Category Archives: Resentment

First Consequences of Cancelled Surgery…

… And this is only the beginning of them…


I’m SO exhausted and in So Much Fucking Pain, that I am Severely Blacking Out again — as I have been all day… 

I am looking at having to suffer through a Third Sleepless Night In A Row… And I just can’t get my head around it. This obviously shouldn’t be happening — this should have already been All Over With By Now

The Utterly, Utterly brain-exploding Blinding White Agony has been tormenting me all day… Like last night. And yesterday. And the night before that. And the day before that…

Immensely Agonising, Unrelenting, Cruel, Exhsusting… These Spasms have kept me awake for two entire nights, consecutively…  Never ending. Needing to sit through immensely intense, unbearable, bladder spasms.

Screaming and writhing for even more days after that stupid thing should have been removed and Replaced… 

My head is Spinning… I literally cannot see straight   — my eyesight wavers and twitches rapidly, blanks out, cannot focus… And all I want to do is to go to Sleep… 

I have been Blacking Out All Goddamned Day… It’s been horrible. So stressful. So Anxiety-Inducing… I am Vibrating from the Physical & Emotional Stress — and unable do to much of anything except have to endure the Agony Ripping through my body, every time  a  Spasm explodes inside…

My lower back is in Horrendous Pain; most of this is stemming from the fact I need to go Make… And. I. Just. Cannot. Go…!!!! Even trying, it could only just come right out wo…

I can’t lie down — or even sit up — in bed, because of the Spasms… One wrong breath and the damned Catheter will Shove itself the fuck out.  

Getting annihilated by wanting to do something good for myself…. How utterly cruel can you get…?

As long as I am doing something, something that involves some physical challenges involving some effortlike building a squares cupboard, and having to rearrange your bedroom to re-rig your computer — then I am playing with Fire. Brilliant-White Mind-Exploding Agonising was Fire.

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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.

🥺😢🥺🤬😖


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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‘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…


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OTT TMI Overload & In The Black Hole of Pending Meltdowns…

Costa | 23°C

In Costa again… Oh, Frikkin Gods.. What a Morning… 😩😖🤯😣😱☹️ ‼️

 

I have been through the ringer… Drained of everything and more that I have, and have ever had, inside… I’ve been pushed beyond what I am really capable of coping with, dealing with, managing…

S pointed out that, Regardless, I am still managing it, because I am not actually having a Meltdown.

That’s… fair. I’m not. But it’s WW3 inside me and it’s suffocating me… 😖😣 … crushing me…


It started with sleeping in. Until nearly 1pm…! 🤬😱🤯🥺

After the last few days, and some careful planning of the day, that was so entirely unacceptable!! 🥺😖😖😖 Dear Gods, we were supposed to be in the shopping centre by then!

It destroyed my insides… Wrecked them apart and tore them, like an IED went off inside… This is was the Dragon of Disappointment going bananas inside me, and burning everything that I had inside. I was done

Somehow, S soothed me enough to help me wrap some kind of shell around the devastation, and allow me to at least try and function. Slowly, I got dressed and even managed a little makeup (even if it wasn’t exactly… great).`


However, it was late when we got out. Around 2:30pm. It was so hard for me to process this. My reasoning was, in the main, that the extra sleep — for me, at least, — was utterly pointless, and a complete waste of time.

To my horror, I had inadvertently squandered precious time outside, to sticking to a good plan for a nice and relaxing day outside — and instead spent extra hours in bed sleeping.

I have Fibromyalgia, and the symptoms that are the basic foundation of Chronic Fatigue — there is no way in hell that any of my sleep was going to be helpful, restful, recuperating, or healing. So, any “lie in” was a complete and utter waste of time.


This bugs me so much… I try to work so hard to master this damned curse inflicted upon my mind and body… and yet, still, it manages to somehow get the better of me, when I am at my weakest, to wreck havoc with my mind.

