How do folks here handle the feeling that they're just waiting, not serving a purpose, and being a burden on their family as well.

Hey fellow sickie!

I feel this post. I'm also chronically ill and it limits the amount and types of activity I can do. No heavy (or even moderately medium) lifting, I need tons of sleep, I can't push myself too hard, etc. This pushes a ton of work onto my wife and it sucks.

My advice is to do what you can, when you can, and never give up trying for more, even if it's just the barest sliver of improvement. Let me break some stuff down. I know you won't be able to do some of these things (maybe you can later), but this was my journey.

My diagnosis (Ehlers-Danlos syndrome and mast cell activation disorder) took almost a year of seeing seemingly endless doctors, but I eventually figured out what I have. It took another year of more pointed doctor shopping to find one that was both intelligent and knowledgeable enough to handle it. A diagnosis is key - you can't treat something if you don't know what it is.

All the while, I did physical therapy exercises, improved my diet, and tried to be as healthy as possible. When I started, I couldn't lift more than a pound or two with either arm without being in excruciating pain later. Four years later, I can lift about eight pounds with either arm a few times, or light items many times. I've learned to use speech recognition and head/eye tracking for computer usage. It's all small, but for me it's huge. I can drive a car, brush my own teeth, and pick up my cat without too much pain. I'll keep doing my exercises and gradually improving, it just takes dedication and a lot of time, and it's frequently unpleasant. The key for me was finding how far I could push myself before I pushed too far.

I've learned to make sure my wife has ample opportunities to tell me about her thoughts and feelings. We do what we can together, even if that's me staying awake through part of a movie with her. It's the thought and effort that counts most: I do what I can, when I can, and I just keep doing it. It's not perfect and it's definitely not what either of us deserves, but it's enough because we keep trying and we're working on it together.

It's all small improvements, but it builds up with time. At the rate I'm going, I might even be close to normal function for my age by the time I die!