Disability is indeed a burden, yet I hope for a world where we don’t have to carry our individual burdens all alone. Let the mega continue to a be a place where all of us can at least listen and make the burden somewhat lighter.
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“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’ve recently made complaints to multiple bodies about the crappy medical care I’m receiving. The Patient Advice & Liaison Service and the Integrated Care Board, both of whom wrote back to say it’s not their problem and they aren’t getting involved, and the GP surgery and my local MP, neither of whom have even bothered responding nearly 2 weeks later.
Complain again and ask them to clarify who your complaint should go to if not them. Make them justify themselves. But yeah its pretty hard to get a shitty medical practitioner to face consequences
That sucks, is there anyone else you could contact about it? Maybe the facilities you’ve been treated at have a complaint line or something? It’s awful that you can’t even get a response, but I’m proud of you for advocating for yourself after everything, that has to be a struggle in itself. You deserve so much better.
Thanks. I don’t think I can deal with it any more at the moment. I just don’t have the energy when it’s a complete waste of time since no-one cares. I’ve got so much medical stuff on, I’ve got a date for my scan where they are apparently going to check my entire abdomen to see if there’s a cause of the non-stop UTI feeling and raised “ovarian markers” that showed up in the blood test, plus all my usual shockwave and other appointments. My landlady also pressurised me into moving a heavy item last night and now my knee really hurts too.
Oh goodness, well definitely prioritize your rest, love. Is the scan for your abdomen happening this week? It would be nice to have an answer to some of your symptoms but I still hope it’s nothing serious.
I think it’s the 23rd.
Just had a doctor’s appointment about the bladder. Got fobbed off as usual. I asked again to be referred to a urologist. “Oh no, we can’t do that, they probably wouldn’t accept the referral. Try keeping a bladder diary for a few weeks, that might help!” And told to take the folic acid anyway, even though it’s making the bladder symptoms much worse. Just useless. Doctors always make it so clear that patients are an inconvenience and they just want to get rid of us as soon as possible so they can collect their paycheque and go bac to their lives.
I became ill on Saturday night and developed a terrible pain all down my left arm and into my back and neck. Painkillers didn’t help and I was having trouble breathing, my heart was racing. Eventually the pain got so unbearable I called the NHS non-emergency number for advice and they sent an ambulance. I got carted off to hospital at like 3.45am and had three ECGs, two sets of blood tests and various examinations. My oxygen was worryingly low and my heart rate was far too high. The pain was so severe I was given multiple doses of morphine and eventually had an allergic reaction to the morphine. The reaction was treated and eventually they diagnosed the problem, it was being caused by nerves in my neck and was a complication from my previous stroke. I finally got discharged at 11am, went home and slept all Sunday.
A stroke really is the gift that keeps on giving! I didn’t even know you could have such terrible and sudden problems from a stroke you’d had several years previously. And now morphine is off the table in future.
The only bright spot in my weekend is that I came online to find my food aid request had been answered, so at least that’s one worry off my plate. Still need help with transport though. And I have an awful headache and still feel ill so can’t write much more now.
Oh my
You really got it all this time, that’s horrible. I’m sorry you suffered so much over the weekend. Can this pain come back anytime? Please rest up and take care ❤️
Thanks.
I’ve been worrying about whether it could come back. I didn’t think to ask at the time as I was too tired and unwell. I suppose if it does, I know what it is next time, I was worried this time that it was a heart attack as the symptoms were just like heart attack symptoms are described. But I don’t know what I’ll do of it does come back as I’m now having allergic reactions to strong painkillers. Just one more thing to worry about.An allergy to morphine sounds like one of the most unfortunate allergies one could have, and I’m sorry that this is something you’ll have to deal with from now on. Maybe, once you have another appointment with a doctor that is somewhat knowledgeable about the topic, you could ask them. For now, I’m just glad you didn’t have a heart attack and I hope you’ll never have to suffer through this again
Thanks.
I am worried about what I’ll do for the future. I’ve never had a reaction to morphine before this. I’d never had a reaction to antibiotics before last week either. Seems I’m reacting to everything now. I always thought I would die from either suicide or another stroke but now anaphylactic shock seems to be the front runner.
I know I shouldn’t be surprised but I can’t believe they sent you home after a few hours after all of that! I’m so sorry you had a reaction to another medication, the list just seems to keep growing.
I’m glad you’re (relatively) okay now, but my goodness that is a lot, love. Hope you’re able to rest up and recover as much as you can. Did they give you any advice on what to look for or symptoms to keep an eye on for the next few days?
Sending hugs
No, no advice for the future. Also they always toss you out of hospital as soon as you’re physically stable enough to leave, at least in the UK. In fact this time, as soon as arriving by ambulance I was put in a bed in the hospital. After about half an hour of being in the bed, they said they needed the bed and I’d have to go and sit in the waiting room. Sat there very uncomfortable for about 4 hours before being moved to another bed.
Good grief. Eternal hell fire on these oppressive systems.
