I had a really hard day yesterday. I woke up with my back hurting and feeling like hell. I wish I could say that sleep gives a reprieve from pain, but often my dreams involve similar pain – probably my body responding to the physical pain I’m in. Last night, for example, I dreamed that I was a Starfleet officer fighting the Maquis when interstellar zombies attacked. Yeah, I got hurt… a lot.
But yesterday, not only was I physically in a ton of pain but I also came to the realization that, in all likelihood, this will be the only kind of life that I ever know. And that is the worst kind of pain to deal with.
I’m not usually one for feeling sorry for myself, but we all have our days I’m sure. My self-pity turned into freaking out over my upcoming move and projecting my fears onto the boyfriend. I don’t feel like it’s fair that he has to deal with my shitty body and how it just decides to act. But in talking about it with him, I think I feel better about it.
He said, “It’s not fair to assume I don’t want to ‘deal with’ it.”
I still have a lot to learn about what it is like to be on the outside of my disease. Just like people who will never understand what it’s like to be sick, many of us I think will never really get what it’s like to be ‘normal.’ If I ever had the option, I would choose to not deal with RA. So I guess I just always have assumed that people dealing with it – that it’s just to put up with X because of Y before getting annoyed/tired/frustrated and moving on to something better.
Maybe ‘normal’ is just a term used to marginalize everyone who doesn’t have special circumstances… except that we all kind of do. So what’s the point of the label?