The Preamble

I have become increasingly conscious over the last few weeks that there is a significant part of my “autistic journey” still absent from this blog. I’m also conscious that I have so far erred on the side of pointing out some of the inadequacies of services available, and that the only account of an autism assessment I have thus far published is a pretty scary and negative one.

It is true that I have encountered some difficult times during the diagnostic process and that there is much that could be improved. I still look back to the end of November 2016 with some horror and still hope to be able to feed back what happened at some point (one reason I try to type things up is so that they don’t vanish from my mind). And I also look back further to other “care” I have received, including the unhelpful GP who, two decades ago, told me to stop crying and sent me away with a packet of citalopram, and the counsellor I saw, a decade ago, who told me that it was my fault I didn’t fit in with the people at the office and I needed to try harder and learn to wear make-up and be able to discuss it and so on. These times were not good.

However, I can also look back into the history of my mental healthcare and pick out some people who were really good and really helpful. The locum GP who first referred me to a psychiatrist, realising how terribly ill I was, my current GP who has been totally supportive throughout, and a team of people who really did help with issues relating to my mental health and bipolar disorder in particular – an excellent CPN (community psychiatric nurse) and several charity workers who were brilliant. And I can look back into more recent history and see that the triage service (the stage between my GP appointment and my autism assessment) were also as helpful as they could be, and that I eventually ended up having a thorough, helpful, and successful autism assessment, carried out by people who really did know their stuff and really did help me to work out what was going on.

The only comparison I’ve thus far made between the two assessments I went through has been that in A Tale of Two Assessments, but now is the time to expand upon that post a little, and to try to write up, as best I can, five months on, what happened at that second assessment (or, indeed, third, if you count the assessment that was cancelled only hours before it was due to happen). Unlike the first assessment, which I didn’t write up for nearly a month because it was so triggering and upsetting, I’ve left the second assessment until now partly because external factors intervened (my father’s cancer diagnosis, various events to which I was committed, the need to sort out admin that had piled up prior to diagnosis, working on the report with my assessor) and partly because I have simply been exhausted and trying to process the whole thing. I knew, from reading what others had said on the topic, that getting a diagnosis would come with a whole load of conflicting emotions, and my assessors had also told me that alongside the relief would come a whole lot of other stuff, so I was prepared to go through another set of ups and downs like those described in Various Feelings.

What I had been less aware of is just how exhausted I would be, not only from relief because the fight to be recognized and validated was over and my life finally made sense and so on, but also from the energy used to gather the information over the preceding months. Looking back now, I can see that my life, from the end of August 2016 onwards, was almost totally taken up with researching autism. I read over 20 books, hundreds of blog posts, and spent hours and hours making lists, going through traits, going through my life, discussing with a few trusted friends, filling in quizzes and forms and questionnaires. The enormity of the discovery sent my mind into overdrive, and throughout September, October, and much of November I hardly slept or ate, was permanently on a sort of hypervigilant alert, and had a really intense time of discovery, of learning about my early childhood, of piecing things together, and of finally learning how to listen to my body and allowing myself to stim intensively, often for hours each day. Four decades of masking suddenly ended, the energy to pretend gone, completely burned out, and autistic me emerged somewhat powerfully.

Then came the first assessment and the crisis that followed it. My burnout finally reached the stage where I spent a lot of the time in shutdown, increasingly nonverbal, and retreating from the world, just trying to survive. However, the job of getting a diagnosis was still not done, so I kept pushing and pushing, started this blog, gathered more evidence, went through more stress, and my husband worked like crazy to get me the second referral to the team who eventually diagnosed me. Having been through the six months prior to February, it’s not really surprising that once the objective was achieved, I was utterly exhausted. And I still have to cope with being autistic, in my mid-40s and in perimenopause, working out where to go from here, and trying to maintain sufficient levels of self-care not to fall apart completely. I’ve also, tentatively, started to sort out the pieces of my life that were abandoned several months ago and have started to get back out into the world a bit more and begun the process of working out where I go from here, as I’m finally beginning to regain a bit of functionality again.

But now I am as ready as I’ll ever be to fill in the gap in the story of my diagnosis, the tale of the time between Weekend Journal and An Announcement, and of the five hours of my life that gave me the validation and permission to be myself and confirmed that what I’d learned over the preceding six months was true, confirmed by somebody who clearly knew what they were talking about and was willing to give me as much time as I needed to explain, to talk, to work things out, and who made the experience as smooth as it possibly could have been. I can’t yet predict how many blog posts telling this story will take, nor how long it will take me to write them all, nor what other posts I might feel moved to write in between times, before I complete the whole “diagnosis” story, but once I’ve documented the whole process I’ll try to find some way of linking everything up so anyone who’s interested can follow everything sequentially. I’m in the process of trying to organize the whole blog a bit better anyway.

