Category Archives: Chronic Pain

BETRAYED — BY CORONAVIRUS & NHS

I go through this Crap-Ass Existence in as much silence as possible these days… It’s easier, because writing about it requires Processing that I cannot manage anymore — a fact which hurts me and depresses me, because I’ve always used writing to deal with things my entire life…

BUT this time, I feel things have gone too far, and I finally REALLY have something to say…

Yes, many people are ill and some have succumbed to CoronavirusBUT… do they have to Further Destroy what non-life that I have left because of it? I may as well catch it — I have no life. Barely an existence… And now they’ve taken the ONE THING that could have helped give me at least a little bit of my pathetic existence back…


THEY CANCELLED MY SURGICAL OP FROM GODDAMNED CORONAVIRUS…

They called me TODAY – It was going to be on FRIDAY… 😠

I have waited For. OVER. TWO. YEARS… Had FOUR PRE-OP APPOINTMENTS since getting my Initial Consultation Appointment — in FEB 2019 — after waiting ONE YEAR for that alone! One of them was for Haematology for blood tests and Clotting Preparation, because it was FINALLY going ahead…!


All I needed was a SIMPLE SUPRAPUBIC to make my life even slightly worth living… I WAS SO GODDAMNED CLOSE…!!!

I am… DEVASTATED

My poor Aspie Autistic brain cannot deal with all this… My Mental Health is already virtually destroyed having to deal with this catheter situation… I don’t even know HOW to process this now… Having it come out on its own from constant agonising spasms, and doing it anywhere from 45 MINUTES to 3 weeks… It’s CRIPPLING & LIFE DESTROYING.

I do nothing but barely exist. I am a slave to this… Constant agony, loads of extra meds just to try and keep it from shoving itself out straight away… I had to be up in the middle of the night to about 4am on my BIRTHDAY for a nurse to come and shove one back in… and don’t get me started on the 24/7 agony of the bladder spasms, where I can’t even move and barely breathe… All day. Every day. For Two Years. And now Counting… That’s on top of paralysing and agonising Fibromyalgia and Hemiplegic Migraine, and a bunch of other crap to go along with them…

I was due to have it by LAST AUGUST… and yet, March 2020 (7 MONTHS LATER, from that) I’m being CANCELLED ON.

Ohand not even God himself knows if or when I will ever get it done in the future now, too… Yes, they basically verified that with me when I asked, ”When I am going to have it then?”…

Right now… I am doing my level best to fight a Screaming, Hating, Horrified & Terrifying Meltdown… It’s there, bubbling away inside me from Panic, Dragon of Disappointment, Horrified Realisation & Understanding… And the utterly Devastating realisation I’m going to have to suffer through this now quite probably for Many More Months To Come

Even my dog (and he’s a rather thick Staffy) knows very well they are NOT going to prioritise Coronavirus-Cancelled surgeries over the Regular, Normal Ones already booked in for whatever time it is that this insanity ends… We are going to be pushed back and slotted in, wherever they can shove and stuff us — regardless of the fact we were Technically There First

This is Definitely where Alexithymia Really puts me up shit’s creek without a paddle… I do Not know what to do with myself… I am a screaming mess, trapped inside my own head, and trapped inside my own body, with a million things suffocating me inside, without a goddamned clue as to what most of them are… It’s bloody goddamned Terrifying

I think I figured out a few… I have a book, so I’m trying to learn better… They’re in the Tags at the bottom… I’ve been punched in the gut and betrayed again and again and again by the NHS, and now this Really, Really Screws With My Head… And I Really, Really Don’t Want a Meltdown…

I literally do not know how to deal with this. I feel sickSickened… Right to my stomach. My Depression, Despair, Anguish, Grief… are all threatening to go ape-shit, and I am genuinely struggling with figuring out where the Point of Being Alive just Stops. I am more than well aware that if I were a cat, I’d have been put down a Long Time Ago, because it would have been the Merciful thing to do, since my Quality of Life would be Zero, and all I would ever experience was Pain… So, I wonder where that line for Humans really is…

I Hurt… Inside and Out… In my Heart and in my Soul. I am Scared…. And I am SO, SO Goddamned Exhausted… Having this form of Catheter is my Existence now…. Dictates everything… And now, I have to Continue to be a Prisoner In My Own Body, after being so ridiculously close…

And to make it even worse now? There’s no Paracetamol to be found, or virtually impossible to find!

