Still Getting Worse...

With how ill I am, how Utterly EXHAUSTED I am, with how I how I VASTLY, DETRIMENTALLY, STRUGGLE with EVERYTHING – To DO ANYTHING: How I can BARELY Make VITAL Hospital Appointments, and almost am NEVER capable in leaving my Room, let alone the House, anymore, I feel like I am now in a position where this IS So Bad, that I Do Not Have Much Of A Choice in requesting this – and NOW.... 

Particularly when I’m STILL going downhill with my cognition, physical functionality & communication ability Quickly Eroding More & More from this ABSOLUTE EXHAUSTION. I fear there will SOON come a point where currently being 99.8% Housebound (and being Severely & Detimentally ILL for WEEKS or MONTHS thereafter in Consequence for the very FEW attempts at VERY Sporadic Hospital Appointments) will become 100% Solid in simply being Unable To Leave [Just] My Room.

Because of the Severity of the VERY WORST symptoms I have been experiencing for approximately Three Years thus far, and the problems they [inevitably] imbue, l I’ve been having a REALLY Hard time writing any and ALL of this, and it’s taken a LONG Time [started in August 2025]. It’s also taken a LOT of courage.

Whatever SMALL amount of confidence I had once regained in the NHS and Medical/Healthcare People has, by now, completely vanished; eroded by being dismissed, debased, betrayed, vilified, and treated like I am nothing but a… Nothing. Unimportant, depersonalised, dehumanized.

All I Wish For: is for this to just be sent to the relevant specialists for THEM to make a decision about this; the best people to do so. Whether or not that ends up being the case, is obviously down to whomever makes that decision now.

This Document is also probably one of the Least Succinct things I have written, due to the severity of just how ill I am and feel by now, and the things I am going through so bear with me as I try and explain myself..

Regarding The Definive Reasons I want this for, I have put some information in this cover letter, and I have included a Document that covers in greater detail what I am experiencing and how what I am experiencing now differs from “before” this started. It also looks at what has been classed as typical symptomology, and how or if I am affected by them.

As an Autistic Person, I find verbalising and discussing most things difficult as it is. However, with what is going on below, with the radical, physical and overwhelmingly disabling symptoms as outlined somewhat in this letter and wholly in the Attached Document, it’s become basically impossible. I’ve barely been able to write it. Bit by bit, I’ve been writing this since August 2025 and it’s taken me This Long to finish it and send it in[see date].

I have been suffering with these SYMPTOMS for SEVERAL Years, and they’ve been gradually Escalating Exponentially; The more time goes by the Worse & Worse it yet becomes – this has been so after late 2021, after I contracted COVID AND Had A Very Severe Chest Infection whilst I had it – but from around July 2025, it got to the point where I COULD NO LONGER PHYSICALLY FUNCTION WHASOEVER, anymore, in any way. This was because the Urology Dept at Ysbyty Glan Clwyd Physically DESTROYED me by GHOSTING Me when I needed a New Suprapubic Catheter Inserted “URGENTLY”, that instead took 18 WEEKS to do so.

***CURRENTLY: I’m at the level whereby — going by what is written on the ME Association Website — I am now sliding into the “Very Severe ME/CFS” Category.***

I now – EVERY SINGLE MOMENT of EVERY SINGLE DAY – suffer with EXTREMELY DEBILITATING EXHAUSTION, FATIGUE that not only NEVER leaves, but is so severe that the SMALLEST of movements generally [usually always] leave me feeling EXHAUSTED and DIZZY, as well as BREATHLESS – but NOT through Effort in the sense you’re inevitably assuming – it’s Absolutely From PURE LACK Of ENERGY to manage to BREATHE at all. I am LITERALLY TOO EXHAUSTED TO EVEN BREATHE. Around Medium-Level PEM happens from something as innocuous as just trying to find something I’ve just dropped. But if I have to go to the Bathroom, PEM of Off The Charts. Going downstairs to just get my Suprapubic Catheter changed causes PEM to RUIN ME for DAYS.

This is SO VERY DIFFERENT from ANYTHING I have EVER Experienced before in the 12 Years I’ve had FND & Fibromyalgia.

I can only liken it to: Imagine doing FOUR hospital night shifts in a row with NO Sleep between them and NO Caffeine. Then get so drunk you’ve got THE WORST Hangover in human history. Whilst you’re like that, go on a REALLY Big Rollercoaster, then on the Walzers. After that, don’t sleep for a week, but keep going on the Rollercoasters and Waltzers with a Bad Hagover. And Maybe Then You MIGHT be close to how absolutely BEYOND DEBILITATINGLY DESTROYED I’m feeling now.

