Category Archives: asd

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.

🥺😢🥺🤬😖


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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