Everyone is. “Stocking Up”…. and WHY? What is actually WRONG with THEM?

WITHOUT THE PARACETAMOL my Pain Meds WILL NOT WORK PROPERLY… I will be in even MORE agony — first I have to keep with this catheter Pain, now it has to be worse, because people want to have a caseload “JUST IN CASE”? My AGONY is NOW… and I just feel

DEFEATED.

🥺😢🥺🤬😖


I. Just. Cannot. Catch. A. Break. I am beyond Utterly EXHAUSTED. Another Goddamned Morning From ALL HELL…

AND I am in a LOT of pain, in my back – To make matters rather worse, the bed (Hypnos Mattress) requires flipping, and it causes a lot of pain when it’s getting soft and unsupportive.

This time it was the goddamned dogs again… Barking, even bloody howling, at the door… For Gods know what! But they were going ballistic – and Dad was doing absolutely nothing to help… They were edging on Red-Zone-Gone and he really didn’t understand this.

So – I Slid Down, All. The. Way. Down. The stairs to get to them. Souly went immediately quiet; Buddy did not. I focused on Buddy, then he went ape-shit crazy when I compronted him with a “Tch-Bite” with my hand – So, I picked him up by his collar to standing (as I do with Souly), and the damned Wackadoodle went and Nipped me… Cheeky Fuck! Cats do far worse than him when they’re chilled, so it was hardly anything to experience — but… The Damned Cheek of It!!!!

Well, He got Alpha Rolled (so much easier than Soul, who knew…!!…). Souly was pulled back because he lost his temper a bit at Buddy. Then I really let rip into them. A LOT. And I was furious with them for creating such a bloody Fracas! 

After that, some planes turned up, so they both just cowered. Not sure if it didn’t help make my point more, actually, showing something to be afraid of as part of my arse-ripping…? Well, I let them go, and had to then face the fact I had to climb my way back upstairs.

I did it – pulling one knee up at a time, leaning on the opposite side for stability, then hauling myself up each goddamned step.

I just about managed to make it up when I had to turn to comfort & soothe Souly more, for several more minutes on the stairs, when the building site noises across the road by the (former, now) primary school and Bedol land were upsetting him again, and making him bark. Apparently, he’s not a fan. Just like his Momee…

Once this was finally dealt with, I went back into my room, feeling, “Well, Now I think I am ready to get to Loughborough…!!”. 

It had all been so fast, so exhausting, so overwhelming, that I immediately went into ShutDown Mode. It took a while and a Buddy to start getting me to even start talking again.

This had all started when I was barely getting to be Awake & before I had any coffee. My first coffee was at 12:55pm. After EVERYTHING, including my ShutDown, was done with. And… Well, You’ve seen the Isobars… 999mb.

I. Am. Just… Done. Completely & Utterly. Done. So, So, So Exhausted. So, So, So Very Drained. Mentally, Psychologically Done In.

But now… There is packing to be done. Things to sort out Properly to go away for a WEEK. Last time went away for a long time was back in March, for my birthday, in Caernarfon for 10 days. And we all know how well that went…

This is also NOT the Time Of Year for all this… This is the Anniversary of EVERYTHINGS This Time Of Year. Maybe different months and years, but between October & March is when EVERYTHINGS happened at some point in time. Like the Gods just Insist I Hate This Time Of Year!

  • October 31st 2013 — The Beginning of EVERYTHINGS
  • November 2013 — Having to Move House & Settle Down in Leyton
  • November 2013 — Suffered from Pneumonia – Had to still walk the dog and ended up having to go back to work… a 4 hour Round-Trip Away
  • December 2013 — Fibromyalgia is starting it’s campaign to take hold of my body for itself
  • March 2014 — Had to give up my Job at the Brompton Hospital from being desperately ill, just before my birthday
  • May 2014 — See Pain Clinic Consultant, he wants an MRI Scan 
  • June 2014 — MRI Scan
  • November 2014 — “Officially” Diagnosed with ASD
  • February 2015 — Finally got to see the Pain Clinic Consultant re MRI Scan of lower lumbar area (Nearly 9 months later!)
  • June 2015 — Finally get “Officially” diagnosed with Fibro, then… Nothing. No followup or help given.
  • November 2015 — Dumped by Boo; Dumped with my Parents back in North Wales, at Nain & Taid’s old house.
  • December 2017 — C*****g Bitch at Roslin breaks my brain & My Very Soul
  • December 2017 — The pain in my tummy and pelvis turns into the Ripping & Searing Pain of All Mortal Agony, ripping everything inside me to shreds & leaving me Screaming at the top of my lungs in White-Hot-Agony-of-all-Agonies
  • January 2018 — Emergency Admission to Hospital. YGC Diagnose not one, but TWO different Blood Poisoning inside me, as well as Multiple Other Infections, too (Mainly Urine & Bowel, others unidentifiable).
  • March 2018 — Finally Released from hospital – the day after my birthday. Had 37th Birthday in Hospital.
  • October 2018 — Pain Clinic finally comes through with Physio+Therapy Treatment option for me, with a date. But then, CHANGE the date – to January 2019!
  • January 2019 — Unable to cope anymore with this appt hanging over my head, just shortly after the Anniversary of that Bitch in Roslin – Had Nervous Breakdown in the end. Had desperately tried to get Mam to agree that I shouldn’t go… But it was too little too late when she finally did cancel it — AFTER I’d had said breakdown
  • October 2019 — Have been dissociative and derealising since January, and now it’s going Supernova because it’s That Time Of Year, Again…

