Post #2295148
2026-05-04 21:20 UTC
Replies (3)
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@allysseriordan@mastodon.art 2026-05-05 09:40
@ahimsa_pdx@disabled.social thank you for sharing. Grief is something I think a lot about. This article articulates quite well a few of my stray thoughts on the topic.
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@hydropsyche@ecoevo.social 2026-05-05 11:47
@ahimsa_pdx@disabled.social @mecfs@fedigroups.social I was diagnosed with ankylosing spondylitis (an inflammatory arthritis) in 2008. The symptoms are not exactly the same as Long COVID or ME/CFS, although I too have a limited energy budget I have to constantly watch, but the feelings about it are really similar. And no, the grief does not go away.
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@Robotistry@fediscience.org 2026-05-05 12:24
@ahimsa_pdx@disabled.social @mecfs@fedigroups.social @ahimsa_pdx@disabled.social @mecfs@fedigroups.social This describes so much of my experience. I've noticed my decision making is much more precise and rigid now. It reads as "this person who used to be so flexible and responsive about handling things that weren't working has gotten so intolerant of change." But what's actually going on is that I have gamed out all the scenarios before even starting, and worked through the thresholds that will affect whether I can do something and how different things will affect my available energy, to the point where I *know* what my options are and whatever I'm facing has *already* been factored in. But I think the most important change for me has been a clear-eyed look at what I personally *need* to accomplish and what is, effectively, optional. And that leads to very clear decision making. If it helps me accomplish a non-optional goal, I do it. Everything else is optional and is superseded by rest or modified to adapt for lower energy as needed. I have been shocked by the number of things that turn out to be "optional".