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.

  • khizuo [ze/zir]@hexbear.netM
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    5 hours ago

    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.

  • Even though my ankle hasn’t healed since May, I’ve gotten used to using the knee scooter to get around and my balance has improved enough that I can use it without help. success

    Not much I can do about the executive dysfunction, though. My psychiatrist decided that prescribing me promotional medication took priority over medication that actually works.

    I knew it wouldn’t work. Was supposed to work same-day, no help at all for the entire week I took it. All side effects and no benefit.

    • hexbee [she/her]@hexbear.net
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      6 hours ago

      May I ask what “promotional medication” even means? Like some company is paying your psychiatrist to push a specific treatment instead of what you actually want?

      • Yep. Unfortunately, it’s a common practice in psychiatric medicine in the US. Instead of prescribing the standard medication that should seem obvious, they prescribe a medication that they were paid to prescribe to a particular demographic of patients. Oftentimes, these medications develop a dependency.

  • The_sleepy_woke_dialectic [he/him]@hexbear.net
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    1 day ago

    Has anyone ever compiled a mostly comprehensive list of activities of daily living? I’m going from unmedicated mental health to medicated. I feel like I’m truly alive and awake for the first time in a decade and building a lot of habits I should have had for a while. A list that includes everything you “should know” from brushing your teeth and up would be genuinely helpful.

    Breakfast, lunch, dinner. Taxes. Think about buying gifts x days before event/holiday. Wash clothes/bedding. I usually remember 98% of it but sometimes I’m just completely blind to something glaringly obvious until it reaches a real crisis point. I think to myself “Am I forgetting anything?” several times a day, and a list would come in handy then.

    • un_mask_me [any]@hexbear.net
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      19 hours ago

      I can attempt to put one together tomorrow, and maybe others can chime in once we get the list started. I have taken a lot of mental load off of myself by having sets of instructions for things, even as simple as doing laundry, but I’ve never really written them down in one place, so it’s a good opportunity to do that. If you haven’t heard from me for a bit I probably ran out of spoons, but I do want to try! Glad you’ve been on the mend, and thank you for the idea

      • The_sleepy_woke_dialectic [he/him]@hexbear.net
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        17 hours ago

        Its like all the people who need such a tool aren’t really in a position to make it, and all those who don’t need it can’t understand why it would be necessary, or what it should include. Some catch 22 amiright?

        Absolute needs:

        • Food
        • Fluids/water
        • Sleep
        • Medications
        • Temperature
        • Rest/Recalibrate (Do I need to remove myself from this situation momentarily?)
        • How do I feel?
        • Am I thinking clearly?
        • Check if injured or sick

        Should do daily:

        • Brush teeth 2 or 3 times
        • Bathe/wash
        • Eat 3 meals
        • Drink 2 liters of fluids
        • Take medications
        • Feed/Water pets
        • Wash, Dry, Fold laundry
        • Vacuum/tidy at least one room
        • Take the trash out (Is it trash day tomorrow? Is the dumpster out?)
        • Wash dishes, put away
        • Wipe counters
        • Water plants
        • Check mailbox/emails
        • Shave?

        Prepare for tomorrow:

        • Wash/pick out clothes for next day; Top, Bottom, Underwear, Socks, Shoes, Hat, etc
        • Gather other things needed for day; Car keys, Wallet, Cash, etc
        • Pack lunch if necessary
        • Arrange transportation, check gas/charge, tire pressure
        • Set up coffee maker
        • Check weather forecast
        • Check calendar
        • Check in with others about/confirm plans
        • Set alarm
        • Get to bed in time for 9 hours sleep if possible, screens off 1 hour before bedtime
        • Have meds and water ready by bed for morning
        • Plug in phone before bed

        Weekly:

        • Change bedding
        • Schedule appointments
        • Exercise, 2-3 times if possible
        • Make todo list
        • Sticky notes for things you might forget to do, in a place you can’t miss
        • Meal planning
        • Grocery shopping
        • Check in with friends/family
        • Weekly medication?
        • Trim finger/toenails
        • Pay bills
        • Charge phone minutes

        Just a few off the top of my head. Thanks for the support meow-hug

        • dustbunnies [she/her, comrade/them]@hexbear.net
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          13 hours ago

          meow-hug I think your list looks good! it’s very thorough already, I can tell you have put a lot of thought into this.

          some ideas for edits & additions:

          Laundry
          if you can afford it & can store them, it can be helpful to have enough changes of clothing to only have to do laundry weekly instead of daily.
          you could do a Home Day once a week, where you do meal prep and other cleaning in between loads of laundry and get your bedding, towels, and clothes all done in the same day, but I find it’s less overwhelming for me to have a Clothes Day and a Towels Day and a Bedding Day.

