What "A Good Day" Is For Me

Dear Blog,

Yesterday, I felt rotten.  I was tired and got so frustrated at one point I teared up and just lay on my bed going, "I'm not going to be able to do it!"  Of course, I was, but it felt awful.  My head wouldn't stop drilling.  That's the best metaphor I can come up with; I remember when we had a jackhammer working on the concrete to get at that burst pipe, and the echo in the house, and that's what it feels like in my head on days like yesterday.

Today wasn't great; I felt physically unable to move myself most of the time.  Yet, it was a good day.  I talked to people in my breaks between classes - you have no idea how nice it is to not feel so isolated, even for five minutes worth of friendly conversation.  I got to just sit and read instead of stressing about homework.  I got through my classes, and managed to take most of the information in.  I did some errands after school and ran into Mum at the post office.  I got home and took a lovely (though exhausting) walk.  I had a really nice dinner - sausage slice and hash browns and baked beans and crunchy baby carrots - very transatlantic.  I've finished my geology for tomorrow, and I'm deciding what I do next.

So, I was tired (really tired) today, but I managed to do things.  I got through it pretty well, I think.  Still procrastinated some; but if I can just begin to eliminate that, that would be splendid.

I wish all days were like today; I can deal with my disease on days like today.  It's the days when there are no little pleasures in life (or when it's incredibly hard to see them) - the days when I feel like I don't have any friends, when I feel completely incapable of doing things for myself, when I want to grow up and move out and wonder if I'll ever make it beyond where I am now - that make being sick unbearable.  It's not so much the disease that I mind, with the tiredness and the headaches (well, the headaches are pretty rotten) and the pain; its the way it changes how I have to live my life that I mind.

Even though I've learned to be okay with being sick, it would be lovely to wake up in the morning and not feel like my bed is too small, because it physically isn't possible to sleep in a position that doesn't hurt something.  I woke up the other morning pushing at the headboard, trying to stretch out - but all it did was hurt my wrists.

And though I say I'm okay with being sick, I do need to clarify something.  I get asked a lot, "Oh, so are you all better now?"  The answer is no.  I'm not better.  I'm functioning again.  I can do things, act semi-normal now.  But I cannot escape the fact that - statistically - I'm probably going to have this for the rest of my life.  It'll get better and worse, I might go into remission for a while, but I know that some day - be it two weeks or twenty years from now - I'll find myself at that point where walking from my bed to the couch downstairs takes more energy than I've got.  So, if I say I'm doing better, I have a very different perspective than you do; I know that my best is no more than 80% of your mediocre. 

And to end on that glum note (though, I do feel I have to clear that up)...

- Judith