A Week, Actually!

It turns out to be exactly a week since I wrote the poem in the previous post. I got as far as putting that post together yesterday, but never managed to post it because my functioning let me down and I ended up with a sort of partial shutdown followed by a sort of partial meltdown and abandoned plans to do anything at all except survive.

A pattern is starting to emerge. After some big step up in activity, to a big thing that takes so much energy and generates so much anxiety, the first recovery day is reasonably OK as I’m still just pleased I managed to do whatever it was and I’m still, to an extent, hyped up by having made such a massive effort.

However, the second day is usually the worst, and yesterday, around mid-afternoon, having turned on the laptop to post what should have been yesterday’s blog post, I suddenly felt dreadful and overloaded. It became obvious that I wasn’t up to doing anything at all (by that stage I’d still not even been able to get myself a drink) and I abandoned the notion of either posting on the blog or, indeed, doing anything else on my jobs list. I tried to put it into words and ended up with this:

There’s a certain relief
When I just
Give up.

When I stop trying
To do jobs
Or write blog posts
Or “achieve”
Anything.

I then fell asleep on the sofa for a while, then woke up feeling disorientated and only semi-verbal (I could have spoken if necessary, but forming words was massively hard work).

And I felt low. Not generally low, like some sort of long-term depression, but suddenly low and exhausted, like a shutdown, though it wasn’t a full shutdown of the type I often experience. And I had one of those moments that I’ve not had in a while now, but that were much more common several months ago, where I suddenly felt that life was so very very unfair and I didn’t want it to be like this.

In the absence of anyone I felt I could bother, I ranted into the “Notes” bit of the iPad.

Why me? Why do I have to miss so many opportunities? Tonight I just want to be normal. I want the career I was supposed to have. I want to be able to go out on a Saturday night with friends and not need days to recover. I want to be able to “work hard” and that work to produce success rather than exhaustion and failure. I want to earn my own money. I hate hate hate hate being dependent on other people. I want a proper life. I don’t like having to sit in a darkened room for hours on end in order to recover every time I do anything. I’m bored. Maybe I’m even lonely. Though to be honest I’m so fucking alexythymic that I have no way of distinguishing between boredom and loneliness. I’m so fed up with having so little energy and being able to do so little. I want to work hard at stuff and I just can’t.

And so on and so on and so on. Lots and lots of thoughts of that nature.

I tried desperately to pull myself together and finally got myself a glass of water and a snack, hoping that if I ate then I’d start to feel a bit better. It sometimes helps. But it didn’t really at that point.

I then scrolled through facebook a bit more, hoping for something to distract me. I joined a conversation on a group and because my words weren’t up to much I posted a link to something (on topic) from this blog. Next I knew, the message thing pinged and I had a message from some stranger who was a mod or admin or something on the group – telling me off because hadn’t I read the pinned post and blog links were not allowed and would I go back and edit my comment.

Already low. Already struggling. I burst into tears. I messaged back telling them just to delete me and have done with it. I couldn’t find which group. I probably read the pinned post when I joined, but so many groups, so many pinned posts, so many screens of compulsory trigger warnings, content notes, worrying about pronouns, blog links, not links, this sort of post, not for this group, and so on and so on and so on. I know these things are important for so many reasons, but at that moment I felt old, I felt like someone who grew up before the internet was invented, and I’m still learning, and I can’t learn all this stuff fast enough because my head is so overloaded at the moment. Maybe I should stop posting on the internet at all because I’m clearly an incompetent idiot who can’t even read the fucking instructions properly. I’m wrong wrong wrong. Even online I’m getting the social codes wrong. What hope do I have out in the real world. Maybe I should just crawl under the duvet and stay there until I starve to death?

Remember, this was all going through my head when was basically in meltdown. Too tired even to meltdown properly I just sat and cried.

