Salutations Everybody!
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.
Told my healthy relative about lab tests I am having to take due to post-covid stuff.
She goes: "You seem healthy, so wouldn't worry if I were you."
And it felt deflating enough, so I said to her that sure I do, when we see once in six months. But you don't have to see me gagging and struggling to get out the door for months on end.
Just needed to say this out loud.
I had ambitions to give every weekly thread an educational OP on my continued learnings on the intersection of disability in all things like the first one, but my brain has just not been cooperating with me. It's already been a rough winter and it's only just started!! Holidays are going to get me even more
than usual as I'm sure we'll have more than enough fun covid-related developments among other goodies on the ongoing, escalating path to our collective, generational dementia. One must imagine Sisyphus happy.Solidarity, from one uncooperative brain to another.
One must imagine Sisyphus happy.
Idk if this is a "But doctor, I am Pagliacci" take but I think it's much easier to imagine Sisyphus happy when you aren't Sisyphus yourself.
Here's my latest update from my dreadful therapist who I need to keep seeing until my 6 month course is complete, in order to help me with my disability benefit appeal.
She asked for a review of her therapy and I said it hasn't helped me. She said my problems are poor health and lack of money, therapy can't fix that. (so it feels like she's just whiling her time away on a lost cause to get her paycheque). I said therapy can help with those, helping me get my benefits and reducing anxiety, getting food. She said that's not what therapy is for, and seemed annoyed. I said I thought we'd do deep dives, into my psyche to clear it out and reduce my depression, she said that won't benefit me because I'm still in the situation that is causing my depression. According to her, therapy is for helping you process a difficult experience once it is over, and not suitable for supporting you through a hard time. So again, seems like she's just wasting time to get her money rather than actually trying to help me. I told her I'd started therapy in good faith, expecting something deeper, but that's not happening so at the very least one benefit I can get from therapy is to be allowed to complete the course so the DWP don't use me quitting as ammunition to deny my benefit appeal.
Some people here recommended I speak to her about Maslow's hierarchy of needs - how can I concentrate on higher things like therapy when I'm struggling to get my basic needs met? She said then quit therapy. I said I can't, I need it for my benefits claim. She said that's not what therapy is for and it just went on and on, banging my head against a wall until I gave up.
I spoke about the fact that I see no way out other than suicide if I lose the benefit appeal, I've already made one suicide attempt (was in intensive care for 5 days) and have since made a suicide pact with someone to help me when the time comes. I would rather kill myself than be moved from shelter to shelter, or potentially be out on the streets, in winter, while having cancer treatment and recovering from a stroke. Therapy, surely, can help heal my suicidal ideation? She said no it can't because my suicidal ideation is triggered by external factors rather than mental illness. She said if I lose my benefit appeal she can give me some leaflets on accessing emergency shelters. That's all she had to say about that.I told her more about my suicide pact, how I'd found someone on a suicide forum to help me this time as I failed trying on my own last time. I told her the method is planned out and the guy is trying to procure the equipment, each of us is just waiting to see how our situations pan out before we decide whether to go ahead with it. She just said, "Don't meet someone off the internet, he could be aremoved for all you know, he could hold you captive, it's dangerous." And that's all she had to say about that.
I can't afford for her to "fire" me, so I just said OK we'll do it your way, and we did more drawing with crayons and another crappy meditation. She got the crayons out and told me to draw whatever I'm feeling. I drew a rich man living in a castle with piles of money and food, while poor people in rags starve to death in the cold outside. This triggered another conversation about my benefit appeal. She asked how I feel about it, and I said it's horrible listening to society talk about how it's too easy to claim benefits, and how most benefit claimants are fraudsters, when actually it's very difficult with endless assessments and appeals. She then said "But some people really do scam the system, so you have to understand where the people who criticise benefit claimants and call them frauds are coming from." I reminded her of my serious illness and major disability and how difficult it has been for me to claim, and she spent several minutes defending people who call benefit claimants frauds because it's hard for working people to see their taxes go to people who pretend to be disabled just because they don't want to work. She seemed very much of the opinion that it's more important to prevent fraud even if it means genuinely disabled people will slip through the cracks.
We spoke more about my destitution and fear of homelessness and she said this isn't what therapy is for, she can refer me to shelters and debt crisis people but that's all. She said if the therapy isn't benefiting me she can refer me to free classes like art or meditation. I'm not sure how that's meant to help.
