If you carry one thing with you today, let it be this: you are beautiful, you matter, and you are loved.
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’m so tired for no particular reason
I have a proletariat palette. The cheap olives taste really good, but the more expensive ones taste like soap.
Now my landlady’s car is having a problem. We already can barely pay for petrol, I’ve had to make a mutual aid post for help with the repairs. Another wonder of being disabled - if I could walk more than a few minutes it wouldn’t be an issue, I could just walk or get the bus. But the nearest bus stop is half a mile away. When you’re disabled every problem is magnified.
Have you considered changing your name to Job?
Also could a walker or a wheelchair or any other kind of mobility aid do anything for you (Ignoring the issue of the cost of a suitable wheelchair for the moment)?I’ve looked into a mobility scooter. You have to pay for that, even to use one temporarily, so no. I don’t think I’d even be considered disabled enough for a wheelchair on the NHS and even if I was, you often have to pay towards that anyway. I have been lent crutches on the NHS for free but it’s hard getting around on them, I don’t have much upper body strength.
Hmm. Sometimes you can find a cheap wheelchair for sale but its always one of those unmotorised ones and that may not be a solution if you don’t have the upper body strength, and they’re a nightmare to get into busses if you don’t have someone to set up the ramp. I wish I had a solution for you. All I can say is hang in there and I hope it gets better.
neurotypical bodies are machine that turn basic misheard knowledge about disabilities into a slur against anyone who disagrees with them.
GUYS ISN’T TRUMP LITERALLY A [mental disorder that they just learned about].
I got a shift, I can afford medication. It’s… uhh. The most direct route involves taking a bus in the opposite direction so I can take a train going the wrong way that connects to another train that goes the right way so I can catch a bus that connects to another bus that gets me there.
Yey to shitty public transport and you getting a shift
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I got the blood tests done today. I googled “hair loss blood tests” and wrote a list of them all. I gave the list to the nurse, well phlebotomist. They actually now have a dedicated phlebotomist at the surgery which is a new development. They’ve just started doing it by computer now. You used to get a paper form for blood tests and the doctor who ordered them would tick each box they wanted you to be tested for. But now they have to click each one on a screen. She hadn’t heard of some of these tests and was having trouble finding them on the screen. I started to worry that maybe google was wrong, maybe these tests aren’t real and I would get caught out.
She asked “Who ordered these?” I said, “The endocrinologist.” She said “I can’t see anything about that on the computer.” I tried to think of an excuse for that and said, “Oh, uh…um…I…it was a follow up phone appointment. They just told me to get these done before my next face to face appointment.” That seemed to make sense to her and she accepted it and eventually managed to find the tests on the computer and did them. I guess the endo will wonder what’s going on and why they’re sending all of these random test results over.
This is the deviousness and subterfuge you have to go through to get medical help in this country.
The drop in services in the past decade is truly shocking. Don’t feel bad about doing what you need to. Don’t let the system discard you and leave you for dead purely out of the idealist perspective that it should simply help if you engage with it politely.
Thank you.
It almost sounds like they automated as much as they could and never trained/informed the people actually using the new processes?? Maybe that’s giving them too much credit. Like they’re forcing incompetence and negligence through “streamlining”… what the fuck. If the endo questions it, maybe it’d work to just gaslight them like “Your office told me to get these done over a phone call from however many months ago”, or something. It feels gross suggesting it, but at the same time your health should be a priority considering your medical history. I hope you can get some proper treatment soon, love. Whatever works in your favor at this point.
Thanks. I thought if the endo questions it, I would pretend it’s crossed wires. I could say “I asked for these tests to be done and sent to you but I never said you ordered them.” And just act like the GP’s office assumed the endo had ordered them.
I am so glad that deviousness and subterfuge got you the tests that you need. Now let’s hope the results will help you with the treatment. Keeping my fingers crossed, love.
Thank you!
Hey loves,
I just had to come here and share this amazing update with you all, we did it! We got the full amount to cover my sisters’ hospital bills. Thanks to your support, donations, shares, and kind words, they’re safe in the hospital now and getting the care they need.