My brain, meanwhile, was reminding me that this was day 2 after doing something big. Some sort of meltdown in whatever form was inevitable. The incident with the facebook page was actually just the straw that broke the camel’s back (by the way, does anyone else literally have a little snippet of video in their head, like a GIF, of someone putting a single straw onto an already overloaded camel, in which the camel then falls to the floor, its back broken? And does anyone then imagine the work a good vet would have to do to rehabilitate the camel, all for the sake of one measly straw? Or is that just me?), and everything had been building since the weekend, and gradually getting closer and closer as time went on. I’d spent the morning stressed about a post concerning cooking from scratch, which made me feel incompetent and stupid, I’d read another post about how life was too short to moan about things changing, which made me feel disabled because my brain struggles with change, I’d read something about women wanting motherhood and careers, when I have neither, which again made me feel useless to society, I’d failed even to be able to fill the kettle to make a cup of tea, and so my bloody camel was absolutely at maximum loading capacity.

Eventually I calmed down. I hid the group from my feed, poured myself a beer, and sat quietly on the sofa. I had a couple of short chats with a couple of people online, both of which calmed me. I watched the telly. And by the end of the evening things were pretty much OK again and I eventually put myself to bed, having had a couple of longer chats with a couple of friends online (my husband was away overnight, having been out for a late evening).

And this morning my functioning level is improved. I’m in the midst of making a cup of tea, and feel like I probably need to eat something reasonably substantial, having hardly eaten at all yesterday. I might even start to get a few things done.

And I now ask why I’ve written up what happened yesterday. Why have I spent the energy basically recounting feeling a bit rubbish, when my general approach to this whole “being autistic” thing is to be positive?

Maybe just to indicate that it’s not all sweetness and light, so that others who have similar experiences can relate? Maybe to try to convey to those people who see me at my most functional out in the world, and might be tempted to think that I’m absolutely fine, that there is a price to pay for doing the things I want to do? Maybe just because it helps me to sort my head out a bit and to process what happened and to move on? Who knows?

All part of life, I guess. And I said at the start of this blog that I wanted to be as honest about it all as I could. So maybe that’s why? Shutdowns and meltdowns (or the partial versions thereof that I experienced yesterday) are part of the deal, part of the autistic life. For me, they always have been, but now I have the vocabulary and knowledge to analyse them, so that is what I do. And it helps to put a day like yesterday into perspective to be able to look at it rationally now my thinking abilities have mostly returned.

Now I just have to gather enough energy actually to post the posts on the blog! And to put them onto facebook and twitter. And to start to reconnect with the world once more. Then I need to see what are the most urgent jobs that need doing from my list because, as is becoming all too apparent, I have to do what I can when I have the energy in order to get through days like yesterday when the energy simply isn’t there!

Compression

As I mentioned in Too Feely, my taste in clothes is driven largely by comfort and not by style. Those who know me will probably, if they try to imagine me standing in front of them in my normal attire, picture someone who nearly always wears loose elasticated jogging style trousers (shorts in summer), t-shirts (vest tops in summer), and a fleece and maybe a scarf when it’s cold. All of these clothes are usually selected for their loose comfort, their lack of restriction, and, often, their softness. I do occasionally dress up for dinners, concerts and parties, but only usually for short spells of time, and not on a daily basis.

So why am I sitting at my computer, typing this, wearing tight compression sportswear that’s several sizes too small, with an elasticated waist support fastened tightly around me on top of the already compressive clothing? And, more to the point, why am I not feeling sick or in pain or desperate to rip all my clothes off? Why did I CHOOSE to put these things on this morning?

The short answer is “I don’t know”. I haven’t a clue why, sometimes, I am desperate for the feeling of pressure against my body and I crave it and it calms me. Sometimes, when bashing myself against the sofa for half an hour doesn’t work, and drinking several glasses of wine doesn’t work, and thinking mindfully doesn’t work, and everything else I can think of doesn’t work, being compressed DOES work, and it works beautifully well. As I’m sitting here, wearing clothes that I usually wouldn’t go near on an ordinary day, I feel grounded and reassured by them. I feel the anxiety receding. I feel that the deep even pressure from my chest to my ankles is something beautiful, and, truth be told, if I could make it even firmer, even stronger, then I would (I’m limited as to just HOW tight the clothes can be by the need to be able to take them on and off)!