The Dragon of Disappointment is mercilessFear and Cold Terror turns everything white and frozenPanic and Horror make everything explode like devastating fireworks in an oil rig — leaving nothing in its wake but ashes and embers and ruins

It all makes my Aspic/Autie brain hurt. It goes into hyperdrive, and then destroys itself completely, and then everything else along with it.

It turns it into a blabbering mess; a pile of burned ash, slushed into a soggy mess in the torrential downpour of the storms that harm it so greatly… Until there is nothing left, and I am naught but a shell of emptiness and a robot in Shutdown.

It might be marginally better, and less destructive… but only on the outside and to other peopleBut it is still a horrific and destructive and Traumatic thing to endure, nevertheless.

It leaves its mark. It leaves it deeply — because it is not flung out into the Nether, like things are in a Meltdown. The Meltdown blows its top, and violently expels everything that you find within it that has hurt and harmed it so much, it has done this.

A Shutdown, however, Implodes, scarring everything inside, blowing everything on the inside, causing the devastation there instead. Arguably, to me and my mental health, it is worse. And even worse than that… Nobody can see it


 

I’ve done nothing to deserve all of this.

I’ve bent over backwards, and all ways, to try and be good, try and contain myself under extremely stressful and frightening circumstances.

And yet… More just keeps coming. 😖😖😖

I think I am aware now that it will probably Never End… But this Warrior is tired… Needs a little R&R from this… war of ill-health — of a broken body, a broken mind, and a broken spirit…

 

#scared #helplessness #angry #blackburn #irritated #premierinn #miserable #imprisonedfeels #furious #overwhelmed #trauma #alexithymia #dragondisappointment #exasperation #despairing #anxiety #panic #drowningfeels #fatigue #asd #confused #resentment #aggitated #dismal #caredfor #frustration #stressed #sara #exhaustion #upset #fibromyalgia #agony

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Catheter Chaos • Boots Discrimination Discomfort…

Temp | 11°C

The Catheter just came out again…

It lasted only 6 Days, this time… 😳😔☹️

It’s so annoying, having to undo all the straps and sort through all the tubing, and whatnots, when disposing of a shoved-out Catheter.

Then there’s the Dragon of Disappointment, and all the other damn “emotions” and crushing, suffocating “feels” that go with it.

Certainly makes me more determined to get a good meeting out of the Suprapubic Pre-Op Hospital Appt. next week

Catheter tubing, leg bag & Night Bag
The Reality of the Indwelling Catheter

I really feel… horrible… Betrayed, almost, by the damned thing. Strange, but true!I thought I could at least make it through another month, but apparently not. My stomach is all knotted… I feel something… crushing, twisting, fiery, scratchy, bitter… upset…😢

I am not in the right space for this to happen along with everything else… 😖😖😖

I was miserable enough without this…


It’s been spasming all day. No doubt due to all the stress I’ve been under. Or… maybe more like I put me under… 🤨🤔… 😒😒😒

Between fearing the arduous and overwhelmed task of flipping the mattress, and the issues I’m having, now I’m arguing with Boots about whether or not people in wheelchairs should be treated better than naughty puppies, I’ve been in a lot of depressive misery today.

Boots made me feel small, pointless, miserable, undignified, insulted, belittled… Vulnerable… I’ve been in scared and sorrowful misery all day.

But then I got some balls and got going with sorting out the mattress, because there was No Way I was sounding another night like I had been, in that much pain. I’d had enough painful nights and nightmares, and last night was the final straw.


But I guess it was too little, too late, and the stress of all of it was too much…?

Either way… The bastard thing is out again. 😒😒😒😒😒😒

Catheter tubing & Night Bag
This is what it should be doing… As opposed to shoving itself out of me…🤨😒

#upset #frustration #fatigue #exhaustion #fibroplegia #dragondisappointment #irritated #sad #pain #dignity #suffocatingfeels #catheter #fibromyalgia #anxiety #aspie #healthcare #alexithymia #stressed #dismal #depression #resentment #helplessness #disabilityPowered by Journey Diary.