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October 01, 2019 3:47 pm

Glan Dulyn | 11°C

I talked to Mam. A lot. When she really puts her “Momee Hat” on, she manages to completely disassemble things that completely baffle and “Bewilder” (her word; a very good word…) into perspective, in a way that is so proficient and clear, I am able to file it away or use it in my own… Analyses. 

This time… It was BPD – but ALSO… She answered the biggest head-fuck of my life: The BEWILDERMENT, TORMENT and UTTER & COMPLETE MIND-FUCK of just how I went from My Life In London to… Well, THIS

And it ALL started — NOT JUST THAT — with… ASD.

Or rather, the lack of willing support, understanding, help, kindness, patience, and Diagnosis of it. NO ONE KNEW. 

 

And from the beginning… Basically…

 

I Was Born To Die.

To Suffer… 

To Be Tormented…

To Fail.

I. Never. Stood. A. Single. Chance. In. Hell…

 

The lack of everything I ever needed for ASD was NOT THERE.

 

Instead, I became more and more terrified, confused, befuddled… AND TRAUMATISED > THAT TRAUMA CREATED BPD, in a child who became terrified of Abandonment, of the Emotions that Erupted because of it that SHE DIDN’T — COULDN’T!! — EVER UNDERSTAND, of the confusion that NEVER EVER MADE ANY SENSE… This list keeps going on, and on, and ON…

I. WAS. ALWAYS. DOOMED. TO. FAILIURE.

And everything spiralled from there.

No one was able to stop my Nightmare Crucible from happening when I was a child.

There was no one there to tell me to go to the Docs to seek help before Pneumonia started… or to stop me from doing what I did afterwards whilst I had it.

I had to leave Finsbury Park and the only person who could & would have done that… 

There was no one there to help me in Leyton when I got sicker & sicker… The NE London Foundation Trust was just as sick as I was

There was no one to help me stop the BPD from taking over, the sicker and sicker I got, or to keep EDI Online… Because NO ONE HAD A GODDAMNED CLUE ABOUT EITHER OF THEM…

And so… There we go. Here we are. Biggest Question Now: What to do with said information? Obviously, it’s a new Filter, for nearly pretty much Everything to be processed through.

Processing the Data will take time… That’s a lot of crunching, even for a Supercomputer(!). I’m not Quite Quantum… Yet…(!)

#resentment #uncomfortable #personalinsights #trauma #uncertainty #scared #confused #overwhelmed #sad #mam #disassociation #illness #selfawareness #cptsd #pain #aggitated #panic #terrified #anguish #miserable #helplessness #exhaustion #waitingfordoom #upset #crushingfeels #disturbed #mixedfeels #independence #asd #depression #ptsd #imprisonedfeels #mentalhealth #disability #stressed #anxiety #selfcare #memories #inspiring #despairing #alexithymia #aspie #hypervigilance #bpd #skittish #distressed #caredfor #paranoid #drained #fatigue #vibratingscared #grief #chaos

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September 30, 2019 4:18 pm

4 Glandulyn | 15°C





Living with ASD, Alexithymia, (C)PTSD, BPD, Depression…

Extracts on BPD CPTSD…

 

 

#alexithymia #asd #anxiety #cptsd #bpd #depression #ptsd #aggitated #anguish #aspie

