Tag Archives: adult autism

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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April 2019 — Dailyo Mood Chart Stats

I use this great diary & mood-tracking app… It was quite a good idea, actually, to help me with my ASD 🤔

https://www.daylio.net

Well, I’d probably say the graph says it all, how my last month went. Seeing it like this, though, is a bit of an eye opener. It’s really no wonder I am a mess, of this kind of emotional chaos is what I am living with… I think this was what I wanted and expected out of using Dailyo — but it’s rather different when it ’s actually there, right in front of you.


The only shame is you can’t sync it through different devices… that part is annoying, but the rest of if it is pretty great, actually… 🤔🤨😎


It’s disturbing how all-over-the-place the peaks are. It’s there, in front of you, undeniable. It wasn’t OK. It was Chaos, Brutal, Upsetting, Difficult, Emotionally Unstable… Destructively Unstable… I realise now how strong, stubborn, I’ve had to be, in the wake of that chaos… The reason I am so, so very Exhausted. Run-Down. Severely Hyper-Vigilant & Easily Startled. Anxious As Hell 24/7.

The last thing someone who craves… Needs… emotional stability, is this… I am ASD, with (probable) Alexithalmya. What I need is is for that to be solid in Green.

Green means Neutral. Not Happy. Not Sad. Not Scared. Not Angry. Not Anxious. Neutral. What I’m seeing is, quite frankly, the exact bloody Opposite!


I am aware there is no ideal, per-se… However, it cannot be too much to ask that it remain at least somewhat in the Green/Neutral area a little more than twice in one month…?!




Anniversary of Hell…

Today is the anniversary of when I first was taken into hospital

On the 28th January 2018, I was booked into a Premier Inn, to go to my niece’s christening the next day.

Instead, I was carried into hospital, barely semi-conscious and screaming so loudly apparently they had to put me into a former office/storage closet, until they had a bed to feed me tramadol and morphine … I woke up in a hospital’s SAU (Surgical Assessment Unit) instead of a hotel… and my parents lost over £200 for the booking… 😢🥺😖

My brain is trying to process it, rather unsuccessfully, to be honest.

However… I like the fact the anniversary of my leaving coincides with one of my new physio appts. I think that’s telling. I could not even wheel myself through the hospital back then.

To celebrate it with something that would have been so alien to me back then, doing what I thought was impossible — like being able to sit up a little on my own, or hold myself up on parallel bars for nearly a whole minute so my body is “standing” upright (as in, I have managed to become strong enough now to hold all my bodyweight enough, so I could raise myself upright on them)— is almost confounding … 🤯


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…?


Practical ASD Assistance In Wales

There is not a lot of ASD assistance in Wales. The usual people haven’t really come through, particularly in North Wales. Having moved here from London, I’ve been astounded to find there is actually nothing here. And I mean nothing.

Zero. Zilch. Null.

Whilst there is stuff in the South, although predominantly only around the Cardiff and Swansea area (as if the rest of the entire country doesn’t exist), the rest of us are generally ignored. There is no help out there… unless you’re under 18, then perhaps there’s at least a little. For adult? Nada.

In compensation, there is a website, for ASD Info Wales. This has a few things that can be of practical self-help, and it does have a good amount of documentation for people with and without ASD to assist with life and interactions.

The ASD Planner – found at ASD Info Wales – is a good example. It’s an app for Android or iOS which is an easy and useful “tool” to use to help deal with situations that may arise… rather like a cheat-sheet for things.

 I’ve found it useful, so I thought I would share it.  🙂

 


MRI – The Claustrophobic Miracle-Worker

Had MRI today. I do not recommend them… Squished into a toothpaste-tube washing machine drum that feels like your own coffin fornipnto 45 minutes – not my ideal way to spend a morning…
Apparently they did actually find a brain, though. So there!

*Stipulation: Must admit they did not specify it was On or working, mind… 

 

They’re not pleasant creatures, MRI scanners. However, their inventor and everyone who has had a hand into shaping what it – and fMRI scanners – are, should be lauded and worshiped as magicians and forever lifesavers.. Saints, almost. What their contraption(s) have done revolutionised people’s ability to be diagnosed with neurological and neuropathological – and eve “psychological” conditions.

They proved the true existence of schizophrenia, MS, Fibromyalgia, depression, even Gender Dysphoria (being transgendered). They have also disproved and alleviated fears and suspicions of long-term illness or disability for people. Allowed doctors to see why some people will never walk and others don’t after paralysis or numbness, by giving them the ability to see the spinal cord, discs, and nervous pathways.

Hopefully, today, it will allow them to see I do not have anything to awful causing my weird and god-awful… condition. 