The meditation she did with me involves her telling me to breathe, roll my ankles, move my legs, turn my head this way and that, etc. And this time she scolded me because my left side wasn't keeping up with the right side. I said, "You do know I've had a stroke. My left side is affected and can't keep up with the right side. I've told you I've been having physiotherapy. What else can I do about it?" She said "Try harder." And seemed annoyed. She's never brought up the difference in my left and right sides in a meditation before, I think this time she was just picking on me out of annoyance at everything I'd said.
Because my physical health has worsened, she agreed we can cut the number of remaining sessions down even further, and just do the final one in January. However, she said if asked by the DWP she will tell them I haven't been to all the sessions, although she did at least say she'd acknowledge that it's because of a deterioration in my physical condition. I hope they won't use that against me.
your therapist is an absolute nightmare and is deeply unprofessional. i genuinely believe she should be removed from the practice because of how harmful she's being toward you.
i'm truly wishing you the best with your appeal and hope that your needs will be met very soon
The therapy department has nothing but negative online reviews, every therapist here. All one star reviews and negative comments. I can only assume it's not shut down because the NHS has such long waiting lists and they need every therapist they can get? Or they just don't care, the entire department seems like it's just a box checking exercise for them to all get a paycheque.
This therapist is atrocious, I'm so sorry. I can't comprehend how people enter the Helping People field with everything on their mind except Helping People. Sorry.
It's beyond unprofessional and sounds like it's venturing into medical malpractice. If a patient says they're experiencing suicidal ideation, then absolutely there are ways to help. I've had psychologists cancel appointments with me because they dropped everything they were doing and had to go deal with another patient in crisis.
This person sounds like they wanted to become Hannibal Lector, but found out actual therapy and psychology aren't like that so the dissatisfaction gets taken out on patients. Fuck these people. Unlimited piss and shit smoothies on them from Comrade Sociopath trapped in the psych ward. Maybe the AA folks can bully them on top of that.
If a patient says they're experiencing suicidal ideation, then absolutely there are ways to help.
What are some things that can help?
The main one is taking away suicide methods. Often people who are suicidal will fixate on specific methods, such as guns. Removing those options can sometimes be enough to stop a person. The other is hospitalization, either in-patient or out-patient. It will depend on how severe the situation is, the patient's impulse control, and the patient's access to different methods.
From there, you need to create a support system for the patient. Bringing friends and family into the discussion, support groups, more extensive therapy that educates the patient on how to identify and deal with stress, etc.
Your doctor sounds like they haven't even taken the first steps at evaluating the seriousness of your situation.
None of the therapists at this place take it seriously. I was on the waiting list for this therapy for 5 years. During that time I became extremely suicidal, to the point that it scared me and I contacted the local hospital where this therapy place is, desperate for help. They squeezed me in for a one-off emergency appointment. The therapist was a hippy woman dressed in long flowing purple robes. I told her how I was on the verge of suicide and begged for help. I had my method planned and everything. She smiled serenely and told me to buy the new age book "The Secret," which is about the law of attraction, and use it to attract whatever I want into my life. Then, according to her, I won't be depressed any more. Then that was the end of the session and she pretty much shoved me out the door.
I did in fact make a suicide attempt that landed me in intensive care for 5 days. Even then, they didn't GAF. During my hospital stay, I was extremely confused due to a combination of the overdose I'd taken, plus whatever drugs they were giving me. I was so confused I didn't know where I was or what was happening. Sometimes I thought I was in my living room at home and sometimes I thought I was at the beach. In this state, they gave me two sessions, right there in a nearby part of that hospital, with a therapist. I was so unwell I had to lay down during the sessions and wasn't even sure what was going on. After the first session the therapist showed me out of the door and I was so confused I couldn't find my way back to my ward, I didn't know where I was going or what was happening and ended up just sitting down in a corridor. Eventually when I didn't return to the ward they came to find me.
After 5 days I was deemed physically well enough to go home, and was discharged with no follow up mental health appointments. Seriously, no-one cares, I am used to it. Just like the government/DWP don't care if I starve due to lack of money. I'm now just tolerating this current therapy to help me win my benefits case.
Yeah this sounds awful. Mental health isn't taken seriously and it sounds like you're in a location where it's especially bad. It's in the UK, right?
Yes, I don't think any health issues are taken seriously. It took them nearly 4 years to diagnose my cancer because they refused to do any tests, they kept telling me I was just either depressed or a hypochondriac.
