Disabled Community Megathread from June 16, 2025 to June 29, 2025

I don't know where else to post this.

I'm basically organizing between 4 different groups. 3 are local and one is the PSL. One group is essentially an offshoot of the local crowd from the 50501 protest last week, so basically running the gamut between lib and... radlib. Another group is mostly anarchist with me and 1-2 others that identify as Marxist. This group is very much in motion. The 50501 one is trying to figure out direction and currently want to focus on ICE rapid response. I have some tech experience and offered to help. A few of the others from the anarchist group are also involved. It's sort of a coalition, right?

Well, one member of the 50501 group is onboarding for the PSL chapter I started. Another potential member contacted the cops regarding 50501. I freaked and told PSL to no onboard that person because of the current situation with the FBI as it is. For some reason the person already onboarded decided to tell the rest of the 50501 group that I was collecting data from them and reporting it to the PSL. I do not know why they think I'd even be doing this. Why would the PSL even care or need the data? I woke up yesterday am to find that I was removed from the 50501 group and spend all day yesterday piecing together why. What I realized was that the onboarded person didn't seem to understand that since I was the person onboarding for PSL, I already have a list of potential candidates. I don't know how that got lost in communication but I guess it did. They ran off to tell 50501 group that I was collecting data wen it was literally me just saying I don't want to go forward with onboarding this particular person for security purposes.

Well, now I'm kicked from that group and still don't quite know how I feel about it. I was early in planning to do a reading group with a few of the people there to introduce them to Marxism and try to help radicalize them since a 50501 brunch lib protest isn't gonna do shit but let them wave a few flags and yell a bit. In any case, a friend in the anarchist group and I pieced together the whole story and they plan on talking to the person in charge of the 50501 group tomorrow to try and resolve things. And I'm trying to figure out how to talk with the nark that was onboarded to PSL. They literally did exactly what they accused me of doing and it's leaving a bad taste in my mouth since I considered them a friend.

Above all, I hate how high school drama this whole thing feels.

Thanks for reading my wall of text rant. I need a fucking hug.

This is so infuriating to read, but I do believed you're doing the best you can. Take a deep breath, you've got this.
As far as the nark is concerned, I do not know how I'd handle this, but if you think talking to them is a good idea, do it.
- Currently the plan is after my friend talks to the leader of the 50501 group, I'm gonna see how that goes and then either message PSL higher ups and talk about dissolving the chapter or removing the nark. Friend, who is all about direct communication suggested talking to nark and explaining the whole thing and asking their side of the story and I'm considering that but I need to cool off first.
  I feel like I wasn't great at vetting people, but also there is a weird dynamic with the anarchist being vocal about PSL(because, I mean they are anarchist and the schools of thought don't jive at time). I don't blame them for expressing their thoughts but I think it chased away someone I was gonna put in charge while I took a step back to focus on the Food co-op project. Now that's also seemingly off the table. I thought I was organizing material but this is really starting to feel like burnout and I don't think I can afford that right now.
  At the end of the day, I have a screenshot of the city's PSL chat for leverage since the nark won't be able to bring receipts. I might need to ask if the higher ups are ok with the screenshot. It doesn't have any sensitive info but it's literally like: nark joined May 30th, I posted about removing cop lover June 14th, and that's literally it.
  I hate that I'm spending so much energy on something so stupid though.

I've just received the date for my next foot surgery, it's this Friday. I thought I'd be on the waiting list for months but because of my state of health etc, they gave me a much sooner appointment at a much further away hospital. My landlady angrily agreed to drive me if I pay for the petrol and parking costs. So that's the third mutual aid post I've had to make already this month. I'm always worried people are going to get sick of me but I don't know what else to do.

I'm glad you're able to get in to get the surgery, fingers crossed it's the last one for a while. I'm sorry landlady is such a shitty, abhorrent person. Hopefully it works itself out and you can get the help you need. Sending some positive energy your way, love.
- Thanks so much. They actually offered me a cancellation for tomorrow but she said it's too short notice to drive me so Friday it is.

Well my sodding foot infection is back. They aren't even going to bother trying to treat it with antibiotics this time, since my immune system is so weak it can't fight anything off. I'm going straight on the surgery list again. God knows how many months I'll have to wait this time, it'll probably spread even further by then. Why is life like this???