 

life's pooh

 

I was lucky this appointment came very quickly. It was in a temporary mobile unit at the local hospital, rather than the big one that is quite far away. The nurses were so lovely (and I’m completely sure they knew nothing about my ASD), so calm, so confident in helping and their support, that when something looked like it was about to go a little wrong, their support – and my father’s support – helped me go through with it. Just goes to show you don’t need to be “Autism-Friendly” specifically all the time… Just nice.

The thing itself is unpleasant, but they tried their best to make it as not-so-bad as possible. Ear plugs, ear pads, and a big foam pillow under my knees as I lay down, made it as comfortable as possible for me to lie there (they also offered an eye-mask, which I declined). A plastic “cage” (for scanner-tracking) was locked over my face, and I was ready. Well, properly packaged, anyway. I think few people are truly “ready”.

Then I was slowly fed in so it could literally look inside my brain.

Head and neck took about 20 mins each – they took a little extra time because the spasms (usually controlled my Magnesium oil) were starting up and making me twitch or flinch enough to spoil their pictures. Because I did not use the Magnesium oil and had my Pregabalin at the wrong time (the appointment was for the time I take them, and I needed them to be kicked in way before then), I was managing on the essential oil recipe and, well, quite a lot of alchohol – which is never by choice, believe me…

I stayed up all night for this – which wasn’t even a chore because I have a great new game (that would be Mass Effect: Andromeda) and I was utterly scared out of my mind about going through this. I always hate them and they’re horrible, but to get the peace of mind (or answers) you need, they’re necessary, so you put up and shut up. But that doesn’t make them any less scary.

The noises change from a downright trance/dubstep/garage dance beat, to Woodpecker Mode, to hammer-pounding, and all sorts in between (but they’re the main ones). Then there’s silence whilst they check the pictures or move you in the machine. The weirdest thing is the… sensations… the thing gives you too. Tingling, vertigo, disorientation… other things… you can feel where it’s looking by what you feel and where. It’s a strange experience, but one that does no harm (anxiety and panic aside…).

They can – and do – talk to you when they need to, and they will give you some “time checks” when you’re inside, which is helpful. And finally, they’ll tell you it’s time for you to leave. The bed slides out and the bright lights burn the your eyes – or, hopefully, back of eyelids – after being in your little white coffin for so long.

Then… It’s all over.

 

 


Not Living The Lie

Normal people live the lie. Then expect you do do it too. To make them feel better about… OK, I haven’t actually got that far. I actually have no idea why they do it.

It turns out I have Asperger’s, and I also can’t lie. Well, no, that’s not accurate… I can. Very well, if required. But I just don’t see the point. I can act too… I acted the role of a “non-Asperger’s” person for over 30 years. So well, in fact, that not one of the god-knows-how-many mental health professionals I’ve seen over the years picked it up. I was just seen as  someone with “mental health issues” because I was “depressed”, and “eccentric” because I’m a huge geek. I was “different”. I was left to it and avoided. I kept my head down and avoided them. It was symbiotic. Until I became ill with a chronic illness… Then Pandora’s Box was opened. I could no way in hell deal with both of them, and the immense pain I was in trumped the social confusion I dealt with every day. So I stopped acting.

It was only when I stopped acting, an I met a social worker who came to see me about the pain I was in (yes, I know… I asked for CBT to deal with the pain and they sent a social worker… I still don’t know why), that she pinpointed me like a laser and told me what was really going on with me. She was right… and apparently it wasn’t exactly a difficult diagnosis to make. The guy was back in a week with a confident yes, so it clearly wasn’t much of a head-scratcher. Reading the NAS website about it was like reading the most complete biography of myself I ever had. I felt like my soul had finally found a home… an answer… and I finally understood myself. It was a huge relief. It didn’t fix things, but it took the most enormous weight off my shoulders you can ever imagine.

But after the diagnosis… nothing. Nada. Zip. No help. At all. There’s none available – even the Autism Unit isn’t within my own NHS district – I only got to see them thanks to a new partnership between theirs and mine. But after diagnosis, it’s up to the local NHS to sort stuff out. Only they didn’t. Haven’t. And probably never will. So it’s just me now… trying to work out what to do and how best to help myself.

Because no one else will. I’m not just talking about the NHS, though… I’m talking about everyone and anyone. Ever.

 

Standing Alone….

Everyone always shouts at me for getting things “wrong”. They always have. Doesn’t matter how old you are, it always seems to be “wrong”. You are always “wrong”. Your behaviour. Your tone. Your way of speaking. Your lack of appropriate social interaction. Your hyper-sensitivity to everything. Your fear of all sorts of stuff. Absolutely Everything. Yet… no one tells you how to get it “right”. Right for them anyway. Because, you know, that’s all that matters. Them.

