Ok rambly (because pfft executive function) update on my life, my health, and my brain, for anybody following that, and maybe a query for feedback, suggestions, commiseration.

The end of Jan I switched from prednisone to hydrocortisone, which was a huge YAY as it turns out I was quite sick from the side effects of the prednisone (lots of brain/autonomic nervous system stuff).

But we undershot the conversion by about 1/3 and I crashed horribly. BOO.

So Feb was pretty awful as my cognition and language unravelled. I lost most of my reading comprehension and visual processing, and was just straight up mute for good stretches of time. Also BOO, very boo.

But it did illuminate I still have active inflamation in my brain the steroids were helping. YAY?

I have been a couple of weeks on a more appropriate dose and starting to feeling better, but the language stuff is still a struggle. Frustratingly so. Definitely BOO.

At this point I think I have to just shift and plan for this kind of brain for a while. I'm struggling with how to stay connected on here, this community really matters to me, but the frustrations in finding windows of language to respond to replies, to not be able to engage in discussions and banter are making it feel like a burden not a joy (to clarify, the obstacles in my brain are a burden, not the lovely thoughts and comments from you lot).

So the question becomes, how do I stay connected, mostly sans language, on a mostly text based platform.

I don't know which parts of my brain are the obstacles at this point, I have more access to language (w limited stamina), but I think there are executive function things like initiative and decision making that just kill conversation and engagement capacity for me. Weird. And frustrating. And isolating.

*invitation to infodump*

Am interested in anybody's thoughts on what appears to be acquired ADHD from long covid on top of the autism. My brain OT observed: losing a capacity in general PLUS losing the capacity in whatever part of my brain compensated for the autism wiring is a double whammy. I have to learn a whole new human interaction protocol, with a different brain.

Some of that will be hacks, but some of it will just be adjusting expectations, and maybe leaning into being more quirky.

Some thoughts I've had do far:

Just accept that I am gonna have to ⭐ boop replies and not be able to form words about it (and don't leave things unstarred for week waiting/hoping for words to reply).

Take a month to just post an image a day or something wordless. (might need help w alt text).

Be completely random about when I toot, don't toot, reply (this can potentially confuse people when they don't get a reply, or a ⭐, or see me infodump on one toot, then say nothing else for 10 days)

It is perhaps that last one, being completely random, that I struggle with, as far as impact on other people.

My toots aren't just about me, my toots are threads into a community that holds me in an interdependent web of caring.

So looking for feedback on what ya'll care about and need around replies and interaction. As well as any comiseration of other folks struggling with similar, and absolutely suggestions on workarounds from ya'll.

This is my brain now, how do I use it to connect?

@vlrny
Random is fine; we care about you and want to know how you're doing, but we also know you and some of your struggles, so when you go a while without posting our thought is going to be "Valerie's having it rough" not "Valerie hates me" or "doesn't care".