It’s strange now to think, just over five months later, about those five hours on that day. It was a day that had been long awaited in several senses – the time after the first assessment had felt like an eternity, the months following the discovery had been intense and focused almost entirely on getting a diagnosis, and the four decades of a life that didn’t quite work had finally got to the stage where all those little things that weren’t quite “right” would be explained and validated by one sentence on one rather surreal day.

It was certainly one of the most significant days of my entire life!

Trail Return

So last weekend I went back to the place where I fell apart while playing music last August.

And this weekend I went back to the place where I fell apart while running in my last race before burnout hit so badly that I was forced to take a complete break from running, to the place mentioned in The Background, where I eventually pulled out of the race, believing that I had some sort of mystery illness because I felt so dreadful.

This afternoon we drove to what is, during that race, aid station 4 (and which is a car park most of the time). I parked the car in pretty much the same place as I sat with a race official almost a year ago, trying to explain that I was really not well, but I didn’t know how I was not well. I didn’t understand, then, why everything was so painfully loud and bright and hot, or why I felt constantly as if I was about to be sick or that I really felt that I needed to burst into tears but couldn’t.

I didn’t understand then why, at the previous aid station, I’d felt like the trees were coming towards me, I’d been unable to form the words to ask for a cup of tea, and the voices of people around me were distorted and incomprehensible.

Neither did I understand why the world around me seemed to be breaking into a million little fragments, and I couldn’t make sense of any of them, still less run an ultramarathon.

Back then I put it down to a combination of “mental health problems” and “maybe a virus”. It would be a few weeks more before someone suggested I might be autistic, and another month before I started to take the idea seriously.

I’ve gradually started to return to running over the last few weeks. I went out and did a couple of kilometres, then 5K, then 8K, and I also did 12K of strenuous walking earlier this week. All of this, however, has been on the road, mostly not far from home where the running was concerned.

But today was different. For the first time in a year I took kit with me and changed into it elsewhere (which requires a lot of executive functioning energy). I drove and parked out on the trail. And I did 8K of trail running, on gently undulating decent path, admittedly (it absolutely wasn’t fell running).

Once again I drank warm disgusting water out of the bladder in my backpack, once again I pushed myself hard physically (I’m actually pleasantly surprised at how much residual fitness I’ve retained, though I have some way to go before I am where I want to be). It was also a hot day, which added somewhat to the challenge.

And I chose to go back to the very same place where I’d fallen apart in the race nearly a year ago. To deal with the psychological stuff too, to run the same path that I’d previously staggered, before collapsing, ill and broken, by the side of the trail, from where I had to be rescued by race officials and a car to take me to safety.

Today was an interesting experience. The physical bit was actually quite easy, and I didn’t feel any great psychological impact, though the memories of sitting in a folding chair, sipping flat coke, and desperately trying to find words to convey to the race officials what was wrong with me (I didn’t know, of course) were very strong.

But, what I did experience, very strongly, was exactly the same sensory overload that I had done the year before. As I got back to the car and met up with my husband (who’d been running in the opposite direction – we rarely run together), the sick, dizzy, bad feelings overtook me and I knew I was totally wrecked. I sat in the car and suddenly felt the familiar ill feelings engulf me. My running kit was suddenly unbearably constricting and I simply took it off (my husband attempting to shield me from a man in an adjacent parked car – though by that stage getting the clothes off was all that mattered to me). I put my ordinary t-shirt on, then bashed my head against the door frame of the car several times, which helped, and my husband suggested that maybe we should walk around a bit to dissipate some of the evident tension.

So I ended up walking circuits of the car park, flapping my hands wildly, while my language fragmented and sentence structure fell apart, and I ended up monosyllabic.

My husband, who is quite accustomed to me being a little out of the ordinary simply remarked “You really are mad as a box of frogs aren’t you?” I concurred, and pondered the madness of frogs in boxes, as I usually do!

By the time I felt well enough to get back into the car to drive home my speech had completely gone, and as I type this, 3 hours later, it is just returning, in effortful monosyllables (and I’m still really stimmy and unable to sit still). However, with the loss of speech, the ill feelings started to subside, and I was able to drive us home perfectly well.