This is SO OVERWHELMING, I therefore cannot COGNITIVELY OR PSYCHOLOGICALLY FUNCTION, whatsoever, either anymore [as well as being unable to physically manage anything]. This has also, obviously, EXASERBATED MY MENTAL HEALTH ILLNESSES, because I now feel 100% VERY Imprisoned & VULNERABLE in this CAGE that used to be “just” my body.

I struggle to eat or drink at all, and I do not sleep properly, or sometimes even at all; I definitely DON’T Rest/Get Rested – and what sleep I do get only makes everything worse. Much Worse. Usually involving Extensive Nightmares from my CPTSD & PTSD.

I was firmly in the “Moderate to Severe” Description of that ME/CFS Scale – UNTIL December 2024 & ONWARDS,when there started a range of overwhelming & debilitating things that happened that then pushed me into the “Severe” category.

In December 2024, I was FORCED to RUSH a LONG Report into my disability & health by PIP, who were demanding a new Review: Despite it only being 2 years since my last one; despite it December and NO ONE was going to read it before JANUARY at the very earliest, despite the fact it was Christmas, AND Despite the fact it Wasn’t Even DUE until JULY 2025 (incidentally, I STILL haven’t received a response; making the EFFECTS of this more HEARTBREAKING, Galling, & HOPELESS).

They also ONLY gave me TWO WEEKS To Complete It [instead of “One Month”] to actually do it, making PRESSURE Of It EVEN WORSE. It PUSHED Me Into SEVERE AUTISTIC BURNOUT.

Unfortunately, things didn’t get better. We had to attend three separate Hospital Appointments in Liverpool in January and then March 2025, meaning Extended stays in the local Premier Inn as a “temporary home” base for them (costing a small FORTUNE we have to save HARD for, or otherwise Must Accumulate Debts on cards for], PLUS Subsequent WEEKS OR MONTHS of Absolute, Physical , TORTUROUS HELL of Consequence.

THEN I lost my SUPRAPUBIC CATHETER in May 2025, when it unexpectedly CLOSED UP during a routine change. Subsequently the UROLOGY DEPT Of Ysbyty Glan Clwyd took 4½ Months/18 Weeks/129 Days, to undertake the surgical procedure that had PERSONALLY Been Deemed “URGENT” DIRECTLY by the Consultant & Surgeon HIMSELF; telling me in the meeting I had with him about it, that [somewhat paraphrasing] “they would sort me out with a good date”, in reference to how quickly I might be seen.

The Consequences were Appalling and Demeaning:

I was left WAITING, in LIMBO, in a shattered, demeaning, wrecked, VERY ILL & Getting Worse Physical [and psychological] State, for FAR TOO LONG. We were GHOSTED – AGAIN and AGAIN as my mother chased them (I was FAR TOO ILL to do so myself]. My MINUTE amount of energy was BURNT OUT dealing with SEVERE Incontinence whilst suffering from SEVERE FND and extensive Paralysis, Fibromyalgia, EXTENSIVE HYPER-FATIGUE, and more. I was Constantly Wetting Myself, including my clothes, the incontinence mats & Incontinence Pants [with the amount of urine expelled]; being FORCED to Change Clothes, Mats, Incontinence Pants – SEVERAL Times Per Day, Every Single Day. It Physically DESTROYED what little was left of me, and I was barely able to eat or drink during the ENTIRE Time [this is ON TOP OF The DYSPHAGIA].

Sometimes I was TOO EXHAUSTED & AUTISTICALLY HYPER-SENSITIVE from Sensory Overload, meaning I couldn’t move NOR could I be touched – therefore I was REDUCED To Remaining in my soiled everything, until such time I was just about RECOVERED ENOUGH to manage the “FULL Changeover”. The Rest Of It is on the Enclosed ME/CFS Document.

I wrote 3 emails to Complaints and threatened them with the Ombudsman before they fell over themselves to Quickly offer me a Very Imminent Date for September 2025. BUT by then, it was FAR TOO LATE for my Health, the SEVEREST DAMAGE had Already Been Catastrophically Long DONE. ALL of these overwhelming and debilitating things had FORCED me further towards the high end of the NON-FUNCTIONAL END.

Worse, I contracted an Antibiotic-Resistant Bacterial POST-OPERATIVE Infection. The UROLOGY Department Ghosted Me about it. I was left to request my GP Surgery help me, but what I received was a sporadic response to OUR CHASING, and even some Ableist Verbal Abuse, that caused Traumatic Flashbacks for my CPTSD, which confounded and worsened matters extensively, including Immediate & Renewed Destroyed TRUST in Medical Professionals. Obviously the CHASING, The HIGH Traumatic Response & immense Distress about it had a HUGELY NEGATIVE Effect on my Fatigue, Illnesses & Disabilities.

