Hello everyone, I’ll be hosting the megathread while un_mask_me is out.
I completely forgot I had to post it until just now.
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.
Any fellow Autistic folks know how to “focus” what I “hyperfocus” on? I realize I’m feeling useless not because I am not doing anything, but becausey brain decides this week is “sort the Pokémon cards” week. If I hyperfocus on my work it’s great, but when it’s other things I inevitably feel guilt and shame.
I’m afraid of being chronically unemployed & unhirable & a failure at life 😬
The price of my meds went up. Roughly 240 american dollars for my monthly dose of just one of my pills, and these used to be my cheap meds. Mumble grumble. I’ll manage. But damn.
They used to be 20 smackers! The price has gone up steadily. It feels like i’m being pranked.
Hiya, is it alright if I vent about some additional mental stuff I just realized a bit ago (even though I prob should’ve realized it much sooner)? Just wanna make sure I’m not intruding, don’t think I’ve posted here on any of my old accounts
You are always welcome to share your story, that’s what the mega’s for
I’m going to see a psychiatrist so I can get more testing for autism. Maybe I could pull up the essay I wrote about why I think im audhd.
we think the fact u wrote an essay on it is proof on its own
cw drugs/brief discussion of suicide
i know we don’t lean too heavily on cws here in the disabled mega but i felt it was worth being extra conscientious just in case. anyway turns out quitting weed and actually taking my adderall has put a serious dent in my depression. i don’t even think i want to kill myself anymore? my social skills are sort of coming back? wild shit
now i just gotta deal with the regret of wasting the last 20 years shackled to various substances and dealing with regret is kind of my bag, baby, so we’re in promising waters!
as always, i wish you all the very best and hope for good things to come to you, whatever that may mean for you
i have once again defeated a psychiatrist in the battle of being too complicated for them to diagnose
Psychiatrists are all useless. I saw a book advertised called “Psychotherapy won’t help you: Mental Health, Mind Control, and the Exit Door You Were Never Meant to Find” by Marina Karlova, but I haven’t read it.
yea, i have been muuuuch more successful in improving my mental health by accepting im disabled and surrounding myself with kind and understanding people.
buuuut that doesn’t really work for capitalism since i’m not working, so i just need them to diagnose me so i can get aid, but they just keep on going “aw jeez girl ur kinda cooked huh”
Same here. All the therapy I received just consisted of being told to write lists of why I shouldn’t feel depressed or anxious and look at those reasons when I feel bad, or draw a picture of what I’m feeling today, or do a pointless guided meditation. Absolute rubbish and like you I only continued with this crap for the full 6 months to help my benefit appeal.
Thomas Szasz, you’re back?
mental health’s most powerful soldier > the pitiful forces of “psychiatry”*
*latest fad
(sorry if this is too cavalier btw, i know it can be grueling to find a mental health professional that understands you well enough to help)
(no it’s okay i thought it was pretty funny!)
I got the results of my scan for the shockwave treatment today. The damage to my leg and ankle is even more extensive than first thought. And they said they need to do another scan to do the foot because they think the damage extends further into the foot. The appointment for that scan in on Wednesday then I’ll hear when the shockwave therapy will begin. But this will be more expensive and eat into the donations I was given for the shockwave therapy. I’m also not having much luck getting donations for my transport situation. I need £400 and received a total of £61, which I’m grateful for of course, but because the car isn’t fixed and I had a hospital appointment today I had to spend £24 of it getting taxis there and back. I have another hospital appointment in a hospital the next town over tomorrow, I’ll have to use the rest getting a taxi there and back. That puts the fund for the car repairs back down to zero and means I still have no transport to my future hospital appointments. What am I going to do? You have to pay for hospital transport anyway and it’s too late to book it for my next upcoming appointments. I’ve already had to cancel an endocrinology appointment because of this. Why does everything always have to be so difficult and expensive?
I wish they would just legalise assisted suicide here. I hate the hypocrisy of them claiming they care too much about us to let us die, while they don’t care enough to make sure we can access enough food and medical treatment.
they’re like, “we care about you sosososo much that we’ll allow you to suffer to death! isn’t that awesome!”
i think people, especially non-disabled people, have this weird thought that being alive is fundamentally better than being dead and i dont really get it!!
