No fancy OP this time because I am running on E! I'm definitely not a couple of days late! This week's person of interest is you, dear reader. Tell this fat frog lady all about your lovely selves this week. Tell me what makes you laugh and what brings you joy in this hell on earth we call home.
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've just had my local pharmacist shame me for being a drain on NHS resources. I take various different meds, some for my cancer treatment but most for dealing with side-effects caused by the cancer treatment. Some to prevent me from having another stroke. One of the issues I've been dealing with is severe migraines, with blindness, vomiting and excruciating pain lasting up to three days at a time. I've had various different treatments for this, including nerve blocking injections in my head, but the only medication that really helped was rizatriptan.
However, rizatriptan isn't suitable for people who've had strokes, so they won't prescribe it any more. So it was back to the neurologist, trying various different treatments and meds until I was, a few months ago, prescribed rimegepant. This is nowhere near as good as rizatriptan, but it does help. So for the past couple of months I've been having this and I just went to get my most recent prescription filled.
The neurologist said I can take one every day as a preventative but the GP's surgery have been refusing to prescribe me more than 8 a month. They wouldn't say why, but today when I went to collect my prescription, the pharmacist had a go at me about the cost of the medication. I was literally just standing there waiting for it, and totally unprovoked he came out, handed me the bag and just started loudly complaining in front of all the other people about how this medication is too expensive, and his general tone and demeanour clearly said that I'm being a selfish drain on NHS resources, although he didn't dare actually say that in words.
I got home and googled the cost, it's £12 per tablet. Logically I know it's not my fault I need meds, but I just feel really ashamed and guilty now for being prescribed this. Maybe this explains why the GP surgery won't prescribe me one as a preventative each day. I'm wondering whether I should even bother to keep getting this prescription filled if the people at the pharmacy think so badly of me for taking it.
This isn't even the first time the NHS has complained about the cost of my meds. Some years ago, before my stroke when I was still taking rizatriptan, they tried to change me to a cheaper med, one I'd already tried that didn't work, saying rizatriptan was too expensive. (It's like £2 a tablet). I begged the woman not to change it and when she said she was changing it, I broke down in tears at the thought of going back to 3 day long torturous migraines. She actually laughed and told me to stop being dramatic, but in the end after getting advice on how to deal with her from people online, she agreed not to change it.
It's the same with receiving disability benefits, having to go through endless assessments and appeals, being given zero points and having my payments stopped, being left hungry and destitute. Again and again, this society shows me that i am nothing but an unwanted drain on resources, selfishly sponging off working people. Yet, they won't let me have a peaceful and painless exit. If assisted suicide was legal and free on the NHS, I would take it. They would save money then. But no, I can't access that service. They even make DIY suicide difficult by making the easier methods illegal and difficult to obtain. Just - what do they want? They don't want me dead but they don't want me alive either. I have two risk factors for stroke - my cancer treatment and my migraines, and I've already had one stroke at a young age. They tell me I'm at risk of another. Keeping my migraines to a minimum makes the chance of another stroke less likely and if I do have another it could be more severe and more life changing if I keep having uncontrollable migraines. Then they'll have to spend even more money on me.
Sorry just a rant because I'm feeling like worthless trash after my trip to the pharmacist. Just legalise assisted suicide and kill me already. But this society are cowards. They don't want to say "Yes, let's kill you as you're disabled," because they don't want to sound like nazis. So instead they slowly kill us by denying our benefit claims, leaving us homeless and hungry, changing our meds to cheaper ones that don't work and whatever else they can think of to get rid of us without making it look like societal murder.
The neurologist said I can take one every day as a preventative but the GP's surgery have been refusing to prescribe me more than 8 a month.
Similar story here. The neurologist prescribed me 18 a month, insurance (even via Medicaid) would only give me 8. But it's $75 per pill or more in the U.S.
