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.
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?
☝️my brain ia full, so I am gonna step away and process (and wordlessly read more as they come in).
The TL;DR seems to be:
You do you boo, however you need to do it. We will enjoy and value and not judge pretty much any way you want to enter this space (or disappear again).
And all it is just so.... 🥲
Thank you, you beautiful caring adaptable humans. I've been worrying more than I needed to.
@vlrny this is it!
Your presence or lack thereof is whatever you have that you wish to offer, time, energy, words, *boops* on the 🌟thingy.
You’re not *obliged* to any one particular else in this space, tho’. I mean, ppl you’ve connected with may miss you if you’re quiet, but we can be responsible for looking you up, too, and there are ways to just follow the chatter when it works for you.
@vlrny
Apparently it's a common experience to find out you have ADHD, after developing ME/CFS or Long-Covid, but only because you now lack the energy to compensate for it.
I'm not sure if I would have looked into ADHD without ME/CFS and especially not autism (despite being "an obvious case" in hindsight with todays knowledge).
I personally have given up to interact with people regularly.
I mostly just fav posts and answer a lot more sparsely than I would have years ago.
1/
@vlrny
The benefit of my ADHD in this situation is, that I can get and tolerate presciption stimulants, which are in some cases used as an off-lable symptomatic treatment.
Methylphenidate helps with orthostatic intolerance and Lisdexamphetamin helps with sensory sensitivities, both help with sleep and both help with the side effects of Low Dose Aripiprazole.
2/2
Wishing you well in navigating this difficult situation. As one of your long-time mutuals, let me say that I will be fine with whatever strategy you choose. No need to reply or otherwise acknowledge this post either!! Hope you can find a strategy that lets you enjoy your presence here. Sending good thoughts your way.
@vlrny A pin of the explanation so people wondering have a higher chance of finding out?
I had the ADHD time blindness for about a month. It was so surreal. I hope things continue to improve for you.
@vlrny I feel a lot of this, though for different reasons, and what I've learned is that people, for the most part, don't get upset around here if you interact infrequently or in an unusual way. I've made a few posts apologizing for absences and not feeling able to engage much with replies or other people's posts, and the response is always that people are happy to see me when I'm here and they don't take my lack of engagement personally. I would imagine it would be the same for your community.
Many of us have atypical brains and/or bodies and we understand the struggle. We're all just doing our best to exist in a world that would rather we didn't, and that's hard and exhausting and this is a soft and kind space for us to be when we can.
@vlrny Yes, everything @greengaybles said I concur.
Anyone who regularly follows either of your posts knows you need down time and can’t reply to every post.
Social media has trained us to expect immediate responses, including immediate replying when someone addresses us directly, but the Fediverse is about slowing down, about quality vs quantity.
We could all benefit from giving grace, space, and time to connect and interact in the ways we want and can.
@vlrny Don’t know for Covid, but for myself it was perimenopause that made me realized also ADHD (a few years after autism).
—-
ADHD replaced ADD as a more accurate term for a common neurodevelopmental disorder
@adelinej ah yes, fekkin menopause. That will be in play too. Mah poor brain. :(
Edited my post to change ADD to ADHD, thanks for the lingo clarity.
@vlrny You are welcome. Didn’t know either for the new term before my official diagnosis.
I feel you, I began to have Covid symptoms 3 days after my second mastectomy. I was unable to think properly for 8 weeks.
The only thing that helps since (I am dealing also with non restorative sleep due to apnea in top of too many other things) is a sensory diet. My physio made me realize how much my sensory system was way too high due too Covid. In addition to my AuDHD hypersensitivities…
@vlrny Not now but check this, it’s a long article. I would love to be able to refine my already existing list of sensory preferences. Need also to update my sensory triggers.
(There are multiple articles on this blog about sensory overload/diet etc.)
https://neurodivergentinsights.com/sensory-preferences-the-complete-checklist/
@adelinej @vlrny May I offer https://www.tree.fm/ as my soundtrack of choice. Works for both focus *and* relaxation.
Also, today I put "shrimplicity" on on a background screen for managing overload. https://www.youtube.com/@Shrimplicityy .
@GinevraCat I am using it for a while and I love it!
@vlrny Too relateable, although you’ve got it much much worse than I. Reading is harder but I figure trains my attention, so I’m trying to read more and read longer things. I’ve recently taken up crochet again and that’s been very enjoyable and *produces* something, so kind of rewards sticking to a task, while still being low-stakes & easy to tear out & redo when I goof.
For example, I made these bags for my granddaughters’ Easter gifts and I want to try something like this pillow cover in the second pic.
@vlrny Maybe like artists you could just post one message that you pin that says you’re open or closed for business (“commissions”). Maybe just an emoji.
In your bio you could say “😶🌫️= I can’t reply regularly but might pop by occasionally” so you just pin a post with the emoji and we’ll know.
Assuming that isn’t too much work.
I also think you don’t owe anyone your time or energy. You don’t owe us these explanations.
Anyone who expects an immediate reply hasn’t been following you long to know that you have needed down time for a while now.
Any adult who gets upset you aren’t 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.
All of that sounds horribly frustrating, and also yay for modern medicine? {Hugs}
This may not work at all, but thought that came to mind.
Start a 'Hey I'm alive' thread. Tag in with something as easy as possible - an emoji - or type when you're up for it? We can likely keep up a wide ranging conversation that you can read, or not, at your leisure.
@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.
@vlrny what about emojii?
They can be hard to search for, so I made some shortcuts:
I toot on an android phone. My keyboard app has a "custom smileys" feature (pictured). It only has a few slots, so I have multiple emojii in each slot:
▪ things related to threads
▪ celebration emojii \o/💃💐🎉👏🤜🏻🤛🏼👋
▪ happy faces
▪ mad/other faces
▪ punctuation (like this bullet here)
▪ tags I use a lot: #cdnPoli #onpoli etc.
▪ even canned text, saying "paywalled"
I could help you set it up when you have spoons.
Valerie Roney
None Hitwonder
Johanna, CanCon variety
hauch
Mike Nelson Pedde
Mx. Eddie R
the roamer
neville park
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Daisy 🪺🔪📚
stephaniepixie 🏳️🌈
atsuzaki
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