I’ve written before, in poem form, about the weighted blanket I bought in January and how much the pressure from that helps me and calms me. My use of compressive clothing as a calming mechanism since discovering I’m autistic predates my use of weighted items by several months. I wrote the following back in October 2016, in what essentially became a journal that was the predecessor to this blog:

29 October 2016

Weird probably autistic thing number whateverwe’reuptonow.

Mainly noting here for collating evidence / stuff to write about on future blog / in future book etc. And just because this is becoming a chronicle of experiences.

I always wear loose clothes. I know I do. I hate my clothes being tight. So I wear loose soft ones with all the labels cut out.

This afternoon I’ve been pretty weird. On my own in the flat (he is working) and also had a fairly tense week (water getting repaired), out yesterday, loads of stuff on the form (which is getting there – I hope to have it in the post on Monday), and a moderately stressful time.

So this afternoon was letting go time. I knew I felt very very anxious. Very not calm. Rocking and bashing myself on the sofa and stuff in the dark helped quite a lot. But not quite enough. It didn’t quite do what I needed.

I suddenly realised that what I really really wanted was pressure. To be wearing something tight. That was the signal every bit of my brain was getting from my body. I want pressure. Really really want pressure. The message was clear.

So it is Saturday evening and I am home alone wearing my tightest most compressive running trousers and a pair of compression calf sleeves. I don’t own any normal tight clothes, but I do have kit. So I am wearing the tightest kit I own.

And it feels beautiful and wonderful and I feel calm. And right. Sitting here in compression kit.

This is all really really odd.

But it is what is happening. And my promise to myself when this whole thing started was to do it properly. To listen to the signals I was getting from my body and my head. To work out what is needed. What helps. What is all this about.

If the strategies sometimes include wearing compression kit, then so be it. The calming effect is magical.

Back then I just used the smallest running kit I had lying around (and because I’d put on a bit of weight over the preceding year it was slightly too small and therefore helpful). Very soon afterwards, after a few more occasions where I’d hunted around in drawers and things to find other clothes that were fitted and even and a bit too small and decided that wearing compressive clothing from time to time really was going to help me, I deliberately went to my local sports store (as a runner I’m massively familiar with the place as I’m always obsessing about new kit and so on) and selected several items of clothing and various weightlifting things and so on and they’ve become part of my life now.

I did a bit of hunting around on the internet and found that liking compression from time to time is, indeed, not unknown among autistic people. I found tales of people going out with compressive sportswear under their clothes, mentions of corsetry being worn by autistic people, accounts of autistic kids wedging themselves under mattresses, and, of course, information about Temple Grandin’s squeeze machine which it seems she invented to get the sensory feeling of being hugged but without the need for human contact which some autistics are uncomfortable with.

I’m not uncomfortable being hugged by other humans – far from it, although I do have occasional times when I prefer not to be hugged (they’re quite rare), and I’m absolutely not a great fan of being tickled or very lightly touched or being breathed on or similar. But other humans are not always available, and sometimes I do need to be both alone and have that reassuring feeling of EVEN pressure against me (the evenness is very important – I absolutely don’t like straps or inconsistent pressure or anything that feels like it’s digging into my skin).

The research I’ve managed to do so far suggests that, just like bashing myself against things or hitting parts of my body with my fists or lying under a weighted blanket, that this need for firm consistent pressure is to do with balancing the proprioceptive system – the sense that feeds back to the brain precisely where the body is in space, that tells you where your legs are under a desk even when you can’t actually see them. It seems that, like all the other sensory systems (see Too Bright and Too Loud) autistic people’s proprioceptive systems can be a bit skewed and that seeking pressure (or indeed, being unable to tolerate it) is not uncommon.

And so, wearing compressive clothing when I feel the need has become part of my normal life over the last six months. And, as I hunted around last October for those few items of “too small” clothing I found there were a few. And all my life I’ve had occasional times when I’ve worn them, for, it seems no reason at all. I’ve just got up from time to time and thought I’d wear the tight things today.