I understand why disabled people who want to live would be fearful of assisted suicide. But for me, I really hate being alive and I do wish it was over. I already tried to kms once, ended up in intensive care for 5 days. Even in there, the medical staff were nice to all the other patients on the ward but mostly ignored me, they seemed really disapproving of what I had done, no sympathy, no wondering what had driven me to that. It's difficult to do and I just can't do it myself. I want to go to dignitas but it's unaffordable. I joined a suicide forum, and made several suicide pacts with people there, but something always went wrong to prevent it (like them backing out at the last minute, or the supplies we needed for the plan being unobtainable). Then when my benefit appeal started and I eventually ran out of credit, I got so desperate for money that I tried selling my prescription meds on there. I had no other way to feed myself. For that, I got banned. So from my point of view, society legalising assisted suicide or even forcing us into gas chambers to die would be a relief. In fact, I'd have more respect for them if they just did that openly instead of saying "OUr sOcIETy hAs a roBUsT saFETy nET," while giving people like me zero points on our assessments and leaving us to starve. Being in constant pain, begging for food vouchers and trying to make them last as long as possible because I don't know if anyone will respond the next time I ask, completely destitute, endless benefit assessments and appeals, threatened with homelessness and now being deprived of the meds I need, on top of having cancer treatment and recovering from a stroke, has just overwhelmed and exhausted me to the point life isn't worth living. especially since I've got nothing good in my life either. I don't have friends in real life any more, they all gradually drifted away as I got sicker and wasn't fun any more. I used to love hiking but now even walking a few steps really hurts, and I have no money to do anything that I could do by myself at home like renting films or whatever.
What you said about society erasing our existences and seeing me as a normal person who is just pathetic - I'd never thought of it like that before but you're right. And when I talk to someone and they find out I'm on benefits - even if they know about my health issues and can see the state I'm in - they either don't bother talking to me any more, or get critical about it and suggest I should just find some work or a course of study I can do. My own doctors have said I'm totally unfit for any type of work whatsoever, I now need help doing basic things, I struggle even to dress myself and use the toilet but of course there must be some work I can do. Employers are just crying out for people like me. Doesn't matter that I worked and paid tax and national insurance for 16 years previously. How dare I now draw on that "safety net" I paid into all those years. The obsession that society has with finding some work for the disabled, or even forcing the disabled into work, is a denial that people can be too disabled to work.
On reddit I saw a comment about Luigi Mangione, someone had found his reddit account, and discovered that he suffered from crippling, painful back problems. He was giving other sufferers advice on how to convince their insurance companies to pay for their treatment. He made a a comment in response to a post where somebody asked for help convincing a surgeon that they needed spinal fusion surgery because their pain is unbearable.
Mangione said "Tell them you are "unable to work" / do your job. We live in a capitalist society. I've found that the medical industry responds to these key words far more urgently than you describing unbearable pain and how it's impacting your quality of life."
And I think that says everything about our society. we aren't seen as humans with needs, we're all just units of productivity. Those who don't produce get thrown out like trash and those who do produce may stand a chance of getting the help they need to keep on producing.
Anyway, sorry to hear that your mother doesn't accept you for who you are. We live in a cruel world full of miserable people.
i saw a good handful of people masking today when i went out to get my vaccine 🥰
I went to my health insurance office (not for adventurism) and saw everyone there masking too, was pretty surprising.
I've actually noticed an increase in people masking, which is very nice.
look on the bright side, if you do get a job, you would be eligible for unemployment insurance. just watch out for being unemployed, then you would no longer be eligible…
I created the current thread in somewhat high spirits and low energy, but I am feeling pretty burnt out and want to minimize my presence here and there for some time. If you have seen me around/we’ve interacted and you are interested in keeping in touch, my matrix is in my profile. xoxo
grateful for all the energy you've put into this place. thank you. ❤️
God, I even saw the mod chat about asking us for mega post ideas and I literally am out of spoons. I still have one I want to make but I've been working a ton, and it's physical work so by the time I'm home I'm already passing out. Thanks for picking up the torch, Ivy!
About me:
I am super late diagnosed autistic. I also have dysthymia, fairly severe social anxiety, and some tag-alongs like pathological demand avoidance, rejection sensitive dysphoria(sort of I think), and probably some more that will eventually manifest.