After THAT, I was/felt ENTIRELY COERCED & FORCED to attend a GP appointment in December that I could NOT AFFORD TO Push Through For, but I VERY STUPIDLY DID SO… And it completely PUSHED Me Right Over into the WORST ME/EFS Category, where I am now, by the end of December 2025.Marking ONE ENTIRE, SOLID YEAR Of Absolutely Profound Physical & Psychological HELL

More Details:

I’ve been getting more and more Hugely & OVERLY EXHAUSTED – Extensively, Overwhelmoingly, Severely “Fatigued”. I can barely manage to move these days, without being UTTERLY, TOTALLY EXHAUSTED – so exhausted that even breathing is difficult [it’s nothing to do with asthma or being out of shape AT ALL] – it literally feels like my body doesn’t have the energy to take even small breaths.

The HYPER-MEGA FATIGUE hits even when doing even the SMALLEST THING. And by”small“ I mean searching for a pen I left next to me, or reaching for something. Adjusting my seating position. So I can at least do the bare minimum of what little I can do, I don’t even bother getting into bed anymore, because I literally couldn’t get back out again without sabotaging the rest of the day, possibly even the entire week – and therefore there would BE no reason to ever GET out of bed. I just have a “ spot” on the floor of my room that’s easier to maneuver myself around with the least possible hassle, to have ANY level of functioning, even though it barely counts as “Bare Minimum“. I’ve had to do this since May 2025 onwards, because of what theUROLOGY DEPARTMENT OF YSBYTY GLAN CLWYD put me through when my last Suprapubic Catheter failed, and wrecked whatever was left of my Spoons.

The worst things to have been hit with, have been the DEVASTATINGLY OVERWHELMING Fatigue, RIDICULOUS & IMMEDIATE Temperature Changes/Swings, More Complicated Memory Problems, Difficulty with Food And Eating that’s from changes in ability to tolerate just about any food and zero appetite [as opposed to “ Just Dysphagia”], Difficulty Drinking [anything] – both of which has little to do with Dysphagia, which is a separate matter, and Aphasia.

The MEGA FATIGUE then also inflames the Pain, to ridiculous levels, making everything a Thousand Times Worse. It’s also sent my Mental Health right over a cliff edge, as well.

It’s also significantly compounded and worsened the AUTISTIC BURNOUT that I was already going through and experiencing badly. So, it feels like I am experiencing the worst of each in tandem – and that they are Very VESTLY Different – and I’m more than familiar with Autistic Burnouts, having had many of them starting at the age of 12.

The REST of it, however, couldn’t be FURTHER AWAY from ANYTHING I have EVER Experienced or Dealt With Before, and That Is Saying Something, given everything that I have been through in my life.

The overwhelming symptoms I have been feeling have been steadily getting worse since 2023, and it’s been slowly-but-surely eroding into me with time. However, Over the past year, and even more so since May 2025, things have been Very Quickly coming up to the point where it’s now Insurmountable and life-changing. Even Life-Destroying. I have been exceptionally restricted Post-COVID, having had a deterioration in pain-management and worsening energy & stamina, ever since, getting worse and worse over time.

When I contracted COVID in late October 2021, had it until about the 2nd week of November 2021, and I was pretty much Entirely Asymptomatic of COVID whilst I had it. After I had COVID, things started to Get Worse, slowly-but-surely; a startling realisation at the time, considering when I’d had it. I’d lived with Fibromyalgia and [unwittingly] Functional Neurological Disorder [FND] for 8 YEARS at THAT Point, and even been through fighting Septicaemia & Sepsis, WITHOUT such Extreme Consequences as I have been living with Post-COVID.

After COVID, the plateau I’d worked hard to create for myself over the previous few years since having Septicaemia, just started QUICKLY falling apart – where no matter what, the “goal-posts” kept on shifting and my world kept on steadily getting narrower and narrower, from the amount of Spoons I had all the way to what I could eat [taste/testure-wise]. FND symptoms were being amplified, getting worse, getting added to. Other things I’d never come across before started turning up, like DYSPHAGIA – which is one of the Symptoms of FND when it’s getting Worse.

But the one thing doing the MOST Damage to my life, was the constant deterioration of my Energy and Stamina. It started off feeling like, “well, yes you’re not doing great – your body is recovering from something that is busy killing literally millions of people all over the world”. But then it kept on Getting Worse, and then Worse Still — like it was riding an avalanche on a jet ski, and showing no signs of stopping. As the Lockdowns diminished around the world, my own Lockdown was getting more and more Brutally Punishing.

