Category Archives: Fibroplegia

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…

Powered by Journey Diary.

‘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.


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.


Surviving Trauma with ASD

My Story… My Life…

The Second Time My World Imploded into PTSD…

When I was 34, literally my entire world fell apart. I was so ill I couldn’t move and was in 24/7 agony from Fibromyalgia, and after 2 years of this illness and 10 years together, my partner snapped and she sent me home to live with my parents. Actually, she asked them to come and get me.

Just one random day. She stopped texting me. Then vanished. Never came home. I freaked the crap out. Turns out she went to her mums house. I had to track her down. And her step dad was a bitch to me on the phone.

Then she told me everything was done, we were done, and she wasn’t coming back until, I was packed up and ready to go.

My. World. Died. And. Ended. In. That. Moment.

She took the last remnants of things I had left — and I had already lost the career I loved and the data migration project I was just about to start. And destroyed them. Just one random day. Just like that.

It was nearly 4 years ago, this November it will be.

It was utterly sheer hell. I didn’t know if or how I was ever going to survive. I was delirious with agony and pain, screaming and blacking out from it every day, my parents were yelling at me, screaming at me, doing other bad things at me. I had several meltdowns per day. Everyday. The worst ever kinds. I used to come round to disaster and injuries I had no idea about constantly. It was horrendous…

It went on for years… I tried to OD twice. Was in an ambulance for it. It was a waking nightmare of exceptional proportions.

I don’t know how or why I am still here… But I am. And, frankly, I’m proud of myself for that.

And I survived long enough to get a very special person back in my life. And it’s in a better way this time too …. 🤔

So… I get it. I truly undoubtedly do.

And, also, that is how I know that others can survive this. Because I have, I do. We do. Cos we’re strong and kick ass and have to take far more than anyone could ever frikkin imagine. All. Day. Every. Day.

💖💖💖💖💖💖💖💖💖💖💖💖
💝💝💝💝💝💝💝💝💝💝💝💝💝


🏴󠁧󠁢󠁷󠁬󠁳󠁿 FOR WALES — COMMUNITY MENTAL HEALTH HELPLINE 🏴󠁧󠁢󠁷󠁬󠁳󠁿


C.A.L.L. FOR Wales

FREEPHONE: 0800 132 737

TEXT: HELP & Your Question To: 81066

VISIT: www.callhelpline.org.uk



C.A.L.L. FOR Wales
🏴󠁧󠁢󠁷󠁬󠁳󠁿 Community Advice & Listening Line 🏴󠁧󠁢󠁷󠁬󠁳󠁿

🏴󠁧󠁢󠁷󠁬󠁳󠁿 C.A.L.L. I GYMRU — Yn Gymraeg 🏴󠁧󠁢󠁷󠁬󠁳󠁿
(In Welsh)

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


JUNE 2019 — Daily Mood Chart • Disturbingly Not Good… 😔

I use Dailyo diary and mood tracking app for this:

https://www.daylio.net

This just about says it all… 😞😖😢

When you are going through it, it’s bad enough… But to see it like this… You really do get to see “in black and white” as it were…

It was terrible to go through. It was a Hellish Month! 😰😖 … I hope that this next month will be at least somewhat better.

I’m not holding my breath or anything, though… 🥺😞