I can’t even explain how much this means. It was such a scary time, and you all showed up for us in ways I’ll never forget. Your love and solidarity honestly saved lives, and I’m so, so grateful for this community. 🙏🏿
Right now we’re focusing on helping them heal and trying to find somewhere safer to move so we can start to feel okay again without living in fear.
If you still want to support, my mutual aid link is in my profile but today I just wanted to celebrate this big step forward with you and say thank you from the bottom of my heart. 💜
Seriously, thank you, thank you, thank you.
Amazing news, darling! Thank you for sharing, we love having you. Hopefully you can find that safe space and healing soon. Wishing your sisters a speedy recovery
Thank you so much, love ❤️ Honestly, your words really lift me up. We’re just trying to take it day by day, and having people like you rooting for us makes all the difference. I’ll definitely keep you updated. Big hugs back to you!
Not so fun fact I learned today! They can reduce your SSI and make your spouse make up the rest if you get married. It even applies to common law marriage. That’s just straight up eugenics, but what do you expect from the world’s most evil, genocidal, settler-colonialist country in the world behind Isnotreal!
Is it eugenics because it’s a disinsentive to get married as a disabled person? I never thought about it that way but it makes sense. Education about eugenics is very lacking in schools given how dangerous and prevalent it is. I’d like to learn more about its history, what role it plays in today’s society and how to tackle it for disability rights movement if anyone has book recs.
Robert Chapman’s Empire of Normality is exactly what you’re looking for
Thank you, this seems like a great book
In my mind it disincentivizes disabled folks from starting families since marriage has a lot of benefits for couples with children. Sure an extra $2000 tax break is a big help but it certainly doesn’t cover that lost monthly income!
Yes that makes sense. The way our governments ‘help’ us with below poverty income that is only given if you basically work a full time job in proving you’re actually too sick to work and on top of that is controlling your life because of all the rules attached is truly rage inducing :)
basically work a full time job in proving you’re actually too sick to work and on top of that is controlling your life because of all the rules
THIS. I get so angry when people claim disability claimants sit around having a nice time for free. It’s a full time job being disabled with all the insanity you have to go through to get and keep benefits, plus appeals, endless medical appointments and treatments, etc.
Although I’ve never had any interest in getting married myself, I’ve always been angry about the lack of marriage equality of disabled people and the fact that nobody seems to care. I’d never thought of it as being eugenics before but that makes a lot of sense.
That’s almost comically evil wtf. How much is it reduced? And what if your spouse can’t pay?
I’ve read anything from 25% to 70% and the worst part is they also go after Medicaid benefits
If you and your spouse are both on SSI I believe your combined benefits drop by at least 1/3.
yep. and SSI isn’t enough to live on, so you gotta have someone supporting you… i have many disabled friends who live with abusive/transphobic parents still because they just can’t get out. another disabled friend who got married, and she’s completely financially dependant on her husband. they have a good relationship but it’s so scary to think about how ripe that kind of dependence is for abuse
I am not quite sure where to post this, so I’d prefer to share it with you lovelies. The healing journey is on a good way and while I’ve had setbacks, it’s still going well. However
I got a mail two days back that my storage compartment (for quite literally everything that I own, since I don’t have my own apartment atm) “possibly took some water damage”. As it turned when I went to check, the only thing that didn’t get damaged was my box of memorabilia and books, some of them aren’t even available for purchase anymore. While that was a huge load of my shoulders, my entire bed, including the mattresses, is a huge fucking sponge. A couple of other things got damaged too, which leaves me with having saved a box of books and mementos, two boxes of dishes and kitchen stuff, a chair and a cheap footrest. I don’t own much beyond that, and it’s never really bothered me, but I would’ve preferred to keep the bed. It was really nice.
I filed a damage claim offered by the company who rents out these compartments and if all goes well, I should get compensation for the entirety of the broken stuff. But, you know, paying nearly a 100 bucks a month for 2 years to store something securely, I’m pissed that it wasn’t secure. Not gonna get that money back, and it wasn’t even enough to get all my stuff back.
Worst part is that I just feel numb about it. I nearly lost my most precious books and mementoes, and my only reaction was to write the damage claim.