Now I'll have to make another mutual aid post for actual money which I really didn't want to do, other wise I won't be able to pay for the post-surgical supplies. So ridiculous that the NHS doesn't give them for free.

I'm so sorry you're having to go through that again, comrade. My heart goes out to you. Hope you can get the care you need soon, and that you aren't in too much pain.
- Thank you.
This is so frustrating to read. Why tf does the NHS still exit if it doesn't cover anything, really?
I hope you're gonna get replies on your mutual aid requests and that your foot infection isn't too painful (and stays that way). This is so unjust.
- While I am disheartened that it's come back and I have to deal with this again, I am already totally resigned to life being unjust and an endless series of problems to deal with. I just hope the appointment isn't too far in the future as it'll get worse by then, and they can only use a certain amount of local anaesthetic at once. If I have to wait months and it spreads I might need multiple surgeries again because of this. I'm really just anxious about the finances involved, having to get the money for the initial supplies, maybe needing more afterwards for further surgery or more post-surgical supplies like more bandages and iodine. And also whether this will adversely affect my future mutual aid posts, I was planning on making a food aid request at the end of the month, making this surgical supplies post might make people sick of me, or if someone helps with the surgery supplies I might then get less help with the food aid because they've already used up their donation budget, etc.

I've just realised, I think I'm going through a midlife crisis. Lately I've been rediscovering the EDM music I used to listen to in the 90s, can't stop watching youtube videos of people clubbing in the 90s (the decade I started going clubbing) and watching videos of all the parks and streets I used to hang out on when I was young. Longing to go back. Wanting to change things and gaining new interests.

Just got back from my most recent foot surgery. It's spread and the left one was worse, also they were meant to book me a double appointment but had only booked a single, so they couldn't get as much done. They just did part of the left one today. So they've booked me three further appointments, July, August and Sept. July they can clean the worst of it and the next two will be for a final clean and so any hint of it returning can be cleaned before it spreads and hopefully that will finish it for good.

So now I've had to make another mutual aid post for help with that. People are going to get sick of me but I don't know what else to do.

Because of touching it, and touching clothes the infection has touched etc, it has spread to my right hand now too. This isn't the first time and it's never been so bad with the hands. That's just being treated with a topical ointment. But it's disgusting and exhausting though, dealing with this. And going to a different hospital further away wasn't easy, my landlady drove me in exchange for petrol money, thankfully someone came through on that. But the satnav didn't help much with finding it and my landlady was pissed off about how long and difficult it was to find. I will have to book hospital transport for next time as the next appointment is also at the further hospital.

If people are sick of mutual aid posts they can block the comm, or they can block you if it really is just targeted at you (Unlikely). Asking for help that you need is more important than not "posting cringe".
only thing im sick of is the situation youre forced in, friend. please try not to worry about posting too much! it's shit, the way youre treated, and it's not your fault this has gone on this long, it's theirs. you've got enough on your plate, don't post wary of haters. if any show up we'll take em out back and shoot em for ya!
- Thank you! I haven't had any haters on here but I've had two on lemmy. One read a post of mine about my financial issues and then spent weeks sending me messages promising help, but never actually sent any. He had a lot of strikes against him for bad behaviour towards other users already so he finally got banned. Another person on lemmy responded to a post I made about how I feel su1c1d@l sometimes because of my financial situation. He said if I was really serious I would have done it already. He then sent me unsolicited messages giving me detailed instructions on how to obtain the necessary items to commit su1c1d£, and how to carry it out. Other people complained about these public messages and they were deleted but he wasn't banned and is, in fact, a mod. It's really disheartening when even people who are supposed to be our comrades behave like this. That's why I'm always on edge and worried about posting aid requests (for instance a hater could get my email address and use it for some nefarious purpose) but I just have nowhere else to turn.

Considering how badly understood patient communication is, I almost want to learn to draw to make one of those "Difference between equality and equity" comics but for the difference between compliance, adherence and concordance* in medicine.

*Latest fad

But then I also realize that a great many doctors do not and have never given a shit about concordance.

