::: spoiler What's up disabled megathread!!!! CW depressing and shitty stuff from medical and benefits systems etc

The day of rental hearing approaches, so we'll see how empathetic a judge is to some dweeb with no diagnosis carrying on about being in chronic pain 24/7. My disability application was denied twice so I'm talking to a legal place about that, which is very epic. My doctor, and my dad, and everyone else seems to have the utmost faith that the system will not fail me despite my lack of diagnosis, but my chances seem very low honestly. Like, the benefits places, they reject people who HAVE diagnoses for heavily life-impacting disabilities, right?? What fuckin chance do I have? Please comment if you, like my doctor and everyone else, think I stand a chance.

As stands there's pretty much no money, I applied for the other fairly insufficient benefits again in the meantime but man. We are pretty screwed, the wife and I. Lose my job against my will, and the whole thing comes crashing down. Work yourself into the dirt to die impoverished, I guess. I also called a job place I was recommended, because they apparently help disabled people find jobs. They didn't pick up at 2:30pm on a monday, again absolutely epic.

It's not goin that well I guess =) :::

Hey everybody, hope you're all holding up ok. Things irl for me have been...painful...and my spoons dwindled to a single, fucked up baby spoon. I miss you, had to say hi because I think about y'all a lot and appreciate this community so much. Keep lovin on one another, keep pushing forward, you're all wonderful and amazing people.

i cut off that toxic friend, and surprising to me literally every mutual friend i have took my side? like they didn't take the path of least resistance and wanted to still actively engage with me even tho i had left the friend group?? super not used to that, lmao

Now I've got an extra stress on top of everything else. My landlady says she is considering raising my rent - I mean I haven't even won my benefits appeal, I already owe money, and if I win I'll still be struggling, but now maybe the struggle will be even worse. And there is nowhere cheaper, browse rental listings sometimes. Every day there is some new stress to deal with, I truly feel like the universe is trying to push me to $u1c1d£.

As for my latest mutual aid request to buy supplies for my upcoming surgery, one person gave me a contribution towards my surgical supplies cost but I've had no other responses to my mutual aid post. I'm so grateful someone came through but I still can't get all the supplies I need. It looks like I'll have to keep posting and posting. But I think people are sick of me asking for help. I cross posted my request to lemmygrad and got 23 upvotes and one response. Meanwhile someone else posted a request for financial assistance and got 92 upvotes and 7 offers of help in-thread. I'm trying to work out whether I'm just less popular, whether I have asked for help too much and people are sick of me, or whether they don't think what I need help for is a good cause. Maybe I'm seen as a taker who never gives back but I've got nothing to give.

And I'm so stressed about the issues I'm having with my thyroid meds. The increased dose is making my heart symptoms worse but the lower dose makes me so tired I keep falling asleep. Then there's all the stress about my benefit appeal and the fact that the government are making it even more difficult to claim disability and threatening to send people to work even if doctors say they're unfit. And if I do manage to have my upcoming foot surgery I'll be back to difficult dressing changes, possible infections again and not being able to wear shoes for who knows how long again. Which, on top of everything else makes my grocery bills higher as I then have to order for delivery as I can't go out. I just don't know how much more I can take. I don't even have friends or a support network in real life, this is the only place I even get to talk to people.

fuck me people started doing april fools jokes early. i hate april fools so much. just the worst day of the year to be autistic.

I started studying for my exam a whole ten days before the date! Granted it took me four days to read one text, but just now I finished that text, started and finished a second one! Huge L for my adhd, huge W for my grades

i decided to look into system stuff to help my friend who has just realized they're plural, and man the casual denial about plurality... existing? is so fun! people really see that there hasn't been much research into plurality and go "well that must mean all these ppl r faking because ???? they want attention ???????????"

idk, i've been too nervous to pursue a DID diagnosis before, because I've had a doctor who straight up didnt believe in it. i could bring it up to my therapist, but im nervous to because i can't replace them if they end up being a dick about it, lol. but that said, it'd probably be useful to pursue for disability aid reasons

ugh idk ill think about it and then probably put it off for a few more months

doing the first thing that is going to actually use up a fuck ton of executive function in like, a year

i don wanna... .. . .. .

