The NHS: They Have NO Idea... Chronic Illnesses are Somehow INIVISIBLE even to those who Treat Us

They Do Not Have A Clue what people with SEVERE Chronic Illnesses Are Forced To Endure Through Because of Them.

EVERY. Single Minute.

Of EVERY. Single. Day.

The Consequences of Wasting — or worse, overspending —Spoons are DIRE. They're Beyond "Overwhelming", and directly into Dangerous.

And Who Cares The Catastrophic Domino Effect of all that will Annihilate whatever I am and have... And Who Cares when it's the time to PAY that price?

And Who Cares that they can do what they want, when the Person Involved is Slammed Harder Than A Tank and effectively punished for the other person's decisions...?

... ​**Nobody BUT** The Person… NOBODY Except The Patient Involved… is Punished or SLAMMED HARD into a WALL and left ignored & forced to JUST DEAL with it, and the fallout to themselves, and [any] others that are standing right there alongside them.

Take The District Nurses: They came to do my Suprapubic Catheter Change, and they were ALSO supposed to draw VITALLY IMPORTANT Blood Tests for me at the same time. Yet... They forgot / didn't bring the paperwork for it – apparently because there was some kind of mixup or misunderstanding about it.

One That NOBODY THOUGHT To Actually SORT OUT Before Coming Out To A Very ILL Person who barely made it downstairs once a month anymore... And twice was Out Of The Question.

Or at least, it should have been.

However – very unfortunately – I desperately needed them Done: ASAP. A Fairly Urgent OP Medical Procedure DEPENDED On It (as did my life; this was for clotting times and VWD [clotting] Factor tests to check it was SAFE for me to do it)…

Unfortunately, they really had complete disinterest in the Reality Of This Negligence For Me. They had Complete DISREGARD about the IMPACT this "oversight" had on me. To be Frank… The sheer nonchalance of it was actually truly disturbing to me.

"Oh, we can just have someone pop by tomorrow to do it instead"...
… So blithely said. And Just Plain CLUELESS to what they were REALLY Saying.

... Medical Professionals Once AGAIN without a Damned CLUE as to what it was going to COST ME to DO That.

Then... I had to face the Next Day – Going Downstairs to have my bloods taken. For Absolutely No GOOD Reason, whatsoever… Knowing All That.

HOWEVER – Because it was ***Important***, I HAD to say yes to it.

Basically FORCED into doing something UTTERLY DETRIMENTAL for me, my health, my welfare, [Long+ShortTerm] physical condition, medical conditions, and my mental health… Simply because they simply couldn't be bothered verifying what the job was – knowing damned well that I couldn't just "simply jump up and hop downstairs", – Especially ONLY JUST 24 hours after having been all the way downstairs on that day, already.

Unforunately, it's just about nearly killed me to go through ALL That AGAIN ... And Only JUST 24 hours later.

Not only that, they came 1h 30 minutes LATER than planned–so, no, I didn't HAVE to RUSH straight atfter Afternoon Meds started kicking in to get downstairs BEFORE 2pm.

I didn't even start going back upstairs until just shy of 4pm..

My Body Was Gutted. I couldn't physically or cognitively function after that.

The short version is that this "thoughtless", and frankly cruel, "oversight"… Absolutely Decimated Me, in the end.

Each time I have to deal with such things, the COST Is ASTRONOMICALLY HIGH... FAR TOO Damned High.

ANY few steps forward are not only written off, the COST goes FAR FAR FAR Too Deep into Detrimental for me to ever truly Recover from it. It WRITES OFF WEEKS of Functioning from my Entire Life AT A TIME. The Personal Impact, physical & psychological Devastation… AT BEST.

At WORST? It Worsens my FND -- Destroys Even More Nerve Function… And that mean my ability to move, use bodily functions, the tremors and twitches get worse in my hands and body, I lose even more ability to feel touch, my eyesight becomes worse from distortion caused by nerve dysfunction, Functional Seizures become more frequent, and even the physical struggle to Breathe Gets Worse. It affects how much I can eat, drink, and sleep, move, and even do with myself – and so far, I've been left with Virtually Nothing by now.