And I’m pleased, because I did something today that would have been unthinkable even a few weeks ago. I’m still very burnt out, still a long way from well, and I now know that one of my major challenges when running out in a world with so much light and noise and so on is to deal with the effect that the sensory overload has on my system. It’ll be even more challenging during races when I’m going to encounter other people in large numbers, and going to have to find a way of explaining how much energy it takes to speak to them or to process their words if they speak to me. There’s a whole lot of learning and so on still to be done.

But today I got back out onto the trail. I managed to do something I haven’t done for nearly a year, and I observed how far I can push myself before my system breaks.

And it’s so much easier to deal with now I know WHY it happens. There’s a long way to go until I figure out how to deal with it all, but at least knowing what I’m dealing with is a good starting point!

It was good to be back. Doing what I love, starting the journey back to long distances, when I hope to be out there on the trails, running through the night again, and experiencing the magic that is ultrarunning!

What A Year!

It’s my birthday tomorrow!

Don’t panic – this isn’t some sort of crisis of ageing, or plea for cake (though I’m not averse to cake), or any other similar thing. I have no issues with birthdays – been having them all my life and am generally pretty chilled about them.

I do always have a little moment of thinking about the actual number though, and usually, when I move from an odd to an even number it’s really satisfying – especially if it’s a really good even number with loads of factors, or some nice symmetry or something. 46 could be worse – a year of life for every chromosome is quite satisfying, and the fact that its prime factorisation is 2×23 echoes the chromosomal connection, since chromosomes come in pairs, enhances that satisfaction (even though 23 is a much larger prime factor than I’d ideally end up with for maximum numerical pleasure). That it’s made up of two adjacent even numbers pleases me, as does the fact that the digits add up to 10. I’m sure I’ll be thinking of many more advantages and disadvantages of 46 as a number over the coming year!

So today is the last day that my age will be 45. Unusually for an odd number, I find it really pleasurable. Prime factorisation of 3x3x5 is good, the fact that it is the sum of the digits is even better, and, of course, it is a multiple of 5. Multiples of 5 are the most preferable of all the odd numbers to me, so being a “5” is always good. Furthermore, the digits add up to 9, which is a square number (nice) and it is, itself, a triangular number! All this is good!

However, aside from an excuse to enjoy a bit of prime factorisation and so on, and maybe eat some cake or have slightly nicer wine for the evening, birthdays do make me pause, just briefly, to remember birthdays gone by and to reflect on the past year.

And this year I’m looking back at the last 12 months and basically thinking “Crikey! Did all that really happen?” in a really really big way.

Really really big!

Because 45 is always going to be the age I was when I discovered I was autistic and when I received my diagnosis.

I’m still struggling to explain just why such a discovery and diagnosis is such a big thing (though talking to others who have been through the same has revealed that I’m not the only one who regards this as such a big thing, as life-changing, and probably even life-saving (or, perhaps, life-prolonging, because I have to die sometime, just a case of whether that sometime is sooner or later)). I am, of course, still trying to get my head round the whole thing in any case – the discovery was only 11 months ago and the diagnosis less than 5 months ago, and on my last birthday I was still totally clueless about my neurology and about many of the things that have occupied my mind for most of the last year.

I wasn’t someone who’d “suspected for a while” (though I always knew I was a tad on the eccentric side and generally did things my own way, and I’d been aware all my life that the world was generally confusing and often difficult, and so on – but I assumed that was just the way life was for most folk and they just had more energy than I did), so I really have gone from “completely oblivious” to “diagnosed autistic” in a rather short space of time.

And I find myself in the slightly odd position of being rather knowledgeable about being autistic, simply because that has been my lived experience of the world all my life, which is rather strange. And, of course, because when I then get interested in something (such as autism) I get VERY interested, I’ve learnt a whole load of stuff that I’d never even have imagined existed this time last year! And most of it basically describes me, and my life – and I turn out to be rather less unique and different than I’ve always assumed! This is also odd – I was a quirky, crazy, eccentric, and rather batty neurotypical person who had basically failed at loads of stuff and was seriously mentally ill (all of this so I thought, though I’d never have used the term neurotypical because it wasn’t part of my vocabulary), and then suddenly I wasn’t – I was a really rather ordinary and quite stereotypical autistic person who’d been trying to be something I wasn’t for decades and had broken myself in the process (quite a revelation)!

And I’ve spent much of the last year thinking about all this, and learning, and realising that I AM, in fact, very stereotypically autistic. And as soon as I put autism into the equation, my life makes sense in a way that it never has done previously. And as soon as I realised what had been happening all these years and ran out of energy to mask, it all seemed so very very obvious!

