What The Fuck Is Wrong With Me

July 11, 2023

Nearly three weeks ago now, I gave something of an update on where I’ve been at in terms of resources available to meet the demands upon them. It’s sort of been a bit downhill from there.

As noted then, I’ve been helping out with social media for The Belmont Goats during their anniversary, an expenditure of resources that more or less has replaced those I’d been using to read interesting news articles and blog posts, and to keep up with podcasts. Since then, I’ve had to push to do a bit more on the social media because they wanted to do a whole daily thing about each goat, which I timed to match the tenth anniversary of each goat’s original introduction on social media in 2013.

Those posts have been kicking my ass, as the process has not been smooth, it took a lot of preparation, and each one inevitably threw a monkey wrench that more than once had me wanting to hurl my laptop, tablet, or phone the long way across my apartment.

Here’s a few of the statuses I posted to my homepage just over the course of this past week, which also encompasses the Xfinity fight.

Got up early to help with a delivery at the goats, used up too many spoons, came home to fight with social media sites to get a goats post up and it almost had me sobbing, and hoping for a day of recovery.
After a spoons-depleting yesterday I had to get up early again to grocery before the heat arrived, so the rest of today needs to be severely low-impact.
That thing where you really ought to get that shower in but you’re still worn out from the nervous system carnage of the past two days.
The cognitive and sensory funk continues, and of course more demands upon my dwindling resources are forthcoming, and I can’t even try to expel any nervous system static by getting in a walk because heatwave.
Today is all about hauling all the way across town and back for an echocardiogram, a procedure new to me and I basically have no idea what to expect.
Almost went across town for a thing early this morning but then heard my nervous system imploring me to get my head on straight, so I slept in and plan a low-impact day.
Dragging very hard from the get-go today, and couldn’t even walk the six blocks to coffee, so it’s got to be a low-effort day of staying close to home.
Last night’s mood dive became precipitous overnight, and combined with the heavy fatigue I crashed for two hours this evening, and used my last to get salad fixings and settle in for television.

Here’s sampling of what’s in the notes file I keep each week to help guide me through each Friday’s therapy session, although last Friday was a skip week.

Last Monday

Up and out early for bus to help with wire reels at goats, drained, got ride home where getting a social post up almost had me sobbing, it definitely had me swearing and yelling.
Did some light reading and just futzed around online and by 2pm almost sobbing again.
Short walk

Last Tuesday

Up early again to get grocery in before heat.

Last Wednesday

Starting to flail on a 10-day goats social project.
Goats person needs my input on something new when I am already stretched to breaking.
Shower

Last Thursday

Depleted
Instagram screws up a post about a dead goat and I almost lost it.
Walk

Last Friday

Really hating the social thing we are doing for the goats because something always frustrates me or doesn’t work or I forget something.
Walk

This Past Saturday

Didn’t go to BwPCon.
Walk

This Past Sunday

Goats
Had to have phone call to walk goat owner through web stuff after she made it clear she wanted to do it Saturday afternoon and then today claimed she’d been waiting on me.

It’s important to note that going to the goats on Sunday involved getting up early and dealing with the bus, then walking a few blocks. Once there, within fifteen minutes the guy with whom I’d gotten into a shouting match because he was invading my space and wouldn’t back off showed up, and I did the smart thing and removed myself from the central socializing area.

Unfortunately, that meant removing myself into the sun, which depletes me quickly, in addition to just the general stress of having him there and so not getting to enjoy myself. It was another half an hour before I could return to the social circle in the shade.

That evening came a mood dive, which by morning had metastasized into a precipitous plummet.

Monday morning I couldn’t even handle the overcast sunlight through the kitchen window without sunglasses on. After breakfast, I got just short of two blocks into the six block walk to the place I usually go to read over coffee and realized I couldn’t. I couldn’t walk six blocks and then an hour later walk them again. Instead, I crossed the street to the bakery, where I couldn’t focus on my book and just browsed around online.

I couldn’t even manage to make a sandwich for lunch, and instead had crackers and cheese and then a bowl of cereal.

Even television was too much, so more pointless dicking around online until eventually I managed to do one episode of a rewatch. By 6:30pm my eyes wouldn’t stay open and I crashed in bed for two hours.

Despite desperately wanting to maintain the daily walk, which I only ever skip if it’s too hot, I knew it was impossible. I took a shorter walk to the store to buy salad fixings, because when I get that particular craving I listen to it.

Here’s the thing that sort of made the spiral all the worse.

Yesterday, I started thinking about how five years ago I’d run into a blog post by an autistic about fatigue. A post that could have been written by my own thoughts about my own experience. Then, that night, I discovered that within a year of that post that person had in fact been diagnosed with ME/CFS.

I’ve been steadfast in saying that I do not have ME/CFS. Everything I’ve ever read depicts a condition that’s much worse than whatever it is I experience. What bothered me here was that I’d tied my ideas of autistic fatigue to that earlier post, and now it turns out maybe autism doesn’t come with this kind of fatigue?

(I’ve since been told that there are, in fact, different severity levels of ME/CFS, and that I might be reflecting what “mild” looks like, but given how hard people with severe cases have to work just to get medically recognized, I’d once again just be in the position I’ve always felt with regard just to the autism: mine is to “mediocre” to be of note to anyone.)

I’m very tired. I’m bone tired and brain tried and existence tired. I’m tired of not knowing why I get winded. I’m tired of not knowing why I have a pretty firm exertion limit. I’m tired of the fact that experientially I know I am disabled but I still don’t have a medical record that depicts or accounts for the degree to which I am.

(Wrapped up in all of that, of course, is that even if I somehow miraculously get approved for disability, that then kicks me off of Medicaid and onto Medicare and I’ve got some medical stuff that’s not yet dealt with that the latter would not pay for. Even a “success” of getting onto disability in fact will just make other parts of my life more difficult. I don’t know where all the resources, financial, physical, and mental, are supposed to come from.)

Just trying to put this together, even with the cheats and shorthand of posting statuses and therapy notes, has only made me drag more—and I still have today’s final installment of those anniversary goat-introduction posts to finish up.

I feel like I’m not just up against my wall but that I’m being pushed face-first into its bricks. What the fuck is wrong with me.

Addenda

Just minutes after hitting publish on this, the sobbing breakdown that’s been threatening for weeks hit.
Whatever is happening here, it’s hard for me not to think that even if we got our shit together on, for example, Long Covid and disability, my mediocre whatever this is still would get left behind.
It’s not at all out of the realm of possibility that in ten, twenty, thirty years this could be me.

Referring posts

Published to bix.blog by Bix Frankonis. Comments and replies by email are welcome.