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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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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… 🥺😞


TMI

| 9°C |

Overwhelmed. TMI’d up to the hilt. My Mind has been blown to pieces… and then those pieces have been blown up too.

I can’t even… You know, I am buzzing on the inside… I mean literally, like every cell has its own TENS machine or Thumper Wand.

Too much everything. There’s no time to think. No time to wind down. There’s no time to Sleep – and they come with Nightmares anyways.

I’m blacking out – because All of This is just Too Damned Much. I am dying inside. I don’t want to know about any of this. The Pain is Ridiculous. The Emotional Turmoil is Overwhelming and Pathetic.

I need Space. Headspace. Peace – from the Chaos, the noise, the constant haranguing. Something always has to be done. Or noted. Or talked about. There’s always a Ping. There is always someone talking. Then there’s people walking in and out of my room, as they please, talking about stuff they could message me with.

Things keep happening and going very, very wrong… A continuous chaotic cacophony of Mind-Blowing, Brain-Breaking Stress, that just seems to never, ever end

Nothing goes right. Nothing goes easy. Nothing I do is *enough. And worse of all, is that I can’t stop other people from messing with my head, giving me Meltdowns, frightening me, Badly Shocking me, or breaking The Rules and Harming MeDestructive, Harmful, Destroying.

I haven’t stopped. I’ve been going, going, going, and haven’t even barely taken a breath for myself… Everything takes time away from me. There is no rest. There is no peace to steal. There is no respite. There is no Mercy

The Agony… The abundance of TMI… It has me blacking out into hallucinating unconsciousness; one that is uncomfortable and frightening.

Physically, I can’t move. Breathing is difficult. I am “imprisoned” in my Room again. I am Resentful, Frustrated, Hateful, Forced into this… The Agony is Unbearable.

These Feels are… Heavy… And I don’t like them. I only want them to go away.

#pain #chaos #drowningfeels #sensoryoverload #agony #despairing #stressed #drained #dragondisappointment #anxiety #asd #tmi #fatigue #helplessness #aggitated #exasperation #exhaustion #frustration

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A Different Physio Pain: When NTs Harm Without Consideration…


I went to physio. I wish I hadn’t. Even though it was technically a “good session” — productive, challenging, effective… It was not a good experience.


Mainly, I’m upset because after all my (emotional/ psychological/ mental) hard work, I’ve been thrown back to feeling inadequate, clunky, awkward. It was horrible, making me feel like physically vomiting; the nausea siting in the bottom of my throat like a boulder. I felt shame, resentment, disgust (with myself, and also the physio). And the worst thing—My chair no longer felt like an extension my myself, like it usually did now.

No. Shame.

This was how I felt for years. When my legs were failing, and after they failed. When I had to learn to deal with spending my moving life with a wheelchair. Learning to realise, that — amazingly — I was not “confined” to a wheelchair at all, as people so often expressed. No—The exact opposite, in fact. I was freed by my chair!

The realisation was slow coming, but it was astounding. No longer was there suffering of pain through my hips and back, wobbling on my feet and afraid I would fall. Over time, I became stronger, and then when I also had Neuro-Physio with the previous physio specialist, who was amazing, I got even better. Even stronger. First with Musty (GTM Mustang) and then with Kushty (Küschall K-Series), I become better, more capable, more confident, more accepting. My lovely chairs helped be better, stronger. It becomes my new normal.

Then someone turns up and says… it’s not. Not normal. Not good enough. Not something to be confident about.

As good as physio might be, the new person is not. She’s not like the last one. She hurts my insides, my Feels. Today, she kept going on about using my legs, “waking them up” and maybe walking. “Ooooohhhhhh, you never knowwww…” etc, etc, hollow, disingenuous, delusional idiotic bullcrap, over and over and over again. Seriously, she must have said exactly that five or six times. At least.

It. Hurt.

It felt like the obvious underlying statement was, only that was good enough—having legs. That I should blindly hold out all and any fragments of hope, and everything short of that was insinuated to be —gods-damned presumed to be! — nothing but a pathetic and miserable existence.



This ridiculous notion is what they call “Hope” — but what it really is, is Magical Thinking. And it just makes my heart and soul dissolve and freeze into dark black ice, caught between utter hopelessness and fuming anger and insult, at such horrendous ignorance.

What I prefer is realistic expectations, not stupid “oh, you never know…” utter bullcrap. I could say the same thing about walking on the moon, for gods-and-spirits’ sake! “You never know…!” Gah! It’s moronic, babyish, and, frankly, pathetic.

Oh, and believe me when I say I couldn’t care less if it’s “coming from a good place“, or they mean something nice. If you mean something nice, say something… y’know…Nice..?! Intention means nothing if the result is nothing but harm.