My hobbies include web dev, horror movies, video games, and reading theory. Those sort of also cover quite a bit of my special interests. I've been into horror movies for over 3 decades. I started reading again like 2 years ago an haven't really stopped. I'm just super deep into socialist texts and don't see any way out any time soon. I used to also speedsolve Rubik's Cubes and have been a Linux hobbiest for over a decade. Oh I also like angry music and tiny mechanical keyboards. Typing this on my Ferris Sweep currently.
Speaking of web dev, I'm working on doing the freelance web dev thing. My free time right now is limited with work but I'd like to try to get a site a month done. My stack is AstroJS, TailwindCSS, TypeScript/JavaScript, and DecapCMS currently. I handcode my sites and don't use builders like WordPress, essentially. I'm actively trying to network but just can't get a nibble on a site. If you know anyone that needs a not shitty site made and don't mind it being made by a dirty commie send them my way lol.
Recently I've been doing my own gender exploration and I think I am gonna go with Demi/agender-ish for now.
I'm also in the middle of my PSL candidacy and am gonna try to get something going in the Texas panhandle.
Idk, I'm tired. I might rework this later but just call it stream of thought for now.
Love you all, stay safe out there.
Changing antidepressants. Currently discontinuing and I'm not getting any major symptoms aside from being way less tolerant of minor discomfort. I also feel like.. 40% more autistic than usual of that makes any sense. I'm on my break and I've been mumbling and tripping over my words all day with customers. Idk if that's the med change but I'm blaming it on that.
I wanna go home and play.. Idk monopoly or something
I went home and played monopoly. I'm about to win against the dastardly cat
I also feel like.. 40% more autistic than usual of that makes any sense
it absolutely does
My time blindness has been acting up and the class I am taking has now instituted a zero grace period policy. Death to america.
I found a YouTube link in your comment. Here are links to the same video on alternative frontends that protect your privacy:
she looks like she's pretending to be the loch ness monster lol
Since there's probably no hope for fixing whatever medical thing is wrong with me, I put out a bunch of feelers for disability support and whatever to try to pay rent and not get evicted.
Man, (discussing how bad social assistance and whatever is)
Mostly it seems like whatever reason you're in the rent hole for, you are in that hole on rent and that is it. I wonder if ODSP will actually help? Places like the local legal clinic didn't have much to offer on first call, (hope for more later) and the fucking salvation army (recommended by both legal place and landleech corp) asked if I can have anyone move in or work from home.
I probably could work from home but I'm also completely unhirable. I flunked my interview for my last job, I only got in due to nepotism and the job wasn't even cushy lmao. So I dunno, could I work from home, member of the Prevention & Diversion Division of the Salvation Army Local Citadel?
These places all want your bank info and whatever, (not direct deposit they want statements) and have statements about needing clients to be open to "interventions and lifestyle altercations" or whatever the fuck, like dude fuck you, nobody should have to submit to that shit. Also needs testing lmao.
Idk how long I'll last because my dad said I can't move back in, so if that hearing fucks up I guess that's it. But it's depressing knowing how much canada
hates its disabled people, poor people, (hell this is guaranteed even less fun if you have substance abuse problems of any kind) and just getting it pushrd in my face all day... Death to this country honestly.Sorry this post is really depressing, I don't really have good news =) I need a new note from my doc for employment insurance but my doc, bless im, writes such threadbare nothingburger notes. How do I get him to write in detail? We've been at this for five years and I feel like I should not have to dictate...
The last time I needed a letter from my doctor for my disability benefits I literally wrote him a letter listing all the things I wanted him to say in it.
Why are they like this
I gotta do his job for him for a sec? What kinda bullshit society is this...This is the way to go.
When I applied for disability support pension I found a good resource that was literally just madlibs for medical terminology. That both made it easier on him to remember everything, and provided the exact wording the assessors wanted.
Sucks we have to do it, but it does help.
