Category Archives: grief

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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Changes…

 | 14°C |

Brain so traumatised flashbacks are so very easy to trigger… So many things inside my head, burning it, terrorising it.

Living with horrors, with so much actual real physical agony pain, the agony of emotions & Feels, I can’t help the Symptoms of Trauma coming back to haunt me… 😢😣😔

The  chaos, the “Landfill”, the lack of control, the despairing desperation of just things thrown on top of each other – simply because pain makes it too unbearable to sort it out or put things away properly… It’s everything I was… I don’t really think I am quite that anymore, and coming slowly out of it.

But still, things are yet to be available to me — like being able to move completely freely (within the confines that I have), to be able to manage to do things without paying in pain afterwards, to think clearly (for all “EDI” being here, powering “her” takes extreme effort and energy I quite often do not have at all, and when she whirrs up & powers on, to use herself automatically, the exhaustion and drained emptiness inside is more than Real), to physically do what are still quite demanding things… Despite being stronger, despite being without that level of pain, it’s still difficult. Draining. Demoralising. Downright Confusing.

All these things come with Feels I do not like, and certainly do not understand. None of this makes sense to me — and at least what I have found out recently has answered a lot of questions I had about this, so at least now, it’s a lot less scary for this to actually happen. If Still Not Just As Confusing

When you have Alexithymia and ASD, the strong and confusing Feels that come from having absolutely terrifying conditions run by high-rate emotions, is downright goddamned Terrifying

CPTSD triggers traumatic emotions, responses, reminders, Flashbacks, Fears, … All things that to someone who barely knows Feels even exist, is utterly, utterly bewildering, terrifying… & Out of my Depth, and WAY out of my Control

BPD (Borderline Personality Disorder)… All the things I read in what that makes your brain do, is right there in me… And without knowing all of that — it’s been utterly, completely, mind-blowingly off-the-charts Confusing & White-Hot Terrifying

Now I know there are these… Gaps… inside me & my Brain, I realise that maybe, like Lolli keeping saying, I never will truly understand them… But at least now I know where the are coming from, which is a goddamned BIG DEAL. Like an Epiphany. Boo also said, when I showed her BPD, “Did you write this…?”, because it described everything that nothing else seemed to quite cover — the extent of my behaviour didn’t correlate with what was already “normal” for ASD.

Like the Alexithymia — ASD people have difficulty with Feels, but they figure it out. I never have, and Now I know that I never will. It’s a relief to know. It’s a relief to know about the others, too. There might be no changing their… “Quirks”However, there are plenty of ways to balance them out and manage them. Understand them.

It makes a Difference.

It makes All the Sodding Difference In The World

It’s just that… Right Now… I Just Have No Idea Where To Even Start With It

#aggitated #anxiety #dismal #confused #frustration #disturbed #asd #alexithymia #upset #bpd #distressed #trauma

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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…


CBT for an Aspie…

I am in a fugue… A Haze… A Nightmarish Dream. It does not ever seem to get better… But – I do not think I can say anymore that I am doing everything I can about it.

Meaning…? I was thinking yesterday about why the past was always so present, why my mind seemed always to be there – when I had, in fact, spent a lot of time and effort getting “into” being HERE and embracing it.

But.. Then I realised that was Before the Ococcusses. It dawned on me that I was still tormented by it, disturbed, distraught… Traumatised. The Social Worker & OT Bitches, The Rosalind C**t, Then Frikin Screaming and Screaming and Screaming all day, everyday for goddamned WEEKS, before finally being dragged into hospital, only to find out I had not one but TWO deadly bacterial blood infections that could have killed me already.

And then… The Aftermath. I lost all everything entirely from the sternum down and became entirely reliant on my hands and arms in a way I hadn’t had to be before.

My shower at home was so unsuitable for me now, it was beyond dangerous for me to be in it. I spent nearly two years in goddamned Agony because I couldn’t have a shower to ease my Fibro, essentially ensuring that I was Room-bound and Housebound from then on.

I did nothing. Spent an absolute FORTUNE on hotels rooms at the Premier Inn & Travelodge to try and have sporadic showers, when the pain became FAR too much to bear. In the end requiring an extra 50% dose of Morphine in my meds 4x Per Day, over 2 doses, effectively having to take Morphine 8 times a bloody day for AGES (that stuff is disgusting, and it was entirely unnecessary). Then, the pain from the spasms and rock-hard spasmed muscles all over just became more than too much, bad enough that not even the Morphine could mask it much any longer. It was just unbearable, and moving became optional… and occasionally so did even Breathing

To say this was all beyond distressing, over a very long period of time, after having been discharged from hospital after a very close call, would be the Understatement of the Year. I had full-blown PTSD about this, As Well. As well as from being left undiagnosed and untreated, as well as from losing my job and my career, as well as being thrown here, from London, on Zero Notice. On top of what I’d had to endure as a child.

So… Now… I am left in this… Fucked Up Limbo of Hell. Me being here, stumbling over where I have somehow ended up, with all its confusing and terrifying turmoil… And on the other side… There’s my Mind, all the way in the past of 6 years ago, in Leyton, before this all happened. When I could still walk, had my career, my life, my home, my London…

I tried being Present & Accepting before… Then the Occocuses turned up and tsunami-ed absolutely everything away. Leaving nothing behind. Nothing…

I am starting all over again. But I cannot deal with that – that is far too much to deal with. I do not WANT to look around me and Really See what is going on here. I do Not Want to be like this, in this way – so Helpless Vulnerable


And Yet, Ironically…

Doing Just That… Would actually turn the tables on so much of that. To be Present, In Control, Pro-Active, Planning, Calculating, Being Within My Own Power & My Own Mind Palace… Wouldn’t that be an efficient and acceptable Patch Fix on what cannot otherwise be changed?