It’s a sure sign that they have never truly suffered horribly long-term. Absolutely no idea what endless torture feels like, and no empathy.
i fucking hate the american medical system
might edit this and go on a rant, might not
edit: rant
so after getting our recent POTS diagnosis they… gave us physical therapy? not sure how exercise is going to help any of the symptoms of pots, or our worsening pain and fatigue, but okay.
we go and realize that this is just… something to condition and gaslight disabled people into thinking that yoga, exercising, and breathing exercises are gonna magically fix their chronic illness. they specifically encourage you to not take breaks and maintain doing all this stuff every single day to and specifically encouraging them to not take breaks and to maintain the same constant activity level to “recondition your autonomic nervous system”, which is definitely how that works. not taking breaks never hurt anybody ever, nope. oh yeah and if you start having symptoms make sure to do these breathing exercises thatll totally do something.
this just seems like a ploy to make disabled people blame themselves for not magically being better, because constantly exercising every single day will totally make me less disabled. “oh its not working? well thats your fault! try harder”. cant wait for them to start saying “theres nothing we can do and we are going to forcibly euthanize you”.
forgot to add that i have another unknown chronic illness, and depending on what it is doing literally any of this could be completely terrible for me.
oh and when our lung collapsed last year they literally told us to “walk it off” and that “it would heal on its own”. (it didnt, we had to have major surgery)
A few thoughts on your rant
First of all, I’m sorry you have to deal with this system, especially with your chronic illnesses. While yoga and the likes can help with some conditions, they’re not a miracle you can just keep doing. Whatever they were thinking about when prescribing the physical therapy, it’s not your well-being.
when our lung collapsed last year they literally told us to “walk it off”
Okay, and what the actual fuck is wrong with these people??? Angry on your behalf, you deserve better.
Is there any way you can get a second opinion or see another doctor? Anything the medical shitshow allows you to do?
this is a relatively good resource for living with pots
Your doctor is being neglectful by only suggesting exercise. Many people with POTS also have other health conditions that might get worse with exercise (like ME/CFS).
The 3 main things other than exercise that can possibly relieve symptoms are:
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Thigh high compression socks that push your blood to your upper body. Knee high aren’t as effective but often a lot cheaper so could still be worth a try.
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Taking 8 grams of salt per day combined with drinking at least 2,5 liter water to increase your blood volume.
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Very low dose beta blockers that slow down your heart rate. If you have low blood pressure then you should be careful with using beta blockers.
These solutions all don’t work for everyone but there’s usually at least one that helps relieve symptoms. The salt thing is obviously the cheapest and most accessible. If exercise doesn’t make you feel worse then I’d still try it but on the website I linked it suggests to start really slowly and work your way up. Taking rest days should really not be an issue and might even be better for you.
yea my mum has ME/CFS, no thankies x3 currently looking into a possible *EDS diagnosis, but theres sooo many EDS variations
im aware of most of this (and put a fair amount of it into practice), but thank you!!! just wanted to complain about the medical system from the viewpoint of “i know this isnt what should be happening”
Sorry if this was unwelcome unsolicited advice (I never know if I’m guilty of that but I’d like to know if I am!) I any case I understand the struggle with horrible medical systems and I think you’re right that doctors try to point to something to make it seem like it’s your fault that you’re struggling because they can’t do their job properly.
it was welcome advice, promise
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I really, really fucking hate that neurotypicals have latched onto the “you people can’t do anything” tweet because it just gives them an excuse to be ableist by referencing funny meme. I also hate that neurodivergents are using it as motivation because it is literally just shaming people for being disabled. You are not pathetic for being affected by your disability.
It’s so evil how something going wrong in life puts you on a downward spiral where everything just gets worse and worse. Get an illness? That’s not enough on its own, now you also have side effects from medications and poverty from being unable to work. And then being so poor leads to more bad outcomes, worse health, malnutrition, homelessness or insecure housing. Or, for instance, suffer a traumatic incident? That’s not enough on its own, now you develop PTSD and struggle to function, your whole life goes down the pan. Have a poverty-stricken childhood? Now you’re less likely to get a good education, less likely to earn enough money and even grow up with lower cognitive development, more mental health issues and more long-term health problems, all of which affect your life outcomes. And the lower you sink, the more society despises you and the less of a support network you have. Why is our society set up to make people’s lives worse when they have problems already?
Oh, and I seem to have developed incurable BO. For the past few days, my armpits stink no matter how much I wash them or how much deodorant I use. Is this an age thing? I was already an old hag, now it seems I’m becoming a smelly old hag.