I will never understand the NTs’ obsessive insistence of clinging to blind, delusional “optimism” (aka: Magical Thinking). What’s wrong with Truth? What’s wrong with Reality? What is wrong with being less than Fairy-Tale Perfect…?? 🤬😡😤

I understand “Never say Never” about Unknown Quantity or Unknown Outcomes, especially with people. I fully accept there could be some connective electrical activity re-triggered and re-awakened after the (stress-induced) traumas I have endured over and over again. Unlikely as it is. But there are many, many better ways of communicating this, including offering great support (this is what her predecessor did). Pity is never an answer.

No scientist or mathematician got anywhere by basing their answer (or presumption) on nothing but a premise or hypothesis — Yes, almost anything is technically possible. But then, there’s also Magical Thinking, which involves utter Unicorns-and-Rainbows levels of nothing but fantasy.

Scientists allow for anomalies and possibilities, and yet they also don’t expect the moon to fall down to just 33,000ft above sea-level so we can all have it easy and just fly there on a 747 widebody, or for a black hole to morph into a sandwich, because “it’d be cool”. 🤨🤨🤨

In other words, we can’t just manifest crap because we prefer it.

If that was the case, I’d be using my own 3 wishes to make my natural hair to that of Disney’s The Little Mermaid, for my legs to be her tail, and for the ability to read people’s minds. I would not be wasting one on whether I could walk again…! 😒🤨😤

I cannot even begin to explain how these sweeping statements put my teeth on edge. Disingenuous. Despicable. Fantastical. Delusional. Weak. All things I am not, and refuse to be..

Maybe it’s the ASD. Maybe it’s just (or/andAlexithymia. But all of that delusional stuff just… Sends me into a tailspin. I’m here, I’m *Me*, and *I. Can’t. Walk*. I have a pretty chair with cool wheels to make up for it, and the physical strength to help me function and manage it. There’s nothing wrong with that. Is there…?

What I *do not* have is Mental Strength, and I’m Traumatised and Fragile. I cannot bear being told that basically I should do nothing but “hope” I can walk “one day”, because nothing else is good enough, and anything else is entirely… Pitiable.



So… What, then? I genuinely do not understand… Why is it so not OK to be like this, like me, that I’m being pitied and told to invest in false hope by a physiotherapist? One who dismissed what small (or huge, to me…) progress I had made, in favour of sweeping statements of disingenuous pity and false hope?

Am I supposed to twiddle my thumbs in the Lobby of Life, waiting for the 0.000000000001% chance I *may* feel or move my legs again? I have a better chance of winning the lottery… and I never play it. Am I now just some-thing… That I’m not worthy to do anything else, I I have no use of my legs? Am I just to sit around and be Pitied? Is that supposed to be it, now? That “walking should be the bee-all-and-end-all of life and everything” is… life-limiting. Debilitating. Disabling.


Pathetic.

To me, it’s a rediculous notion for anyone to have… And for it to be utterly despicable in a damned physiotherapist.

I’ve spent a long time trying to build up to having confidence in being in a chair. This made it all come crashing down. Swept away, destroyed, what little confidence I had started to develop in myself as an active wheelchair user. I cried — and I do not cry easily, if ever. I’d worked so hard to feel some self-worth in being a wheelchair user and physically incapable. Now, it was gone.

I do not wish to sit in Limbo, waiting for some fantasy “Maybe” (which isn’t real at all). I’m not putting things on hold anymore — I’ve been pushing myself to go ahead and be Me, which includes having Wheels and getting on with things. Even if its small things.

I don’t know if I have the… verbal sophistication?… to fully explain what I mean. Why it hurts, damages, so much. Nothing I’ve written here, or could write, could convey, that is accurate to how much this affects me and hurts me. Harms me.

I feel Depression inside, with its special brand of Extreme Anxiety & Sad. They’re playing their part well, and strongly. Inflicting their “Bad Feels” upon me, and more than occasionally drowning me in them. Making all these things worse, communication and processing longer. Meaning this “incident” with the physio made everything 10,000 times worse.

It’s all become a bigger mess now. This has been added to my brain as yet ONE MORE TRAUMA to deal with. It shouldn’t be like this.

There really is only so much that a person can take… and I passed my limit a long time ago.


A Victim. A Survivor. A Warrior.
Keep Fighting.


Life In The Doo-Doo Lane…

Sometimes…. Just… No.

It’s 12.21pm — Sitting in Table Table, heavy nausea in my tummy, not enough food or coffee anywhere near me, miserable because it’s my own fault I’m here right now, and wishing I was still stuffed in my bed, either awake or asleep.

… Adulting is Hard…!

All my fault because, apparently, my brain thought it was a good idea to not close the stopper on my cath leg bag last night, causing it to leak all over my side of the bed. And then, just for good measure — you know, because that’s not quite enough destruction — I spilled half a cup of coffee over the side of the bed too. Whoopee. Yey.