Thanks. She said other stuff too, I can't remember all of it but I remembered one other thing. I've told her about this forum before, about how a couple of people here helped me get food, and she was appalled at me for begging strangers for help and told me to stop doing that. In this most recent session she told me I should join a class to get a social life, and because I don't feel well enough for activities like that at the moment, I reminded her about this forum and told her the people here have been nice to me and I have all of you to talk to. She asked a bit about it and when I said it's a socialist/communist forum she told me to stop talking to you all because you'll put ideas in my head and I'll get brainwashed.
It shows she doesn't even really listen to me, because I've already told her I'm very much far-left, nobody is brainwashing me, I already think these thoughts, and also she'd apparently prefer me to have no-one at all to talk to if I'm not up to doing activities in real life. And she'd prefer I have no food either since she told me to stop asking for help getting food on here.
Thanks. The impression I get of her isn't that she's been hurt, but the total opposite. She just comes across like she's never had an actual problem in her life. She's very young and seems to have had a very easy life. She seems to have no concept at all of problems. Like she seems to just genuinely not even comprehend the fact that with no money and a very difficult to access local foodbank, no family to help, I can't get food any other way than either shoplifting or begging. She seems like she really doesn't understand this. Or like she thinks help is much easier to access than it is, because she's never had to try accessing it. Same thing with my fear of impending homelessness, she just doesn't seem to understand why losing the roof over my head is such a big deal to me. She always says "I can give you leaflets about emergency shelters if it comes to that." She just won't even try to understand that having to pack up my belongings, move from place to place, perhaps end up in a bad shelter or even on the streets, while I'm having cancer treatment and recovering from a stroke, is just too much for me and I would rather die.
But then, a lot of society seems to be like this. Like "society has a safety net," "there is help out there," these people just don't understand that if you're ill or disabled and live like this for years on end, or perhaps even permanently, it completely wears you down. Every day there is some problem, some battle to fight. Like, OK we have disability benefits. But it's an endless fight to keep them, with constant reassessments and appeals. There is no financial security. And yes we have foodbanks, but in some towns it can take over a week to access, and they give you three days worth of food and then you go through the process again you always have at least 4 days without food in between. And the food they give you isn't nutritionally adequate, if you have to survive on it for long periods you get deficiencies. And yes there are shelters and things for the homeless, but sometimes they're full or deeply unpleasant or difficult to access or whatever, hence many people ending up on the streets. It's not easy and it just doesn't end. When you live like this for a long time, it's reasonable that suicide seems like the only viable option. Then people insult the person who dies by suicide, "What a selfish person, how could they do this? Didn't they know people cared about them and are hurt by their suicide? Some poor person had to find the body!" Constantly blaming the dead person rather than admit that society drove them to it.
anyone have any advice making friends while immunocomprimised, i've basically run out of pre-covid friends that talk to me on a regular basis and im getting really lonely now. I've got no idea where to even begin
Maybe you can try to find local support groups? In my area there’s a network for people with chronic illnesses which I want to join when I feel like I have the energy for it. I think it’s easier to connect with people who have a similar disability, because they understand the importance of masking etc.
as another immunocompromised person who has also run out of pre-covid friends that talk to me on a regular basis, I wish I had advice to give you, but I’m in a very similar place myself. I am clinging to anyone I have left for dear life, online or otherwise, and trying to figure out what space I can carve for myself in this hell world.
Have you looked for covid conscious groups in your area? If they exist they may have something.
I would love to not dwell on all the time that I miss when I'm in tremendous pain, so if obligations would stop piling up while I'm down and out that would be much appreciated. Also, obligations cause stress which causes migraines, so the avalanche of misery just keeps gaining momentum. Is this dialectics?
Anyone have any good readings on alleviating the mental health consequences of chronic pain / disability?
I hope everyone is doing okay this week. Know that I'm thinking of you and sending virtual love and a safe space to be at peace. Take care of yourselves!
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I'm absolutely emotionally wasted. My head is buzzing and it feels like I've left my body... how can this be our life?
negative, chronic pain
Awake early in the morning, unable to sleep, blegh. Shouts to being kept up by bodily decay of unclear cause.
EDIT: I cracked and took a tramadol to stop hurting and sleep, which sucks. Blegh.
addendum
I should NOT have taken that tramadol. It's fucking with my head really badly.
Probably not super disabled related(unless you count autistic rigid rules/schedule) but today is my first day flying solo for my job. I did my on the road training last Wednesday and I guess they wanted me to wait until I forgot how to do anything to throw me into the grinder. I've been working over how this morning will go in my head the entire time since it's the most chaotic part of the day.
