“Change means growth, and growth can be painful. But we sharpen self-definition by exposing the self in work and struggle together with those whom we define as different from ourselves, although sharing the same goals…this can mean new paths to our survival.”
Audre Lorde, Sister Outsider - Essays and Speeches
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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.
I hate getting called “a burden”
But when I go to offer my work services to contribute to society. All the businesses (who are responsible for giving people permission to contribute to society) all say “Nah, I’m good!”
If you’re all set, I’m not a burden and I should be off the hook for the time being, right?
It’s billionaires who are the actual burdens on society.
You’re definitely not a burden, comrade. That shit really sucks and it’s not from personal failings of any sort.
I feel this. Society tells me I’m a burden - even my pharmacist complained to me about how much money I cost the NHS. Many people have told me I’m a burden on the taxpayer when I’ve been in receipt of disability payments, and the DWP makes it nearly impossible to get, and keep these payments, which is why I have to beg for food and everything else I need at the moment. Society resents my existence for costing it money. But when I say I want assisted suicide, it’s “NO! You can’t have that! Your life is precious, we can’t do it, you must continue to live!” Like, make your minds up.
why does the mental health care system suck so much. i feel like im not even being helped at this point
don’t want to get into crazy specifics but shits been toughYou don’t have to get into specifics, but if you need to talk or just want to unburden yourself, you can always do so here, or, if it makes you feel more comfortable, you can send me a private message. The disabled comm is here to listen and take you seriously, if and whenever you want that. I’m sorry that the system that is supposed to help you isn’t doing that at all, and I feel for you and the struggle of having to deal with this feeling of not being helped at all. You deserve better, love, and while we can’t give you the help you want/need, we can listen to you
i appreciate it, comrade
im definitely better than i was a few months ago but its still a long way to go, having issues with getting actual consistent care but hopefully everything will get resolved sooner rather than later lol. just trying to remember that it can only go up from here yk
I go to work with mask on but I struggle with eating and drinking enough when I’m there for long. I don’t feel safe eating and drinking in public spaces but I also don’t really have another option :/
felt, i always just starved myself when my shifts were long back when i was working :/
First, great job masking up. Really needs to be positively reinforced more given the major hurdles involved with doing it in public.
Second - have you looked into SIP valves or hacking your own on the cheap? They’re pretty good for drinking.
On the food front the only thing to do is try to go outside where its not too crowded and get your food in. Maybe bring something like an airfanta 4lite to help blow some fresh air in your face?
Just asked a girl out for coffee so not super freaking out or anything.
I made a meme-esque joke about all the qualifiers for what I am looking for for a future partner and she’s autistic, into metal, likes horror movies, and is a socialist. So that’s 4 points lol. I met her Wednesday at a metal show after talking a bit online. We are both in the local pre-chartered Satanic Temple and met through there.
I’m gonna puke…
Well first off good on you for getting the puking out of the way now, before you meet her. Smart move.
Would make for an awkward first date 🤣
I’m gonna hand you a paper bag to puke into, and then give you a hug because it takes guts to ask someone out
Hope it works out for you sweetie!
She hasn’t responded yet 😭😭😭💀
She will, give it a bit of time
Oh so that’s why I get like that sometimes
rejection sensitive dysphoria yipppee
I don’t get it often, but when I do it hits me like a truck
staying inside and never talking to anyone because at least the crushing loneliness is stable and predictable
yea… yea
I’m furious. My UTI isn’t improving. I googled why the antibiotic I’ve been given (nitroforantoin) isn’t working. It says it’s not suitable for people with low kidney function - it’s unlikely to work and can build up in the body and cause toxicity as the kidneys can’t excrete it effectively. Why the fuck don’t healthcare professionals consider the patient’s other issues when prescribing stuff? Why do I have to google and research everything myself? Now I can have another horrible sleepless night thanks to this UTI.
I’m honestly speechless at the lack of… thoughts, I guess? Did nobody ask about preexisting conditions, did nobody ask if you have an intolerance against certain antibiotics? Isn’t that something that you should be asked? Sheesh, this is dire
I finally got a doctors appointment. She did a dipstick test said there’s no trace of infection in my urine now, but since I still have symptoms I was given a different antibiotic. she sent the urine to the lab for proper analysis. A few hours after taking it I developed a weird pain in my arm. I googled it… and this antibiotic is known for damaging tendons and can cause arm pain because of it. So while being treated for a chronically inflamed tendon, I’ve been prescribed this. I’m not taking it any more but my symptoms are still awful. The doctor said she will phone me on Friday with the lab’s results. In fact she didn’t even know what to prescribe me and had to look it up on her computer to get a suggestion of a different antibiotic. This is not unusual, I’ve even had doctors in the past google my symptoms for an idea on what to do.
