Imagine you're in a locked in a closet with a whole bunch of flies buzzing around. And you're naked. When the flies land on your skin, you act immediately and quickly to get them off. You wave your arms to keep them from getting close to landing or if they buzz too close to somewhere sensitive like your face. But even if none have landed on you, you're in a constant heightened state of anticipation and reaction. The buzz around annoyingly and you can find no peace, other than just passing out.
Now imagine that that constant buzzing is your body. It's not external, it's internal. And when one of those "flies" decides to "land" on the skin, it's not just highly agitating, but sharply painful. That's what my pain is like. I can tell where my pain is likely to manifest based on where my body is currently buzzing, but that's just a guess. I can ignore the buzzing to a certain extent. It's certainly easier when there's something to distract me. But that only works on the buzzing, not the "landings."
The other way my pain will manifest is in a "Princess and the Pea" way. If I stand on my feet for more than a few minutes, it feels like I've been working an eight hour shift on my feet. If I try to use chop sticks for a meal instead of a fork, my hand go from operational to "I just gave 6 hour-long massage sessions" by the end of the meal. It's as though my body wants to crank every sensation to 11 (when the volume is only supposed to go to 10).
Ironically, this detriment of mine has made my highly competitive in other areas. When me and my friends go to high altitude, they slow down and have a really difficult time maintaining a steady pace. I on the other hand know how to keep going. I'm so used to operating when I feel like crap that pace and push through. They'll loose all steam and nap frequently. I don't need to. We're equally tired by the end of the weekend, but over all, I manage better.
That all changes once we get back down from the mountains: they get energy where I don't recover... But it's comforting to know that I do have skills because of my illness that others don't. It's really empowering to have some area of my life where I excel exactly because I'm broken. That there is value in my brokenness that has made me better than "normal" people.
I have a deep well of strength and endurance that doesn't get to shine a lot under normal circumstances. So it's easy for me to forget that it's there. I remember what "normal" was like, and I want so badly to get back there. My efforts, because of my pain, so frequently fall short. The buzzing interferes with my ability to enjoy anything. There is so little freedom. But I've learned, through my endurance, how to do remarkably well, considering. The fact that I can even get close to normal is pretty amazing.
And if somehow we could find a way to make the flies disappear and make my body less of a Princess... If my normal beats "normal" at ten thousand feet... Wow. I would be able to do mind-blowing feats of endurance. Logically then it must follow that if the only thing that's stopping me is my disease, I'm pretty amazing right now. Because I haven't let it stop me completely. And it should. Normal people would rest under my circumstances. But I endure.