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.
@silvermoon82 ok, this is almost funny. When I am low cog I'll get stuck in the indecision of:
Reply with an emoji?
(and don't even get me started on trying to choose an emoji)
Reply with a ⭐?
Reply with "haha noice" or similar?
The flood of potential paths crashes my brain and I stuff my phone in a drawer and go look at the sky instead.
Valerie Roney
Mx. Eddie R