Then, a couple of days later, sitting wearing the newly acquired sportswear and a waist support belt, I was suddenly hit with a really strong memory – a memory triggered not by conscious remembering, but by feeling, in the same way that starting to flap my hands had triggered this sort of “feeling memory”. I wrote it up in the journal:

31 October 2016

As I calmed down and felt the pressure from the belt I remembered having a big wide belt when I was a teenager. It was the 1980s so belts were big and wide.

And I remembered sitting at my desk in my bedroom as a teenager wearing some too small shorts and the big wide belt done up very very tight and pushing my chair right up to my desk.

A memory completely forgotten until today.

That was one of the ways I coped back then. 30 years ago. And I wouldn’t have had the first clue why.

This continues to be an extraordinary and revealing time.

I know this memory must have come from some time in my early teens because I can remember the position of my desk and the décor in my bedroom. I also know that I’d had no instruction to wear a wide belt done up tightly for any reason (probably, had anyone known I was doing it they’d have tried to discourage rather than encourage it anyway, so I expect I concealed it, probably afraid I’d get into trouble), and I had no access to anything like the internet or any other influence. But the memory that was triggered last October has reminded me of similar times that go right through my life, through student days, through most of my adult life, right up to the present moment.

And so I shall continue to wear what I am wearing right now until either I need to go out or until I receive the signal from my body (which can often be sudden and dramatic) that says NO MORE! Interestingly, the feeling of needing pressure of this intensity can vanish almost instantly, and when it does, I listen. I’m working out ways of making the system as flexible as possible and of doing what is most needed when it’s most needed, and I’m starting to observe how it all works and still trying to understand what it’s all about!

Also Remember

Sometimes I am too tired
And cannot always
Summon up
The energy
To release
The tension
By moving
Rocking
Bashing.

Sometimes it doesn’t quite work
And the safe strategies
Will tip over
Into less safe ones
And I want to hit my legs
And tear my skin
Because I need more
Than movement alone
And safe bashing
Can provide.

But I must also remember
I have a heavy weighted blanket.
Over eight kilogrammes
Of reassuring pressure
That I can place over me

And when I return
From the third day out in a week
Exhausted,
Unsettled,
Desperate to feel better
Somehow.

I can crawl under my blanket
And feel calmer
And better
Anxiety subsiding
Nausea retreating
The urge to hit myself
Disappearing

And I am still
And calm

Grounded
Reassured.

Weighted Blanket

46-2017-01-13-17-51-00I got a weighted blanket.
It was very expensive.
I used my Christmas money.

It came about a week ago.
It is quite big.
And fairly heavy.

It has to be quite heavy.
Because I am quite heavy.
Percentage of body weight.

I got home one day from being out.
Exhausted and queasy.
Stressy and stimmy.

And I covered much of me.
With my heavy blanket.
Weighing down on me.

And I started to feel calmer.
And better, less dizzy, less ill.
Reassuring pressure.

Proprioceptive input.
Sensory rebalancing.
It works. Is good.

Written Therapy

07-2016-12-14-15-01-43I wasn’t going to post today. It’s been a slow day, a very slow day, and it has taken until 5 in the afternoon for the fog to clear from my head sufficiently for me to form proper sentences.

I’m also aware that I’m in quite a negative place at the moment. The lack of validation at the truncated assessment two weeks ago is still hitting me hard. I’m still struggling with the huge dissonance caused by uneven recognition of my autism. I have spent almost 20 years in the mental health system in one way or another, seen numerous doctors, counsellors, psychologists, psychiatrists, community psychiatric nurses, cognitive behavioural therapists, mindfulness teachers, and volunteer and charity mental health workers. In two decades, NOT ONE of these people has even mentioned autism to me. Not a single one.

