Category Archives: dismal

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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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.


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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A Futile Fibro Flare-Up Day…

Temp| 8°C

Still can’t think beyond the pain. My brain is zoned out.

I’m in no shape of, or for, anything.

Done naught but a few words in Daylio and Jouney Journal, then blindly and mindlessly poking around the internet a little.

Somehow, it’s now 5:30pm. I have no idea how that could have happened. I wanted extra meds to help play Skyrim. Guess that didn’t work out.

It’s horrible outside. Cold, rainy, high Humidity. The isobars are decent-ish at 1016mb. I’m so cold… But I can’t move, and in too much pain to do anything about it… 😣🤕🤨🥺


There are a few emails on my system now that I haven’t read. Refused to read. There’s 2 about the Boots thing, 1 about the Ubisoft problem with Assassin’s CreedUnity (the downloads run at 3mb/s & then the game won’t load anyway), and 1 from Sophie the OT regarding people coming here to install my shower.

I’m too scared to read them. Or, more specifically, I’m way, way, way far too way into OTT & TMI to cope with facing them or processing them, let along answering them…😟😣😢

I don’t know where the “Me” who used to jump at all correspondence, had Zero outstanding emails in her inbox, is avoiding messages and has nearly 7,000 “unread” emails in her inbox 🤯😫😟… 💔

… I could really do with her right now… 



I’m in 9.95 Pain… I can’t think past it, or of anything else, and my mind is blanking to try and deal with it…

  • I’ve been rushing around checking into, and booking, Premier Inns…
  • Mentally preparing for the crapload of Appointments we have to deal with and somehow manage through in May, including 2 big hospital appointments far enough away to require overnight accommodation…
  • I’ve had to deal with the last minute Car Tax thing and go out to do it, causing this latest flare up of agony (because I don’t have a shower)…
  • My glasses got snapped in half, and I had to circumvent my immense panic and Dragon of Disappointment long enough to get new ones.
  • I’ve had a good couple of mini-ish Meltdowns caused by other people…
  • My Catheter came out after only 6 days, and at 10:22pm, of all times… Late at night is *never* good; at least the nurses are great 👍🏻 🙂🤕
  • I’m even more exhausted because my mattress was being mean to me, and causing several nights of extreme pain and nightmares.
  • I flipped the big Hypnos mattress with Dad, and had to empty and redo the bed with Sara.

 


There’s been too much stuff, way, way, way too fast. Too much pain. Too much chaos. Too much… everything-too-much-on-top-of-everything-else.


 

NB: I think the new Food Plan is going to have to go in the bin, for today. There’s no way I am eating between 6pm and 7pm when I am like this. I’ll need at least 6:30pm meds to have kicked in, as well as an extra mini-dose of Oramorph, to manage to eat anything.

Before 8pm, food has no  chance of happening. 😖🤕😣😔

 

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Catheter Chaos • Boots Discrimination Discomfort…

Temp | 11°C

The Catheter just came out again…

It lasted only 6 Days, this time… 😳😔☹️

It’s so annoying, having to undo all the straps and sort through all the tubing, and whatnots, when disposing of a shoved-out Catheter.

Then there’s the Dragon of Disappointment, and all the other damn “emotions” and crushing, suffocating “feels” that go with it.

Certainly makes me more determined to get a good meeting out of the Suprapubic Pre-Op Hospital Appt. next week

Catheter tubing, leg bag & Night Bag
The Reality of the Indwelling Catheter

I really feel… horrible… Betrayed, almost, by the damned thing. Strange, but true!I thought I could at least make it through another month, but apparently not. My stomach is all knotted… I feel something… crushing, twisting, fiery, scratchy, bitter… upset…😢

I am not in the right space for this to happen along with everything else… 😖😖😖

I was miserable enough without this…


It’s been spasming all day. No doubt due to all the stress I’ve been under. Or… maybe more like I put me under… 🤨🤔… 😒😒😒

Between fearing the arduous and overwhelmed task of flipping the mattress, and the issues I’m having, now I’m arguing with Boots about whether or not people in wheelchairs should be treated better than naughty puppies, I’ve been in a lot of depressive misery today.

