I do not like it.

(should have been posted 9/1/11)

Today I woke up after a fitful night of sleep and felt as bad as I have felt in 6 years. I swear I was back to before I even knew what was wrong with me. Ugh.
I hurt everywhere- my back, my bones. I swear even my hair hurt.
Normally, I am achy on a daily basis, but I don't hurt. I can tolerate achy.
Hurt is hard to tolerate. Hurt I don't like. Hurt makes me crabby. Hurt interrupts my normal life. I DON'T LIKE IT!

Hurt reminds me that I have a disease that no one understands.
That likely I will need assistance of some kind earlier than most as I age.
That my diseases(s) are always there, even if I don't want to believe it or acknowledge it.
That my disease continues to evolve and affect different parts of my being.
Hurt reminds me that I am sick.
Admitting this is something I also do not like.

I want to believe I am normal. And do, most of the time.
The last six months have been testing this mindset like I have never been tested before. I am much more aware of the changes and challenges of having this disease (and if I'm being honest, a disability.)
Whether people admit it or not, I know they make accomodations for me. And while I appreciate their thoughfulness, I hate that it has to happen. I hate that someone might need to think about trusting me to help with a project. That they can't just call and make the ask. (I mean, I guess it gets me out of the heavy lifing, but I'd gladly make that trade!)
I hate that I have to think about whether or not I have a place to sit on the beach or in the park. I can make jokes to ease the situation, but it still sucks that I even have to think about it.
That has just become part of the routine of life. Life is life and it moves along. You make accomodations to make it work. So it does.
But unlike other times, ths time the hurt really hurts. It affected my ability to do my job. It affected my ability to be an indepentdent adult. I considered calling my dad to come and just be around because I got scared that I wouldn't be able to live a normal life if I hurt this much. I don't like it. Actually, I hate it.
But on the flipside, I am ever-more grateful to work at a place that can allow me to take a day and take some rest (I have never done that before). I am ever-more grateful for the support and love from friends, family, and co-workers.
And I am especially grateful for my (though sometimes annoying) perpetual optimism.
The silver-lining default mode makes even a bad day tolerable. And that I like.