This is really becoming unbearable. And I still have the pain in my arm. I also checked the nitroforantoin - and that one can also apparently damage tendons. It seems daft to risk my tendons when I’m having this shockwave therapy to treat a damaged tendon. I wish we had assisted suicide in this shit hole country.
Oh I had my first shockwave therapy session yesterday. It was very fast, only took a few minutes. They said some people find it unbearably painful and can’t stand it but I would only put the pain at 1/10.
Also having trouble getting the help I need from mutual aid, and yesterday no-one even bumped my posts which is strange. Did I do something to piss them off or are they sick of me?
Unbelievable. I don’t even know what to tell you. When I have a UTI and the symptoms are still there but the infection isn’t anymore, my doctors usually don’t prescribe more antibiotics but instead painkillers and suggest drinking more water, walking (I know, funny isn’t it) and maybe some things that can help with bladder regeneration. Most of them cost a lot of money, but they basically help the inside of the bladder to reestablish a shield against bacteria and viruses. I doubt this is helpful, but maybe you can make some use out of it.
I think the shockwave therapy is probably a lot more painful if you’re not used to being in so much pain. I hope it works out and gives you back the ability to walk.
As for mutual aid, I honestly didn’t see your post yesterday, I was barely online. But I don’t think people are sick of you or annoyed. Most likely it’s that so many people need help, and I know that more and more hexbears block the mutual aid comm because they can’t help out or because there’s a lot of mutual aid posts that are crossposted to other communities (I’m not happy with that either) and clutter the other comms. So someone like you who posts regularly but not as intensively could just fall through the cracks. There’s no ill will behind it, I’m sure, just utter helplessness and exhaustion.
Oh, I didn’t know people could block subs in here. Yeah the world is deteriorating so quickly now, I guess everyone is burnt out.
What kind of things help with bladder regeneration?
A lot of people are, yes, but that shouldn’t stop you from asking for help. Someone can help, at some point. It’s just never certain, unfortunately
One of the things is D-mannose, it’s a type of sugar, ironically, that helps the bladder form a protective barrier against bacteria and viruses. Bladder teas of all sorts can help too. With the bladder teas you will have to check which ones heighten your kidney function because that might be an issue for you in particular. Bladder infections usually mean that you didn’t get enough water, which is difficult if you have kidney issues.
Thanks for the tip. I might give the d mannose a try, supplements usually don’t agree with me but anything’s worth a try at this point.
Just catching up, and I’m sorry that your care is being handled so terribly. It’s ridiculous how you get so many different opinions and advice from ‘medical professionals’ who don’t even seem to have the wherewithal to look at your history before treating you and sending you on your way just to fend for yourself. Hope your pain subsides soon, and you can get some relief.
As a side note, I think the site itself has been hiccuping along the last day or so, and I haven’t been able to see new posts/get updates in real time. Only posts I’ve made seem to load new comments right now and I’ve gotten a few bad gateway notifications. I’d try reposting your mutual aid post, maybe even delete the previous to help it get seen. Gingerbrat made a good point that the comm has been a little overloaded, and with it being the start of the month there’s definitely more traffic. I don’t think people are sick of you; you don’t really post that often and you don’t ask for much. It’s hopefully just a poor combination of things.
Hope you can get some better support soon, I know it’s really rough right now.
Thanks for the moral support.
Yeah the NHS is absolutely broken. Many people believe it’s being deliberately destroyed because the powers that be want to introduce private healthcare instead. The pain with the bladder isn’t so bad, what’s destroying me is the fact that I feel like I need to go all the time, the feeling won’t subside and I have to get up multiple times a night. It’s even been leaking out.
Does deleting a previous post help a new one get seen? I didn’t know that.
It won’t help it get seen, it’ll just prevent ‘spamming’ and help those who sort by new. You could even title it a repost and say you deleted the other to prevent spamming if you want, I think other users have done that in the past. The way they show up depends on how people browse; my default is by new but the site itself defaults to Hot which I believe is where the comment interactions (especially recent ones) are more heavily weighted, thus the bumping for visibility. I could be incorrect but that’s been my general understanding.
And I feel you on the healthcare getting actively destroyed, it’s pretty obvious they’re trying to make things harder and less accessible to those who need it most.
Thanks for the idea. I have deleted the older ones now, however I can still see them. Is that normal? Are deleted posts usually still visible to the creator?