::: spoiler bad vent about performative solidarity & tdor lets celebrate our trans brothers sisters and siblings except for you, the disabled ones with medical vulnerabilities. covids over sweaty i need to go to my concerts and parties to live my best girlie life, you just stay in your holes k? k :::

might be time for me to again, trump shit is getting to me lol

unmedicated bipolar here (pretty sure I'm treatment resistant). I feel so depressed and stuck. I have a flexible wfh job that I keep putting off due to not being able to focus.... the guilt is unreal because I know how fortunate I am to have that flexibility.

love and best wishes to you all.

I can't believe just how little some people understand autism, it's seriously infuriating (applies to other disabilities as well, but this case was autism).

I’m gonna be up all night cuz I think I got the flu 🎶

I hate menstruating so much it's unreal

In pain, bloated as fuck, pimples everywhere, no energy or motivation, constant mood swings and flashbacks to trauma (the flashbacks may not actually be menstruation related idk), stained another pair of pants and a towel, irritated at everyone

Oh Saturday, I hardly knew ye ::: spoiler CW meat and animal products Starting my day with an autistic meltdown because someone decided to cook and burn pork sausage without the vent in the kitchen running and the scent permeated everything in the house to the point that my room now smells like burnt fat and flesh and smoke and it makes me want to rip my hair out and puke :::

Hope everyone else is having a better day

I had another unpleasant incident at the pharmacy. Last time the pharmacist complained at me in front of everyone about how much my prescriptions cost the country and tried to make me feel guilty about it.

This time they complained again about something different. I take thyroxine, and it's a very difficult drug to live on. If my blood levels fluctuate even a little, I get terrible side effects, so bad they have ruined my life. I find that changing brands each time causes my levels to fluctuate, so I always stick to one brand, Accord. I go to so much effort to make sure I always get Accord. I have the doctor type "Please supply Accord brand" on my prescription, I had it put in my medical notes, and when handing the prescription to the pharmacist, I always check they have the Accord brand in stock, and request that they put that in the bag.

I did the same this time and they said they would dispense Accord. I got the bag home, opened it and they had given me the Teva brand. I've tried this brand before and it did not agree with me at all. I took the bag back, explained the situation and asked for Accord instead. They did change it but not before having a go at me in front of everyone in the shop and blaming me for the mistake. They said it's my fault for not opening the bag and checking they'd given me the right thing. Several pharmacists ganged up on me and tried to guilt trip me about wasting NHS money, saying that now I'd taken the teva brand home and brought it back they would have to throw it away and it was a waste.

I thought this was unfair after all the trouble I go to to get the correct brand. I pointed out that the prescription they were given says "Please dispense Accord brand" on it, and I had checked with them when I handed it in that they were giving me the correct brand and they confirmed it would be Accord. One pharmacist angrily said "It doesn't matter, it's your responsibility to check."

Why is it the patient's responsibility to check that the pharmacist is following clear and repeated instructions? Not to mention I had about 8 other medications in the bag, and the bag is paper, sealed with sellotape. I'm supposed to rip the bag open in the shop, tip out all the meds, check them all and then carry them away loose just because pharmacists can't do their job properly?

And I realised that my medical exemption certificate was in the purse that was lost last week, so now I have to apply for a new one. Why does everything always have to be difficult?

I'm looking into meds! I've really been struggling with ADHD and Anxiety a lot for a while, so this is a long time coming. I'm hoping they'll help me function better, because wow does it feel like I'm dysfunctional a lot of the time, even compared to other neurodivergent people I know IRL

good job, it was a difficult step for me to acknowledge that i was so dysfunctional i really needed that help

just keep in mind you gotta be patient in finding the right one for you. i've been trying meds for a year or so now and am still not happy (tho it's better than being unmedicated), tho i might be treatment averse due to the autism idk

someone should invent paperwork that doesn’t completely suck ass

Been to the psychiatrist and got some methylphenidate to try. The psychiatrist was very aggrivating though, his response to me talking about how I'm grappling with accepting that my issues aren't entirely self inflicted and how I was hoping that meds would have a positive effect so I could tone back the ol' self hatred was to tell me that "The meds won't solve everything, you still have to try". Took a fair amount of restraint to not start going at him and his condescending attitude at that point.

Luckily he is just the guy who signs off on the drugs though. The other people I've interacted with so far have been pretty nice.

