not to look at my medical issues as a legitimate disability, even if I can’t say what they are and no one will validate me on it.
A safe space for the disabled also means that we can share our burdens here. It’s incredibly difficult to admit to yourself that whatever it is you’re suffering from is disabling you in any sense. To go one step further and admit you’re disabled takes a lot of strength and courage, especially in an environment where being disabled is almost always treated as something “to be avoided”. That’s one of the reasons why we have the mega, so that you and everyone here can talk about these experiences, struggles and (internal) conflicts.
I wish there was a solution I could present to you that would help you get checked with the time and care you need, but unfortunately I can’t. All I can do is encourage you to keep trying, even though I know what you’re up against seems insurmountable. Sending you a lot of love, comrade, and remember you are always welcome here.
The emotional hurdle for me is that it feels the opposite of brave. I’m inclined to look at the most extreme, visually evident disabilities and say I’m nowhere near that limited so calling my issues a “disability” is trivializing how desperately others need accommodations by playing up what I’m enduring.
I can walk through rationally why this mindset isn’t reasonable or healthy, but I’ve internalized so much invalidation that it’s hard to shake. Right now I can barely leave home so I can confidently state this is legitimate, but the instant my symptoms ease up I start believing I’ve been dramatizing the whole time. I know I’m wrong when I start believing that, I have so much evidence now to point to, but the emotions behind it just don’t dissipate.
It takes time. I can tell you that I sometimes feel like I’m only pretending to be disabled, even though I have a confirmed list of proven disabilities. I think this feeling of “I’m trivializing other people’s struggle by calling myself disabled” is a result of our conditioning - we’re always shown people who have it worse, or are reprimanded for needing help even though we “look fine” or some other nonsense. It’s a process of unlearning these beliefs because they have always been wrong, but it’s not like you can magically just say “I’m disabled and I need help” and suddenly everything is better. That’s what I meant when I said it takes strength and courage. You don’t just have to admit to yourself that you need help because of a disability, you also have to sit through a lot of waiting, degrading and belittling until you get a chance for help.
Again, I have no idea how to unlearn these structures, and this is how I’ve approached this problem for myself: I’ve usually just tried to stop myself from thinking this way and ask myself why I feel so bad when I think of myself as disabled. What I know by now is that none of the reasons have anything to do with my disabilities or myself. All the negative emotions tied to it come from what I’ve experienced others say or do to me, or the general difference in treatment I get when I tell people I’m disabled. Once I got there, it started becoming easier to accept disability as a label for myself because I know it’s true and I chose it, not because someone else tells me what I am and am not entitled to.
Hot dogs are an insult to humanity. Doesn’t matter what type: Beef, pork, vegan, they’re all ✨DISGUSTING✨
Get a REAL sausage, not the squishy gag inducing tube things.