For real, it's been another one of those "if I were not radicalised already, this would be radicalising for me" moments.
unfortunately one thing i learned from having to make doctors write notes and fill forms is you really do have to dictate. they always want to write whatever is quickest which never paints the full picture and that more often then not gets disabled peoples support applications denied.
i don't know how good your relationship is with your doctor, but it may be good to stress that the employment insurance is requiring a detailed note so if they feel inconvenienced by the extra work it's out of your hands. maybe you can ask about booking a longer appointment with them based on how much time you think you'll need for a detailed note?
also sorry if this advice is unwarranted but i try to give it to everyone because sometimes even myself and others can have their disabilites downplayed. but to a doctor, and especially for any disability support applications, always answer any questions as you would if its your worst day. as an example, i can technically do basic hygiene, laundry, walk for some distance etc on a good day but on my worst day? when my symptoms are at their most unbearable? absolutely not, i would be bedridden! don't let yourself be tricked by the application or your doctor in downplaying your symptoms, always ask yourself if you're able to do certain things on your worst day because i've seen people get denied for not doing that which isn't even their fault because the system is rigged and ableist.
you may have to be insistent with your doctor if they give you pushback though. you will always know yourself best.
you really do have to dictate. they always want to write whatever is quickest which never paints the full picture and that more often then not gets disabled peoples support applications denied.
Ugh that's so fucking typical!!! Figures the losers that decide on support applications only trust doctors but doctors are zero effort fuckers!!
My doctor is actually a decent guy but he SUCKS at notes, honestly I may as well write him a draft. I will stress to him when I (probably) go back for another. Thankfully I can get him to write notes without appointment...
to a doctor, and especially for any disability support applications, always answer any questions as you would if its your worst day.
I had sorta figured this out but it is good advice, abaolutely. Makes sense to me that your worst day should be the barometer for applications like that. Shouldn't have to work so hard at applications, but the system is in fact rigid and ableist...
right??? it really makes my blood boil too. i'm just glad you have a good doctor, save for his undetailed notes lol but that should help a lot.
good luck with everything and i hope you get all that you need for your support to go through!!!
Why am unable to fall asleep at a reasonable time?
This has been messing with me a lot the past week. Tired all day, brain isn't working properly due to the lack of sleep, then when it's time to try sleeping, I suddenly am excited and not sleepy, like right now.
Is this an ADHD thingy? I have been suspecting myself of having it on top of everything else, but no proof, and I don't fit the stereotype of it
If I was able to go to sleep right now, I could do cool stuff on the weekend tomorrow while at peak mental capacity, but no, now that would be a good time to sleep I can't actually fall asleep
The lack of daylight for waking up is probably not helping, but also I can't open the window because it always makes me feel like I'm being watched and then I can't asleep
I can't rearrange the furniture so that there isn't a direct line of sight from outside to the bed where I'm sleeping, either, no space here for rearranging any of the furniture
I literally got one of those sun lamps aimed at the ceiling and put it on a christmas tree timer set to turn on when I want to wake up. It helps.
Is this an ADHD thingy? I have been suspecting myself of having it on top of everything else, but no proof, and I don’t fit the stereotype of it
Poor sleep schedule is definitely an ADHD thing! Makes it hard to focus on trying to sleep instead of just thinking yourself awake
Tanya Huff's vampire books were mostly her just writing to not starve to death. The main character is a detective who's largely retired due to the same eye condition the author deals with. Kinda hits harder in the face of how Canada treats people with disabilities. I hope that Canadian writer is doing well.
I think this must have been quite common in the past. Lots of children's novels from the 20th century featured women, particularly widowed or otherwise single mothers, writing novels because it's the only way they could feed themselves and their children. Two that come to mind are The Railway Children, and Ruby Ferguson's "Jill" series. Re-reading these novels as an adult, it's actually pretty disturbing, the bits where the characters can only eat if their mother manages to sell her latest story.
going back home from college soon. feeling very stressed as my family isn't covid-conscious and are actively against me taking covid precautions. trying not to think about it too much but this has historically blown up into pretty bad situations for me.
Had carpal tunnel surgery last year and have kind of been hoping and crossing my fingers that it would finally relieve me of my symptoms, but as I'm nearing the year mark I think I'm coming to terms that this might be the best it gets for me. I can still use my hand mostly, but depending on the task it starts to go tingly and numb and I can't feel it. There's more they can try to do but I can't even get an appointment right now because I haven't finished paying off my medical debt with the place that did it.