Celiac's disease is possibly the easiest to handle except when you've fucked up and don't know what caused the issues. Brb crying in pain.

After more than a week of having the flu I still feel like shit but at least my fever’s gone.

My landlady has got to be the rudest, most unpleasant person I have ever met. If it wasn't for the fact that with no current income no-one else would take me, there's nowhere cheaper and I also don't want to leave her little dog because she neglects him, I would just go. She always has a horrible attitude, is always in a bad mood and I literally can't talk to her without her rolling her eyes, getting angry, making a contemptuous face (literally no matter what I say), refusing to turn the extremely loud TV down when I'm trying to talk to her and being a total b1+(h for no reason.

I found a website that gives free samples of beauty products. I got a free bottle of moisturiser from there. However, it didn't agree with my skin. I didn't want to waste it so I decided to ask my landlady if she would like it. I went into the sitting room where she was watching TV and asked "Do you ever use moisturiser?" (because I didn't know if it was a product she would be interested in) and she as usual refused to turn the TV down, misheard me and angrily said "What? No I haven't used anything in here." After several more attempts to explain what I was saying, and eventually offering her the moisturiser, she snatched it, looked at it, made a contemptuous face at it and then put it beside her, clearly intending to keep it. Never said thanks, and as I walked out of the room I saw her face, she was looking at me now with contempt, annoyance and disgust.

I regret giving it to her now but who else could I have given it to anyway. She's such a bitter person who takes her bad temper out on me because I'm an easy target. One of the great joys of being severely disabled - you end up in poverty and then have no choice but to make do with shitty miserable living situations. My life is just a never ending series of minor unpleasant incidents, never ending additional health and financial issues which all just add up and snowball into a huge pile of sh!t. It means that an interaction like this, which probably wouldn't bother most people, they'd probably just think she's rude and move on, seems overwhelming to me because I can't get away from here and it's yet another indication that my life is always going to be filled with unhappiness and stress about every little thing, and most people I come across in real life feel nothing but contempt for me because I'm a penniless burden on society.

Hi everyone! I promise I'll post my wins on these megas when I have them, it's just that I don't have a lot of wins and sharing my Ls is just really depressing

But hey if there's even a chance I can get my anxiety to lay off or even just become less intense I'll take it, that's a win to me

Hey everyone, I've been absent a few days cuz of health issues but wanted to wish you all a wonderful week. I know shit has been fucking Bleak lately. Know that we're still here, you matter, and you are loved

they're building an apartment block next to my building and the noise is driving me insane

it's going to be at least another year of circular saws whining from 7:30am till 5pm from Monday to Friday and till 12pm on Saturdays

I spend the whole day wearing noise-canceling earbuds and a pair of noise-canceling headphones over them

I am going insane and there is literally fuckall I can do about the whole thing... they're technically within allowed noise levels, it's not the loudness that bothers me, it's how annoying the noise is, like nails on chalkboard the whole day every day

So a few months ago I posted about accidentally letting it slip that I have autism at my job due to thinking I was getting fired. Since then, the dispatch guy I told that to has been seemingly treating me with kid gloves(see: infantalizing) which was ok if not weird, at first. But I guess now he's told everyone I'm autistic and that's why I'm decent at the job?

But like, the only good thing about this job, regarding autism, is that when I have meltdowns, I can do them without anyone around. He doesn't tell people about my gloriously violent meltdowns though, lol. On a real note, the only thing about my autism that has helped with the job is my ability to organize things in my brain and do my routes how I want to, which means working out of 3-4 bags sometimes. Most people don't do that because if you don't keep track of everything, it can get messy. I'm able to because of my "autistic super powers" I guess.

In any case, he's now told everyone I'm ASD and I kind of hate it. But whatever. I'm already getting burned out from the job anyway.

Now I've increased my thyroxine dose because of my tiredness on the lower dose, going back to the higher dose is aggravating my cardiac symptoms. There is truly no comfortable dose on this horrible medication.

And I have my next foot surgery this month. I'm going to have to make a mutual aid post to get the money to pay for the bandages. But I'm worried I'll get no response as I've already asked for so much help lately. What is this life? When does the struggle ever end?

One of my relatives who is a young girl is autistic, her parents don't know, and I don't plan on telling them, with my experience it's not going to do her any favor.

