Hurry Up and Wait

I am really enjoying having a little corner of the internet where I can share with others who understand my life. Here's one I'm sure isn't new to you:

You are invited to do something fun.

You say yes, because it sounds fun!

The day of the event comes, and you feel ok, so you go along your day as planned.

You use up all your spoons and find yourself cancelling at the last minute so you can go home and fall into bed.

I hate when I have to back out on plans because people then don't want to invite you to do things in the future. They feel like you can't be relied on. Since you can't rely on your own body, you can't help but understand this. And you feel like you can't be relied on either.

It sucks.

And I feel stupid for complaining it sucks because today is the birthday of a high school classmate of mine. Or I should say, today should be her 33rd birthday. She died in a car accident the year after we graduated from high school. I bet she'd love to have one more night to get together with friends.

I think I feel guilty for not pushing myself to follow through on every invite and party because I know life is short. How do you balance that knowledge with a chronically ill body that just can't keep up? If it were up to me, I'd be wrapping up work, grabbing dinner with friends, and then going to see the show we all reserved tickets for. But I know if I do that, I risk a run in with the hospital.

I think I am also annoyed with myself for giving my power away. I know I only have so many "spoons" each day. I just don't know ahead of time how many spoons I will have on any given day. I guessed I would have enough spoons today to go to an audition, work, and go out.

I conveniently forgot how much I dislike the audition process. I was there yesterday for a few hours and read for less than 5 minutes. Today, I was there for almost 3 more hours, and again, only read for a few minutes. Spending spoons all the while.

When they asked yesterday if everyone could come back the second day for auditions, I should have said no. No, I can't waste another 3 hours waiting to read to you for 3 minutes. Once wasn't so bad, but two days in a row? That's a lot of spoons, people. And I just gave them away, right along with my power.

I guess it's the gift/challenge of Addison's Disease, depending on how you look at it. I am realizing that I need to be very selective with what I do. My default response, unfortunately, should be NO, not YES. My number one priority has to be my health. The last couple days, I haven't practiced yoga or eaten well, the things that always seems to go when I get "busy'".

I loved theater so much in high school. I have so many fond memories of the shows we did and my involvement there. It very much defined my high school experience. Maybe I assumed that feeling was still there, just buried away somewhere?

Nowadays, I'd rather go to yoga than rehearsal. I'd rather go to tap class than an audition. I think my love affair with acting is coming to an end.

But I'll still go see as many shows as I can, as long as I have the spoons.

Love,

an Addison Alien

(who hopes you have enough spoons for a fun Saturday night)