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‘The NHS has been destroyed’: Boris Johnson confronted by father of sick child | Politics | The Guardian

Man accuses PM of visiting Whipps Cross hospital in London for press opportunity
— Read on www.theguardian.com/politics/2019/sep/18/nhs-destroyed-boris-johnson-father-sick-child-hospital-london

Whips Cross Hospital is indeed a derelict pile of complete rubbish… Services cut to the bone, An ancient Victorian set of buildings falling apart at the seams, waiting lists too long… Has been under Special Measures yet has just become worse…

Six Years age Now… This hospital screwed with my health & helped destroy my life… 4 months for a pain management clinic referral, 9 months wait for MRI *Results*… Further 4 months wait for Rheumatology referral… 5 minute consultation to be told had “one of the worst cases of #Fibromyalgia he had ever seen, especially on a young(ish) person… Then discharged me with no follow up, care or health plan. Just… Nothing. I was left to fend for myself.

18 months in total, start to finish, it took altogether for me & my tireless GP to get the Fibro Diagnosis Of… well, Anyone… Then, Without care I ended up so ill, I lost the use of my legs through disruptive nerve issues from Fibro & Hemiplegic Migraine.

With proper immediate diagnosis & care, this would NEVER HAVE HAPPENED… 😧😰😩🥺😢😡🤬🤯

So… Whipps Cross… I have no words as to how broken, downtrodden, buggered… this place actually is. I wish I could have given the **CEOs** of that death-trap hospital a piece of my mind… They’re the god-awful culpable ones…


Overcast Clouds, 18°C

It hurts… It hurts a lot… Isobars have plummeted now — and the worst part is that they haven’t stopped falling… 🥺😣😔☹️

Painsommia…

I woke up at 8am to take pills, to give them to Lolli (Sara), and now I can’t go back to sleep because it sodding hurts too much…

It’s overwhelming, makes me feel nauseated in the pits of my stomach. Nerves and skin burning… Breathing is… Wrong…

Knee joints and pelvis area  are screaming… Head feels like the insides are being ground into mince, then scrambled up again… Ears are starting feel swelled and in pain… Nose is really killing me…

 

Every joint and muscle is screaming… 

Once again, it’s gone appalling …

There is no peace here I can feel… 

Just abject Misery. Again. Of course…

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Painsomnia

 | 15°C

Painsomnia… Aptly-Named...

 

For days… weeks(?)… I’ve been unable to say words in writing. My head aches at the mere thought of making sense of my Feels enough to attach actual words to them… 

Dailyos haven’t been filled in (will have to do them retrospectively… Somehow… Using this log…). Even this Journey Journal hasn’t been used for anything much more than a LogBook. 

I’ve found this to be a Notably Reliable Indicator of Depression. Not the bad kind… No. The Really, Really, Badly Fucked Up Kind.


What’s been happening over the past few weeks, along with the God-Awful bitter hopelessness of recent times, is ensuring my brain is being cemented into the Wonderland of my Mind… And it seems I am, once again, being packed up and flung down that Rabbit Hole, ready to be destroyed and torn to pieces all over again. 

Chaos. Fatigue. Exhaustion. Grief. Confusion. The inability to process complicated Emotional Feels. Not enough time to process Complex Emotional Feels. It all just builds up and up and up, until I’m so completely and entirely overwhelmed…

I am done in… Distressed. Frustrated. Overwhelmed. Frightened. Anxious. Wound Up. Agitated. 

I fear sleeping again. I’m not even sure if I know why…

I am am in such a physical mess… And not just the Fibro. Not being able to wash my body, or my hair, or engage in any proper self-care at all is heartbreaking. But it also has an actual knock-on affect in so many other ways, too. You cannwot get properly cleaned with wet wipes. You don’t get properly washed to prevent catheter infections. Taking all your clothes off properly means that heat rash, allergens, creams and oils, groom and backside areas get properly washed, rinsed and sluiced. 

I need to get some kind of grip on it… Quickly. Before it become next to impossible to wrangle The Beast back without an all-out war…

#anxiety #anguish #asd #aggitatedPowered by Journey Diary.


Just… Isobar Nightmares Again..

 | 15°C

More Storms…

More Miserables…

More Skydiving Isobars...

 

This is what I have to look forward to Friday through Saturday, now…😟🤯☹️😖😣😥😢

 

… To make it worse, all of Friday is in the 900s too…

#weather #pain #isobars #anxietyPowered by Journey Diary.


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