Hello everyone.
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.
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.
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. 🙏🏿
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.)
I achieved something vaguely human shaped. Well… Vaguely vaguely human shaped.
Yey
BRB gonna try to art
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
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.
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.
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”.
Despite my slight headache I’m feeling much better today than I did yesterday.
Happy to hear you’re doing better, love
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.
It depends on what you’re eating. The menthol tingle could be a b12 or b5 deficiency and even if you’re not starving the exact diet could be an issue, or your medication could cause malabsorption (I don’t know your medical regimen). plus if you already have had vitamin deficiencies it probably takes more to get things back in balance and keep it there. Although you’d have other symptoms too. If it’s not a diabetes or a vitamin deficiency I would have said it sounds vascular, especially if you have limited mobility, but the face is throwing me there. Eh, I’m not a doctor and I probably can’t help. But most of the things that cause those kinds of symptoms are manageable, and you’ve already shown you can handle a lot of stuff. It’s not for me to tell you how to feel about stuff, but I think when you’re feeling things like how a dog would be put down in your place, it’s worth bearing in mind just how much you can and have handled.
I get B12 shots, but the B5 could be something to look into, they never tested me for that. Malabsorption could definitely contribute, and I have a very restricted diet due to the fact my cancer treatment has caused me to develop many food intolerances.
As far as being able to handle stuff, it just keeps getting worse. Within just the last few months my already terrible migraines have turned into hemiplegic migraines (which are like having a stroke, one side of my body stops working and feeling), and my mobility situation has gotten so much worse I am basically housebound apart from being driven to the shop and going in for a few minutes (and with todays foot surgery I’ll even lose that for a while). I’ve been having issues with my thyroid meds again lately too. Whenever I think to myself “OK, life is bad but I can tolerate this,” the universe says “OH REALLY?” and makes it even worse.
And that’s just the health, never even mind the financial issues that come with being disabled. Even on top of debt, a benefit appeal, now it’s even getting more and more difficult to get an adequate response to my mutual aid posts. I’m totally out of sainsburys vouchers and it’s gotten to the stage I have to make multiple posts to get a response. I don’t know how I can handle any more but still shit just keeps coming my way.
B5 deficiency is pretty rare because you get a pretty decent dose from easy sources, and if you’ve taken like any kind of vitamin b complex that has b5 in it you should be good on that. But you have faced starvation per your own testimony and that’s when any kind of vitamin deficiency can start to become a factor. But I’m not a doctor yet and I’m just hoping it’s something like that because it’s treatable.
But even if life is being shit, you’re at least surviving. You’re planning for future stuff you want to do, you’ve got things that are at least a little cool. I’m sorry it took me a bit to respond to you, but I don’t really know how to put stuff like that into words.
I woke up today and found a bald spot right at the front of my hairline. So I guess my hair is falling out too now. It’s been receeding at the front for a while but this is the first actual bald spot. Now I don’t know whether this is the cancer treatment, nutritional deficiency or something else.
Every day there is something new and wonderful to wake up to!
hey, some people really rock the bald look. Stanley Tucci, Terry Crews, Mark Strong, Samuel L. Jackson
And at least you’re not bored
the deficiencies should theoretically be gone
Yes and no, it depends on how long they lasted beforehand and how much & long you’re supplementing now (have that issue with iron, I’ve been taking supplements for a year and the levels are only now starting to go back up).
From how you describe it, I’d guess it might be something that’s tied to neurological functions that is not being supplemented enough. I’m no expert tho so please do take this with a grain of salt.
Tbh there are a couple of the supplements I haven’t been taking religiously due to the side effects. I hoped eating enough would fix the issues but maybe the damage is too far done already anyway.
I don’t think it’s done yet. The body can withstand a lot, and finding the right way to supplement the vitamins that are missing will make a difference. The question is really, can you get different types of supplements
On the NHS, unlikely but I could ask.
Give it a try, I’d say
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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
Any good history books on the ancient china warlord period during the end of the Han dynasty?
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.
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
Yay, you got this!
Looking at the result of two hours of work I absolutely do not have this. But thanks for the support.
It’s the first two hours, don’t be too hard on yourself. Nobody’s truly good at anything when they are starting out. You’ll get there
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.
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.
