| Pronouns | unsure, I guess they/them she/her and in Dutch zij/haar for now |
| Disabilities | ASD, ME/CFS, POTS, PCOS, IBS, VSS, etc |
| What I do all day | Reading, Postcrossing |
| Gender | not available (non-binary) |
Me: has heart rate of 130 of carrying my freshly delivered groceries up the stairs. Okay, not let's continue with that podcast.
Podcast: The problem is that millenials are too lazy to go to the supermarket and get anything delivered.
Fuck you podcast. Stop calling people lazy.
My friend in Teheran is curious about Persia.social.
He'd like to know if it's a good instance. He says there's a lot of accounts made by the government to spread lies so he's sceptical about anything now.
I looked at their public feed but I can't see much.
Does anyone know if Persia.Social is a good place to be at?
I'm super grumpy (again) so it would be good to do a 3 good things to remind myself life is good.
1 PEM wasn't as bad as expected
2 Got my package at 19:30, so now I can sleep.
3 Mastodon is pretty cool.
(I started typing complaints after 2 good things. Made myself erase it and think of something good despite my Mood. )
You know what is a good communication device?
Email.
Gives me time to type out my thought. Gives you time to think about a respond before replying.
I don't need this to be solved in 5 minutes, 72 hours or more is Fine.
I wish I had the money to take the PACE trial people to court. From changing the criteria part way through the study, to gaslighting patients, they have caused irreparable harm to millions of people with #MECFS and now #LongCovid.
They should be made publicly accountable for the damage they have done. Their so-called reputations should be destroyed, and what they did should be taught as an example on how NOT to run a study.
One might say not having food on this floor while I expected PEM is bad planning.
But on the other hand, this is my 4th bad day in a row. At what point do you say: I'm going to get food (from the freezer) now, because tomorrow I might feel even crappier than this?
Never. You keep hoping tomorrow will be slightly easier.
So fitbit is unable to show data in my phone when my GPS is off.
And yet, I keep getting weekly progress reports by email with a lot of data, while my GPS has been off for at least 2 months, no exceptions.
I'm guessing the whole forcing me to turn on GPS is just to spy on me even better.
I shouldn't complain because I knew there would be a punishment for bookclub, and here it is. I do not regret attending bookclub for one second.
And it's an okay day. I can not read but I didn't expect to so it's less frustrating. I am able to listen to podcasts and play sims. So life is good. Except for the fact that I need to climb stairs if I want to eat ever again.
I found a new ME/CFS metaphor. As a child I enjoyed this swimming pool with a small section that had a stream. The water was pushing you forward. That's the extreme good day. That's the: wow, what's happening here, I can do this activity??
The rest of my days are normal swimming, but as someone who's out of shape. Can swim 5 minutes... 10 minutes... then I need a rest. Or if I refuse to rest the swimming gets slower and uncoordinated.
What my sister and I used to do with the stream was to try to swim it backwards. We went against the easy direction, making it hard for ourselves. My sister says she managed to swim the whole 'river' once, when I was not watching. I could only do it by clinging to the sides of the pool. That's today.
Everything takes a lot, too much effort. I have to go downstairs soon and see what food options I have in the freezer, but for now that seems really impossible. Everything that involves moving any limb is just.. too hard.
Gwenfar 