I really think they’re trying to make this world like Ready Player One. have you read it?
Yes you can see all your deleted posts, they’ll usually be marked as deleted but you’ll still have access to them.
I haven’t read the book, but I saw the movie ages ago. We’re definitely getting eerily close to a true tech-centered sci-fi version of a dystopia. Did you like the book?
Still too sick to do any real stuff. Gonna be real, it’s getting old.
I really hope the sickness fades as soon as possible
Thanks.
Get well soon, comrade
I’ll try.
My body is a machine that turns soup into virus rna and cold sweat.
& it turns soup into antibodies as well
stay strong, you’ll get through it
The fun thing about med school is that you will have lectures about really complicated molecular interactions followed by lectures that are like “And the pointy part of the needle goes IN the patient 😀”
I just got back from my second ultrasound. I had one on my chronically inflamed achilles tendon previously, and it showed the damage extended further down, today I had an ultrasound on my feet. It showed damaged ligaments in my feet and even something wrong with the bone in the left foot - some kind of deterioration, but the technician said someone needs to analyse these results in more detail. Anyway all these injuries and damage are the long-term results of the fact I’ve had a stroke, it left my left side weak and over time the tendons, muscles and ligaments and apparently even bone have deteriorated, and even the right side is having problems due to the extra stress of having to pick up the slack from the left side. So I’m going to spread the shockwave therapy out over the achilles tendon and feet. People helped me get enough money for 9 sessions and one scan, but having to pay for the extra scan plus transport expenses I ended up only having enough left for 6 sessions, which I paid for before any more of the money got spent. Now I am struggling to pay for transport for all this plus my usual medical appointments.
I’m sorry the damage is so much more extensive than originally thought, comrade. I hope mutual aid can come through for you again when you need it. Does the shock therapy seem to help at all? Sending hugs, and hope you’re hanging in there ok with everything.
My first actual treatment starts on 30th, so I’ll find out then!
adjusting my meds that don’t actually work so i can tell my doctor they don’t actually work again
I don’t think any meds work. All the do is give side effects.
Well I just filed an online complaint to my GP surgery about that creepy consultation, and complained to my local MP about it. No doubt nothing will happen, but I’ve done what I can to make sure no-one else is subjected to this.
Pfft, Nintendo Direct? Yeah ok buddy, we’ve got an Autism Direct at 4pm (est?) today.
Anyways I hate it here.
aw man
as per usual people are just reacting to it with “lol this guy’s so stupid” and not pushing back on the narrative that autism is a disease that needs to be eradicated at all
Yep this is why they tried to force me to take birth control if I want to keep taking my migraine preventatives, because the migraine preventatives can cause autism in an unborn child. They are so desperate to prevent more autistic people from existing that they’d force an ace person who is never going to get pregnant to take birth control just in case.
Oh no
Is that today? I might actually have to log off later…
I’m so looking forward to all the new “insights”
I’ve had an absolutely horrible night with this UTI, it has become worse and I haven’t had any sleep. Now I am having to deal with 111 - the NHS support phone line - trying to get a prescription for some antibiotics. I am so pissed off I am going to complain about this Steve wanker to the surgery and my local MP. I know they won’t care or do anything about it but I am complaining anyway. When I told the phone operator at 111 what Steve said to me she was so shocked she didn’t know what to say. The more time passes the more I realise how completely inappropriate he was. My landlady even said “Are you sure he actually worked there, are you sure he wasn’t a mental patient who wandered in there and just started giving consultations?” She looked him up on the surgery website but he’s not on there, he must be a locum. Neither of us have ever seen him before.
EDIT: Finally got a week’s supply of antibiotics. My landlady drove me to the pharmacy, with the dog, who was sticking his head out the window, and parked right outside (since I’m still having problems walking). While I was waiting for it to be dispensed, the pharmacist saw the dog through the window and started squealing and cooing, “Oh, adorable. Oh, sweet little face!” Someone in the back heard her and called out “Is it a dog?” To which she replied, “Well, I wouldn’t say that about a person, would I?”
I hope the antibiotics do the trick and get you back on your feet again
The pharmacist sounds like a hoot though :D
Thank you.
It was quite amusing.
My bladder irritation got so much worse a few days ago, I started to think I might have a UTI. But of course you can’t just get a doctor’s appointment any more. They won’t see people for a UTI at first, you have to go to the pharmacist to get antibiotics, which I did. They haven’t worked so today I asked for a doctor’s appointment. My landlady drove me down there, with the dog in the car. The dog had his head out the window and a scruffy man came by and patted and talked to him. I did manage to get an appointment but it wasn’t with a doctor. They try to palm you off on non-doctors like the practice nurse, healthcare assistant, or even paramedics now instead of an actual doctor.