Update: The damage claim was not being processed! I just received the most audacious mail. The owner told me in so many words that my storage unit has already been put up for rent again, my access codes have been switched out, and I’m supposed to let the owner know when I intend to clear out the damaged stuff, since I’m no longer renting the place, and it should’ve been cleared out already since I cancelled the contract.
I told him that I was instructed by his company to leave the damaged items there until the damage claim has been processed and only to remove them once this was done, that I find it ridiculous that he’d change my access codes before ever confirming the cancellation of my contract (I received neither an email nor anything else that would confirm the cancellation), and that I will only remove my stuff once the damage claim has been processed and under the condition that until then, my access codes be restored.
I’m ready to spit acid.
Glad to hear you’re healing. Sorry to hear about all your property getting damaged. It’s outrageous that they won’t also refund you for the years of storage. Maybe a no-win no-fee lawyer or blast them on social media until they reimburse you fully? If you share the name of the company maybe we can start an email campaign to get them to refund you properly.
I’ll see what I can figure out, but I thank you for the suggestions. I don’t have any social media anymore, so I guess the lawyer would have to be it. But maybe I can get around the lawyer and figure out another way. I’ll see once they reply.
Thank you love
You could leave them a detailed negative review on trustpilot. I had an unsatisfactory experience with an optician once, left them a neg on trustpilot and the optician saw it and refunded me. Or we could all bombard them with emails. Hope you get it sorted one way or another.
That is a good idea full of deviousness and subterfuge
I might just do the trustpilot thing, thanks!Make sure it’s polite and factual but very detailed about all the things they did wrong (letting your stuff get damaged, refusing to refund for the years of storage and anything else you can think of.) No angry ranting. Include the total amount they owe you including the years of storage. Include dates for authenticity. Sound sensible and rational, no raging, just pure facts, they’re more likely to take you seriously.
I will, I got some practice writing these types of complaints, so I’m actually kinda looking forward to it.
Ohhh love, I’m so sorry you’re going through this . I’m really glad your special books and memories were saved, but it’s so unfair you lost so much.
Sending you all my love and hoping the claim goes smoothly. Please take care of yourself 💜
Thank you Onandrah
$2400 might still be small claims court, idk if it’s ever possible to get a company like that for breach of contract or false advertising or the like
I don’t know either. What I am going to do is ask for the money for the stuff that got damaged and for an immediate cancellation of the contract. This isn’t gonna be great, but that’s the stuff that I can get back, even according to their user agreement. If they refuse, I might just go ahead and figure out what I could get them on.
Water damage is awful, I’m sorry you ended up losing a bunch of stuff because of it. Hopefully the process goes smoothly with the claim and you can replace what you need quickly without issue. I think it’s normal to feel a little numb when dealing with stressful stuff like that, on top of everything else. Hope you’re not too hard on yourself for it.
Thank you love
I hope I get the money back too and everything will turn out fine. As to being hard on myself, I don’t think I am. If anything, I feel surprised at my apathy for the whole situation. Idk if that makes sense, at least I hope it does.
It does, I definitely get the muted feeling that depression can cause. I guess I was trying to say that even if the reaction wasn’t as strong as you expected, it’s okay. Is it possible after so much time had passed some of the attachment to a lot of the stuff just faded?
It’s alright, thank you again :)
I am very happy about the mementos surviving, yet the stuff that didn’t survive really had no real emotional value. A bed, as personal as it is, is still just a bed. And the other stuff that got damaged is pretty much the same type of utility objects (a coffee machine for instance). I guess what feels so strange about it is that I usually am very energetically emotional about bad things happening, yet with this storage unit, I got scared very briefly, but then I felt almost indifferent.
Ah, that definitely makes sense, especially feeling weird about it. Sometimes talking it out with someone one on one can help, even if it’s just swapping stories over a cuppa. My DMs are always open for my comrades.
jesus that sucks, im so sorry that happened
Thank you
People react to trauma at different speeds and in different ways, and you shouldn’t feel bad about not feeling trauma for not losing precious mementos. I hope you get money for a new bed, anything else would be stupid.