          Exercise
          trying to make this a daily habit helped me get better at actually doing it 2-3 times a week 🤦🤷 maybe you’re more disciplined than I am 🙃 but if you find this hard to do as a 2-3x/wk, maybe try breaking it into daily 15 minute sessions and see how that goes.

          To-Do List
          this is another thing I had to move to daily for similar reasons

          Sticky Notes
          no suggestions on the placement of this, just have to know: do these work for you?!?!? genuinely envious 😅 for me, they quickly just become bright, beautiful visual clutter that gets filtered out once I get busy or overwhelmed. I have to put things on my phone calendar and set up several reminder notifications in advance 😐

          Taxes
          Weekly: enter & categorize receipts in spreadsheet, put other records to appropriate files/piles.
          Monthly: sort & total income & expenditures.
          Annual: check everything, file taxes.

          Gifts
          put their dates on your calendar. (Google calendar automatically adds birthdays etc from your contacts, others probably do the same.)
          have an easy-to-access note/list on your phone (or something else that is with you whether you’re at home or out & about); add to it whenever your loved ones mention their interests or needs or when you see something you think they might like or find useful.
          Weekly: check for important dates 2-3 weeks out; make or shop for card & gift.
          Monthly: is it November or December yet? if yes: Stress About Holidays. if no: try to forget the winter holiday season exists. ❄️🙃❄️


          spirit-bomb you got this ❤️

          • The_sleepy_woke_dialectic [he/him]@hexbear.net
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            6 hours ago

            The sticky notes do work for me when I’m very overwhelmed, in fact I just use some of those little tiny ones you use to highlight sections in a book and don’t even write anything on it. I often put one on the door knob while thinking “remember to grab the X you need today” and I’m not allowed to remove it until I physically have it in my hand. I also try to dedicate a specific place for all the things I need and collect them, or a “token” for them, in that place. Like if I need to remember to bring something like pasta salad with me which has to stay in the fridge, I’ll put the serving spoon on the table instead.

            All this stuff sounds like the kind of advice people give you, and you think “if only it was that easy” it isn’t so easy but it’s all you can do you know?

            I don’t tend to “forget” exercise when I’m on top of it. I start feeling really antsy when it’s my “day” but if I can’t exercise that day for whatever reason that’s inevitably when I fall off. The 2 feet of snow certainly isn’t helping right now.

            These are great additions dustbunnies thank you <3 You got this too!

    • hexbee [she/her]@hexbear.net
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      1 day ago

      I’ve thought about making such a list for a long time, but I don’t think I’m in a “alive and awake” enough state to actually acomplish that ┐⁠(⁠ ⁠˘⁠_⁠˘⁠)⁠┌

      • The_sleepy_woke_dialectic [he/him]@hexbear.net
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        24 hours ago
        CW: ableist self talk and suicidal ideation

        Sorry if that sounded ableist. I don’t know any other way to describe it. Just trying to deal with the guilt and pick up the pieces as best I can after being incredibly depressed for a decade. It feels overwhelming sometimes. I look back and think “What a useless piece of shit you are. Look at all the time and resources you’ve wasted” and then remind myself that considering the best means of killing yourself every day and literally feeling like your body is made of hundreds of pounds of sand isn’t a normal mental state and perhaps I should forgive myself somewhat. I would never feel that way about anyone else in my situation.

        If I can stick to a list I can power through a little easier without being uselessly self critical.

        • hexbee [she/her]@hexbear.net
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          22 hours ago

          Oh no, I was being genuine - I’m very sleepy and tired like 95% of the time. And I’m glad you’re feeling better, it sounds wonderful! I honestly didn’t know that could even happen, so your story inspired me too. I will give making that list a go.

          I think my main challenge is to conceptualise what kind of things are too small to include in the list, because I don’t want to end up spending half the day writing about the things I’m doing in the other half of it… I already struggle with keeping up with basic admin and now I’ve got admin for, like, everything? But I won’t figure it out until I give it a proper try I think.

          • The_sleepy_woke_dialectic [he/him]@hexbear.net
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            18 hours ago

            Mine is the age-old “Tried every antidepressant around but really needed a stimulant” story. Depression generally tends to get easier to manage as you get older and your hormones straighten out, so you can look forward to that.

            It’s hard to know where that cutoff is and it’ll be a little different for everyone shrug-outta-hecks
            I hope you find something that works too.