It sounds like a good idea, despite the doctors being that way.
As someone who's only ever been on the patient side of things, what is concordance in the medical sense here? What sets it apart from compliance and adherence?
- Warning I'm going to be simplifying things a lot with regards to medical treatment. Medical treatment obviously refers to more than just taking a pill or doing an exercise, I'm trying to keep this light and as widely applicable as possible and you can feel free to substitute any intervention as necessary and you can obviously ask me to clarify or question or correct my wording. Also a lot of the wording may seem like I'm talking about non chronic situations but it applies equally.
  Compliance refers to how close a patient adheres to the agenda set by the medical professional. It's whether you take your medication as prescribed by your doctor, whether you do the rehabilitation as told, whether you do all the exercises your physio showed you. If you aren't compliant you are not doing as you are told, if you are compliant you do as you are asked.
  Adherence is active participation in an agenda. So if based on guidance from a medical professional you make lifestyle changes and stick to them even when not watched you are adherent. Adherence is you making a habit of taking your pills, it's making and following an exercise plan, etc.
  So in other words if you don't take a pill your doctor is telling you to take you are non-compliant, if you haven't made a habit of taking your pills as part of your regimen you are non-adherent.
  Concordance is the agreement between a patient and a medical professional with regards to their agenda and their understanding of their own disease process (uhh i forget what the english name for that is). It refers in totality to the process of aligning the doctors desired agenda and the patients desired agenda, the level to which the two are in alignment and the patients engagement with the plan set forth. So in order to have concordance a medical professional must take into account the physical, social and psychological premises under which you exist and help you reach a treatment plan and a common agenda. Conversely you must as a patient be an active part of the planning of your treatment plan, advocate for your needs, and be honest about your ability to follow any plan and vulnerable enough to take it into account when making a plan and in your discussions with a healthcare professional.
  So if you are actively changing your schedule to accommodate a treatment plan you think is ridiculous and which does not account for you as a person outside of the immediate list of symptoms you may be adherent, but there is no concordance. But if you helped set your schedule and as a result feel engaged in your own treatment and wish to follow it, there is concordance.
  Some people point out that the framing of adherence and concordance puts a lot of responsibility on patients rather than doctors, and that it may be a way to avoid responsibility for the outcome of patient care. Others point out that a compliance based model limits patient autonomy which is supposed to be a core value of patient care and is likely to be less effacacious.

Having massacred my guts via decades of alcohol abuse, I now enjoy having a panic attack every time I'm sick and something weird happens. I do not recommend alcoholism. It's quite unfun.

I've been ill over the weekend and mostly just drinking Gatorade, because I can't keep any food down. Today I had a bowel movement that came out blood red. Had a major meltdown until I remembered that I'd downed a few liters of red Gatorade since Thursday.

God I can imagine the panic. I'm happy you stopped drinking, and I'm proud of you for getting sober. You got this, and please get well soon

Did you by chance get yourself checked for long term complications? Maybe your stomach has some lingering issue. It's just a thought, please don't feel obliged to reply.

finally got over the "i deserve to have things not fully work" brainworms for long enough to buy a new phone. current one is 5 years old and keeps shutting off randomly so, kinda a long time coming i guess

Yey new phone

I'm happy you got over the brianworm for at least a bit. Did you choose a nice color?
- i just got a black one cos that was the only color available. but i got a rosegold case. it's a oneplus 10 pro

YEA SURE LETS SHUT DOWN ALL FUCKING PUBLIC TRANSPORT IN A MAJOR CITY TO PROMOTE BICYCLING. THAT MAKES SENSE. ALSO YOU CANT WALK WE'RE LITERALLY BLOCKING YOUR ABILITY TO WALK ACROSS MAJOR ROUTES TO MAKE ROOM FOR BOTH THE BIKES.

Update on my healing journey: I am more painfree than before, but I also haven't worked out these recent days bc the hot temperatures were making my surgical wounds itch and pulsate. I guess they don't like the heavy blood flow. But it's okay.

Now I just got my period again and the cramps are so much worse than the last few times. I'll be over here, melting into a puddle.