Not doing so great, but friends and family are also having a hard go of it too, so I feel like I can’t say anything. My best friend in the whole world hasn’t texted back in close to a month, and I’m a little worried. Usually they don’t text when they’re having a hard time or really busy, which is itself a hard time. So I don’t want to bother them. I live with parents and sibling, and my mom is having a really hard time at work; things have been getting busier and harder lately and show no signs of getting better. Dad works a job he hates and works way more than he has to and decides that he can’t talk about this with anybody, so he’s always stressed and hard to talk to. With my sibling, I just don’t feel comfortable talking with them about my mental health concerns in that way. I can empathize or tell stories, but I don’t like going to them with my problems. Maybe it’s just stupid pride that I’m the eldest and should be the strong one or some shit. Also they’re moving out in a year or so, so I’d be losing that support soon anyway.
In any case, I constantly feel like dying and the main thing that keeps me from doing it is just fear it’ll be painful. My brain has always been the part of me of which I am proudest. Then I developed schizophrenia in high school, and I managed to find a way to be proud of myself with that. Then my cognitive abilities began declining. Now it feels like everyone is distancing themselves from me. I feel all alone and in pain. So here I am, screaming into the void. People here are kind, but there’s no substitute for in-person contact with people you know. Or even i direct contact with people you know. And I know people here are also suffering, so it’s probably hypocritical of me to spare my friends and family and not y’all, but if I piss off some of you, that’s hopefully a smaller loss to me than hurting one of them. I dunno. Sorry if I did offend anyone, I sincerely don’t mean to or want to.
I’ll chime in and say that things are noticeably worse then a decade and even five years ago. I notice this on a is itinterpersonal level and by the state of things in the imperial core. People seem to be burnt out and ground down without any real reprieve. Recreation and hobbies are barely keeping people sane while media and the spectacle are seemingly losing their tranquilizing power. Not completely but you can notice the cracks appear and the façade drop here and there. The unsustainability of capitalism is becoming hard to ignore even for tuned out and “not political” people. In simple terms, shits getting hard out there for us all comrade.
Putting your IRL community first is not an offense it’s what you should be doing in the first place so don’t worry about us comrade. Just don’t forget what Mao said and always combat liberalism wherever it appears lol
Yes, the fear of the pain is all that’s stopping me too. I made an attempt a while back and ended up in intensive care for 5 days, VERY painful. It’s actually a really hard thing to do successfully.
I know it’s not the same thing as real life, but we’re all here to listen. And most of us are alone and in pain too, so we understand, at least.
I’m so sorry you’re in that boat too. Life under capitalism is miserable; I hope we can throw off these chains in our lifetime and maybe we can see a glimpse of something better. May be a pipe dream, but one can hope.
1 hour waiting on the phone to talk to someone about my medical renewal, the wait music is driving me right now. I get this is the point but I will not hang up I rather they hang up on me at this point
istg the wait music is getting more and more distorted
I’m cursed in that I can only asleep while scrolling the internet (usually lemmy). But the internet is full of distressing content and sometimes I encounter something that makes me so distressed that I can’t fall asleep at all. Real gen Z shit.
This is why I try and stick to just a few websites that aren’t likely to have to much distressing stuff on them.
I sometimes just scroll pictures of animals doing cute shit or videos of stuff I like as an alternative, but it doesn’t feel right. it’s missing something. I shift to the the unfiltered garbage internet with all the upsetting stuff when I try to just have a good time. I curate and it ruins it.
My doctor went to the same school as me so he asked me about my extracurricular club activities. I told him i was probably gonna join the pediatrics or the surgeons club, he asked me about another club and I said that it sounded super boring and he said he used to head up that club.
Fucking whoops.Surgeon club practise sutures on children’s broken stuffed animals. As in children bring in stuffed toys that lost an arm or something and you practise suturing it on, and then you put a bandaid on the stuffed animal.
That’s so adorable
It is literally the best thing ever. Imagine a hundred kindergartners queuing up to have their toys fixed and they walk out with their little teddies in bandages as they go out to play.
Last time the kids who had already had their toys fixed or were too far back in line played a traditional kids game (I don’t know if it has a name in English? It’s sorta like team catch where you run from end to end of a place?) in the courtyard and all the fixed stuffed toys were lined up on the benches to serve as spectators.
