Category Archives: Fibromyalgia

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.

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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.


Overcast Clouds, 18°C

It hurts… It hurts a lot… Isobars have plummeted now — and the worst part is that they haven’t stopped falling… 🥺😣😔☹️

Painsommia…

I woke up at 8am to take pills, to give them to Lolli (Sara), and now I can’t go back to sleep because it sodding hurts too much…

It’s overwhelming, makes me feel nauseated in the pits of my stomach. Nerves and skin burning… Breathing is… Wrong…

Knee joints and pelvis area  are screaming… Head feels like the insides are being ground into mince, then scrambled up again… Ears are starting feel swelled and in pain… Nose is really killing me…

 

Every joint and muscle is screaming… 

Once again, it’s gone appalling …

There is no peace here I can feel… 

Just abject Misery. Again. Of course…

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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.

💖💖💖💖💖💖💖💖💖💖💖💖
💝💝💝💝💝💝💝💝💝💝💝💝💝


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C.A.L.L. FOR Wales

FREEPHONE: 0800 132 737

TEXT: HELP & Your Question To: 81066

VISIT: www.callhelpline.org.uk



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(In Welsh)

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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… 🥺😞