Liebjabberings was curious about what kind of services I'm thinking about when I complain about people like me not getting services. I actually have never thought about this much because I know I won't ever get them, but I got interested in thinking about what they would look like.
A main thing I'd need is direction to work on the non-urgent things I mentioned in a post a few months ago. In that post, I discussed how I'm usually able to get myself to get up, commute, work, eat, and occasionally shower, but it's too hard to do anything else and that creates problems for me.
So for me, that could be meeting with a support worker and the worker could list things most people do, like getting haircuts, regularly going to the doctor, etc. and I could say if that's something I want. I could also add other goals that aren't on the list, like getting new curtains (random example).
If there are things that could be done with the worker in the short term the worker could just walk me through those things and/or do them for me. It might not be realistic for the person to actually go with me to get new curtains and stuff, so I think the way they would help me with something that takes place over multiple days would be to schedule with me exactly when I would do it and maybe check in with me by text to see if I'm able to do it.
A big problem for me is dealing with food. I usually don't prepare food for myself because it's too much work, especially when I'm feeling foggy and tired which I usually am at night. The main reason I have trouble paying my rent is because I don't really have enough money to get takeout or junk food that much, but I do it a lot.
I think there are a few possible ways this could be dealt with:
1. A worker comes to cook for me.
2. A worker comes to supervise me while I cook, or doesn't always supervise me in person but we spend a lot of time deciding things I could cook and planning what I will cook every day for the next week. I think this could make things seem a little easier but without actually doing it, it's hard to be sure whether I'd consistently cook for myself if I had more guidance.
3. I could be given more money so it doesn't affect me badly to get takeout or go to a restaurant instead of cooking for myself.
4. I could somehow get a meal plan at a college cafeteria--this would be nice because I wouldn't have to do dishes, but the obvious problem is that I'd have to go somewhere else to eat and that could be kind of inconvenient. It also would probably cost more money.
I'm not really sure which of these options would work but the short version is I would want some help with food.
Another thing I would want is someone to advocate for me and help me advocate for myself. I have a lot of trouble saying no and I also have a huge block on talking about my problems with fatigue or telling people when I'm sick or having a dissociative episode or haven't slept, or basically anything that makes it harder for me to do stuff. The reason this creates problems for me is because I can't call in to work if I am not doing well because I can't talk about what's going on. I also have trouble because one of the agencies I work for will sometimes ask me to work extra hours when it's not really healthy for me to do that; recently I've been trying to deal with that by not answering their calls and being so difficult to schedule when I do accept a job that they end up not giving me the job. I really don't like treating people this way but I feel like I don't have a choice.
So the short version with that is I would like someone that I can trust to support me when I'm saying I shouldn't go to work, work extra hours, etc., even if it's hard for me to articulate why and the person has to work to understand what's going on; and I would like the person to also be someone who can call in for me and also help me learn more about how to talk about this stuff better so that I don't have to go to work when I'm sick.
I'm not actually 100% sure if these things would make me have more energy/cognitive function and be able to do more "fun" things. Maybe I just don't have that much energy/cf and the only way I could pursue fun activities would be if I did not have to work. But I like my job, so that isn't something I would want.
I think that even if these things didn't make me able to do more they would improve my quality of life and my health a lot.