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 😬
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:
-
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.
-
Taking 8 grams of salt per day combined with drinking at least 2,5 liter water to increase your blood volume.
-
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
-
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.
Debating getting a phone shaker that’ll let me hatch eggs in pokemon go without walking.
Feel kinda weird about it because obviously I’m not doing the walking but at the same time if my chronic pain let me I would love to be able to go on walks more often :/
that sounds like an awesome idea
it’s not like getting the phone shaker stops you from walking, but it allows you to continue to enjoy something despite your disability. i think that’d be a really good aid that’d probably lead to more walking in the long run, not less
Yeah the more I’m thinking about it i definitely want one
Hey, no need to feel weird about it. If you’re in pain, you’re in pain, and the phone shakers sounds like a lovely idea to hatch the eggs.
Thank you for the reassurance, I think I will eventually get one
You could use your phone as maracas if you feel like you want to justify it with some light exercise
i have once again defeated a psychiatrist in the battle of being too complicated for them to diagnose
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!)
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?
How do I draw the line between accommodating a fellow ND's needs and drawing healthy boundaries for myself?
I’m the house manager at a sober living home, and there is a new resident that’s been driving me up a wall recently, and I can’t tell if it’s me being ableist or me being tired of being taken advantage of by someone who refuses to do some growing up.
He’s an autistic trans man, and talks about nothing but traumas. He’s escaping a bad domestic situation, and he talks a lot about it. On one hand, I know he needs space to talk about it a little bit. On the other hand, it’s literally all he talks about. Me and someone else will be having a completely normal conversation and he’ll just interrupt it with “Oh yeah, insert x trauma here” and half of them are ones he’s already spoken about at length repeatedly.
He also needs me to constantly remind him of things. Now I’m not above needing some reminding, so this is something that I’m happy to do for him, but some of the things and the frequency of the reminders seems a bit excessive. For example, I have to remind him of how to wash dishes because if I don’t he won’t clean the outside of the dishes or won’t use the sponge to scrub them. This morning I had to remind him multiple times to text sober living staff to get his proof of residency, but he didn’t do it until we were in line for a food bank. When he was waiting for a text back, he told me she hadn’t texted back multiple times, each time I just said “She’s a busy person, there are 15 other houses”. I’ve had to remind him 3 times in the past 2 days of restrictions on his public transit account because he missed some rides. He’ll try to book more rides and start freaking out that he can’t book rides, so I have to read the message that pops up on his phone out loud over and over again that explains what he can do (he can still book rides, just two at a time and not a certain number of days in advance). I have to remind him of what time his rides are even though there’s a list of his ride times on his phone. I have to remind him that the laundry machine is still running so he doesn’t try to open it while it’s locked and break it even though there’s a light on there that shows when it’s on. He asked me 3 times if it was going to rain today, each time I looked it up and told him the weather said no, but 30 minutes later he’d ask again. Yesterday I had to show him how to put things in cardboard boxes. Like I said, some of these things just seem ridiculous to me, but I’m not sure if I’m being ableist and should accommodate all this or if this is just someone who refuses to grow up. This is someone like 5 years older than me, he has multiple children.
Experiencing trauma can contribute to memory issues, unfortunately. I’m not sure what a great solution is. That sounds hard.
But I’d say at the very least, it’s appropriate to reinforce that bringing up trauma can be retraumatizing to other people and needs to be kept to therapy.
Yeah, right now I’m trying to be understanding. A lot of the people who have came through the house that need a bit more assistance gravitate towards me because I am patient with them no matter what, like I didn’t lose my cool with him at any point. But I also have a habit of bottling things in and just snapping at some point, and I’m trying to avoid that because then I’ll actually be an asshole and it will be beyond what is justified.
He’s a nice person at least, and that makes me a lot more patient with him. I’ve had much worse housemate before, but this is the housemate that’s been expending the most of my energy because being as supportive as they need so far has proven to be harder than watching after my autistic children when I was a step parent.
Good for you for sticking with it. Maybe try to set aside some time for a conversation where you’re like “I’m happy to help you with X, but also there is a lot of shit going on in my life too and so I can’t help you this much with Y or Z.” Even if his behavior doesn’t change much afterwards, clear communication might help avoid resentment on your part.
Thanks to he help I received on mutual aid, I was able to have the scan for the shockwave therapy today. They scanned the area that’s causing me the most debilitating problems, all around the achilles tendon. It was quite nice actually, it felt like a massage. The scan confirmed damage to the area but the operator of the machine said that doctors or whoever deals with this need to check the scan more thoroughly and I should hear back from them in about 2 weeks about starting the treatment. So at least the ball is rolling towards getting help now. But why does everything always have to take so long? I was able to get some orthotics inserted into my shoes too (at least my feet have healed enough from the surgery to wear trainers now) which will hopefully help.
Ass covering. I remember once I was at the department that does NCS and as the patient left the doctor told them they’d have to wait a couple of weeks for answers, then once the patient left she turned to the med students and said “So you wanna hear what he’s got”. In most cases where they do tests like that the doctor (And often the nurse or whomever) performing the tests can interpret the results pretty well, but for a lot of good reasons these test results have to be run by someone (Depending on who you are and where you practise it’s different, often it’s your attending, here you need to bring it up in the plenum meetings that happen at the end and start of every shift and confer with a specialist). So even if you do know, you can’t tell because if you say the wrong thing and you didn’t check with the one who has to okay it, it’s your ass. And it’s your ass in a career ruining way. And in most cases it’s better for the patient too to wait that extra time to be more sure that they don’t have to be issued a correction per mail or something.