  • x87_floatingpoint [he/him, it/its]@hexbear.net
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    2 days ago

    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 catgirl-flop

    • Aradina [She/They]
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      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

    • x87_floatingpoint [he/him, it/its]@hexbear.net
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      2 days ago

      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 screm-aaaaa

      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

  • ashinadash [she/her]@hexbear.net
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    2 days ago

    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 kkkanada 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…

      • Aradina [She/They]
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        1 day ago

        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.

    • whatnots [he/him, it/its]@hexbear.net
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      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.

      • ashinadash [she/her]@hexbear.net
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        2 days ago

        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!! badeline-rage

        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…

  • Ivysaur [she/her]@hexbear.netOPM
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    3 days ago

    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

  • SpiderFarmer [he/him]@hexbear.net
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    3 days ago

    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.

    • DisabledAceSocialist [comrade/them]@hexbear.net
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      2 days ago

      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.

  • whogivesashit@lemmygrad.ml
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    4 days ago

    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.

    • CrawlMarks [he/him]@hexbear.net
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      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.

      • whogivesashit@lemmygrad.ml
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        3 days ago

        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.

        • CrawlMarks [he/him]@hexbear.net
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          3 days ago

          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

    • roux [he/him, they/them]@hexbear.netM
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      3 days ago

      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.

      • whogivesashit@lemmygrad.ml
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        3 days ago

        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.

        • roux [he/him, they/them]@hexbear.netM
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          3 days ago

          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.

          • whogivesashit@lemmygrad.ml
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            3 days ago

            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

            • roux [he/him, they/them]@hexbear.netM
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              3 days ago

              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.

  • DisabledAceSocialist [comrade/them]@hexbear.net
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    5 days ago

    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.

    • hexbee [she/her]@hexbear.net
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      3 days ago

      What can I say but death to fascist britain.

      I think you’re completely spot on when you say that what’s happening to you is social murder. They don’t want to do it explicitly, because that would require acknowledgement that disability exists - part of the erasure of “undesirables” isn’t just the physical erasure of bodies and lives, but also the erasure of the very idea of you and the history of your existence. Similarly to how my mother will not acknowledge my transness and views me as her confused “son” because that allows her to ignore the existence of trans people, the pharmacist viewed you as a pathetic “normal person” who just can’t get their shit together and drains NHS resources because that allows them to ignore the existence of disabled and chronically ill people.

      Personally I’m quite sceptical of the legalisation of assisted suicide, which I’ve seen movements for amongst the british ruling class. The way I see it, it will make it acceptable for all the professionals you’ve talked about to just say “well if you’re not happy then just kys”. It already feels like that’s what they’re actually thinking and conveying, even if they won’t say it out loud right now. Death camps are just a natural, logical conclusion of this type of thinking.

      Things are so bleak… Let’s do our best to survive another week comrade.

      • DisabledAceSocialist [comrade/them]@hexbear.net
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        3 days ago

        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.

        • hexbee [she/her]@hexbear.net
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          3 days ago
          cw: suicidal ideation, genocide

          But for me, I really hate being alive and I do wish it was over

          I completely get that. I wouldn’t say I’m completely in the “want to live” camp, but I am fortunate enough to have one or two good things in my life I’m still clinging to. Although there are times (sometimes very long stretches of time) when I really question why I’m still going. The best I can usually come up with is “I will upset the couple of people still close to me if I dip out early” or “maybe I can stick around long enough in case something drastically changes”. The latter is especially hard to cling to when even organising spaces struggle so much to take disabled people’s perspectives and needs seriously.

          Keeping in mind though, that these feelings are the desired outcome of the british system, it does sometimes give me fuel to keep going sometimes out of pure spite, but the longer I’m around the more it just feels like all the suffering is slowly driving me mad.

          from my point of view, society legalising assisted suicide or even forcing us into gas chambers to die would be a relief

          This sentence should tell people everything they need to know about how disabled people are treated in society. Alas, the brits don’t know the meaning of solidarity or even empathy tbh

          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.

          Thank you comrade; ain’t that so…

    • Wertheimer [any]@hexbear.net
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      4 days ago

      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.

  • Blockocheese [any]@hexbear.net
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    4 days ago

    @whatnots@hexbear.net

    I love your ornament kitty-cri-screm I’m really impressed at you doing fussy cutting for your first project and keeping your stitches so even

    I 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

    • whatnots [he/him, it/its]@hexbear.net
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      2 days ago

      you’re so kind aaa thank you!! meow-melt 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.

      • Blockocheese [any]@hexbear.net
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        7 hours ago

        Omg thank you crush

        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 big-cool

        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

    • blight [he/him]@hexbear.net
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      3 days ago

      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…