By now, I feel like I’m a Prisoner In My Own Body; imprisoned in a room, within a house, within a small village. I feel HEAVY, made of marble and lead, and like the Statue of Liberty is probably lighter than how I feel I am… Moving is like trying to push and wade through cold and congealed over-thickened custard mixed with cold and congealed over-thick porridge.

**It’s come to the point where I can’t even function in any way. Where I can’t physically move myself at all, I cannot think at all, I cannot do gaming, I cannot write, I can’t read short stories of FanFics (mere pages long), or even manage with just staring at X/Bluesky/Threads, etc, like I used to when it was “just” FND/Fibro. Nor can I go anywhere, or do anything – even in the house. Even just in my own bedroom, like I once did. I can’t even make it to the fridge that’s in my room and back to my “spot”, even though it’s a mere 4 or5 feet away, like I once could, Quite Easily. I certainly cannot do anything more… Not without the SEVEREST of Consequences, like if I go to the Bathroom, downstairs for a Catheter Change, or if I HAVE to go to the Hospital.**

Moving leaves me breathless – not from effort or exertion, but PURELY from EXHAUSTION. Being “Too Tired To Even Breathe” is my New Norm, and it’s Devastating in how destructive that is. Every single SMALL thing feels like a VERY Exhausting BIG Thing. I can’t even pace anymore, because I have to do at least some things, and it leaves me absolutely crushed by the BEYOND-Exhaustion by the end… And by that, I could mean nothing more than changing my clothes, or incontinence pants, or even just trying to find something I’ve dropped (and I’m always dropping everything now). I can’t even climb in and out of my bed (which is about 6” off the floor and I’m sitting right next to it), because at the end of the day I just don’t have it in me to manage it. If I were to do nothing more than just get out of bed in the morning, I’d literally use up more [Spoons/Energy] than I had to manage the entire day, and literally Would Not be able to do even the Barest Of Bare Minimums anymore, for that day [so it’s best not to do it, for my own sanity and for the small privilege of being able to do even A Small Thing on any given day]

Unfortunately, That *Inability to Manage The Bare Minimum* ALSO Includes Eating & Drinking: Even Eating and Drinking I can scarcely manage at all, anymore – and that’s Entirely Separate from the Dysphagia.

I simply do not have the energy to eat, and if I try, then I will – and do – end up Triggering FND Functional Seizures BlackOuts, because it seems even That is Too sfor my own body to manage. I am throwing away a small mountain of food because when it comes down to it, regardless of whether or not I even have an appetite for it, because I just do not have the energy to do so. More than half the time, I don’t have any appetite for it, either – and That is Entirely Separate from my [former] Eating Disorders* – which have now decided to try and come back, after being successfully kept away for 20 years or more.

Things were BAD even BEFORE my Suprapubic Catheter Closed Up… BUT After it did — I was left with NO Suprapubic Catheter – OR ANY CATHETER — for FOUR AND A HALF MONTHS… From 13th May to 19th September. AFter that EVEN MORE COMPLICATIONS & THE COERCED VISIT TO THE GP SURGERY THAT LEFT ME IN

And The CONSEQUENCES were IMMENSE.

EVerything within the past NINE MONTHS ALONE made me SO MONUMENTALLY ILL, that it COST Me Whatever TINY SMIDGEN of health I EVER Had LEFT…. AND I Have Been Left BEYOND Broken, Now – BECAUSE OF THAT. EVERYTHING HAS GONE DOWNHILL LIKE A ROCKET WITH AN ADDED JETPACK – PARTICULARLY AFTER The TWO Incidents with the GP Surgery.

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THIS LETTER & The Accompanying Document has taken SEVEN MONTHS to write, as it is.

This OVERWHELMINGLY DEBILITATING, CONTROLLING, EXTENSIVE HYPER-FATIGUE has NOW been growing WORSE and WORSE since this extra journey into MORE DEBILITATING Ill-Health started from early 2022. [see THE ACCOMPANYING DOCUMENTS for FULL DETAILS].

** However, in the past NINE months or so, that DEBILITATING, EXTREME Exhaustion & Fatigue has gone from VERY HORRENDOUS to ASTRONOMICALLY IMPOSSIBLE to Exist With. **

I have also enclosed An In-Depth Document DETAILING MY SYMPTOMS, prepared from the Diagnostic Criteria listed on the NHS Website (listed on the document) for ME/CFS. I’ve done this because I am no use when trying to explain things; being Autistic, it’s ALWAYS been problematic to verbalise answers, and found it easier to write everything down. However, now, it takes too much EVERYTHING to try and do that – trying to speak, trying to think, trying to remember, trying to not be Too Scared (Autism exacerbated by Fear & Exhaustion). It especially takes TOO MUCH SPOONS. I am Beyond Bankrupt of them, now.

