I don’t think the NHS has ANY shame when it comes to gaslighting. Or maybe, it’s fairer to say too many of their Staff as any shame when it comes to gaslighting patients.
On the 13th May 2025, my Suprapubic Catheter inexplicably closed up. On 20th May, I Urgently see them in clinic & Consultant says new surgery is URGENT to his secretary and fully expects her and whomever does Appointments to sort it.
Pah-Hah…!
It’s another load of BS, like the Very First One I had. That one was a Nightmare that caused genuine PTSD and still haunts me… and it’s Especially doing so right now.
They KNOW that it’s Urgent. They KNOW it’s actually Physically Destroying me to be like this. I TOLD Them it was URGENT. HELL, The CONSULTANT said it was URGENT. It’s even In Writing, in his GP letter. He told the secretary to have me shoved in ASAP.
That was TWO MONTHS ago. I Expected It All To Be DONE By Now… Not Barely Started With.
Just 2000% IGNORED.
… &
Gaslit… Again.
The LAST time this happened — and yeh, this is actually the THIRD Time a Suprapubic Catheter has actually fallen out on me, and 2nd time it’s closed itself up without me knowing about it, requiring surgery — it was during the COVID Pandemic… on 26th October 2020. I went to A&E that evening/night, and they were going to keep me in overnight and redo it quick the next day… But I have a serious Blood Clotting Disorder… So. No Go.
Back on the Waiting List, under URGENT.
Then, SECOND Lockdown Hit.
… And YET — as SOON as that lifted, I got shoved in ASAP: On 21st December 2020. It went Perfectly. Couldn’t have been more of a Perfect Autistic-In-Hospital Experience. For A Wiccan, Winter Solstice, YULE Day, is Significant… Really, it kinda felt like a Miracle.
So. Yeh— It took LESS THAN EIGHT WEEKS… DURING THE ACTUAL COVID PANDEMIC & LOCKDOWNS.
Therefore — What kind of excuse could they POSSIBLY have now that ISN’T Gaslighting THIS Time…??
They never called; We Chased Them. My Mother demanded the Pre-Op be done herself, eventually, because THEY weren’t doing ANYTHING, or even Discussing this situation with us. They were supposed to get in contact with Haematology regarding Von Willebrand’s Disease [VWD] Support & Clotting Infusion Protocols.
NADA — Haematology did the pushing instead, after WE told THEM about it.
Said Pre-OP was finally done — and dated NINE WEEKS after The Initial Incident. It’s in Two Days, as of writing.
...We had *PROBLEMS* with dear “Penny” The Urology Secretary not doing Jack Shit for my Best Friend a few years ago, when she had Suprapubic Surgery and the Post-Op phase went Very Wrong. Nearly cost her DAMNED LIFE, because “Penny” did NOTHING to help or get Best Friend BACK INTO the Clinic to see her Consultant.
… Now, here dear ol’ “Penny” is... Again… Costing Me My OWN Damned LIFE — just in a different way… & almost JUST as serious. It is, when you’re actually Suicidal because of the STATE you’ve been LEFT in — for NO good reason whatsoever. When you’re just a Lump Of Potato Rock, wetting herself, getting “nappy changes” by Mam, and SERIOUSLY CLOSE to Full, Dangerous, Physical — and Autistic — BURNOUT.
I was already Suicidal at the state I’d been left in, after having Functional Neurological Disorder gaslit & undiagnosed for 12 YEARS. Fibromyalgia was ignored too long, to the point it was Almost UNTREATABLE, when I got some Meds that worked.
That I’ve been nothing but A Broken Body, with no way of really using it, after degenerating VERY BADLY to basic bare-bones functions, where even BREATHING was difficult because my chest didn’t expand properly and my Diaphragm was out of the equation with sternum-level Paralysis (effectively Tetraplegia).
Now, my Suprapubic Catheter of 4 ½ YEARS has GONE, leaving me BADLY, FULLY Bladder Incontinent.