Glad you're a little better at least, hope the cramps ease soon.
- Thank you love
Itching is a natural part of the healing process, so itching itself isn't the worst thing. I don't know if that's a comfort though. You should ask someone to bring you goodies and rub your back during your period, I believe having someone do that is in the human rights charter somewhere.
- My doctor told me the same thing, so I'm not worried. It's just annoying, you know? Having an itch you can't scratch lol
  And I don't think it's in the human rights charter, but I sure think it should be in there.

Went to a social event. Had a short conversation with someone who sat with me. Still hovering around generally, and then leaving after a short time.

Going up to someone feels like a bad idea, introducing myself feels like a violation of their boundaries.

Honestly, I need things on a level playing field. If I'm in a group of any kind and two people are like, clicking, or already know each other, my brain really latches onto that. I'd prefer if we were all strangers, so I don't feel like I have to play catch up. But my instinct is to back off the minute I suspect that they know or like that person better than me.

Like if we were a group of strangers plunged into a scenario or situation together. Holy shit I'm going to go on Survivor so I can make friends

I get it. I will say thought that just going to a social event and hovering is still a step up from not going.
Going up to someone feels like a bad idea, introducing myself feels like a violation of their boundaries.
I totally feel the same, and I know you've also heard the counter of "It's obviously not. You wouldn't feel it was a violation of your boundaries if someone in a social setting said hi to you, so why would they". We just gotta work at it until it feels less wrong.

You may have stuff you need to do, but have you considered that if we don't make it impossible to cross from one side of the city to the other it'll hurt the bikes feelings.

Anyway I'm opening these fucking barriers and if one of these security dweebs tries stopping me I'm just gonna steal the entire barrier you fucking watch me.

It's the summer solstice party at Stonehenge tonight. I want to go, so much it hurts. I've wanted to go for years. But I don't feel well enough at all and anyway the trains are too expensive.

- Maybe next year or the year after.

In the past week I have eaten [half bowl of soup] and [less than 200 grams of protein substance] and the occasional leftover bread that's hard, I'm barely sleeping and my memory is getting worse.
I fear for a day that people would be right to not trust me for my decisions, as for the day I lost my trust in myself was years ago.

You gotta eat. Can you not afford food or do you have some other issue?
- The disgust leaves me with no apetite

I borrowed a book on how to draw and am going to spend the next two hours practising. I will keep practising for two hours every day until summer break is over.

Yay, you got this!
- Looking at the result of two hours of work I absolutely do not have this. But thanks for the support.
I want to learn to draw too! Which book do you have? I'm looking at doing Brent Eviston's online courses if I win my benefit appeal and finally have some money.
- it's not in English and based on 4 hours of practise it isn't working anyway. Although tbf I haven't really drawn since I was a pre-teen

thinking about cutting my hair short. i llike having longer hair when i dress up, but i never dress up anymore and the executive function means i dont brush it until it gets matted

BRB gonna try to art

I achieved something vaguely human shaped. Well... Vaguely vaguely human shaped.

Yey

any USian adhd homies have tips for how to more efficiently track down meds when your pharmacy decides to nope out of carrying the shit that lets you function reasonably well? when there was a backlog last time i called a million pharmacies and they all told me they didn't have any, is there a more efficient method than hitting these spots one by one?? i have a week and change to find a new spot which could be worse but im still tweaking about this

Unfortunately it will take a little leg work on your end, so there aren't a ton of options available depending on the drug itself. If you're getting them through a chain like Walgreens or CVS the pharmacist should be able to check stock for you at other stores and send your prescription there to be filled, but you'll need to specifically ask them to do this (over the phone should be fine). If you're getting them through places like big box stores (walmart, costco, kroger etc.) Your best bet is to sign up for notifications, either email or text. They should also be able to tell you if it's in stock at other locations but you'll probably have to call/go in person to get them to check/fill it. Last option I'm aware of are online pharmacies, like I know someone who uses ExpressScript to get meds mailed directly to them. They'll also have notification options and a search function to see if your meds might be available or if shortages are happening. If you're really concerned for missing days/needing extra definitely call your doc and ask if they can approve a 3-4 day "emergency" supply script to get you through a few days. Hope you can find what you need soon! (Also anyone else please chime in if you've had luck with something other than what I suggested.)

