June 20, 2019 - Thursday

corn, wheat, blue, crystals…

Jake explains resource types in Card Wars!

Maybe stuff like that should be in Mediaclub or Tuna under an #adventure-time tag, but right now it just feels like a dailies to me.

I am having the worst dreams I’ve had in a while! Wandering into the room while Adventure Time is on is helping me.

Tried on saying “chronic illness” aloud to friends yesterday as part of processing last week’s CFIDS diagnosis. Wondered how many “I said ‘I have a chronic illness’ for the first time and this is how it felt” Medium posts there are. Because that’s how I feel. It’s weird. I’m not like different like I had surgery or something but getting the diagnosis is still a mark of delineation. I can come up with coping mechanisms now and science says I’m not crazy. I still feel sad.

Reading up on the CDC website, I’ve found out about PEM, or “post-exertional malaise.” That describes what happens to me really well.

Patients with ME/CFS need to avoid ‘push-and-crash’ cycles through carefully managing activity. “Push-and-crash” cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again). This can then lead to a “crash” (worsening of ME/CFS symptoms).

That seems like good advice to people in general, but it’s extra-important for me and I have to come to terms with that. The infectious diseases doctor said a similar thing to me: “it’s like you only have ten coins per day, and you have to be very careful how you spend those ten coins, and you really can’t spend more than that.” I love borrowing against the future (I remember once @maiki told me “you are the most time-poor person I know” years ago and that stuck with me because I borrow from the future by taking time away from important things like sleeping) so this is hard for me to stomach. But I have to, I have no choice.

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