This is a large document: This document could easily be Downloaded:

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I preface the next section with the fact I [am well aware that I] have been to be assessed once before, in case it was an addition to my Fibromyalgia, and at THAT Time, I was not deemed to have it back then [this was approx either 2016 or mid-2017 (at the maximum of before September of 2017)]; a Decade Ago.

AND NOW — I can TRULY Understand the VAST difference between them and how they differ… Because, THIS level of UNRELENTING EXHAUSTION and DEBILITATING FATIGUGE isBEYOND COMPARE.

It was NOTHING LIKE THIS BEFORE – EVER. Before, some Rest, Recuperation – and later, decent Painkillers – eased up on the Fatigue and Fibro-Fog Very Well, and I started Getting On A LOT Better.

BUT – THIS Time… It Is Damaging, Dangerous, FAR Too Overwhelming To Even Try to “Push Through”... and when I do PUSH, I end up with Dangerously High BP and a RAISED Temperature, on Top of Post-External Fatigue that doesn’t get better but actually KEEPS GETTING WORSE & WORSE. After ANY of these. I get a NEW NORMAL, which is always FAR WORSE THAN THE LAST ONE.

AND RIGHT NOW, I AM NO MORE THAN A ZOMBIE – A DECREPIT BODY WITH NO SOUL.

It Is SO VERY Debilitating, the EXHAUSTION SO ENORMOUS, it ALMOST ALWAYS makes it literally Difficult to even BREATHE, because it takes TOO MUCH ENERGY to even manage THAT. If I’ve moved JUST a little too much, then I literally struggle to breathe, like I’m on a REALLY HIGH Mountain and struggling against Hypoxia; THAT’s how Difficult it is to Breathe.

At the ME/CFS clinic I went to all those years ago, they did happen to mention there was one VERY big difference between Fibromyalgia and ME/CFS, especially at the start of either:

Easily answered by One Question:

— Which is worse – The Pain or The Exhaustion?

Back then, it before I had ANY Treatment AT ALL for my Fibromyalgia [and unbeknownst to ANYONE, I also was suffering from Functional Neurological Disorder [FND], as well] – the answer was CLEAR & OBVIOUS:

— My Answer BACK THEN?: It was PAIN. [100,000% “No Brainer”]. The Pain was BEYOND AGONISING back then… Unrelenting, Horrific, Unbearable & Unbreakable… And I was on nothing but Pregabalin [Lyrica] back then.

Bordering on 10 YEARS later, having been through A LOT since, including: Septicaemia (2018), COVID (2021), several BAD chest infections (2021 to 2024), and Two Years SOLID of Autistic Burnout [MEGA-BURNOUT]... (late 2021 to 2023), More MEGA BURNOUT – DWP PIP Request + 4 hospital appointments in 3 MONTHS (December 2024-March 2025)

Suprapubic Catheter Wait for 18+ WEEKS (May-September 2025), and the MASSIVE FORCE-PUSHED ULTRA-DESTRYING BREAKDOWN Thereafter (November 2025 -Present).....

My answer has Now DRASTICALLY CHANGED.

Right Now: My Answer Is DEBILITATING FATIGUE & EXHAUSTION [100,000% “No Brainer”]

AND At the END of all this… I AM MORE THAN BROKEN. AFTER ALL OF THAT, AFTER SO MANY YEARS OF MANAGING THROUGH MY MEDICAL CONDITIONS BEFORE THIS…
My Body SEEMS FINALLY DONE.

I hope to have my request Respected and Understood. I hope this request is not going to be ghosted or ignored, or worse, belittled. My Past with Medical Professionals means most of my experience is to be Disbelieved and Ignored; at worst, to be Dismissed.

I’ve only had GOOD interactions regarding such things at this Surgery, but my recent incident has brought back a huge avalanche of CPTSD, PTSD, and Flashbacks. These responses are such things – that I have only been belittled, ignored, dismissed and debased, even as an adult. My fear is real and based in the past; unfortunately, it doesn’t make it any less frightening.

I hope that this ME/CFS “investigation” brings Answers — A YES or a NO gives as much as each other when it comes to information. A YES brings understanding and a platform to work off. A NO gives immediate RELIEF and you can MOVE ON. Either way, it’s worth it.

THE BOTTOM LINE IS>

It leads to BETTER UNDERSTANDING and Realisations, either way.

END