The recognition that I am autistic is the single most important thing that I need in order to start to repair the damage done by 4 decades of masking, the thing that, had it happened years ago, could have helped me live a happier and better life. But in all those years, nobody said anything at all. I was sent for CBT to enable me to go to supermarkets and do shopping – it taught me immense willpower and fortitude, it taught me that it was normal to feel sick and exhausted. So I ploughed on through life and that was my normal. I smiled and assumed everybody felt the same. Until the point when I could no longer manage and my body gave up on me and I ended up ill and collapsed.

And two weeks ago, having even told the assessor that I’d spent my whole life asking for help the best way I could and being told I was so intelligent I’d be able to cope, the same thing happened again – I was told that my levels of articulacy (when asked a question to which I have a well-scripted and oft-rehearsed answer) were inconsistent with an autism diagnosis and the assessment was stopped after less than an hour and I was told that I’d have to return in January to see someone else as I was “so complicated.” I’m still trying to write it up fully, but it is immensely triggering and difficult.

Then I went ahead with starting this blog and full disclosure. The decision to disclose was an easy one – not because it was an easy thing to do (outing myself about something of such massive proportions without official say so was way beyond my confidence level that I would even be believed) but because I couldn’t figure a way that life would be worth continuing with if I didn’t disclose. In the perpetual debate as to whether to choose a rock or a hard place, the decision is made somewhat easier if the rock is freshly erupted from a volcano and is still on fire!

And so I disclosed. And received a whole host of positive responses – Of course you’re autistic. You didn’t know? Yes, it’s absolutely obvious. Me too and I knew instantly you were. I assumed you’d been diagnosed years ago… and so on and so on and so on. Some of these people have known me in person for decades, some I’ve not met but they picked it up simply from online behaviour, some hadn’t thought of it but the minute I said it they said how much sense it made and how obvious it is.

So what’s the deal? Every book I’ve ever read, every quiz I’ve ever done, every list of traits, people who know me (who I honestly expected to say “Really?” and be as shocked and surprised as I was) all scream autism at the top of their voices.

Yet the medics seem to have some sort of blind spot?

This single thing that could dramatically improve the lives and health of so many people like me is being ignored. My head is wrestling with this in a big way. I simply don’t understand. What is the matter with these people?

After a calm early evening yesterday I became very angry about it late last night. As a consequence I spent most of this morning in a state of shutdown. I was still in a fairly bad state when I finally managed to drag myself out of bed shortly after midday.

I absolutely believe that when the turmoil is settled down discovering I am autistic will be a massively positive thing and I’m very keen to embrace the positive bits and find out what my strengths actually are (the things I can really do, not the things that I’ve trained to do but are counter to my natural aptitude and achieved through immensely hard work) and how I can make a better life. Since I always was autistic and always will be, I might as well make the best of it and learn how to look after myself properly, using appropriate strategies to compensate for my impairments while positively embracing any strengths I might have.

However, I also want to tell the truth. Getting up and trying to achieve something today was tough. And I share the words below partly because they are the truth, but also because someone else might need to read them sometime and know that they’re not alone. Positivity has a great place in the world. But sometimes it is more comforting to know that somebody else understands.

Slow Start

My head isn’t working right.
Everything is irritating me.
Not at ease with the world.
The thought of doing anything, impossible.
Annoyances from the last few days racing round my head.
Anger and frustration.
My legs and feet tense, moving back and forth.
Picking my skin. Chewing my fingers.
Almost paralysed on the sofa.
My brain knows there are things to do.
I cannot reach them.
There is me, and there is everything else.
Noises surround me.
I am anxious and edgy.
Thoughts fragmented.
Speech great effort.

I need to meltdown.
To press the reset button.
But it can’t be made any more than stopped.
And I am stuck.
Searching my mind for a way to feel better.

I shuffle to the fridge.
Get a “breakfast drink”
And sip the cold liquid through a straw,
Rocking on the sofa
While the weatherman on the telly
Gives the early afternoon forecast.

Movement isn’t working.
So try compression.
I wrap myself tightly in neoprene supports.
And the pressure begins to work.
And I start to calm.

It is three in the afternoon.
I am almost ready to start the day.