Core Code may be set in stone… but why put up with the severe glitches of the old & worn foundation, when a Patch Fix can be applied to compensate & help the program do what you need it to do?

You Just Would… Wouldn’t You…? 

This is… New Thinking. Just came into my head now. As I was writing. But… It makes more sense, doesn’t it? See, this is why I Just Hate Bloody “Feelings”. Emotions are such a waste of bloody time! They just confuse everything and get in the way of common logic. 

~ No wonder the NTs screw everything up all of the time…! ~ 

I am here. I have to be here. I have to try harder & Not Be Afraid of All Of This that’s going on.

Change is horrendous & frightening. Disaster… Well, that is mind-blowingly horrifying & Terrorising.

As if… The Server was hijacked and destroyed. Now… the arduous task of reclaiming and re-purposing it for something else. For more. For something that has to be done & rebuilt from scratch. But… It’s a Server. It’s hard work, grafting, with hard thinking & communication within the brain to face and solve difficult or troubling issues — Freezes. Crashes. Not Booting, or Rebooting…

But slowly, yet most assuredly, it’s rebuilt once again, then the systems and software are installed, then the data it holds is slowly put in. And eventually, the data held starts talking back, all of it fully installed and able to do whatever you tell it to do.

This is… Troubleshooting…! When did **I** not know how to sort out Troubleshooting…?!!??

I was the QA Queen – it was my job, my soul, to be the best at Troubleshooting. My Work, My Life, I saw a problem, and I went head on at it to fix it. Right now… I do not know where that person is…

But she’s seriously letting me down here at the moment.

#anguish #dentist #grief #exhaustion #fibroplegia #devestated #dragondisappointment #helplessness #drowningfeels #despairing #aggitated #frustration #concerned #crushingfeels #dismal #fatigue #distressed #drained #feels #fibromyalgia #disaster #asd #anxietyPowered by Journey Diary.


The Shower Trauma

 | 14°C |

Eating Genius (GF) Blueberry muffin, pissed at the phones my poor best friend S currently has to put up with, wondering how long it’s going to take me to lose my rag with this UMIDIGI F1 that’s been somehow compromised… 

I had my shower. My body and mind feels better. It was difficult — I ended up in a rather bad sugar crash, and had to eat Toast, DF Cookies & Jacob’s Crackers. In the shower. It was Not Nice… 😖😞

When I got upstairs, I ended up fretting and being broken by the thought – the knowledge – that this didn’t have to have been like this for so goddamned long.

Afterwards, I also had to endure the inevitable subsequent Adrenaline push, making me quiver and shake as badly as the Sugar Low, Vexed & Anxiously Disgruntled by the time I got out and went upstairs.

Did you know that when I told Sophie that the Twat Fuckfaceheads that came to see me (Johanna & Donna – rat bastard C***s) had told me that if I decided I wanted to go on the list for a place of my own, that I could not have this place done up to be functional, she was astounded and told me it was UTTER BOLLOCKS…!! UTTER FUCKING BOLLOCKS!!

I hadn’t HAD to suffer! I hadn’t HAD to go through such Agony any Trauma as I had… and still had to.That this could all have been Avoided by someone who cared about taking pity on me and allowing me to have the shower room that I desperately needed so frikkin badly

I DIDN’T HAVE TO GO THROUGH ANY OF THIS AT ALL!!!!!!!

And what could I have DONE with access like this to a shower that would have cut my pain in HALF??!! The Escalation could have been STOPPED. Such ongoing TRAUMA & AGONY & HATE AVOIDED?????

HAVE I NOT BEEN THROUGH ENOUGH????? DID I REALLY NEED TO GO THROUGH EVEN MORE?????

NO MERCY!!!

NONE… AT. ALL.

I cried. Just a little bit. But. I. Cried. I never, ever cry (unless it’s Meltdown-Related). I do not cry when I am sad. This, though… This so Disgusted Me, Moved Me, Disturbed Me… I didn’t know what else my body could possibly do, when it did this…

… Inside, I am just Traumatised All Over Again. I honestly have another wave of PTSD about all of this, on top of, and Separate, from the rest. It makes me feel… Terror. Horror. Makes me want to physically vomit. The Fear. The Horror. The Sickening Suffering… 

I am DevastatedWrecked. Frustrated. Horrified. Traumatised. Destroyed. I could not describe it any more, or any better. These things are not easy to process in any way, shape, or form. 

Does anyone else feel sick now, too…?? 

Nearly Two Years – Two Frikkin Goddamned Years – Has Been Lost. I was 36 when the Occocuses Started. And I’m 38 1/2 when the Shower is Fitted. 

#dignity #agony #cellphones #crushingfeels #techspecs #disability #overwhelmed #drowningfeels #alexithymia #devestated #drained #dragondisappointment #food #occutherpist #miserable #phonetech #scared #tech #asd #headache #anxiety #exhaustion #anguish #paraesthesia #ptsd #eating #accessiblebathroom #confused #aggitated #ora #stressed #fatigue #despairing #hair #fibromyalgia #shower #angry #grief #painsomnia #phones #distressed #nhsdirect #showerchair #helplessnessPowered by Journey Diary.


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