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.
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.
@vlrny Maybe like artists you could just post one message that you pin that says youâre open or closed for business (âcommissionsâ). Maybe just an emoji.
In your bio you could say âđśâđŤď¸= I canât reply regularly but might pop by occasionallyâ so you just pin a post with the emoji and weâll know.
Assuming that isnât too much work.
I also think you donât owe anyone your time or energy. You donât owe us these explanations.
Anyone who expects an immediate reply hasnât been following you long to know that you have needed down time for a while now.
Any adult who gets upset you arenât interacting regularly is not the kind of person who needs to be in your life.
If interacting randomly (or even never) is how you can be you, then that is what we want for you. It would be selfish of us to ask anything more.
Valerie Roney
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