So I went to the appointment, and the person clearly wasn’t a doctor. The doctors are dressed smartly, wear suits and introduce themselves as Dr Whoever. This man was very scruffy with week-old stubble and a tatty, unclean T-shirt. He introduced himself as Steve but didn’t mention his job description. He had a paramedic bag in the room, so maybe he was a paramedic. I told him the issue and I feel he was inappropriate.
First of all he asked if I was the person with the dog - turned out it was him who’d been patting him when he was in the car. He then spent ages banging on about how he fosters rescue dogs, getting his phone out and showing me all their pictures. When he finally got on to the medical issue and I explained my UTI symptoms and the fact my blood tests had been showing low kidney function and what should I do about it because maybe it is related to my issues, he said there’s nothing you can do about low kidney function. Your kidneys just deteriorate when you’re old and that’s that. It doesn’t sound right to me but I don’t know enough to argue about it.
I said the antibiotics hadn’t worked and asked for more. He did a urine strip test which showed an infection but he refused to give me more antibiotics, saying they’re bad for you and all I need to do is drink water. He showed me his two-litre water bottle and said I should be drinking four of those a day. 8 litres a day, seriously? The NHS website says you should drink 1.5 litres a day. He then started talking about how Buddhist monks never get ill because all they consume is “grass and water,” and told me I shouldn’t eat meat because when you eat meat it stays inside you for years and rots.
He then started talking about my V@g1n@. (sorry don’t know if people will complain about the use of this word and tell me to censor it). He seemed to think UTIs are in your V. He started asking about it, and telling me to soak it in the bath because it’s “too acidic” and that’s what’s causing my problems. I said I only have a shower and he told me that when I’m sitting on the toilet I should get a bucket of water and pour it over my V to clean it. He went on and on about it with a weird look on his face, I honestly felt creeped out and violated. I very much got the impression it was some kind of power play that he could force a female patient to sit there and listen to him going on about her V when that isn’t even the body part in question.
Then he started banging on about dogs again and asking 100 questions about my landlady’s dog. Never had a medical professional behave like this before.
So the whole thing was horrid. The only useful thing was he said he’d make sure they check my kidneys again when they do my next blood test next week and maybe I could get a referral to a urologist.
Sheesh this guy is gross. But concerning the water intake, I need to clarify something bc I keep seeing people recommend way too much or way too little.
Antibiotics are the easiest way to deal with UTIs and they’re very effective. That you need to drink a lot of water especially during a UTI is true, but 8 litres is excessive. However, 1.5 litres is not enough. Depending on how much you exercise, how much you weigh and how tall you are, and a bunch of other factors, you need different amounts of water. The average is between 3 and 4 litres a day, and that includes water that you get from hot drinks or soups as well. So if you aim for 3 litres, you should be fine with the water intake and it could help your UTI resolve itself faster. Still, it’s infuriating to no end how you’re supposed to be able to get medical care and then they just pawn you off. I’m sorry you have to deal with this sweetie
Thanks.
I’ll try and aim for 3 litres then. I have to force myself to drink as I never feel thirsty so it’s a bit difficult. If i could see a real doctor I could probably get better help but now 90% of the time if you can even get an appointment at all it turns out to be with a nurse, healthcare assistant, paramedic or someone like that and they often even admit they don’t know what to do. Last time I had an appointment and it turned out to be with the nurse she said she didn’t know and would ask the GP and then they just never got back to me. I’m so tired of what a struggle it is to get healthcare. Not only that but because you see a different person each time, there’s no continuity, and no holistic approach to treatment. When there were the same few regular doctors here, they all knew me and if I had a problem, they already knew my health issues and would consider the problem in relation to them. Having a different rando each time, none of them know me or my problems and so nothing like that gets taken into account. Today for instance towards the end of the appointment I mentioned to this Steve person that I’d had thyroid cancer and a stroke and he said something like “Oh, did you?” in a surprised tone, he hadn’t even read my medical notes, knew nothing about me. How can anyone get adequate medical care like this? I’ve been thinking about complaining about this to my local MP but he is totally useless too. This entire country needs to be nuked.
As a scruffy guy in tatty t shirts who likes dogs, I feel like i should defend my people. But this steve guy is not making us look great. Basically everything he said is wrong. From your kidneys to your junk. Although I guess he did his job by sending you on to an expert. So… uhhh… good?
Well, he hasn’t sent me to an expert, he just said there’s a chance I might get sent at some point.
