May 19, 2018

I want to get up every day and feel okay or even well. To have energy and some expectation of getting things done. I don’t want to be disabled. I feel like life is passing me by, like I don’t do anything, like my life doesn’t matter.

I say that I know how to have a good life with chronic illness, that a life of quiet routine, reading, good meals, gardening, intellectual work, time with friends is all I need or want. And that is my ideal in so many ways, but I’m not sure it’s wholly true.

What’s missing? I want to be liked, to be admired, to be needed, to feel like my life and work matter to other people. Right now, in some ways (especially professionally) I feel that isn’t true. Can I change that without making my illness worse? Can I change it at all in light of my illness? Perhaps this is a desire I need to let go of or find another way to meet. Perhaps I already have what I want but because of internalized sexism I don’t value it because I’m valued for feminized things.

June 22, 2018

It is remarkable how easy things are when I don’t have a migraine. I feel lighter, moving my body is easy, thoughtless, pleasant. I want to nap for the pleasure of it, instead of for relief and oblivion. It’s so hard to remember that I’m not lazy – I’m sick.

June 25, 2018

Yesterday did not quite go as planned. Maybe I was too tired. Maybe the dregs of the migraine the night before had me too foggy. Regardless, I did very little I’d planned to do.

How did the day pass? Mindlessly reading the internet, a trip to the drugstore, a short ballet practice, Deep Space Nice episodes, more mindless internet reading. The Illest Girl describes this – the low energy, the mindless distraction, the interminable boredom.

June 29, 2018

A friend told me that even though she enjoyed the dance exercise classes she took, she eventually stopped going because her technical skills never improved. I understood, but also felt resentment. For physical things, even when I’m able to do something long enough that I start to see improvement, I never get to keep it for more than a few months before I have to start over because of migraine. It is frustrating, demoralizing, embarrassing. I try to look at it positively or at least neutrally, to maintain a beginner’s mind, as the Buddhist’s say. But there’s always that awareness and even when things are going well I waste time and feelings wondering when it’s all going to fall apart again.

Doing things for their own immediate enjoyment seems to be the way around this, but it conflicts with the goal-oriented nature of … everything I’m surrounded by.