HEATWAVES & BURNOUT

These last two weeks have been a nightmare… The heat, absolutely Devastating. I have barely been able to move for it — I can’t even breathe properly from it. I am Room-Bound at best. It’s up to 34°C+ in here at worst… So far. There are SEVEN different fans in here. I can’t have a shower, or even have wet wipes on my skin (that’s what happens when an Autistic person has severe Fibromyalgia and Functional Neurological Disorder [FND]…).

For the Past TWO MONTHS To The DAY... It's been Beyond A Nightmare. It's been my Literal - for the last 3½ years - Nightmare Come True.

I am TOO, TOO EXHUASTUSTED from having to Continue To Deal with living without a Catheter, after my Suprapubic Catheter inexplicably closed up on me in a few minutes during a routine change with the Nurses. That was 13th May… Despite being a supposed “Urgent” case — my urology team has been silent.

They barely managed to send even a Pre-Op appt for me — for more than TWO Months after the initial incident. After we had to specifically ASK for/Demand one.

…. That is NOT “URGENT”. By ANY definition of the word.

The upshot of that has been my life (of what it is) coming to a point where I am Overwhelmingly Distressed, feeling suicidal ideation slamming and wailing inside my head whilst begging for the Assisted Dying Bill to come into practice, and yet also desperately screaming to live and actually be afforded some kind of actual life, instead of this pitiful existence…..

I am also having to suffer the indignity of soiling myself and my poor mother helping me with the aftermath. The Cleanup is AWFUL. — I am utterly infantilized, and the Degradation is stomach-turning. It’s also costing me a small fortune in MAXI incontinence Pants + incontinence sheets, I can’t really afford at all.

But what’s FAR Worse than any of that is the Sheer Level of “Spoons” — like Energy Bars — it takes from me.

I am Too Exhausted to do anything, including actually, literally breathe. I can’t move. I can’t write or even think. I just stare at my tablets, reading some small fanfic ficlets or my favourite characters, and hang out with them there instead of the Games or Shows/Movies they usually live in with me.

FND comes with Functional Seizures, at least when it comes to my own edition of it. Every day for two months now, those Functional Seizures — BlackOuts or Feints, whereby without warning I become immediately unconscious and fall backwards like a marionette with their strings cut — have gone from Annoying to Demonstrably Devastating. I injure myself badly when these happen, and they’re B.A.D.

However, of late, I have been Barely Conscious in the past Month, and particularly even more so these past two weeks. They knock me out COLD. I cannot be roused, and they can last from minutes to over an hour, sometimes maybe more than two… Once I didn’t regain consciousness for Five Hours straight. Whatever life I even had, even one watching Wimbledon. Not only am I Too Exhausted to do my own average things — I’m Too Exhausted & HEAVILY Fatigued to actually remain conscious.

There’s no energy for my brain to actually function, so it Turns Itself Off.

———

FND also caused Dysphagia — I find it extremely hard to eat or drink safely and have a VERY Restricted Diet to work with that and Aspirate a LOT of stuff Regardless.

It’s now got to the point I CANNOT EAT OR DRINK SAFELY most of the time anymore, because of the Functional Seizures, as well as THE MAGNITUDE of the Exhaustion & Fatigue I have to EXIST with, these days. I could barely bring myself to drink at all anyway, so as not to have more Output to deal with, when it came to the incontinence pants and inco sheets. I am probably dehydrated

All THAT — with the Lack Of SP Catheter — ALONG WITH this DAMNED HEAT is getting far too close for comfort — even skirting the lines — in forcing me into a SEVERE AUTISTIC & PHYSICAL BURNOUT… AND therefore making me SEVERELY ILL…

Or might possibly even Utterly Destroy Me — Again.