- get to work,
- clock in
- wait around until we get shuffled off to the vans
- do "standup"
- log in to phone we use
- log in to both apps
- start pre-shift vehicle inspection
- get in queue to load van
- pull van into loading bay(lights on, hazards on, windows down, radio down, 5mph
- get go ahead to get out of van and go grab my carts, bring to van and scan in
- get van loaded in a organizational method that almost makes sense
- be done in 12 minutes
- wait for bullhorn dude to say my lane can leave, then leave
- also wait until first stop to reorganize packages as I need them
After that, I get to establish a routine which is nice. There are gonna be a few bumps along the way though. I am dreading dealing with large dogs and language barriers. But once I get this all going, I get to listen to music and just vibe while delivering Amerikkkans there 2 day delivery treats.
Anywho, I hope everyone who had a shitty Genocide Celebration Day in the SStates is able to recover today. That's probably my only real complaint is that I'm still buzzy from overstimulation due to yesterday and now I get tossed into the grinder. I don't get my required 36 hours of decompression.
Day 3 of this job is today. First 2 days, I was in severe pain. I might get a back brace on my next paycheck. I woke up this morning and felt a bit better but legs and lower back still do hurt.
I had to get composite toe shoes and those fucking suck. They are heavy and don't fit as well as my Asics Dad Shoes. Btw, don't wait until you are a dad, Asics are really comfy tennis shoes. But these big ass work shoes fuck with my walking all day so that's cool. I'm thinking about looking for shoes that look like work shoes but aren't. I need light and flexible, breathing shoes. These ain't it. They are getting broken in at least.
I have resorted to eating processed vegan treats for my food while driving since it's no thinking involved. I get my Lenny and Larry's cookies which is great because I fucking love those.
But I am literally moving and driving for 11 hours a day currently. It's rough. I do get to blast deathcore while driving and the vans have good speakers unlike my car, so that's a plus lol. I just worry that doing 3 days on, 4 days off is gonna drain my energy for my off days and then that might affect my web dev stuff. I am gonna try to get a site I'm working on for some friends finished this week and maybe try to get it online next week. I mean it's online now but it's under a freebie domain via netlify and it needs some copywriting stuff done. Gonna talk to one of them that I'm making it for about the verbiage this week.
I'm tired but I hope I get into the grove because outside of the long hours and body pain, the job isn't too bad. I get to work by myself basically all day and only see customers a few times. So it's kind of an introvert's kind of job if they can handle the physical aspect.
almost at the end of the "we should update you before this amount of time has passed" waiting for disability aid assessment and they still havent updated it at all lol
The last thread got locked but if you give english paper piecing a try I can definitely give advice! I'm not an expert but I'll try to answer any questions you have
Im very excited to have a fellow leftie fiber artist who's also disabled to talk to about projects
Also @glans@hexbear.net thank you for the other weaver info 👁
aaah yay! i'm genuinely really happy to be able to chat with you too!!! i'm already making plans to go and get some fabric once finals are done
Im excited for you!
I dont know how much sewing equipment you already have but if you want to start slow to save money (or at least make it so youre not spending a lot a once) you can get "mini charm packs" which are 2.5"x 2.5" and have a collection of fabric, they're the perfect size for the standard size 1" hexie or get "jelly rolls" which are long strips of 2.5"x~40" and you can just cut them with regular scissors for the time being if you don't have a cutting mat and rotary cutter already
Then you'd just need thread, a glue stick if glue basting (can be a regular Elmer's, preferably colored so you can see or one specific for glue basting), a needle, pins, and templates to start the project
ohhh that sounds perfect, i'm definitely gonna get one of those packs you mentioned!
i was overthinking how much fabric i might need so i'm glad there's little sets, especially since i need to practice my sewing anyways.
some supplies i do have lying around, but i'm missing a few things like the rotary cutter and specifically sewing thread. what kind of thread do you usually use?
I use regular 100% cotton 50/3 thread for piecing and basting (I double it for basting because I use longer lengths and it tangles less for me)
Most people use a thinner thread for piecing and I might when I run out of the 50/3 I have but I'd recommend trying a few types and seeing what you like
If you don't like one type for piecing you can just use it for basting
Cw: bipolar, organizing
spoiler
Thinking again about how to the intensely disruptive nature of bipolar it's very difficult for us to form advocacy groups or agitate for our needs.
Been babying my wrists/hands for a few days and was rewarded with being able to do some more basting for my quilt today
Also ordered the rest of the fabric for the quilt top because I realized if I cut the fabric for the center of the flowers and baste them now, I can start sewing some of the flowers together so if I get bored I can just do a different part of the quilt instead of starting a new project for a little while
I know I’ve been pacing well when I start to forget that I’m ill because my symptoms get very mild. Now I only need to keep reminding myself that that’s good and it means I should continue pacing and not doing more activities because that’ll just result in another crash.
