I finally came up with the perfect way to describe my fatigue to my doctors, husband, or whomever needs to know, because I used to be able bodied:
You know when you've been on your feet all day, working, hiking, playing sports, or something where you've been walking and walking, and you haven't had a chance to sit? There's that moment where you've had enough, and you say to yourself, "I just HAVE to sit right now. I NEED to sit!"
I remember feeling like that sometimes, after a long hike, or roller skating for hours. That's how I feel all the time. Every moment of every day, I feel like I just ran a marathon, or hiked up a mountain, and I NEED to SIT!
I could always walk a few more steps. I could keep pushing myself, because sometimes you have to. Sometimes your still at the top of the mountain, and it's time to climb down.
But I always feel like, good god I really need to have a seat. And once I'm sitting, I don't get rested. I don't feel like, "Okay, I'm ready to get up now!"
When I'm standing, I always feel like I need to sit, and when I'm sitting, I always feel like I just sat down after a very long day. I am at rest, but I am never rested.
I can always push myself. But, I am always pushing myself. I think, maybe I pushed myself into the position I'm in now. I live from one rest to the next. One counter than I can lean on with as much weight as possible, to a chair, to an out of the way corner where I can just crouch for a minute.
I don't get rested. But now, with my power chair, I can be at rest without feeling imprisoned.