Boots made me feel small, pointless, miserable, undignified, insulted, belittled… Vulnerable… I’ve been in scared and sorrowful misery all day.

But then I got some balls and got going with sorting out the mattress, because there was No Way I was sounding another night like I had been, in that much pain. I’d had enough painful nights and nightmares, and last night was the final straw.


But I guess it was too little, too late, and the stress of all of it was too much…?

Either way… The bastard thing is out again. 😒😒😒😒😒😒

Catheter tubing & Night Bag
This is what it should be doing… As opposed to shoving itself out of me…🤨😒

#upset #frustration #fatigue #exhaustion #fibroplegia #dragondisappointment #irritated #sad #pain #dignity #suffocatingfeels #catheter #fibromyalgia #anxiety #aspie #healthcare #alexithymia #stressed #dismal #depression #resentment #helplessness #disabilityPowered by Journey Diary.


Storm Hannah… Storm Horrible…

Temp: 5°C

Well, Storm Hannah has well-and-truly landed here… My entire body feels like it’s being crushed and outside the wind has been playing up something terrible…

Oh, the lovely Horrible Hannah

😖😩🌧🌧🌧💧💦☔️☔️☔️💨💨💨🌬🌬🌬🌊🌊🌊🤨😒
FECC7D51-E69E-4FFE-8003-338AAC3ABB1A

I truly am in a boatload of pain. Now, between the big storm and the bed that was supposed to help my back but is now hurting it, I’m not even really functional. And my fingers are on another planet of horrible, with all kinds of Paraesthesia running rampant in them. Numbed. Achey. “Buzzy”. Severe Paraesthesia. Difficult-to-Impossible to move.

They can’t even type on the iPad screen keyboard properly, for here. Not just through function, but also because the electrical stimulation in the fingertips is what actually makes a touch-screen touchable. And when fingers are numbed they have a hell of a lot less of it, to make it work. 🙄


Today is clearly as frikked up as yesterday, and I don’t think anything is going to be right with this day, either.

Yesterday was all planned out… Until something went snap. We were going to flip the mattress, change the bedding, and make the bed not try to kill me with pain. I had a huge bag of beanbag beans come specifically for that day, so I could sort out the giant beanbag, and beanbag pouffe, to go with the nice, fixed-up bed.

I even had a Loot Crate box come. Although… I’m mad at them right now, for losing one of my boxes, then being an annoying bitch about it, going around and around, trying to wheedle out of any responsibility for it. I also asked to skip this current month’s crate, but they sent it anyway, probably because I bought a 3-month “subscription” from them.

So, the “skipped” one received is currently shoved in a far corner of the room, because I never really wanted one with a bunch of IPs that I’ve not even played, let alone a fan of, in the first place. And, to make it worse, the box is diddy.


Today is already going the same way. So much Pain. Cold. Storm Horrible outside. Back, Spine (Skull To Sacrem), Fingers, Hands, Head, and Left Arm, all hurting and aching and being horrible a lot. My left arm being in such pain is different, and a bit of a Big Deal, as it does a lot of things… and I can barely lift a coffee cup with it. Not Good

And on top of all that, Dad is out in the storm (with the dogs, if course…), rushing around trying to get emergency Tramadol for me from the Out of Hours system, because Mam accidentally ran out, and only realised last night that there was only enough for this morning in her box.

It was Friday night, so OOH was the only place to turn to.

Thankfully, they ponied up a prescription that could be picked up this morning, so after waking me at 10:30am, Dad left to go pick it up from the Hospital and take it to Boot’s to fill it. All ready in time for next Meds at 1:00pm.

Last weekend, it was my face. This weekend, it’s the Tramadol. I wonder what we’ll bug OOH for next weekend… 🤨😒😒😒

#medication #isobars #anxiety #dismal #weird #exhaustion #miserable #fatigue #weather #storms #healthcare #sad #exasperation #upset #outofhours #fibromyalgia #frustration

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