Tuesday, August 11, 2015


Here's the thing about making plans: I need them. I love them. I also hate them.

Without a plan, I'm too tired to do anything. If I have a plan (meeting a friend for dinner, going to work in the morning, washing laundry, going out of town for a few days, having a friend or relation coming here for a weekend, etc), I can push through the exhaustion and the pain and I can get myself up and out of the magical bendy bed. I can get dressed and I can show up and I can do the thing that I planned. If I make plans to live my life, I somehow have the energy that I need to do whatever it is that I planned on doing. But here's the thing... making too many plans, doing too many things, also renders me completely useless. (I should know. Because I am typing this from my bed. At 3:00 PM.)

It's a weird (and really hard, mostly because my body is getting less and less dependable) balance of making plans to go out and making plans to stay in.

I want to spend as much time as I can with the people I love the most, but I don't like it when I'm too tired to enjoy that time, so I feel like I have to limit myself to X number of hours so I don't get so tired that I can feel myself coming apart at the seams.

I want to go to work, because that's what feels normal, but I keep learning the lesson that I don't have the stamina to work even a half day. I've been able to push myself from 2-3.5 hours a day, but it took a month to get to three hours, and I've found that I lose the ability to articulate if I try to stay four.

Which brings me to another thing. I'm fine until I get too tired, and then I hit a wall and words just fall out of my sentences. I think I've typed a complete sentence, but when I reread an email prior to sending it, I find that I've missed words that I know I meant to type... that I thought I  had typed... but they're not there. Or I talk like it's backwards day. For real, last Friday I said "you're welcome" when I meant to say "thank you", in the middle of a conversation. It would be funny, if language wasn't one of the most important parts of my life. But it is. So, this is heartbreaking more than hilarious.) The obvious upside to losing my words is that it lets me know when I'm at my limit. I work until I catch myself getting weird, and then I'm out.

I want to stay home and read or watch TV and just hang out with me, because that's also part of my old normal. But sometimes I have this fear that I'm running out of time, and that makes it hard for me to enjoy downtime like I want to. Like I need to, because I neeeeeeeeed to be able to hang out with just my books and/or my shows, so I can sell myself a story about how if I do this, I'll have energy later to keep my plans.

It's so hard.

Here's the thing about making plans: I need them. I love them. I also hate them. ... So much.

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