Hey loves 💙,

Just wanted to check in since my last post kinda got lost in the megathread. Things are still really rough here in Gorom Camp we’re trying so hard to clear hospital bills and find somewhere safe after our shelters got burned down.

I’m gonna keep replying to folks here with love so people know we’re not just here asking, we care too.

We still need about $825 to cover what’s left for safety, food, and medicine. I’ve updated my profile with a bit about what’s happening + my mutual aid link if anyone wants to help or share.

Honestly, every kind word or share right now keeps us going. Thank you so much for seeing us.

My mutual aid link is in my profile if you’re able to support or boost.

Sending so much love and strength to everyone trying to survive another week. Solidarity always. 🙏🏿

i am physically incapable of not spending too much social energy all at once and now im depressive again

Sending you some peaceful rest and rejuvenating energy love

showered for the first time in a month, I can feel my health deteriorating.

Med school is a way to redirect strivers without any sense of empathy towards places where they'll do less damage. Also the uni internal it system is designed with malice. It's literally evil. It's not just incompetent

I can't stop thinking about this post, and you're so right. I was raised by someone who would totally get that label today, and it really makes me appreciate the unicorn medical professionals who have actually helped me as an adult. Keep fighting the good fight, comrade.

i got referred to a psychologist bc the therapy/medicine aint doing shit lmao. i want to be upfront about the things i usually dont mention for fear of being pathologized (like being plural), but gosh am i afraid they're just gonna go

and turn me away for some special specialist i cant afford

Sorry the meds/ therapy aren't helping like you need, comrade. Sucks to start over with a new doc too, and all the unknowns that come with it. Hope you know there's nothing 'yikes' about you and that you're awesome
- thanks. i know im awesome, im just also SO far away from neurotypical im not sure if they'll be willing to try helping me lol

choice between waiting 3 years to get an autism diagnosis and access to help i need or paying $3,000

That's an insane price for a diagnosis. Like wtf
- where i live the price range seems to be $3000-$5000
  
  i don't know why autism is gatekeeped this way when adhd isn't they're like uber comorbid

I posted on here recently about a migraine that started as a weird menthol-tingling in my crotch. Well, it's back except in my feet. It started as a headache and numbness in the face, and a migraine pill got rid of the headache (mostly) but the menthol tingling has taken over my feet and part of my legs and won't go away and the facial numbness keeps returning. What's left of the vision in my right eye seems to be affected too.

When will they legalise euthanasia here? You wouldn't keep a dog alive in this state.

Are you diabetic? What about any vitamin deficiencies?
- No, I'm not diabetic. I get tested quite regularly when I got to the endo for my thyroid issues. And I have been diagnosed with multiple vitamin deficiencies and prescribed supplements previously. But since I started getting help on mutual aid I'm not starving any more so the root cause of the deficiencies should theoretically be gone.

I had an anxiety attack on Saturday that essentially wrecked me for the next 2 day. Now I have to go get a few cavities filled and I fucking hate needles so guess who's back? Anxiety! I'm bringing my earbuds and a stim toy with me so hoping I don't turn too much into a 42 year old baby.

The group I've been organizing with started their breakfast program this week. Yesterday not a single kiddo showed up.

I'm checking with them now and I guess this morning 4 kids showed up. We reached out to a local community leader and he spread the word a bit. I really wanna see this program take off! It's a first step towards our Food Co-op. We still need to get the website live because people are talking about it.

I'm gonna get my food handler license done probably Friday so I can start helping directly. I want to put as much effort into this as I can because if we start getting enough money from the Co-op, I get to be the first paid employee and that's gonna be substantially more rewarding than driving a delivery van for Amazon.