Grrrrrrrr….!!

Context — I’m in Table Table with a companion, S. We’re in Caearnarfon Premier Inn, to celebrate our joint birthdays (born exactly one week apart, precisely the same year). Sounds Strightforward, right? In theory, absolutely. In actuality…? Oh, Hell No!

It was all going to Hell in a Handbasket before then, anyway. That was the main reason for going — some R&R. Except, from even before we left, it was all going wrong. It should have been a sign. But since it wasn’t bight, neon, and flashing in screamingly-loud electric-blue… I missed it. And, so, the games began. Nothing has gone right, and this is the latest in the boo-boos list. And relatively speaking, not even that bad.

… I’m sure there are many, many more of them still to come!


So, we have been forced to allow housekeeping into the room. Therefore, I am hiding from them in Table Table, until the coast is clear to return to the room, and the scary strangers are gone.

… Dear Gods and Spirits, I feel like crap. I wonder if this is what hangovers feel like…? If it is, I finally feel sorry for the bastards who have one — although, theirs were knowingly self-inflicted, and mine was most definitely not. I would never knowingly do anything that did this me!


13.50pm…. Finally returned to the room. Only… Nothing has changed. Except a towel that was on the floor for them (so they know it’s to be taken) in the bathroom was removed. I’ve done a better rush-job at making the bed whilst in a super hurry than they did now — it looked like no one had even bothered, to be honest. I’m not sure they had, since I’d also made it this morning.

Cups changed. Towels changed. Bed linnen not changed. Have I been in hospitals too much, or in posh overseas hotels too much, or do Housekeeping just not change bedding anymore…?!

This was a pointless morning; they did nothing useful….!😟 I’d have most certainly been better off staying in bed and not killing myself trying to get out of this damned room before they got to it…


So… that’ll be one more boo-boo to add to the list!



Anxiety & Chaos — The Antithesis of the Aspie Mind…

Anxiety and Chaos rules my mind. It feels like it’s been long buried under mountains of agonising pain, sorrow, grief. Fibro-Fog, medication, and more and more Chaos and Anxiety. I can feel my mind still there, calling, struggling to be freed, to be heard… yet, there seems to be so little I can do about digging it back out.

As long and all this overwhelming Anxiety and Chaos rules me, rules my life, is forced upon me – truly, it seems that no matter what I do to prepare against it, it floods and breaks through my defences and laying siege until I can do nothing more against it. – it will Rule me. It overwhelms me. Then, it eventually takes over me. My life. And now, it just simply continues to do so… because I have only so many spoons at all, and that number is barely above Zero, and none of those spoons are even remotely strong enough to fight against the sheer mountain of things that continue to suffocate me every minute of Every. Single. Day.

With no Short Term Memory to speak of, and pretty much no Long Term Memory to fall back on (although, thankfully, the odd one can be brought out with certain triggers, unfortunately few and far between), it’s like I am nothing and no one.

As an Aspie, who once remembered everything and anything just about, this fact is near killing me inside. I still don’t know what to do with it – the grief and frustration of going through this, being forced to live without something embedded into me, that was an intricate part of me… Quite often, it is all too overwhelming. Even the inability to control my environment was entirely reliant on this… and without it, Anxiety and Chaos reign entirely. It is painful and frightening, and there seems to be nothing I can do about it – and I feel this because I have gone through everything I can think of over these past Five Years this has been happening to me…

I physically cannot move – my condition leaves me with only the shoulders and arms and what is above it; pretty much nothing else is movable by my own conscious will. I must remain on the floor whilst upstairs because my chair (or any chair) cannot fit up here; the house is too old and the landing is far too narrow to accommodate one. This means that I remain next to useless up here – unable to move or control my own environment in my bedroom. Despite assistance, there is no way to keep it sane without someone perfectly able-bodied to take things out and put them away as required. Whilst I may be able to retrieve something, putting it back may cost too much spoons, or be too difficult – or worse, I might forget.

I have been numbed by the sheer and exhaustive amount of confusing and destructive emotions that keep washing over and drowning me. I do not like emotions – actually, I loathe them, and wish they did not exist. And, quite frankly, there are definitely far to many of them. It’s a cornucopia of horror that I flail at, until I fall victim to my terror and end up falling and drowning beneath them all. “NT” people have called this dead numbness “depression” – but I’ve studied psychology for years, and what I have has never quite been fully described by that theory, and it does not fully cover what it is that I experience.

I am TMI (Too Much [Sensory] Information) when it comes to all these emotions – and all are fuelled by my two arch enemies: Anxiety and Chaos. I literally cannot live like this – I barely even exist like this. To live, to participate in… well, something, anything… to do what I love again… That would be Everything.