Is popping joints a lot like, a thing? An autism thing, a hyper mobile thing? I’m constantly cracking things, toes, elbows, knees, hip, my back, neck, jaw, fingers in a couple different ways. Is this just a terrible habit I’ve gotten in to? I feel like I have cracked a lot for a long time and idk just ?? I don’t really know what I want to say about it.
hypermobile thing
we have EDS n it has always happened
Do you (or anyone else reading) have/know of any good resources talking about hypermobility? I’ve seen a bit on tiktok that has made me think I might be but that’s basically it.
A few instagram posts I saw over the years, but that’s basically it. What I can tell you is that the popping isn’t a bad thing, and you don’t have to worry about having a “bad habit”. I do hope someone else knows a little more
I can tell you the clinical definition and how hypermobility is “diagnosed” but I have no experience with it otherwise.
I’ve found that as I get older, cracking and stretching has become a more socially acceptable way to stim at work without people realizing I’m disabled.
I was told my joint popping (mostly fingers, toes, and knees) are a form of stim after I got diagnosed. I have some joints that bend a lot more than other people’s, but I also have early onset arthritis that causes inflammation in places like my knees and hips. I probably pop various things two or three times an hour, not out of discomfort, more like a habit I can’t break. It’s weird but I can’t not pop my knuckles. My doc said the popping isn’t hurting anything, but physical therapy for stuff like my hips and back would supposedly go a long way to help support the joints themselves by building muscle around them. I can’t afford that so I mostly just do little stretches at home and make sure I’m not sitting for too long during the day. A lot of that stuff is apparently genetic too, so it can really vary.
Guess who woke up at 6 am, sprinted to the bus stop, realised after they got to school that they didn’t have the printout, ran to the university library, had to spend 20 minutes navigating their infernal IT system to get the stuff printed, ran back, and got to the lab just in time only to be told I wasn’t on the sign up sheet and that this was the SECOND lab session (requiring that I had been there another time I didnt even know about) and i therefore had no way of participating even if my attendance could be noted, and had a full on breakdown in public? This guy.
Then it turned out I was supposed to be here Thursday.
I don’t know what to say other than I’m sorry you had such a rough start of the week. Please, feel hugged, sweetie. This is rough.
(Edit: I just got a call, they told me I don’t fit bc I seemed too frustrated and tired for the job. I’ll be crying in the corner for the day)
Had two very long days traveling to the capital, and while the train ride there was already hiccuppy, the ride back is gonna take me 2 hours more than it should. The workshop for a potential job I attended was great, though apart from moody glucose levels, I also had terrible period cramps while trying to smile at people on the street and chatting them up. It’s been a while since my body felt like such a letdown, but at least I had a very understanding crew around me. I hope they can see that I want this job and that I’m motivated. God knows my cramp face doesn’t look motivated
Well clearly you dodged a bullet. If they didn’t want you they’re dangerously mismanaged.
Nah, it’s a face to face fundraising kind of job, and they need people who are able to handle the constant rejection of chatting people up on the street and getting turned down. The thing is, I wasn’t even frustrated with people not listening, the more frustrating thing was my constant period cramps, but how do you tell the difference from the outside when you don’t listen to what I say.
I’m sad to hear that you were turned down for a facer role. Especially given your long travel and the time you took out to make the attempt at getting hired. Do you have anything else lined up?
But to be entirely fair to my previous assumption, I’ve yet to see a place with facers that was well run. And if they weren’t willing to listen to you say you were making faces because of cramps, they were probably not going to be great to work with. Although my experience is limited to Amnesty international and a local homeless charity.
It took some time alright, yeah. It’s frustrating, but that’s what it is. And no, I don’t have anything else lined up and to be quite honest, I think I won’t look for anything again. Don’t feel like wasting time on stuff that doesn’t pay off.
I will agree on that one, that is almost always the case. From what I saw, they’re surprisingly well organized and managed, but that doesn’t mean they don’t have shortcomings.
I understand not wanting to get right back on the horse after an experience like that. I hope the rest of this week and next week treats you better.
Thank you love, and sorry for being so agitated in my comments. I don’t want to make you feel uncomfortable, and I’m sorry if I did
You had every right to be upset, you lost a job opportunity.
Sorry things didn’t work out. Sounds like an awful two days.
Thanks love
I just really wanted this job, and the workshop was fun too, and now I’m back to applying to stuff that I don’t want. I’d rather not, tbh
Life sucks. I hope you find something you want to do just as much.
Unfortunate update: Somebody on the train has a medical emergency and we’re stopped until an ambulance arrives. That alone is bad enough, but for the rest who wants to sleep on the train, it’s a double nightmare bc we’re being excessively updated on every step of the way
Wishing you a good rest and recovery, love. Hope you can get home soon and that the job is a go!
Thank you love ❤️
I told the girl that I like that I like her this morning and she hasn’t responded yet so I’m gonna go kill myself now.
There are two possibilities
1:She just hasnt seen it yet or doesnt know how to respond
2:She’s not into you, in which case thats a good thing because she clearly has awful taste and you should find someone else anyway.
She responded. She said she hasn’t been in a relationship for 4 years.