I’m SO EXHAUSTED I barely even have the energy to try to breathe, let alone anything else. The Energy Levels, The SPOONS, required now to Manage this Incontinence is APPALLING & UNMANAGABLE. It’s going to end up in a BAD Way. The last time I was THIS Bad I had a 5 HOUR BlackOut Seizure - and not long afterwards ended up in HOSPITAL.
This is also LITERALLY My Worst Nightmare Come True… Living My Worst Nightmare is Unbearable.
Functional Seizures [aka “BlackOuts” & “ZoneOuts”] are MUCH Worse than usual — they last LONGER. There’s MORE of them. I don’t come round in the same way as I usually do, with the same techniques used for it. I get BAD Nightmares now, during almost ALL of them; none of this happened before, whist I had the SP Catheter. They’re mainly from PURE, UNRELENTING PAIN & EXHAUSTION, but also comes from extreme, overwhelming, life-destroying Panic & Anxiety.
I barely eat & I barely drink — Severe Dysphagia makes it hard enough. Between Functional Seizures and feeling WRECKED and Unhinged with EXHAUSTION when “Conscious”, but Rarely Lucid. I Need A LOT of Focus and Lucidity to manage food and drink, or I have my face in a vomit bag trying to get what I’ve Aspirated BACK OUT Again… Lest I have Yet Another Very Dangerous Chest Infection from food or liquids left in my lungs.
I also AVOID Drinking ANYTHING, as much as I can get away with, because I Simply CANNOT Physically Cope or Manage DEALING with the Output:
Changing Incontinence Pants. Changing Incontinence Sheets. Changing Clothes. Having to be Cleaned Up by my Mother — it’s like I’m an Infant or Toddler, again, because I can’t do it. Even if I could, it would Cost Me Even MORE Spoons; would that “independence” even be WORTH it, anyway??
I do not really DO anything now. I can’t. I’m either BEYOND SO EXHAUSTED I CANNOT FUNCTION, Zoning Out or DEEP into a BlackOut/Functional Seizure [that can last a few minutes to a couple of hours, these days], Or recovering from one — which can take a few hours. If I don’t happen to be any of those, I can’t Physically Move Much & I Can’t Actually Focus on anything… Because I’m simply UTTERLLY WRECKED.
This doesn’t even cover what it does to my Mother. How much [more] Washing has to be done on a daily basis. How MUCH it costs Financially. What it is like to have to Go Outside like this, and what it takes to manage to go out somewhere whilst completely and devastatingly Bladder Incontinent
My Mental Health is BEYOND rock-bottom, with this. I’m SO Desperately trying to DO Something with myself, but when I’m attempting any of them, I end up in an also immediate BlackOut from the strain of simply trying to Concentrate & Think. Any Excess Stress or Physical Exertion that’s beyond Bare Bones is Too Much for me now.
I’m honestly surprised this level of BEYOND EXHAUSTION and Physical STRESS, emotional Anxiety, and Severe Meltdowns from sheer Despairing and Anguished Helplessness, Hopelessness, and being a POINTLES Quasi-Modo Potato Non-Entity that does NOTHING but wets itself… hasn’t actually managed to kill me yet.
The last time I was THIS bad… I was hospitalised with Septicaemia & Sepsis, which included TWO Blood Poisonings. and a “Massive” UTI & Bowel Infection, that required nearly Two Months of IV Antibiotics to be saved from.
Funnily enough, I do Not want to get THAT ILL again. So far, though, it’s an upwards battle on a downwards escalator.
After continuously hearing nothing from them, I even sent the NHS Complaints Department an email about it. A Week Ago.
After continuously hearing nothing from them, I even sent the NHS Complaints Department an email about it. A Week Ago.
There’s been nothing but Radio Silence since that automated one you get when it lands. You’d think they’d at least assign it to someone and say hi…
They’ll be getting another one in a couple of hours, when I go chasing it up like a bloodhound. I wish I was still “Work Leli” inside… But Exhaustion, Helpless Hopelessness, Drained Hyper-Fatigue and a few Very Bad Medical Conditions is totally preventing me from being That Badass again.
I’m Not Even Quite Sure What you’re supposed to do when you’re
being Gaslit by the Complaints Department…??
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