I wonder how much Medical People truly care (like is it even 0.1%?) about what patients’ Lived Experiences actually DO to them… Physically, Cognitively, Emotionally…? How the Ramifications of their ghosting and gaslighting and postponing and time-wasting have Very Real Consequences to them, and the people around them?
Three MONTHS I’ve been waiting for my “URGENT” Suprapubic Catheter re-insertion. They did it in 7 WEEKS between Lockdowns & it was JUST before Xmas in 2020… and one shouldn’t need a WORLDWIDE PANDEMIC to actually have surgery they desperately need...
And STILL they’re not treating it for what it is… which is a ticking timebomb that will take me from being Severely Disabled as a Temporary Situation into One VERY Permanent One, where I am literally unable to manage ANYTHING for myself; not even turn over or sit up in bed, wasting away from Super-Fatigue, Mega-Agony, and spinning world that NEVER EVER seems to stop.
My 98yo grandmother could do More Than That, almost until the day she died. I’m Less than 45% of that age! My counterparts are working, raising children, going on trips or holidays… I’m just a year older than the Prince & Princess of Wales — so there’s a VERY GLARING reminder of “What COULD have been” right on the front pages of everywhere… My little sister is raising two young girls, with a mortgage on a cute 3-bed house, a job, going on said trips and holidays — and ghosts me like I don’t exist.
I’ve now reached the point where I truly feel it won’t take much more to put my body into Full Burnout & Severely Break Down Even More.
...The last time I was THIS ILL, I ended up with Sepsis & Septicaemia — from Two Different Blood Poisonings.
...And call me deluded, but I REALLY don’t want to get on THAT crazy-train EVER AGAIN… So, I’m getting more than a bit freaked out about how badly I’m going downhill now, having to deal with the catastrophic fallout of dealing with the outcome of Full Incontinence.
MEGA-Extensive & Overwhelming Hyper-Fatigue alone has me now requiring the effect of 24/7 Care. That’s BEFORE you’re talking about the Pain, Vertigo, Nausea, High Stress… etc.
...Are you actually supposed to be able to GET Post-Malaise…Thingy… from just breathing and existing? Cos I Do.
Anything more than that, even moving a little bit, and I am WRECKED, like I’ve done a half-marathon.
Anything more than that, and it’s worse than a Himalayan Treck to the peak of Kilimanjaro and back. I Am UTTERLY, TOTALLY DESTROYED — for WEEKS. Maybe (usually) Months.
... So... going through these [inco pants, inco sheets, clean clothes] Changes, alone, without even thinking about what else I could or should do after, I AM DESTROYED. JUST from THOSE. The sheer Enormity of them usually then trigger Functional Seizures/BlackOuts after, meaning I am rendered unconscious - from Hours, to The Rest Of The Day.
I have virtually NO Appetite, and barely eat, nor have any energy to manage anything, anyway — a serious Sucker-Punch to the gut after spending the last TWENTY YEARS conning myself into eating to combat Anorexia. I SURE AS HELL AVOID DRINKING ANYTHING & EVERYTHING that I possibly can, even my beloved coffee — which is just about destroying my soul, and definitely NOT helping with the Fatigue.
I don’t really sleep. Most of the time my body just runs through Functional Seizure BlackOuts — it’s ironically not conscious enough long enough to actually GO to “sleep” on most days. Other times, I might get maybe 2 hours of it, and it mostly happens by accident… I certainly can’t MAKE myself sleep (being Autistic, that was never going to be the case, anyway). Any I get makes me feel worse, or at least Just The Same (which is Diabolically Shite). I NEVER feel “awake” — not even “awake-ish”, which was my norm previously — anymore.
Functional Neuropathic Disorder [FND] and Fibromyalgia Flareups & Symptoms are basically Constant now, as a result of Force-Pushing my way through Almost IMPOSSIBLE Changes, which is the WORST thing one can do with these kinds of Chronic Illnesses. The Plethora of Crap that comes with that are all alive and well and WRECKING my Extremely Overwhelmed Body.
I’m at the level of Exhaustion where even JUST moving position of how I am sitting or lying down (as much as I can do) is enough to leave me spinning with Dizzy that makes me feel like I’m ON an Outrageous Alton Towers ride & fighting Overwhelming Nausea and Pain.
I am Forcing and Pushing my way through DEALING with EXTENSIVE & EXTREME AGONISING PAIN, Overwhelmingly MAJOR Hyper-Exhaustion, Brain-Melting levels of Vertigo & Nausea, and Immense Stress, whilst also feeling Extreme Anxiety, Distress and Frustration at having to GO through All Of This.
It’s also humiliating, dehumanising, demeaning, degrading, disgusting, sickening, and creates self-hatred like nothing else I’ve ever experienced before in my life…
Even Worse — I CANNOT even change when I need to, or even HAVE TO. I physically CAN’T MOVE or BE Moved — the Spasms are too rock-solid. This is what happens when FND is triggered, particularly through stress, distress and high-anxiety. Instead, I have to swallow my pride - or, preferably, just kill it off altogether - and just Sit. In. It. Until such a time as I am able to do something about it.
These things are then made SO Much Worse by my Autistic Brain, with the distress & confinement forced onto me in this situation AND onto my body, with no end in sight and ZERO ability to Change It, which then sees the situation as threatening and frightening — which causes no ends of Meltdowns and Shutdowns, in constant cycles, Because it’s absolutely TERRIFYING, — AND I am Utterly Damned Helpless to DO Anything about it, to Stop it from HARMING ME More.
… It’s not like Logic can dig me out of it, either — IT IS Bat-Crap TERRIFYING to be SO Imprisoned inside my own self, in a body that is Very QUICKLY Degenerating & Shutting Down MORE & MORE from THIS.
I’m also haemorrhaging a small fortune in incontinence products to DEAL with this. Getting NO Help from Urology for THAT, either, naturally. These things are NOT Cheap and it’s like BEING YOUR OWN DAMNED BABY. Worse — You’re Mother’s Damned Baby, 44 YEARS LATER. It’s so utterly Degrading & Demeaning a situation to be in — and one I SHOULDN’T even BE in.
I’m getting to the point where if my body doesn’t do it for me, I’ll end up doing it myself… I don’t want to — BUT I do NOT want to be PERMENANTLY CONFINED to my body in the way that I am now.
IF this doesn’t Return To How It Was Before… And THIS IS my “New Normal”… I think I’ll be seriously considering why my life IS worth living or continuing with anymore.
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