Me too. I’m actually slightly versed in trauma from personal experience, so it’s not alien to me. I just know I usually have stronger reactions to traumatizing events and this one feels almost underwhelming. I think it’s the depression adding another layer of apathy to these experiences.
Thank you for listening
Maybe. Maybe the relief of not losing something softened the hit? At any rate I don’t think you should blame yourself for not feeling trauma. I’m always ready to listen.
Thank you love, I appreciate it & you
Update: The damage claim is being processed, I received multiple profuse apology mails from the owner of the storage unit and they’ll refund this month’s and last month’s rent. It’s not perfect, but it’s better than not getting anything it all.
Insomnia is like an extra curse. When you’re unwell or having an awful life you’d like to sleep more of it away to make it pass faster but the universe says “Akshully…no. I’ll make you sleep LESS so you have to endure even more of this shitty, miserable life!”
I feel this, it’s like doubling down on all the crap you’re already dealing with. Bonus if you get nightmares too! Hope you can get some rest soon, comrade, and some answers from your upcoming tests/ appointments.
Thanks you.
Stress hormones are a pain in the ass, especially when it comes to sleeping. I feel for you
I hate how difficult it is to get a GP appointment in the UK. As I mentioned in a previous post, a few days ago I woke up to find a small bald patch right at the front of my hair. Today there is another one. I’m also having trouble treating the infection that has spread to my hands, the usual ointment isn’t working. So I want to see a GP. They have a new automated system that is so convoluted you need to be an IT expert to ask for an appointment on it. I can’t get it to work so I had no choice but to actually go there first thing in the morning and queue up with all the other desperate people battling for an appointment, which in itself is an issue with my mobility problems and lack of transport. (They don’t take phone calls for appointments any more). Eventually I got to the front of the queue and asked for an appointment, and the receptionists always makes you declare what is wrong with you in front of everyone, so they can decide whether you are worthy of contact with a doctor or not. I felt too embarrassed to announce I’m going bald and riddled with infection in front of the other people and I had to plead with her to let me see a doctor without telling her what’s wrong with me. Eventually she agreed I wouldn’t have to tell her, but now they’ve changed the system so the receptionist can’t even book you an appointment. All they can do is add your name to the triage list and at some point during the day a doctor will phone you and decide whether you are worthy of an appointment or not.
This is because the GP won’t see people for almost anything now. If you have any kind of muscular-skeletal issue the GP won’t see you. You have to refer yourself to the physiotherapist and be on the waiting list for 4 months for an appointment. If you have an infection of any kind the GP won’t see you, you have to go to the pharmacy and get antibiotics direct from them. And a whole list of other things they won’t see you for but tell you to go elsewhere. According to a news article I read, there is a shortage of 4200 GPs and only 12% of appointments are now fact to face. It’s like they make getting an appointment so difficult to put people off even trying. The NHS is absolutely falling apart and it’s just another problem that makes life more exhausting and stressful.
Just catching up, and my god. I don’t want to chime in on the symptoms and stuff, but the way you’re being treated is atrocious. I really hope you can get the help you need soon, love, and that you aren’t in too much pain. Sending hugs. Get some rest if you can.
Thank you.
But accessing medical treatment and prescriptions seems to be getting more difficult all the time rather than better. Even a couple of years ago news reports and medical professionals were already stating “The NHS is collapsing.” It’s in freefall now. I’m so tired by the amount of effort I have to go to just to get my prescriptions and basic medical help. Not to mention having to beg for financial assistance here whenever I have another foot surgery and the NHS won’t pay for the bandages. The entire thing just seems unsustainable. And it doesn’t have to be like this, it didn’t used to be this bad. In fact some people say the government are running it into the ground on purpose because they want to privatise it, because some of them have financial interests in private medical companies.
I hear you, love. It shouldn’t be this hard.
This is deeply depressing to read. I don’t even want to begin to imagine how horrible this must’ve felt, waiting in line only to be asked to announce your issues in front of everyone. I’m glad you got around it, but the rest isn’t looking too promising either. The NHS is really falling apart, but no longer in slow motion. If nothing else, I hope your phone call is going to be more productive.
