I wonder how much Medical People truly care (like is it even 0.1%?) about what patientsâ Lived Experiences actually DO to them⌠Physically, Cognitively, EmotionallyâŚ? How the Ramifications of their ghosting and gaslighting and postponing and time-wasting have Very Real Consequencesto them, and the people around them?
Three MONTHS Iâve been waiting for my âURGENTâ Suprapubic Catheter re-insertion. They did it in 7 WEEKS between Lockdowns & it was just before Xmas in 2020⌠and one shouldnât need a WORLDWIDE PANDEMIC to actually have surgery they desperately needâŚ.
And STILL theyâre 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. Iâm Less than 45% of that age! My counterparts are working, raising children, going on trips or holidays⌠Iâm just a year older than the Prince & Princess of Wales â so thereâs a VERY GLARING reminder of âWhat COULD have beenâ 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 â and ghosts me like I donât exist.
Iâve now reached the point where I truly feel it wonât 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 and Septicaemia â from Two Different Blood Poisonings.
⌠Call me deluded, but I REALLY donât want to get on THAT crazy-train EVER AGAIN⌠So, Iâm getting more than a bit freaked out about how badly Iâm 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. Thatâs BEFORE youâre talking about the Pain, Vertigo, Nausea, High Stress⌠etc.
Are you actually supposed to be able to GET Post-MalaiseâŚThingy⌠from just breathing and existing? Cos I Do.
Anything more than that, even moving a little bit, and I am WRECKED, like Iâve done a half-marathon. Anything more than that, and itâs worse than a Himalayan Treck to the peak of Kilimanjaro and back. I Am UTTERLY, TOTALLY DESTROYED â for WEEKS. Maybe (usually) Months.
I have virtually NO Appetite, and barely eat, nor have any energy to manage anything, anyway â 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 â which is just about destroying my soul, and definitely NOT helping with the Fatigue.
I donât really sleep. Most of the time my body just runs through Functional Seizure BlackOuts â itâs ironically not conscious enough long enough to actually GO to âsleepâ on most days. Other times, I might get maybe 2 hours of it, and it mostly happens by accident⌠I certainly canât 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 âawakeâ â not even âawake-ishâ, which was my norm previously â anymore.
Functional Neuropathic Disorder and Fibromyalgia Flareups are basically Permanent 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.
Iâm 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 Iâm 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.
Itâs also humiliating, dehumanising, demeaning, degrading, disgusting, sickening, and creates self-hatred like nothing else Iâve ever experienced before in my lifeâŚ
Even Worse â I CANNOT even change when I need to, or even HAVE TO. I physically CANâT MOVE or BE Moved â the Spasms are too rock-solid. This is what happens when FND is triggered, particularly through stress, distress and high-anxiety.
These things are then made SO Much Worse by my Autistic Brain, with the distress and confinement have to this situation AND my body, with no end in sight and ZERO ability to Change It, which then sees the situation as threatening and frightening â which causes no ends of Meltdowns and Shutdowns, in constant cycles, Because itâs absolutely TERRIFYING, â AND I am Utterly Damned Helpless to DO Anything about it, to Stop it from HARMING ME More.
⌠Itâs not like Logic can dig me out of it, either â 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.
Iâm 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 itâs like BEING YOUR OWN DAMNED BABY. Worse â Youâre Your Motherâs Damned Baby, 44 YEARS LATER. Itâs so utterly Degrading & Demeaning a situation to be in â and one I SHOULDNâT even BE in.
Iâm getting to the point where if my body doesnât do it for me, Iâll end up doing it myself⌠I donât want to â BUT I do NOT want to be PERMENANTLY CONFINED to my body in the way that I am now.
IF this doesnât Return To How It Was Before⌠And THIS IS my âNew Normalâ⌠I think Iâll be seriously considering why my life IS worth living or continuing with anymore....
