(More venting than advice request) Last time I saw my occupational therapist she told me she was leaving for another job, and assured me that the person I'd get as a replacement was much better organised than her. That was several weeks ago. I just called the clinic to ask what the fuck was going on, and they said that she's already left, but that no one was replacing her, and I hadn't been referred to another OT either. I live in filth, and people think it's because I just don't care enough to try harder and get my shit together. I desperately need help. I'm not dying, I'm not at risk of serious injury because of my mental illness, I don't need an ambulance, so I'm a low priority, right? Neglecting me isn't going to result in a lawsuit. Neglecting me isn't going to result in my committing a serious crime, or severely injuring myself. Neglecting me is just going to look like I'm lazy, which we've already established, haven't we. Neglecting me means everyone, myself included, believes that it's just that I'm lazy, that if I just tried hard enough I could change and I wouldn't need any help with activities of daily living. Yesterday I had a big talk with one of my flatmates. She said that my occupational therapist had been hugely neglectful, and that I shouldn't feel bad about needing more help than was being offered, but I do feel bad. I feel terrible. How could I not? Wouldn't it be morally wrong for me not to feel bad for causing the frustration and upset I see in my roommates when I fail yet again at pulling myself up by my bootstraps? She also worried that moving in with [potential new flatmate I might go live with] would "enable" me in my avoidant habits. I tried to explain that this doesn't work that way. It's easy to assume that because my parents support me, I'm essentially just spoiled, and if I didn't have that support I would pull myself together and just Get Shit Done, but that's simply not true. If I didn't have that support - if it was quite simply a question of "look after your living space or don't live here" - I would be homeless. I don't need a kick up the pants to get me going. If I had a broken foot and no crutches, then bringing me food and water and helping me get to the toilet wouldn't be "enabling" me, and giving me crutches would absolutely not be enabling either. People don't seem to get that trying to force me to go it alone is not productive; I should know, because I've tried it for years, and it has never, ever worked. It's walking on a broken foot. It makes things worse. Crutches aren't ~enabling~ a broken foot. They're giving it space to improve. I need support in the home because I need the space to learn and build skills that I pathologically lack, not because I just don't want to bother with doing the hard work. I want to work - I want to work hard, I desperately want work, but I can't get work without support, and I can't get support without support, and I don't feel comfortable asking for that. She told me I couldn't ask for that. (She said no one would ever do it, and it was wrong of me even to request. I know she was full of shit, but I also know that a lot of people agree with her, and sometimes I do too.) I don't really know what I'm hoping to get out of this. I just want to tell someone about it. This is a recurring pattern in my life, where I desperately need help but can't get it because it's my job to look OK on the surface and I've been absurdly well-trained to do that job. I don't look disabled, or sound disabled, or seem disabled to the casual observer, and if they were to ask my first impulse would be to lie and say I'm fine anyway. When I compulsively insist to everyone that I'm fine, in a very convincing manner, it's only natural for them to be skeptical later on when I say that I'm actually seriously ill. I can't blame anyone for that. I know that technically I should blame my OT for it, since it's meant to be her job to see that "looking OK" does not mean that someone is actually OK, but I feel too guilty to be angry at her when I know that she has a ton of other patients and it's a miracle I got to see an OT at all. What I ought to do is make an appointment with my counsellor, but how's she going to help? I can talk to her about how bad I feel about being disabled, but that's not actively going to mitigate my disability. I can talk here about feeling bad. I can talk about feeling bad to any number of people. My counsellor lives miles and miles away, we talk on Skype, and even if she was nearby it's not her job to help me do the fucking laundry. (Have I mentioned that I haven't done the laundry in several months? I don't tell people that. They rarely notice - or at least, they rarely comment.) How could "talking about it" help me to wash my fucking hair, or my hands, or the dishes I eat off of, or the bedsheets I've not changed since I moved in? In order to do that I'd need to remove all of the crap off of the bed first - I sleep in a small rectangle of free space which isn't even long enough for my 5'0" frame, so my feet dangle off the end of the mattress unless I sit propped up against the wall all night. I've said this before but feel the need to say it again: if this was simply a matter of me not being considerate enough to my peers, why would I live like this? If I was just being selfish by letting my roommates do all the cleaning, why would I live in filth the way I do, making frantic efforts to avoid the shame of Someone Seeing?
I feel bad. I feel bad about this. Today I talked myself out of going to the workshop, even though I knew that it would help me to go. I knew I would have a good time. I talked myself into staying in bed because - and I'm aware of this - I want an excuse to punish myself.
By 'help' I mean support with activities of daily living. I already have a counsellor. My roommates just woke me up to ask me to move out in two months' time. They were very nice about it, but I still feel like shit.
My mom's an OT, and from my understanding, usually what they specialize in is trying to find ways to make it easier for people to do specific tasks they want or need to be able to do. Which is vague, because that can take a lot of forms, including, say, suggesting specific assistive devices, teaching people new ways to do things that may be easier or safer, or offering suggestions for mundane adjustments and solutions they might not have thought of. And sometimes ongoing therapy, like for executive function. (Or, on the dark side, ABA.) So yeah, theoretically exactly the kind of help you need when you want to not be living in filth, and it really sucks that this one did such a crappy job by leaving you hanging. :::(((
Yeah - my OT works on keeping me capable of making little words and understanding little words - enforced speech/listening for a few minutes per session - so that in an emergency I remember how to yell "help" (okay, squeak 'help') and understand when someone yells 'stop' that it actually means stop doing everything until the situation is clear. Makes sure my "ugh people, I have to run away squeaking!" initial response is under control. I'll probably always need it since I have no memory so after a few days I start being me.
