12 September, 2013


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.


  1. Excellent analysis of a place to start.

    You need a better food system, whether you learn to do it yourself or have someone help/do it for you.

    And you need work to stay stable at the hours you are comfortable with, because you're able to cope with that much, and you do like your work, but extra is hard for you to do. And you want to do that without getting people all upset with you and feeling you're not doing your fair share. You feel bad saying no, but you need to.

    These are not easy things to fix - or you would have fixed them already - but they do have solutions.

    Do you think you would be happier learning how to deal better with food with some coaching? That would be about developing some life-long strategies and skills.

    An effective plan has to start from where you are, what your skills and needs are now, and how you're handling them. And then exploring your options for making some of the pieces work better for you. Someone near you is best, but it's the kind of thing someone on the net CAN help you with (email or phone is better than on your blog - for personal help).

    For the work, you are doing what you need to do: not accepting extra work which disturbs your routine. Your best bet there maybe to learn to simply say, "I'm sorry - I have other plans in that time slot." It does get easier - it could be a class, or going to the gym, or meeting friends that makes you unavailable - none of their business - and you don't have to tell them why, just to tell them you are not available.

    Is it possible they think you might want more work because you might need more money? It still doesn't matter, but if you've already signed up for the amount of work you can handle, say no to more.

    Someone local to support you is better - but again, it is something someone who can make a phone call for you can do from any where.

    If you want to see if you could work with me on either of these things, my email address is on my blog.

    Most people your age need to learn a lot of these skills. But you've done a great start in identifying what might help.

    1. Our interactions on my blog are so strange because I can see what a kind person you are and it is so nice that you want to help me when you don't even know me. But I don't write my blog to get advice or offers of help and they kind of make me feel bad. It also makes me feel really bad when people tell me that most people have the same problems as me. Last time someone told me this I was crying by the time I got home and proceeded to drink so much that I was throwing up for the next 12 hours. Saying most people have the same problems as me just means I am lazy and don't want to work.

  2. No problem at all - I was being a busybody - as I said, you did a thorough job of analyzing two of your basic needs - and that will help you figure out what to do about them.

    And there is no way I or anyone else who only knows you from your writing on the web can have ANY idea what your problems and solutions are.

    I meant everyone has to deal with food, and everyone has to learn to set their own boundaries (as you just did with your response to me). Sorry if I didn't make that clear - my bad.

    I don't even know if it helps YOU to write down your options - but my brain does many things that way because it can't hold everything in mind at once.

    I am wishing you solutions that fit you and your life - because you found them and worked out the best for yourself.