Not being able to work out is my biggest pain probably. I hate how weak my body has become and I miss the euphoric feeling I used to get from exercise. Just thinking about it makes me want to cry lol. Neutral intended post ended up sad, sorry :(
Doing preventative measures always ends with me wondering why I do them and then needing them and more again :(
Have you ever thought about doing small amounts of exercise in your own space?
There are small exercises that you can do which can be as brief as you like, and plenty of them don't require a lot of space or expensive equipment.
As an example, I have a rebounder - a mini exercise trampoline. Not the cheapest option for exercise equipment but far from some of the more ridiculous prices. I spent a bit extra to get a rebounder that folds in half and has clip on legs rather than screw-in legs because I have limited space and honestly the idea of screwing and unscrewing 6-8 trampoline legs every time I use the thing is just... nope, my executive dysfunction could never.
What I can do is to pop out the rebounder in probably 30 seconds or less, get some aerobic exercise (it's also a really pleasant vestibular and proprioceptive stim for my autistic brain) for however long (i.e. short) of a time I want and then I can tuck it away or I can leave it out and do a little bit more exercise later on if I have the energy to. It's also gentle on my knees and it's good for the lymphatic system. Idk what shape lymphatic system is in but if I can improve it then it's one less thing that might drain my limited energy.
Other options might be a physical game like Just Dance or jump rope or doing step aerobics or isometric exercises.
Obviously if you're part of the low spoon gang you want to be very careful about how much exercise you engage in and what intensity you go for. And it's going to depend on your physical needs and limitations, of course. But having small, easy exercise options available at home means you can literally just do a minute or two if that's all you've got in you on that day, which makes it ideal for meeting your need for pacing yourself.
Going to the gym is a big commitment and personally I'd struggle with feeling embarrassed by how limited my capacity is and how much rest time I need. Plus I'm not shelling out all of the cash and eating up precious energy getting ready and travelling to the gym just for 15 mins of exercise. Not on your life. But it's much more accessible to have a punching bag in your garage or a yoga mat under the couch or a couple of dumbells that you can just grab on a whim to put in a couple of minutes of exercise before you take a break until the next time you're ready to do it.
You know yourself better than I ever could but it's just some food for thought. I know even very small amounts of exercise can have a noticeable benefit on my mood and my sleep so this is how I manage drop the bar low enough that it's possible for me to exercise, despite my limitations, and it's been really important for me to do a sort of personal inventory of what I want and what I need, what makes it difficult or impossible to do these things the ways that I used to be able to, and then developing some strategies and accessibility tools to find that sweet spot where ideally I can meet my different needs. This is basically me becoming my own armchair occupational therapist and I strongly recommend it.
Anyway, just spitballing and sharing some ideas that I wish someone had shared with me a long time ago.
Mental health getting through a book rn on Internal family systems
aaaaaaaaaaahhhhhhhhhhhh fuck have to keep taking breaks because it gets too real and realization is a cold hard mother. It is gonna be a while before I get through the book fully and probably longer for me to get to all the exercises but damn glad this ended up in my hoopla recommendations. For a while I've been trying to get in touch with my parts by myself with limited success so glad I came upon this audiobook. Having something finally named and knowing other people do it too feels like the first time I learned about what being queer, nb, and neurodivergent all over again happy the lexicon is in front of me annoyed I only found out about all this in my 30s 
please feel encouraged to say more sometime when you have the space for it, I would love to know more about this
will do, the book is called "no bad parts" by richard c shwartz if you're interested in checking it out. Really describes a lot of what I'd been attempting for a while on my own but way better.
my own stuff
Guess for a while I was trying my best to reconcile all my twisting and contra dictionary feelings/thoughts. Desire to be masc while hating I looked masc, the use of various pronouns of which ones felt good. There was also something deep in me longing for some sort of companionship that I wasn't getting so I started talking to myself and was surprised how easy a response I got back. It was something I kept private and slowly started confiding to people I trusted but the more I did it the easier it got. Part of me for the longest time has gone not thinking about things and repressing but I try to make time every night to get in the right head space and check in if that makes sense. I've gotten very confused when I'm interrupted when I'm in this state and it takes me a while to comeback but I've been trying my best to do this talk/check up outside of just night time.
The book has mentioned some interesting stuff like the blurring of boundaries that make a lot of sense or of different ways of thinking of the mind that I really subscribe to.