1:30 am? time for a stress bomb!

::: spoiler me autism/work concerns I do worry when I find work again that I'll miss something like last time of why I got laid off. Part of me suspects it had more with the company sinking I was at combined with some good old assholery gossiping so they can keep their own jobs but like idk. My proformance review just said "involuntary low productivity" barely got any training and worked until my hands were numb. A lot of people kept asking me if I liked it there and I kept saying "love it here so much" hated it but work is work. No mention of pick up the pace etc only time something like that happened is all the new hires where pulled aside and told to work harder no singling out or anything.

Got my forklift cert in the hope I'd be more valuable but IDK feel like I'm gonna have to buddy up and chat friendly with managers if I got any real chance of staying. Doing the work might not be enough.

As much as I'd hate to go back to the same place it would be a blessing getting a ride there with my mom, save like a lot on gas. I know she talked with some head manager about me getting my name out, part of me feels ashamed I need help like that but with the number of applications I sent to nowhere maybe it's fine. I still think the place is sinking or at least I might be telling myself that so I don't have to admit I suck :::

I am changing jobs so my insurance situation is all fucky. I am really about to start macrodosing caffeine to try to manage not having my adhd meds.

Just got back from the dentist. I hate the dentist but it's mostly due to trauma from my dentist when I was a kid, having fucked up teeth, and never really being taught how to brush. So I've been working quite a bit harder to make sure I have healthy teeth. Well in any case, I took a stim toy and my earbuds with me to try to dissociate and it actually worked out pretty well. The bad news is, I have 3 cavities that will cost $605 to get filled. That's on top of the probably $2000 in care repairs I need done. My last few paychecks have been like $350... so yeah, being poor sucks.

lmao, a friend triggered a trauma/ptsd response in me because they were telling me what my feelings were even though i corrected them, and apparently me telling them not to do that was too aggressive (god forbid im not masking well enough during a trauma response) and i was projecting because that wasn't their intention

yea okay dude

edit: i have cut contact with them

I'm looking into meds! I've really been struggling with ADHD and Anxiety a lot for a while, so this is a long time coming.

Same hat. Have a meeting with a doctor this week after getting a diagnosis. Went through the depression route first but the SSRIs just made me build up anxiety harder to compensate for the anxiety relief, hope that this will help treat the underlying issue.

I'm dysfunctional a lot of the time, even compared to other neurodivergent people I know IRL

mood. anyway medication is a great step to be taking, so congratulations! hopefully you find something that works for you with a minimal of trial and error

I had a small argument with someone who is probably gonna be my boss' boss' boss' boss when I'm done with school. I make good decisions and am smart :)

Well, as I mentioned I lost my purse. Still haven't found it. I've been organising replacements for all my cards and all are going to be free.... except the concessionary disabled person's bus pass. I'm going to have to pay £10 for that and I have no money so I think I'm going to have to make another mutual aid request. Normally I'm loath to ask for actual money in case it gets me in trouble with the DWP but I don't see what choice I have. Well, my ferry pass replacement won't be free either, that was £20. These are the only ways I have to get around since I'm partially sighted and can't drive, and can't walk far due to my disabilities from my stroke.

Also diagnosed with a new issue today. I've had a swelling on my leg for a few weeks and have been trying to get a doctor's appointment, but the receptionist always turns me away. Today there was a new receptionist who said she would put me on the triage list, and finally I got a doctor's appointment. Turns out the swelling is phlebitis, an inflamed vein. The doctor said it happens when you get older. I told my landlady my diagnosis and what the doctor had said. My landlady said "Yes but phlebitis normally happens when you're in your 80s, not 41." So now on top of my usual problems I'm apparently suffering the ravages of an early-onset old age too. And this phlebitis is very itchy.

Still, on the plus side, the doctor was nice. She's new and I was a bit worried about seeing a new doctor but she was actually lovely. I won't be so apprehensive about seeing her in future (if I can ever get another appointment, they're like hens teeth now).

I really think the Universe actually hates me. As soon as one health problem gets solved, another appears to take its place. As soon as one money issue is dealt with, another crops up. There is just no end. I have recently been able to start wearing shoes again after my last foot surgery. After being cooped up for so long I started walking around outside each day. Now my achilles tendons are extremely inflamed. This is a problem I had 20 years ago when I was able bodied, fit and sporty, and was doing too much exercise. It got so bad at that time that I ended up in a plaster cast for 10 days. But now it's back, I can only assume that suddenly going from inactivity to some activity was too much and flared the old problem up again. Now I'm back to having to rest and avoid walking. Back to being trapped indoors.