The bald spots don’t sound too good either. I’ve been trying to get an appointment for my rapid hairloss for more than a year and that’s already stressing me out, I can’t even begin to imagine how terrifying this must be for you. I really hope there’s a quick and easy solution for this problem at least.
Out of curiosity, and only if you feel comfortable talking about it, what is this skin infection and do you know where it comes from? Like, what makes it appear and spread?
Please hang in there, love, we’re here to listen if you need to vent or just want someone to listen
I finally managed to get a face to face appointment. It wasn’t good. Most of the regular doctors I used to know have retired, and the surgery has struggled to fill the vacancies, so on the rare occasions I can see a GP I get a random different locum each time. This one didn’t GAF. About my hair he said there’s nothing he can do but prescribe a steroid treatment and wait and see. I asked for tests - blood tests for instance, to check if it’s a deficiency or a hormonal problem. He said nothing to do with hair loss would show up on a test. But I googled it when I got home just now and that is a bloody lie. You can do blood tests to check for a cause of hair loss. He even said “My son’s girlfriend has lost all her hair and we don’t know what caused it. There is nothing you can do but wait and see.” I’m thinking I might get around this by requesting blood tests and saying the endocrinologist requested them.
As for the infections, I get open ulcers on my feet, it’s a side effect of cancer treatment and the treatment has also caused me to lose multiple toenails which come off leaving an open wound. These ulcers and wounds get infected with bacteria and fungus. Because I’m immunocompromised I haven’t been able to fight these infections off with antibiotics or antifungals. Eventually it gets so bad and spreads so much all that can be done is debride the areas, cut away the infected and dead tissue to give it a chance to heal. I also have eczema, which mainly affects my hands, and my previous eczema cream got discontinued. Despite repeated letters to the GP they still haven’t prescribed an alternative. So my eczema has gotten so bad on my hands the skin has cracked open. Then I have to touch the infected feet to rebandage them and the infection gets into the broken skin on my hands.
Do you have any idea what has caused your hair loss? What kind of pattern is yours in? My hair has been receding a bit at the front and sides for ages, but I’m used to that and that is a known side effect of my thyroid treatment. What’s new is these bald circles suddenly appearing on the top at the front. No idea what’s causing this.
He said nothing to do with hair loss would show up on a test.
That’s like five kinds of wrong. I know because I have carried that blood from point a to point b. Now he’s probably right that you can’t diagnose hair loss by blood test, I’m not a doctor yet, but you can check for hormone imbalances or vitamin deficiencies or immune system function, which as a chronic patient with thyroid problems and a restricted diet you should get tested anyway. Your GP here is bad at his job. Like objectively. He should want those blood tests done, you should be tired of getting them. I hate your GP.
I’m thinking I might get around this by requesting blood tests and saying the endocrinologist requested them.
Great instinct, endocrinologists love blood tests. But you don’t even have to lie on this one, If you have any appointment with your endocrinologist and you mention that you’re losing hair and suffering parasthesia or dysesthesia they should absolutely get you a blood test. I quite frankly assumed you were already getting these blood tests.
They regularly test my T4, T3 and TSH. A few months ago they also tested my blood count and blood sugar, at my request as I was feeling even more tired than usual. They only tested the vitamin deficiencies a long time ago after I fainted in the street and told them I hadn’t been able to keep myself fed. But they never check other hormones. And they are requesting I have these tests less and less frequently, as the doctors who used to work there full time have retired and now it’s just a load of random locums who work there for a day then are gone. And the local hospital is so booked up that my endocrinology appointments aren’t anywhere near as frequent as they should be, and they often just do phone appointments now. The whole NHS seems to be trying to keep patients away as much as possible. If you aren’t actively dying right this second, they aren’t interested.
Yeah the t7-tsh is the standard thyroid panel, but you’re an immunocompromised person with cancer and a restricted diet, you’re the poster child for blood tests. Beat the drums for your own healthcare is all I can say, advocate for yourself. Send emails, call every office, make yourself a huge nuisance, and don’t feel bad for even a second. This is your health and they are utterly failing. These doctors should all be fired if they’re not willing to help you, but sadly I’m not in charge of hiring and firing.