Who are they? Everyone else who isn’t like you. The world. People. Society. Everyone else. Everyone “normal”. Everyone who everything always seems to make sense to them. They know how to do all this stuff – what they like to call “normal”, like talk to people, go out, have proper conversations, interact, attend work parties, be outside – all as if it were, well, normal. But it’s not. Not to me. And not to some other people, people also like me. We’re a small group, a rare group. We’re almost always shoved to one side and ignored by the general population (if they know your “condition”), and most of us with the ability to do so, hide it. We fade and mimic. Pretend. Make our own lives stressful and miserable because we want to fit in. We don’t want anyone to know we’re like this, because the repercussions are pretty bad.

So… You do everything for them. Toe the line by their rules, which they don’t teach you. You figure it out, maybe, by being told off enough times about being “wrong” so many times you cry and watch them do it. You try and do everything they do, because everything is about them. It’s about how they want things done. How they talk to each other. How they lie, because they somehow think that’s right… when all it is, is stupid. Pointless. Pathetic. Doesn’t get the job done – just creates disharmony and complications because then they’re all tip-toeing around each other for the sake of “peace”. There’s no peace; they’re all too stressed out from living the lie. So why does everyone do it – and then expect you to do it too? It’s really damn well strange. And pathetic.

They also can’t be wrong. Ever. If you tell them they’re wrong, all hell breaks loose: They become defensive and stupid… you know, all the things you are not to do… heaven forbid. Yes, heaven forbid you of all people (“autistic”, “wrong”, “insane”, “attention-seeking”, “stupid” you) should tell them they’re wrong about anything. Common sense doesn’t seem to exist for them. When you point it out to them, they go barmy. They don’t want to know how to do it right. They hate it. Get defensive and just won’t ever take responsibility for it. Because you said it to them.

… Funny, though, how it’s OK for them to do it to you – over and over and over again. Then have the gall to never tell you how it’s done. Their response? To be appalled that you have the gall to express (read: lie) that you don’t know.

The fact you really, actually do not passes over their head like a home-run baseball. It’s like such a ridiculousness that they can’t even comprehend… but turn the tables on stuff you know to “obvious” and their backs go up and the prickles come out like a hyper-sensitive hedgehog.

They live their lives in hypocrisy and lies… I’m amazed “normal” people get anything done at all. Actually… Look at the world. Clearly, they don’t. 

When I did my work, I was obsessive, detail-focused, no mistakes (OK… I made one – once… A long time ago… Let’s not talk about that…). I got the job done. I was looking for perfection. No job was left half-baked, unfinished or without 200% care, attention and dedication (read: obsessive fixation). All my employers wanted me back, or didn’t want me to leave. When I first became chronically ill, the place I worked bent over backwards and every which way in between to help me manage, and when I really was no longer capable of giving at least 100% to my job, I told them I had to leave. I couldn’t bare the thought of the illness making me get something wrong – and until that point I had poured every effort I had into ensuring the illness didn’t get in the way of the quality of work I was doing. When I told them I was leaving, they really did not want me to, and I felt absolutely awful at having to do so – I loved that job, and I really liked being there. They took my “idiosyncrasies” and just left me to get on with it. That is how everyone should really be.

But that is not how most people are. Instead they’re always focusing on the things I find difficult, busy being horribly derogatory when I can’t do them. They then do all these strange things I just don’t understand, that are not really right, but asking questions about it and bringing it to their attention is “wrong”. Apparently they should not be held accountable for their actions, they are allowed to be defensive, and they constantly pretend to always be perfect. They’re not. Not even close. They’re chaotic, haphazard, disorganised, lying, posturing, play-acting, and being ridiculous. Too busy pretending to do stuff instead of just getting on with it. It makes my head ache from it all.

Their chaos, lies, posturing, strange rules all cause me to be confused and upset. But I’m supposed to be quiet about that, according to them. When I’m not (and I’m always not – I can’t lie and pretend it’s OK),  and turn it around at them, and when I then upset them in turn, they’re allowed to get all mad and I’m supposed to accept it’s all my fault. When they started it by being idiots and doing something wrong in the first place. I just do not get it.

 

Playing A Game You Just Can’t Win…

Seriously, it’s like being forced into playing a huge, frantic MOBA you’ve never even heard of before and expected to just get on with it.

… How many of you know are saying “What’s a MOBA?”. Yeh. Exactly. And now imagine you were forced to play against the highest competitors who yell and curse and say mean or derogatory things about you because you: Don’t know what a MOBA is; Have no idea how to play; You don’t know what the rules are; No one is willing to teach you anything; Then they all just ignore you… Oh, and you can’t leave. Ever.