I’ve been dropping hints that I’m interested for the last 2 weeks but we are both autistic so I think there is a communication and social cue issue going on, so that was why I finally got the balls gathered to be straight forward.
Being honest with your intentions is always best, that way there is no confusion and no one ends up feeling tricked or used.
Yeah, I’m also bad at picking up when people are interested in me and I have heard the same thing from other autistic people so I went ahead and decided to try direct and honest. Honesty for me is an easy thing anyway.
Honesty is the best policy.It would be nice if her answer was clearer with regards to whether she’s interested though. But think in the absence of a yes we must assume no. Especially when you were direct.
i hate chronic pain
missed fun yearly event again because of it
Nooo, not again
Chronic pain, go leave Spectre alone, hy deserves better
Gingerbrat’s first mega
I was triple checking everything to make sure I got it right, so yipeeh
God I hate social posturing. Yes, you’re very cool and normal. Yes I am not. I know. I’m not going to change, I’m not trying to fit into the game so stop assuming I’m playing.
The worst part is the attempted baiting. Like, trying to provoke you into “conforming”. It sucks, and you deserve better
Uh huh, the whole “I’m going to be a disingenuous and passive aggressive asshole and somehow this is a gotcha on you.”
It’s just school bullying all over again, urgh. You’re good the way you are, owlet, they can’t even reach that level of cool you have
My bladder is no better. I can’t get any sleep. And I think someone on lemmy is teasing me with promises of help that don’t come through. A person there answered my mutual aid post to say he wants to help but then keeps making excuses. First he turned down every available option like paypal, anything that takes debit/credit cards, and every other type of payment, saying they don’t have paypal, debit/credit cards or the other types of payment in his country. Then he said the only thing he can do is a bank transfer but he needs to go somewhere to do it and he can’t get there for weeks, and maybe not at all. Like, why even contact me to offer help if nothing is convenient for him? Also I don’t think I’d want to give my bank details to a complete stranger anyway. As if this isn’t disappointing enough, he posted his offer of help in the thread, but then sent all of his “can’t do this payment method…” messages through DMs, which makes it look to everyone else like I am being helped, when I am not. Which means other people who might have helped won’t bother now. It’s like he’s gone out of his way to stop me getting help from other people while giving no help himself. Someone on lemmy once strung me along like that for weeks and got banned, I’m wondering if this is the same person under an alt account. And I find it hard to believe there’s a country where they don’t even have credit or debit cards.
EDIT: Just checked my account and wow! Someone else came through! Now I don’t need to worry about it.
I’m glad someone came through after all.
In my country it’s somewhat common to not have a credit or US style debit card. We have our own payment system that doesn’t work well on international sites. This is why many people use paypal as it enables us to pay internationally as well.
But that doesn’t discount the fact that this person is being the opposite of helpful by making false promises and not delivering. It must be very exhausting to deal with that on a regular basis :/
It is, very. I suggested everything from cards to paypal to crypto to apple pay to google pay, he said he doesn’t have any of them and probably can’t get to the bank to do a transfer. Why contact me at all then? And why leave a message in the thread saying he’s going to help me, and then send private messages saying he doesn’t have any payment methods and can’t help after all? makes me think he was trying to sabotage my thread for some reason.
It could definitely be sabotage. Leaving a message in the thread if you’re not even sure you can deliver on it does seem suspicious
it wouldn’t be the first time either.
I think we should assume incompetence before malice of our fellow hexbears.
Guys I think my education might be bougie as fuck. There’s a wine tasting student club, there’s a brunch group
You can sign uo for a surfing trip to Morocco or a bunch of other activities that i cannot afford too
My UTI symptoms are worse, it’s just becoming unbearable, that combined with the pins and needles I’ve been getting. I can’t take the folic acid I was prescribed as it makes my bladder even worse. I don’t think I can stand this much longer.
Sweetie, I’m so sorry
Are there any painkillers you could take to make it a bit more bearable? The appointment for the ultrasound is still a couple of days off, isn’t it?
The appointment is in another week and a half. Getting lots of morphine and codeine in the hospital last week did relieve it quite a bit, but I seem to be allergic to those now and I take paracetamol so much anyway, I’m trying to cut down on that. It got worse when they prescribed me folic acid so I stopped taking that. Last night my pins and needles were so bad I took another folic acid and it seems to have flared the UTI symptoms up again. Whatever I do to treat one condition, always makes another worse. I wish I could just be put down humanely, I don’t see why I am forced to live like this. Especially in a country where they don’t even care whether I’m fed or housed.
Nooooooo
i missed a lecture on lgbtq health.Nooo
Can you retake it?
No it was a one time deal, it was for every semester that wanted to attend. They sometimes invite some person who is an expert in a niche medical field over to hold a lecture. There’s been some interesting ones too, like one guy who was giving a lecture on how to do surgery without having access to traditional first world medical equipment, one who explained the differences in practicing medicine “on the mainland” and in Greenland and explained “Greenland diseases” (I.e. diseases that are rare here but common in his Inuit patients in Greenland ). I’m so mad I missed this one.
A fellow student uttered the words “Let’s go, chat” as he began doing his lab work.