Thanks. I’ve got a blood test for tomorrow, as far as all the other things I’m just tired. It’s too exhausting dealing with being ill, fighting benefit appeals, fighting for meds and appointments, and constantly having to scrounge and beg repeatedly for food on here. So I can’t mount a huge fight over this but i’ll ask for an appointment. The endo is shut today but I’ll ask for an appointment when they reopen. It’s so hard now though, another problem with the NHS is specialists always try to give phone appointments rather than face to face now. It’s much harder to have a proper discussion like that, and I don’t feel I can say everything I need to say as I’m worried about people like my landlady and her guests overhearing my private medical details.
Part of being a zealous advocate for your own health is being willing to be open about your needs and symptoms. You have nothing to be ashamed of with regards to your health. And you need to be able to say what you need in the context you are in. If you can only communicate by phone you need to be able to say what you need over the phone. It’s not ideal and it may feel humiliating, but it’s the hand we are dealt as patients. Duck into your closet and call when your landlady isn’t home if that’s what you need to do, but do call and do say what you need.
I know that’s all easier said than done.
I’ll put you in charge as soon as I figure out who needs to be complimented out the door. This is disgusting.
I can only mirror what Keld already wrote, any doctor should want to run blood tests. What the actual fuck was that appointment, love, I’m so sorry you’re being treated like this. And yes, get an endocrinologist to ask for these tests. There’s gotta be something somewhere that isn’t right and that they can measure.
The infections sound vicious, and I’m sorry again that you have to endure this time and time again. Is there no treatment at all that would prevent the ulcers and eczema from appearing in the first place? And if these are known side effects, shouldn’t there be treatment plans ready? I’m sorry, I can imagine you had this conversation before and are probably fed up with the lack of answers you’re getting.
My hair loss hasn’t really been diagnosed yet. My doctor did a thorough blood analysis and told me it could be my iron deficiency, yet even after a year of taking supplements and changing my diet to include more iron (which is almost impossible with celiac’s disease), my scalp is still itching and flaking, and my hair falls out rapidly all over my head. It’s very thin and most of the volume is gone by now. I finally managed to find a dermatologist and got an appointment for October. Nobody will see me sooner. Meanwhile, I’m trying not to scratch my scalp.
Thanks. I managed to get an appointment for blood tests tomorrow. The only reason they gave me the appointment is because I lied and said the endo had ordered them. I’ll google a list of hair loss blood tests tomorrow and take it and say that’s what the endo wants. As far as treatment plans, I have never had one for anything as far as I’m aware. They just treat whatever the issue is and then I’m discharged and left to my own devices until it comes back. This is for everything.
Have you tried Spatone iron sachets? It’s spawater that’s naturally high in iron.
As far as treatment plans, I have never had one for anything as far as I’m aware.
That is a huge issue. Especially with cancer and the complications you have, there very definitely needs to be a treatment plan, if only to be able to avoid certain complications. I wish you the best of luck with the blood tests and I’m keeping my fingers crossed that they find the cause of your hair loss.
More generally speaking, it’s disgusting to think how many of your problems could’ve been avoided with proper aftercare. It’s not like you’re not trying to take care of yourself, and with the right treatment, you could’ve been just fine, and I hate how much quality of life and health you lost because of negligence and “cost cutting” in the healthcare sector. You deserve better than that
It took them 3.5 years to diagnose the cancer in the first place. My symptoms were vague, mainly tiredness and brain fog. They tested me for anaemia and viral infections. When those came back clear they refused to test for anything else. They said I was “too young for it to be anything serious.” So for the next three years I kept going back and first they said it was depression and gave me antidepressants. When those didn’t work they said maybe it was chronic fatigue syndrome/ME. Then I just got called a hypochondriac. At the time I was working as a carer in a nursing home, and my employer decided to give the employees private health insurance as a perk. I eventually found a lump in my neck and used the private insurance to go to a private hospital to get diagnosed. So it wasn’t even the NHS that diagnosed me. When I could no longer work I had to go back to the NHS as I could no longer have the private insurance.