But I think deciding to accept it is helping me turn a new leaf. I'm going to start saving for some new controller stuff so I can start gaming like I used to at one point. It will be a while until I can afford it, but I'm excited to try again.
Can I ask what kind of brace/wrap situation you work with? I don't... well I don't think I have carpal tunnel. However my hands do that too. I have been having some good success with ace wrapps. However I really only know how to use them boxing style. I did also get a racing pedal set up so I can have a few keybinds that are easier to hit.
I don't know what I would call these. I have pretty generic wrist braces I bought online. I swap it up because they can become irritating in their own way after a while. Basically covers everything but the fingers and thumb and have metal pieces to prevent movement. I wear them at night and parts of the day depending on what I'm doing. I've been considering getting some wraps for when I don't want something super clunky on me.
Yeah pedals might be a new purchase for me. It's my mouse hand that really sucks. I had a NCS done showing carpal tunnel in both hands, but my mouse hand literally lost all feeling in it at one point. Just straight up couldnt move it.The other hand just tingles a lot. Since my surgery I haven't had a recurrence of that level of numbness, but it still sucks a lot worse than my other hand.
So anyway, I want to get a couple of pedals I can use to mimic left click and right click.
Do they provide compression or support or both? Sounds like they are for support. I have been using compression so we might be trying diffrent methodology. A little USB one with two pedals ought to be cheap and easy off your preferred online retailer
If you are on computers a lot, look into split ergo keyboards too. I've seen a lot of people with carpal tunnel and other hand and shoulder issues come to the ergo keyboard subreddit asking about split boards and I even went that route to avoid issues down the road since I'm practically on my computer 24/7.
Yeah it's basically my profession. I've been considering getting one, but I use dictation if I need to do typing mostly at this point. I'm not a writer, so I don't have to be the speediest.
Dictation is probably even better then lol. I was hesitant to suggest ergo because of the unsolicited advice rule but I'm kind of evangelical about ergo and column staggered boards lol.
Oh this is my first time here so I had no idea even lol.
Anyway, you seem to be in the know. Do you have any recommendations on a split keyboard? My keyboard happens to have shit the bed recently so I am in the market for one anyway
If you want a one and done board and don't care about falling down the rabbit hole, check out this company: https://www.zsa.io/
If you do however want to go down the rabbit hole, beekeebs is a good place to start: https://beekeeb.com/
Leo at Beekeebs will build the boards for you for an extra fee if you don't wanna worry about getting your hands too dirty. He also uses Vial firmware that allows for dynamic programming of the boards with minimal fuss. ZSA comes with it's own software so it's still gonna be the easier route to go.
Always glad to help when it comes to my special interests lol. If you have any more questions while looking into keyboards I can try and help.
I love your ornament
I'm really impressed at you doing fussy cutting for your first project and keeping your stitches so evenI totally get the strain from pinching the hexies together while you sew, not beating the ad allegations but the site i keep linking you to has "sew tites" which are magnets that are really helpful for epp. I got the variety pack with different length bars which is really helpful for sewing hexie flowers. Unfortunately they suffer from the same useful niche sewing tool tax that all the new gadgets have 😭
Here's a hexie flower I did recently
spoiler
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you're so kind aaa thank you!!
i put a lot of effort into getting the balloon string to align and i'm glad to hear i'm on the right track with the stitches!omg your hexie flower is sooo pretty, i really love the fabrics you chose!!! it's like a hexie shaped window into a meadow, it's gonna be the coziest blanket tbh.
and listen it's not your fault that site has all the goodies they literally have everything loll. i'm hoping to save up to put in an order soon, strong magnets sound so much more convenient than clips.
Omg thank you
All the fabrics I'm using for this quilt are florals and they're just so cute. You really can't go wrong with a bunch of colorful flowers
I love that site so much lol, the reason I started buying stuff from them was because they have a lot of tools and also sell fabric so when I was starting epp I got the fabric and just what I needed to do some basting and sewing and over time I've been building a fabric stash and a good sewing toolkit without spending a ton all at once
I really hope you can get your stuff soon! The magnets are so nice for avoiding hand cramping. If youre interested in regular machine quilting clips can also be used for that so might be worth it trying both if you can