Well… welcome to my world. That is just how it feels. You are thrown in, expected to know how to swim, and when you can’t, people are really mean – even seriously abusive – at you. And if they’re not doing that, they’re ignore you and they walk away. Leave you alone to deal with it however best you can. You struggle, you’re all alone, there’s no one to help you, it’s do or die. So you somehow frantically – through panic, despair, confusion, overwhelmed anxiety – work something out to save your own life.

Only then… they shout at you when your coping mechanisms are rubbish.

Without any frame of reference apart from what you can guess and work out… how the hell are you supposed to be successful without any kind of help??

Some people don’t get that far though. They just give up. Then no one can work why they took their own life. Why they were depressed. There’s lots of reasons for it, but this is one of them… no help, unable to cope, no one to show them what to do.

And so eventually you come to one very basic main conclusion: “Normal” people are idiots.

 

Trapped In This “Madness”…

The “madness” here isn’t the crazy-place you might assume my head is in. No… it means The World. That is was seems like madness to me.

Adults With AutistmAdult-diagnosed Autism/Aspergers… It’s not a good place to be. It’s also an ignored place to be. Nowadays, it’s all about the kids… and rightly so. I would rather die than allow a child to grow up and into an adult in the same way I did, facing the same things, the ignorance, the not knowing. However… There’s always a “However”… What about us? Those of us who struggled and didn’t know, and now want to reap the benefits of the last 30 years of learning about this thing? The children get it, so why can’t we?

There’s a whole bunch of NHS money being promised to helping kids with Autism/Asperger’s, but it feels like we’re being ignored and left behind. We’re already adults, with our own potential to meet. We already have skills and experience to offer. But how can we offer them if we’re not given the same treatment and opportunities afforded to the younger ones? It seems unfair we’re punished and penalised for the historical ignorance of the current NHS’s predecessors.

In the 1980s and 1990s, when I was growing up, no one knew what “Autism” really meant. “Asperger’s” didn’t even exist in their vocabulary. It was all about the stereotype of little boys playing with trains and screaming. It surely wasn’t about little girls with My Little Ponies who were also screaming… My mother knew things weren’t right. The health worker said I would “grow out of it”. I’m 34… I’m still waiting.

The best I’ve been offered in regards to help now is regular CBT (not Asperger’s-specific), and there’s a 12 month waiting list for that… which I was put on after I had already waited 9 months to be put on it. There’s a lot of meltdowns and confusion and panicking that’s going to be happening between now and then… How exactly am I supposed to deal with it? Oh yes, in the same way I haven’t been dealing with it since I was born. There’s also no interim-therapy or counselling available, either – there’s no money, so it’s an either-or situation. Are they waiting for us to all get so hopeless we end up being suicidal and going through with it, so it thins out the list a bit? I honestly feel like that’s what they’re hinting at. There’s no excuse to have to wait over 18 months to start therapy. Within 18 months it should be done and over with.

This is a lonely place to be. Mainly because everyone is busy being entirely negative towards you. Never patient, or accommodating, or sensible. I understand things even less now… my mind is caught up with the pain. Managing the pain. Ignoring the pain. It has no time to over-ride the other stuff that’s going on in there.

I imagine some of it is still to do with the fact I still can’t really accept it. I’m not happy about it. I still want to be just “normal”, like I always have done. Except I can’t… the only difference is now I  know why.

I love the fact people think you use it as an excuse… maybe because they’re always living those constant lies and think everyone is like that. Always trying to lie and cop-out of things. From the moment I’ve got out of bed I have worked my ass off until I’m exhausted – dealing with people, going outside, talking to people, doing my job, going on public transport, being in an office full of other people, walking through crowds, pretending to be “normal” and playing by their stupid little society rules… Everything that I hate. That terrifies me. That completely freaks me out until I can’t think. How many of those “normal” people. who assume everyone cops out of things, do that too? I’ll bet not too many. They’re probably the ones who do always lie and cop out of things. I didn’t even know what all this stuff they keep accusing me even was or meant until they started accusing me of it and I learnt. Funny that. But I still do not do it.

I learnt ways fending for myself. Of coping the best I can. People accuse me of “manipulation”, of “anger”, of “seething”, and “insanity”. Horrible words. Words that hurt. Hurt because they’re not true. I like the truth. You can deal with the truth. What I can’t deal with – or abide – are lies. Inaccurate information. Deliberate disinformation. Things that are not what they seem. Pointless hypocrisy, ridiculous lies, mind-numbing posturing… why even bother? How do people even live? I have no time for such things, so do they? No wonder this world is in a dumbfounding chaotic mess. They’re all to busy playing this game to get some proper stuff done. It’s hard not to be really, really pissed off about it, really.

But then there’s that catch where they don’t like you pointing things out that they do “wrong”…

And the wheel of hypocrisy spins all over again.

 


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