A similar thing happened with my stroke (a side effect of the cancer treatment I wasn’t even warned about). If I’d been treated promptly I might not have been left so disabled. But it took so long on the NHS waiting list to start physiotherapy that the damage is done.
My point exactly, you got fucked, and you deserved better. God I wanna slap everybody who didn’t take you seriously, even though that won’t change anything. I’m so glad you are still here, despite the odds.
And I overlooked the iron water question, sorry. I tried getting some here but there’s no brands available, and ordering water online is too expensive. I have supplements that work, however my Celiac’s makes it hard to absorb much iron from the food I’m allowed to eat. The iron levels are rising, but my scalp does not seem to be happy either way.
Approaching tasks is so stupidly hard. I can start cleaning the kitchen but then not finish it, even if it would only take me a minute to put something away and a few more to empty the dishwasher. I can take some clothes off of the line, but not all of them. Executive dysfunction is just stupid
I’m curious bc I don’t know how it feels, so please don’t take this the wrong way: how does the executive dysfunction feel in those moments? Is it like a strong feeling of “Nah, I don’t want to finish” or does it seem to be an actual mental block preventing you from finishing the task?
Either way, do you feel more able to finish the task if you let some time pass?
When I start it, I feel like it will take a certain amount of time, and I feel like I’m not able to commit that amount of time to a task. Even when it’s less than five minutes, I feel like I’ll get frustrated doing only one task and then have to leave before I can finish. So a mental block I guess
It’s so strange because when I’m working I love having one straightforward task, but when it comes to things I have to do for myself it’s so much harder
Oh my, yeah I can see why this is so frustrating. I don’t know of any tips that might make it easier to deal with, I really wish I did. But there’s probably tips and tricks to get around the executive dysfunction or just straight up work with it (right?).
For me it’s like a mental block, my desire to do something doesn’t go away. (I also sometimes just have no motivation to do something, but that’s a different thing I think).
Like I can stand in front of a simple task that I could easily do in just a few minutes, that has no complications, and that I really want to do, and just be unable to do it. Nowadays I just walk away cuz I know I won’t be able to do it now but may if I just try again later. But when it first started happening I’d stand there trying to get my body to do it for hours sometimes, usually ending in me crying and feeling terrible.
Thank you for the explanation. I’m glad you found a way to avoid feeling terrible about not finishing a task by just trying again later
You’re welcome!
The one downside is that, while this works for me and I usually don’t feel bad, this doesn’t work well for external deadlines. And NTs don’t like it (but fuck them anyways)
Whether they like it or not, this is what you need for yourself to be able to finish a task, so no matter what they say or do, you are in the right to accommodate yourself, especially when they refuse to
I think there are diffrent kinds. The one common to adhd is dopamine disregulation. So picture moving a pile of bricks for no reason. Not painful but you just don’t want to right. Any task that doesn’t give a dopamine rewards tends to be downregulated. So that feeling is the same you get about luandry. So like, I could but my body tells me to not waste the energy. Like, literally anything else is more important to do so don’t waste time on that.
There are some people that experience it like the feeling of not wanting to touch a cactus. I don’t have much experience with that.
Thank you for the explanation
I’ve found doing even a bit of cleaning really adds up. Also I’ve found ways to do cleaning more quickly and easily. for instance if you’ve let things build up and the floor is covered with rubbish, just having one of those long-handled dustpan and brush sets makes it so quick and easy. Especially if you’re disabled, no bending down to pick anything up. Just sweep all the rubbish into the dustpan and tip it in the bin. Takes a moment and makes the place so much cleaner.
My treatment guide book thing that is supposed to be used by students working at the hospital has like a “This would work but don’t do it” section of a lot of diseases, and for the somatic diseases its kinda funny, it’s basically stuff like giving patients alcohol, cigarettes or illicit drugs for treatment purposes. (Theres also some real treatments with the caveat of “You’re not yet qualified to do it” stuff)
The psychiatric portion is a horror show though because it’s basically just explaining chemical restraints and how to gaslight a patient.Given how often the terrible things happen, it does make me wonder if I could get my doctor to score me a speedball and a vodka.