@rigorist I'm not going into as much detail here as I do with my doctors. The list of exactly what ADLs I need help with and what kind of help I need is long and boring and not really the point here.
A bit, yes. Not a full-time/live-in caretaker though. I don't need 24/7 care but I do need daily support, otherwise I don't... do anything. I particularly need what the adult ADHD community calls a "body double". Without it I struggle to pay bills, answer messages, read letters, keep a schedule, feed myself, etc. (And by "struggle" I mean "it feels like bashing my head against a brick wall, and if I manage to force myself to continue, I may achieve about 35-40% of what I was intending to do".)
What I'm getting at is maybe this is something that can be set up at least on a temporary basis with folks hanging around here. We're not OT professionals, but we're probably capable of sending an IM saying, "Lunchtime!"
Oh, right - I was misreading your post as "how can you get help if you won't provide a job description", since that's the kind of thing a lot of people have said to me before. Thank you, that's very nice to suggest :) It might actually really help to get reminders for cleaning, since part of the problem is that my only current regular reminder that Cleaning Is A Thing is when I can hear one of my roommates doing it and I think "oh, shit, I've missed it again". (We don't have a schedule for it, or anything like that.) I've set reminders on my phone/laptop before, but the problem is they're not sentient, so if for any reason I can't respond to them immediately the only thing to do is turn them off or tick "complete". I find it much more useful to have an actual person asking, because then I actually have to communicate, as opposed to just ticking a box. In the lead-up to moving out it would also probably be good to have reminders to regularly do some general unfucking of my room. (At this point I'm aware that the way I've phrased this is just a list of "things I want" without any polite requests for help with said things. I'm not sure how to reword it to say "would somebody do this for me" without it being incredibly clunky, but kintsugijin of all people will know how that goes, so here's confirmation that this is a request for help if anyone is willing/able) Speaking of moving out, I also need to script my phone call to my mother explaining that I want to move out & why... I don't want to tell her that I was asked to leave, but I need to explain the time frame necessity. This being a rough neighbourhood is handy, of course - I can bring up the whole "our new downstairs neighbour is a very unstable junkie and possible squatter whose kids have been taken away by child protective services, and who put threatening notes through our door because she mixed up our apartment with the apartment of the guys who she's decided have stolen her phone" thing. And say that I don't want to spend the cold season in this flat again due to its ridiculous lack of insulation. (It got so cold this year that I was using my bedside table as a fridge for a while.) Also general frustration with flatmates, perhaps? And I can emphasise [friend I want to move in with]'s interest in getting a cat as a reason why I'm opting for that over just living alone or something, since my mum doesn't seem to fully grasp that Just Trying Harder (or Being Inspired To Try Harder For Some Reason) is not an actual solution to the housework problem. Hmm.
One thing I've had luck with with the more modular cleaning tasks is setting an arbitrary rule where whenever [x] happens I have to do a tiny part of it. I've tied stuff to, among other things, drinking game rule sheets (5 strikes and I had to pick up some of the clutter on my floor) and a harmless but incredibly persistent and annoying intrusive thought (whenever I muttered it out loud to myself I had to put a piece of laundry where it was supposed to be).
I have discovered that vague descriptions of tasks kicks people's ass--they sure kick mine. They make the project look huge and amorphous. "Clean up room" = big amorphous blob that I don't even want to think about. "Take all the dishes out of the room and put in dishwasher" = Yeah, I can do that. So, right now, before you do anything else, get all the dishes out of your room.
And, to make this reciprocal, as soon as I get home from the office today, I have to take a pair of speakers (big Advent Maestros) out of my room and put them in the basement storage.
Thank you! I've now taken out all but 2 dishes: the glass I am currently drinking from (which will go in the kitchen once I'm finished), and the mug I really love that I'm hiding from my roommates because it was a gift from someone special and I get weirdly uncomfortable seeing other people drinking from it :P it's not dirty, though. I washed 2 plates, 2 bowls, 1 mug, 3 glasses and assorted cutlery, and I found the thick gloves so there wouldn't be any sensory nope from the dishwater. At some point I'm going to make a List of Individual Components of Unfucking, because you're right, @rigorist, breaking tasks down is mentally useful. It makes sense to say to you guys collectively "I need to unfuck my room" but for my own purposes, more detail is required.
Took one speaker downstairs. While navigating to get through the backdoor to get to the basement with the second one, hit my right thumb on the corner of the refrigerator and it took approximately forever to stop bleeding. So you're ahead of me right now.
Dang, I hope it's stopped bleeding by now. Good to know though, that is vaguely inspirational :P (also, it has come to my attention that Adventure Time has conditioned me to say "dang" or equally ridiculous words where previously "fuck" or "shit" would have come to mind; this is... weird)
It was only about 15 minutes, but it seemed like approximately forever. It was more of a deep scrape than a cut. Got the other speaker in the basement. Those things are heavy. They're good speakers, but the little Sherwood I'm using doesn't have enough power to drive them well.
If you're having trouble making a plan to break down the room cleaning, this thread might be helpful: https://kintsugi.seebs.net/threads/how-do-you-do-a-clean.252/ I'm good with doing stuff like scripting phone calls, because I have to make so many, so if you'd like some help with that, let me know!