Makes sense, but it’s annoying. Why don’t they just train all their staff to interpret the results properly?
In one sense they do, in another sense it would be impractical.
It takes like 5 years to specialise as a doctor (Sort of averaging it out here, since it varies by specialty and country), and that’s after your original doctor training and working as a doctor full time for years, and whatever extracurriculars you had to also do (phd-mds are common, in part because some specialities are very competitive).
Expecting that kind of specialisation from everyone who simply operates the machine is not practical.
Plus even if they do have that level of specialty, they still have to bring it up to colleagues to double check, since everyone makes mistakes (They do here anyway).In the other sense, everyone involved in using the machine received at least some training in how to interpret the results and may have years of experience doing so (There are techs who have logged more hours staring at test results than senior specialists). But they are still not specialists
I’m just frustrated by the entire medical profession. Everything takes ages to resolve, many things never get resolved. Meanwhile my life is down the drain.
Your frustration is both warranted and understandable. Especially because the entire healthcare sector is treating you like garbage. I’m just explaining the process.
tmi and suicidal ideation
I’m probably somewhere on the ace spectrum. I settled on demisexual for now. My partner is hypersexual.
So we have sex once a week, which was agreed upon via therapy. I guess that is not enough and now my wife of 13 years wants to either have an open relationship or get divorced.
I have been going through severe burnout/meltdowns again and am almost as depressed as I’ve ever been(again). I’m personally trying to figure out how to keep going and not kill myself because we have 2 kids together. I do not want to do my job anymore but don’t want to quit because I need money. I also don’t wanna spend 2 years agaon finding a another job just to get burned out 6 months later. My web dev business is not doing anything at all and I’m even suffering from skill regression so now I feel like a fraud regardless. I’ve been dissociating with video games and music to deal with my depression and neglecting chores just to get through but even games and music just feel numb now. I come home from work super fucking pissed and unregulated and end up yelling at the kids all evening. They house is a fucking mess and I’m afraid my youngest is gonna break our new tv after finally getting it replaced. He broke the last one by throwing a sippy cup full of milk at it. I have anger issues, I’m burned out. At work I basically have one solid 10 hour meltdown each day that is now starting to take a physical toll on my body. I think I broke my toe from it. I have a scab on my knuckle that keeps breaking open and I’m sure it’s infected(or close to, it won’t heal). I can’t walk the next day after work and every day I feel like my back is about to give out. I have a college degree and graduated top of my class and can’t even find an entry level position for my field. But that doesn’t matter anyway because I’d just get burned out after 6 months and get fired anyway. Also after 8 months of trying to organize, my PSL chapter is down to 3 people and one isn’t even active and the other is a radlib. Another org literally stole our onboarding process and all of my onboarding candidates, several right in front of me…
But my wife is talking about divorce or open marriage because I’m mentally disabled. If she leaves, I’m homeless. I don’t have anything. I’m $70,000+ in debt. I have no cash to spend and nowhere to go. My car barely runs. My computer is a piece of shit and that’s the only possible source of income I’d have if I lost my job, but again, no one wants to pay for websites. I’m too old to start over too. I donno I guess that’s the rant. I’m gonna go do drugs or something now.
Oh Roux
I am so sorry, this is literally the worst of all rolled into one. Have you tried telling your wife how you’re feeling? And how much what she suggests scares you on top of everything else?
Does your therapist have any ideas to help relieve the stress? Work itself won’t become easier magically, we all know that, but maybe there’s a way to make it mentally bearable. Then again, I’m only hoping here.
Is your youngest old enough to understand they shouldn’t throw liquids at electronic devices? If yes, maybe talking to them and explaining why it’s dangerous could help. If not, well… hopefully, they’ll grow old enough to understand soon.
In general, if you come home stressed and find yourself yelling at the kids, have you tried talking to them about how stressed you feel at some other time? I don’t mean unloading your burden on the kids, naturally, but maybe explaining how exhausted you feel might help them give you some space.
As for chores, these have to fall under the bus if everything else is falling apart. I’m a big fan of cleaning and keeping everything tidy, but if the psyche is brittle to a point where the slightest push can break it, I don’t think doing the laundry ranks high on the list of important things to do. Maybe you can talk to your wife about that too?
I’m just thinking out loud, trying to find solutions, but I honestly don’t know what you can/could do. I just hope that talking to your wife (and your kids) might help make you and them feel understood. Don’t give up, I believe in you.
I guess I get to move out of my house and find someplace else to live.
Wait. We’re you unsatisfied with your place? I don’t remember that.
My wife left me. I officially have nothing now.
jesus christ. you don’t deserve this and i’m sorry it’s happening to you. i hope in time you are able to recover and flourish.
Honestly I don’t think I deserve much of anything. I’ve spent 42 years trying to find happiness and I guess I’m still looking.
7·11 days agoYou deserve good things roux.
Where are these good things?
Idk, that depends on what is good for you and what you want. But I agree with Edie and Kuori, you deserve them either way.
good luck
I’m incredibly sorry to hear that. I wish there was anything I could do.
Roux, I am so sorry