It flares up the Fibromyalgia even more, meaning A LOT More AGONISING PAIN, more spasms, being SEVERELY affected by Barometric Pressure even more.

That's only just basics. There's a Lot More…. And yep, enough to fill a 40-page document to send to the DWP that Didn't Even Contain What Happens To Me NOW.

So, tell me – HOW on earth can it be possibly Justified to "mistakenly forget" the forms, when THIS is what IS Going To Happen when I have to go back down for it? And it IS what happend when I DID have to go down and do them The Very Next Day. It's been six weeks so far, and I still haven't even started any kind of Recovery from it. Never mind everything else that's happened since.

I'm Severely Chronically Ill at This Point... I am "Bed/Room Bound" – Leaving my room is now Absolutely DEVESTATING to my already-WRECKED physical "health", stamina, pain, paresthesia, Spoons, Energy, and now–and maybe Especially–my Mental Health, because having to be forced to FACE the realities of it mae me feel even more of a pathetically vulnerable, useless zombie of a corpse / human-shaped potato.

After the past two years, especially, I have become EXTREMELY ill, with no way of knowing how to deal with it , OR how much further this downfall was going to harm me... Because now it's looking like there is Literally No End to Just How BAD It Can/Could/Will Get. No Joke & Not Any Kind Of Exaggeration. The Neurologist Confirmed It, much to my severely sickening horror.

Suprapubic Catheter changes are also Especially Traumatising for me, after losing three of them–including one DURING a Regular Change - and requiring TWO [separate] surgeries to reinsert them, with the last one being last year [2025] and the wait for it lasting Five MONTHS.

That was Five MONTHS of having to exist without ANY Catheter  whatsoever — whilst being entirely, completely, absolutely & Utterly ***100% Incontinent***. I was left to Wet Myself all day every day****…. With them Knowingly and Deliberately just letting me do so, for 18 WEEKS ⇒ aka 128 DAYS. That is NOT any definition of URGENT I can recognise, and is definitely NOT what the Consultant meant when he said it, and told them to do it Literally ASAP.

Whilst the Hospital's Urology Dept IGNORED, GHOSTED, Dismissed, Disregarded, & Belittled every plea, update & request — I Suffered EXTENSIVE [Long Term-to-Permanent] Complications To My Medical Conditions, Disabilities, Physical Condition, Mental Health & it was TORTUROUS To My Autism.

I told them EVERY LITTLE DETAIL, No matter how Disgusting or Personal. YET – They Didn't Care… Until they were threatened with the Ombudsman in my last email to them about it.

For Context, the first time my Suprapubic Catheter closed up, it took 7 WEEKS to reinsert it... And THAT was during the HEIGHT of the COVID Pandemic in December 2020 – Days/Week after the Second Lockdown was lifted for Hospital Procedures. I didn't have to BEG for that –they just sent it to me, and did a fantastic job.

Needless to say, when they being changed it is now very traumatic, frightening, & difficult–And that is Before you add anything else about my state of health, disabilities, medical illnesses, & so on.

Just Days Later – Yet ANOTHER DEMAND from Medical Professionals: THIS Time it was a Text Message from the GP Surgery on a FRIDAY, to TELL Me that they had Decided [without discussion] to put me down for an appointment [at home]… On the following MONDAY.

I was so ill, I only noticed it on THE SATURDAY beforehand. There was no way of contacting them now… Until the Monday that they expected to be here by 12:!5pm!

So, basically the ONLY Way to DEAL with that, was to be up at 8:30am on the Monday Morning, to play the Russian Roulette game of  "Dial-A-Doc"... [AKA, a cold-blooded game that basically had one Rule: Phone-GP Surgery-To-Get-Through], before Meds had even kicked in, or have ANY ability to think [at all, let alone clearly], AND whilst being in a LOT of Pain. … Basically: More Harm Created due to ABYSMAL POINTLESS Decision Making FOR Me.

As much as I hate them [calls] – Just One Short Freaking Phone Call could have sorted it out A LOT BETTER, When In (vocal) PERSON. AND THEN it wouldn't have been Wrong. OR Hyper stressful.

AGAIN.

~*~