So, by that measure, it seems that right now I would have nothing…?


My ASD: Mistakes. Are. Bad… Very. Bad.

I’m not even sure why they even exist… but these physiotherapists are just such a waste of time. She screwed up again – and I pretty much had a meltdown about it, also causing a big set of severe Fibro spasm attacks. Hoorah

After going to so much trouble to get the right date this week so my mother was here with me, the damn physio wrote in the wrong date anyway into the diary when she got back, and after waiting and waiting and waiting, I only find this out after I call when she’s an hour late. So that’s two ruined days because of her, which has just sent an already troubling and difficult week into a horrible tailspin.

It is clear that no matter what acts or policies that are in place, nobody cares about how they treat you when you have ASD. It’s OK for them – they’re not the ones who have to deal with the meltdown (or at least severe anxiety attack) that is the result of this god-awful thoughtlessness. After trying to deal with it all afternoon, I had an anxiety attack and mini-meltdown later on in the evening, after that panic built and built and built. It in turn ended up in a series of severe spasm attacks that were horrific and painful. But she didn’t have to care about that, did she? No. She could be ignorant of it, never know about it, never need to care about it. It doesn’t affect her. So why should she care, right?

Apparently, that’s how they all think. It’s certainly how they all behave… And it’s just horrible. To the point of being traumatising.

20160920_173759000_iOSWhen appointments are made, stick to them. Don’t be late. Call if you’re going to be late. Isn’t that “NT” politeness anyway? Well, it’s vital in my world. I’ve already had PIP mess me around. I’ve already been thrown into hell with the isobars down at 1000mb level, unable to even breathe sometimes it’s so painful. I’ve already had a hell of a morning, starting with 3-4 hours of going through the motions of trying to get up – yes, that’s how hard it is. And I’ve had to get up super-early so there’s enough time to do all this and regain an equilibrium before the appointment…

And then after all of my efforts I find the physio didn’t even try to get this right. After we brought out the calander and showed her all the dates my mother was available. She still couldn’t get it right. The emotional turmoil of this, of all my efforts for nothing, that the fact she could make such a mistake that cost me so much… It’s just too much to bare.

There’s also the other point that I cannot even begin to cope with changes… as well as the horrifying realisation that she probably didn’t get the message I left with their reception to cancel the appointment she wrote up, and that she might come tomorrow anyway. When she wasn’t supposed to. When I told her not to… And then I have to cope with that thought, with that change, with that intrusion, because she wasn’t supposed to come tomorrow… It’s horrifying to think that she thinks it’s OK to put me though such a thing, just because she can’t concentrate long enough to put the correct date down. It seems so unfair. It’s not like they don’t know I have ASD… They just don’t care, or have a clue about it. Or care to have a clue about it.

Proving legislation and policy  is a complete and utter waste of time.

Tomorrow, either I’m going to be home alone when she comes, or my father remains here with me instead of attending his weekly visit to see his elderly mother. I don’t understand emotion generally, but I know that uncomfortable feeling of guilt. And that last option makes me feel a lot of that. The former terrifies the bejeezus out of me – I have no intention of being there alone with her. I’ll either say nothing, or say precisely what’s on my mind… which I’ve learnt that NTs do not want to hear. Apparently they’re allergic to the truth. The polite fluff they engage in is still beyond me, even though I generally attempt to emulate it. Probably quite badly, but hey… at least I try. Which is more that can be said for the other way – not many NTs [professionals] try to understand ASD-Land at all.

Like the physiotherapist. And PIP.

GrumpyBearI am “ranting”, but it’s so very horrible. “NT” people never seem to understand this – although some at least accept it. I’m terrified of tomorrow (and that’s actually an understatement), and the fact the isobars are still on the floor are not helping. It’s going to be a long morning, at the end of which, I have to call the receptionist back tomorrow to verify the appointment has been cancelled and the physio is not coming. She was supposed to call about it (the physio, that is) and reschedule, and she never did. With that evidence I can only conclude she thinks she’s still coming here. It seems that if she has a mobile phone, neither her receptionist nor myself have the details of it to contact her directly when she’s out.

I knew they were a waste of time, but since the initial attempt at contact was a farce. It’s not ending, either. It still is. I can’t see any reason to continue with this – it’s one extra burden I can do without, given there’s no payoff from it. I’m already ahead of her game, and so far she can offer nothing better. So I’m wondering why I’m spending the effort of enduring hours of pain and torment to get up in time for her to come, when she’s not actually even coming in the end, because she couldn’t do one simple thing right – write an appointment in her diary on the correct day. And repeating it all again in case she turns up tomorrow. It’s harrowing.

I really am honestly scared of facing tomorrow. I hope I get some sleep… It’s “only” 1:49am as I write this now. And there’s a long night ahead…

 

A Question of Sanity