Same thing with money issues. Some people came forward and helped me get enough money to pay for the things I need after my next foot surgery. Then I was contacted by the hospital who are doing the surgery and warned that my feet need to be in reasonable condition for them to do the surgery, which would involve seeing a private podiatrist to get things done that i can't do myself due to my disabilities and that the NHS doesn't do to tidy the area up pre-surgery. It costs £60 so I made another mutual aid request and so far I've been donated £35. It's been days and doesn't look like I'm going to get the last £25. I think people are tired of me, combined with the fact that there are so many people on there with worse problems than me, I guess if you have money to donate you would rather donate it to someone who is homeless or fleeing a warzone and I can understand that.

It just feels like there is some malevolent intelligence behind the Universe that won't let me catch a break or get a moment's rest. I really hate being disabled, I hate having to beg for help whenever I need anything, I wish I was completely healthy and able bodied so I could live a normal life.

Why are my bedsheets always full of crumbs even though I don't eat in bed?

Doing a group project for my Spanish course and, I mean, the dysfunction has only gotten worse since I made the post for this mega. There's an extra bit of work one person in the group has to do, and I can't take on the extra work, I really can't be the one to do it. I'm doing a bit better today (first day on ADHD meds yay! already a game-changer) but I'm still coming off of that, and I still have practically a week's worth of work to do in two days. I was literally brought to dysfunction by multiple factors inherent to me and out of my control, and yet I still struggle to use being disabled as a reason I can't do the work. It's a good reason, a completely valid reason, and yet I just feel like it's an excuse. Again, the "I'm not actually disabled" brainworms while [see what I said before]. I'm going to tell them why I can't do it, meds are actually helping a bit with the overthinking/spiraling aspect of anxiety, but I still get those feelings I mentioned. Hopefully someone else can pick it up, because otherwise it's just not going to get done

I read and interacted with some comments from a few days ago and I think I might be plural? We(?) might be plural? In high school I'm certain I was, but I thought I had returned to being a single identity after working through some stuff, but here and there I've noticed things that indicate otherwise. Examining myself and reading some signs of being plural, it really looks like I still am. What kinda sucks is that one of my closest friends and supports, this is one of the only things that wigs them out. They've helped me cope with my schizophrenia for years, probably over a decade at this point. But at the beginning, they were always very nervous about meeting my headmates, which to be fair, at the time, many of them were hostile. Since then I've brought this stuff up to them from time to time, and they seem nervous every time. They seem suspicious of every headmate, even when they're totally chill. Anyway, that's way more info than anyone asked for, but it's interesting. To me anyway.

The instructor going through veins and arteries is obviously autistic, and the professor shadowing her keeps having to reign her in from infodumping about stuff that isn't the syllabus. He's very nice about it, she seems ok with it. It's fun. This should be the standard dynamic for all my classes.

Don't want to repeat what I said in my last post in the old mega, but I could really use a lot of hugs rn

I don’t get the whole “I can say the r-slur again” because I remember high school in the late 2000’s also having a policy where using that word wasn’t okay, especially around the special ed students.

At the time I hated the rule despite being autistic myself but now I’m glad they did their best to enforce it.

The point is that the r-slur hasn’t been okay to say for a while and predates the “SJW” era

New ADHD meds “make me more autistic” (according to someone I know), a succinct way of putting it, and tic more frequently in public. Thinking about the tics just makes it more frequent though so it’s kind of a self-fulfilling cycle.

The usual stimulant side-effects are also there, although it has been better than the previous one I tried.

Still thinking about what to say for the next checkup in a week’s time. I will stay with the same medication for the time being probably, although I am thinking of a higher dosage.

Spending the entire day in real life masking, but atleast I get a few hours online where I mask there too

Gonna add tryptophobia to my list of diseases from trying to remember all these body cavities.

hurt my knee real bad last year. It still aches all the time but not terribly. I'm about to exercise without it hurting more than if I'm just standing around which is good

New mega for you all - https://hexbear.net/post/4592894