Category Archives: trauma

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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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…


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(In Welsh)

💜💝… With All The Love & Care That There Can Be… 💝💜


July 07, 2019 2:36 am

North Wales | 11°C

 

I’ve just seen the date at the top of this iPad a moment ago…

It’s 7/7 — the day things changed forever…

7th July 2015

14 Years Ago Today

And it will never “Just”… “Grow Old”… We were there. In the middle of it. SN was outside a few hundred yards away from That Freaking, Frikkin Bus… Maybe not half an hour after it blew itself up…

We watched it all as it unfurled itself on the news. Heard those Ambulances’ sirens dull on the TV as they raced further away from the scene… Only to get louder and louder outside my window on the way to the Trauma Centre in the Royal Free, Hampstead. It made it a chilling reality

The worst thing, however, was the fact that SN was inadvertently out there when the Tavistock Square Busexploded. The bomb had not long gone off, maybe only an hour or even half an hour. Entirely naïve of the situation, she had gone to meet her parents coming in to Euston from North Wales to see her graduation recital at Arts Ed.

If she had gone sooner, as she says, she decided to go take the mail upstairs to our apartment (Oakley Square, Mornington Crescent, Camden)  instead of leaving right away, she might have been there when the bomb exploded… Heard It… Saw It… Hopefully nowhere near the circumference of the shrapnel trajectory…

As she also pointed out, we would walk past there to get to town. If she hadn’t been having her Recital that day, who knows where we would have been. There’s a place close by we liked to have breakfast in, I’m certain. We could have been going there, done that… It all doesn’t bear to be thinking about… 😖😢😞

But SN was in Euston a little later, thank goodness… She says there was an air of something … wrong… there… But no clear indications — perhaps a fire down in the Tube line? That it wasn’t until I called her, she didn’t know anything had happened.

For me, it had been a very long nightmareto get hold of her. Phone networks were already being jammed (the cell phone networks in 2005 were still really in their infancy stage compared to now…), and I could not get hold of her. For ages… Minutes and Minutes… Which is forever when your best friend might be in serious danger…

I had known nothing was wrong until C (my sister) emailed me to ask how I was, if I was OK. I obviously told her I was fine and at home. And asked why she was asking. She told me to turn on the TV. Any. Channel

With that, my blood went cold and turned on the BBC… The first thing I saw was the fully exploded, destroyed and ripped out backend of the No. 30 Bus in… Tavistock SquareWhich was… Right. By. Euston. Station…. 😱😟😟😟😣😣😣😣😣😣🤯🤯🤯🤯🤯🤯😖😖😖😖😖😖

So, I flipped and started ringing her frantically, until I finally got an answer. And I nearly wept outright with overwhelming internal relief.

She came home — walking bravely despite all the horrors going on…

Her parents had been Evacuated back home from Watford Junction Station anyhow, and all Central London was in a serious Lockdown.

From then on… Well… It just go worse and worse. We were glued to the TV to get as much information as possible about it all. It. Was . Fucking. Terrifying

SN got quite serious PTSD from it… After all, she was thereThat is one seriously Majorheadfuck…

She seems to know how to deal with it well… She has a really, really powerful internal Strength of Will, and bears such a burden with dignity and Strength, despite the Fear and heartbreaking anxiety anything that triggers or reminds her of it… She still carries it with great Power and Grace, in my eyes. 

Not many people understand this. Her parents were kinda there — after all, they themselves were evacuated from London on the train, not being able to get hold of SN and know if she was OK. Not sure if they ever did grasp the reality she was near enough to have been kinda involved in it, too, if she’d have gone any earlier, though….

So, every 7/7 we talk about it. Discuss it. Get our Trauma and Anxieties out to someone who can commiserate and empathise truly. We went through that together. We still go through it together.

The date brings things to the fore too easily, the memories still vivid despite pretty much an entire Decade-and-a-Half having come and gone hence…

It. Just. Hurts…

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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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April 2019 — Dailyo Mood Chart Stats

I use this great diary & mood-tracking app… It was quite a good idea, actually, to help me with my ASD 🤔

https://www.daylio.net

Well, I’d probably say the graph says it all, how my last month went. Seeing it like this, though, is a bit of an eye opener. It’s really no wonder I am a mess, of this kind of emotional chaos is what I am living with… I think this was what I wanted and expected out of using Dailyo — but it’s rather different when it ’s actually there, right in front of you.


The only shame is you can’t sync it through different devices… that part is annoying, but the rest of if it is pretty great, actually… 🤔🤨😎


It’s disturbing how all-over-the-place the peaks are. It’s there, in front of you, undeniable. It wasn’t OK. It was Chaos, Brutal, Upsetting, Difficult, Emotionally Unstable… Destructively Unstable… I realise now how strong, stubborn, I’ve had to be, in the wake of that chaos… The reason I am so, so very Exhausted. Run-Down. Severely Hyper-Vigilant & Easily Startled. Anxious As Hell 24/7.

The last thing someone who craves… Needs… emotional stability, is this… I am ASD, with (probable) Alexithalmya. What I need is is for that to be solid in Green.

Green means Neutral. Not Happy. Not Sad. Not Scared. Not Angry. Not Anxious. Neutral. What I’m seeing is, quite frankly, the exact bloody Opposite!


I am aware there is no ideal, per-se… However, it cannot be too much to ask that it remain at least somewhat in the Green/Neutral area a little more than twice in one month…?!