Hugs for the anxiety comrade
dental work is not easy. I was in the same boat a couple years ago and I told the dentist that I was borderline panicking and they gave me gas/extra numbing to make sure I couldn't feel anything and were overall sympathetic. Hopefully it goes quick and they're professional about it.
Yay on the progress with your program! Sounds like you're really making a difference to those around you. That's so great to hear that you'll get your food license soon, too. Hopefully it'll all work out in your favor sooner than later. We're rooting for you!
- I survived! I mostly freak about the needles and then after that it's pretty smooth. When I was a kid, my family dentist was a glorified horse doctor that hated kids. That's probably where the fear comes from. The one I go to now is actually pretty good. They waited until I was fully numb before drilling. I was offered gas but declined because it was $100 extra for it.
  If this food co-op does take off, we have a few other plans in the works. But I wanna see the co-op take off before the year is over. I think things are about to move fast and we are gonna need to focus on this first though.
Another hug for the anxiety

I just wanna add that I am so impressed that you're doing so much to actually help. Keep up the good work but also keep up the good rest, your anxiety needs the breaks as much as you do.
- Thanks comrade!
  Last Friday at our meeting, I had even mentioned that 2 of our comrades are starting go go into burnout and was vulnerable enough to share part of my autism diagnosis journey where I realized I was in severe autistic burnout for like half a decade. After I realized that, I took like 3 months of of life and re-calibrated. Now I take a mental health day once every other week or so to just chill and do low impact chores or watch movies. The group is working on ways that we can take the load of of them a bit and give them time to rest. We got a long way to go with this and can't afford to get beaten down this early.
  I think my anxiety is a bit more under control and the depression is a dull roar right now. I do always check in with myself too.

I was exhausted yesterday and im still feeling exhausted today

Here, love, a hug

Do you have any idea why you could still be exhausted? Like, something acute or is this something you're "used to"? In either case, I hope you feel much better soon
- Actute level of exhaustion, thankfully
  i think its a bunch of small things adding up and potentially my period but its been so irregular and weird for a while now but I dont have insurance so I cant get that checked out :/
  But thank you

I have made a ridiculous sandwich, ice water and I'm shitposting in the shade Gotta get back to doing something productive, but I'm still gonna be picnicing by myself :)

a ridiculous sandwich
Please elaborate, I love ridiculous food combinations!
Enjoy the shade comrade, and never stop shitposting
- Shredded carrots, radishes and cabbage, with jalapenos, soy chunks, olives and chickpea mayo and sweet mustard. I should not be allowed to make sandwiches, but I enjoy them.

Despite my slight headache I'm feeling much better today than I did yesterday.

Happy to hear you're doing better, love

I was gifted some unused yarn from an elderly neighbor and started crocheting again this weekend, so that's been nice. My arthritis was acting up after an hour, but something about the endless loops and knots reallllly satisfies all the disorders heh. Hope everyone is doin okay this week!

Ooooh I get the satisfaction feeling from the loops and knots, I have that when I'm sowing, it's divine. What are you crocheting? And I hope your arthritis doesn't give you too much trouble.
- Thanks! I'm doing an amigurumi octopus pattern I've had in a folder for a while now, it's so cute and I'm excited to make one again. I tried cross-stitch a couple times in the past but struggled with the needles too much. The crochet hooks help keep my fingers from seizing up too bad, so I can keep at it for 30-60 minutes without overdoing it. Are you currently working on anything?

If anybody wants to make a megathread at somepoint just say so

I'm willing to take the next one! Never pinned a post before so it'll be a learning experience lol
- Pinning is pretty easy. After you make the post, click the 3 dots for the dropdown in the comm feed and you will see "feature in community" toward the bottom.

My partner is drunk again. I'm supposed to get up at 5am tomorrow to drive her to work. The same thing has happened for the past 2 or 3 weekends, and so far she still has a job, but her drinking has cost her more than half a dozen jobs in the past few years and her behaviour shows no signs of changing.

I'm growing more and more resentful because she doesn't want to go through with any sort of addiction treatment. My own counsellor has offered to me to connect her with someone, and there's addiction treatment on-demand available at the local hospital, but she just doesn't want to do any of it.

I know that addiction is not as straightforward as just asking for help, but I've been out of work for more than a year and a half and can't find anything, while she hops from job to job like this.

There are times when I just want a break from watching her self-destruct, but she'd probably be on the streets if she wasn't living with me.

I have ADHD and am probably on the autism spectrum, and I know I'm not always easy to deal with. But she never tells me what she's feeling or what she wants, and it feels like any effort I make to support her, or even just keep an eye on her to make sure she stays on the wagon, ends up as wasted energy. And it's already all I can do to keep searching for work.

New Mega

Any good history books on the ancient china warlord period during the end of the Han dynasty?