And all this happened when I was 45. From first suggestions, formation of hypothesis, through self discovery and the diagnostic process, discovering other autistic people, taking my first tentative steps into becoming part of the autistic community, becoming a blogger, and starting the process of reframing my past and pondering what might make a more suitable future than the one that I’d been working towards all my life (and failing to achieve).

There’s loads more to do and loads more to learn. I’m still reading and watching and working out how to respond to people’s questions. I’m still trying to work out how to respond to my OWN questions – this is not something that happens overnight, and my views on things are still constantly changing and evolving in the light of new information. This is a process that will probably continue, to a greater or lesser extent, for the rest of my life.

But one thing is fixed. For the rest of my life, the year during which my age was 45 will forever be one of the most important years of my life (maybe even THE most important). The twelve months that have just happened have undoubtedly changed my entire identity (yes, it really IS that big – I am of course “still me” in many ways, but the knowledge I have gained in the past year means that my life will never be the same again – my past looks completely different now, and the way I live my life and feel about myself and my place in the world has changed forever – this is not a bad thing, rather a great relief and liberation from years of pretending to be someone I wasn’t)!

Tomorrow will be my first birthday as a known autistic (obviously, I’ve been autistic on all my other birthdays, but just didn’t know). I’m not sure how I feel about it (thanks alexithymia), but I sort of think it should be significant somehow. Perhaps I’ll work it out at some point. I think maybe there is a sense of moving on and continuing to rebuild my life and continuing to experiment and to work out what I’m actually going to DO with however many years I have left on this planet (that isn’t yet obvious to me, having had to ditch many of my previous expectations), but also a year of “this time last year”s ahead, as I continue to process everything that has happened and to review each milestone in my autistic journey with the benefit of a year’s hindsight.

But whatever happens in the future, what happened when I was 45 will stay with me for ever. 45 will never be “just another age” for me. Not only did I get my diagnosis at 45, but the whole process happened within that year. I can’t imagine I’ll ever have another year like it again.

My mind’s still a bit blown by it all really!

But, on balance, in a good way!

Going Back

I returned
To the place
Where life
Fell apart
Last year.

To the scene
Of so many
Meltdowns
And tears
And disasters.

To the memories
Of fear
And difficulty
And wondering
Why
I couldn’t
Just get on with life
Like most others
Could.

A whole day
To pack.
The journey there
Dissociated.

Focusing on
The practical.
Doing the most
Essential bits.
Taking as much
Time out
Alone
As possible.

Starting to learn
To accept
Help
Even though
It is counter
To everything
I have ever
Worked for.
Having to change
My mindset.

Struggling sometimes
Someone talking
To me
When I wasn’t able
To process speech.
Conflicting instructions.
Near meltdown
But not quite.
Speech gone
For just over
Five hours.

Consciously being
With other people
When I couldn’t speak.
Instead of texting in
“Sick”
And staying away
As I would have done
Previously.

Senses on overload
Lights too bright
Music distorted
I knew it sounded
Wrong
As if being played
Through a
Faulty
Amplifier.
Not what Mahler
Intended!

Knowing
Some things
Would help
But lacking
The ability
To do them.
Inertia.
Energy.

Living away from home
Minus usual care
And routines.
A few meals
Missed,
Some medication
Missed.
Executive functioning
Declining
Sensory spoons
Depleted
Social spoons
Deficit.

Feeling guilty
Because
I wasn’t able
To contribute fully
To everything.

But

People helped.
No rehearsals missed.
Near constant
Low level stimming
Was fine.

And mostly
The music
Was wonderful,
Not distorted,
And I can
Still
Play
The viola.

Learnt so much.
Started to understand
Just WHY
So much of
This stuff
Has always been
So hard.
Now I understand.

Beginning to adapt
To the new life
With the new knowledge.
Starting to accept
That I need
To do things
A bit
Differently.
Consciously
Saving energy
Where possible
Now I know
What uses it.

There is more needed.
It isn’t all solved
Yet.
I still find
Asking
For adaptions
Really hard.
Partly because
It is so new
And partly
Because
I don’t yet know
What is possible
Or what I need.

But I am starting
To realise
Why some things
Feel bad.
And always have.
And even though
They still do
Understanding WHY
Helps.
And I can start
To notice
How things
Drain my energy.
And why being
Near to other people
Is tiring
And why “washing”
With vile slimy wipes
Makes me feel
Even worse
Than I already did
Without my bath.
Sensory hell.

It is still
Very much
A work in progress
This new life.

And I need
So much
Recovery time.

But it is possible
To enjoy
Something
I had thought
Might
Be beyond me
And so
Lost for ever.

