Keeping me up, anyway

It's sometimes difficult for me to get to lie down around 3 PM or 4 PM. If I'm in the hallway, and can follow the aides, they usually put me in bed. But if I have been on an outing, or if they think I should stay up to eat, I'm not put into bed. They don't refuse. They just don't do it.

It's fine for me to build up some tolerance and sit up longer. But I would like to have something to do. I feel if they're going to make me stay up for an extra hour I could be entertained doing something during it.

They all think it's too time-consuming to set me back up at my desktop. It really doesn't take that much time. And we are going to have to get some type of understanding.

First of all, I have no way to rest or go to the bathroom without getting out of my power chair. They want me to have a reclining power chair seat so I can rest. But they don't know that I know that it's quite difficult to get aides to cooperate with my routine after meals. The best time to get them to cooperate is before a meal.

I'm just afraid I'm going to get too tired. I like to get my feet up. It makes me feel more relaxed. I also like to write in the evening and I miss doing that.

I also am not able to read as much. Usually every Sunday I read quite a bit of the New York Times online with my sister's subscription. But not the last couple of weekends since I've been living here. Last Sunday I played catch up and read some of the NY Times in the evening before I went to sleep. But I did not get to go over it thoroughly like I usually do.

I also want to be careful about what I eat in the evening. Most of the time I want to keep my evening meal to 300 cal or a bit more. If I'm not careful, I'll end up gaining weight.

I may just ask them if I can take the snack food I buy to the dining room and eat it. That way I will not waste what is already in my closet.

Hopefully I can strike a balance between staying up and lying down based on the aides availability and schedule.

I don't think that's an unreasonable request.