There are
So many
Good things
I don’t want
To lose.

Maybe
I can keep
This one.

I went back.

I survived.

Not That Autistic?

I needed to go out this morning to do a few jobs. Go to the bank, bit of shopping for the next couple of days and for the weekend when I’m doing stuff (“stuff” needs a bit of preparation), petrol in the car, and so on.

So I left the flat feeling pretty much as normal as I ever feel. I got in the car, drove to the first car park, found a spot, parked, got out, and walked, briskly as always, through town to the bank.

And as I went, I thought “I’m out now, and, really, actually, seem pretty much like a normal person. Maybe I’m not that autistic after all?”

Then I got to the bank. There was a queue. And the lights were bright even through my darkest glasses. I stood in the queue moving from foot to foot, chewing my fingers, scratching my head, and occasionally twirling my hands.

Then I went to look at coffee shop number one. It was full. There was a queue. I decided to give it a miss.

Then I went to supermarket number one. Where I bought the same food that I’ve been buying for several weeks now, even though I’m really rather bored of it. But somehow buying and eating anything else during the normal daily routine seems so desperately desperately WRONG. So I bought the same stuff as I usually do.

Then I went to look at coffee shop number two. It was also deemed too full with a queue. I decided that it wasn’t for me.

Then I went to supermarket number two. Where I bought yet more of the same things I buy every time. Where I once again went to the auto checkouts. Where I flapped my hands at the nuts because I couldn’t see some the same as I’d had last time and had to get the closest but they were different (of course they were, it was a different supermarket, but I had to convince my brain, actively, that these nuts would be OK, even though they weren’t those nuts).

Then I went to get petrol. There was a woman in the petrol station proclaiming she’d lost her pen in a very loud screechy voice. I wanted to put my ear plugs in because the screeching was so painful.

Then I got home. And a workman had parked in our private, numbered, parking spot. The notion of not being able to put the car back in the right place sent my anxiety spiralling. I asked him politely to move and instead of simply doing so, he argued back with me and I was forced to debate with him to get my own parking spot. I finally did manage to park my car in my own spot, but by that time the spoons had run out.

Then I had a complete meltdown in the car – screaming, bashing, tears, and so on.

Eventually I calmed down sufficiently to get the shopping from the car to the flat and to rant somewhat on facebook where I got support from an ever-patient bunch of friends.

Then I realised I’d lost my ability to speak. It’ll probably be back later – it usually is.

I set off this morning thinking I was “not that autistic”!

Hmmm!

Still Very New

A year ago
Things had started
To go wrong.
Depression maybe?
Anxiety
Growing fast.
Things had not been right
For several months.
I didn’t know why.
Autism was not
Even considered.
I was just
An anxious eccentric.

Ten months ago
People started
To suggest that I might
Be autistic.
Which, I have to admit,
Was a bit on the weird side
Because as far as I knew
I was just me.

Nine months ago
After a bit of research
And discovery
And, well, if I’m honest,
Having my mind blown somewhat
By the whole concept
And
In the face of so much evidence
That to deny it
Would be a supreme act
Of illogicality
I accepted
And I wrote
“I am autistic”
For the first time.
And started to believe
That maybe
All my failures
Were not my fault
And I wasn’t lazy
After all.

Seven months ago
The first assessment.
Disaster, meltdown, damage.
Invalidation.
Despair
And serious thoughts
About whether I could even
Go on living.
My whole identity
Fallen to pieces
My whole life
A pointless waste.
Feeling guilty
Simply for
Breathing the air.

Six months ago
I had started to blog
And to engage
With other people.
Figuring that even
If everyone thought
I was a total idiot
Then maybe, just maybe,
That was better
Than being dead.
My logic being
That being a friendless idiot
Has potential for reversal
Whereas being dead
Does not.

Five months ago
A second referral,
Elsewhere.
We had to work for it
Quite hard,
Never giving up.

Four months ago
DIAGNOSIS!
Officially autistic.
Life changed
For ever.
Even though
It was already known.
I needed
Confirmation
Validation.
Big relief.
Mysteries solved.
A new confidence.
New hope.

Two months ago
Life gradually improving.
Slowly.
The first signs
That maybe
Burnout
Wouldn’t be for ever.
Acceptance
Learning
Gently starting
To rebuild
My shattered life.

And now
I continue to oscillate.
Part of me wants
To be an expert
An advocate,
And to learn
And educate
And debate the issues
And to be a confident
Articulate
(Most of the time)
Authentic
Autistic.
It’s not very difficult for me
To behave in ways
That are obviously autistic
All I have to do
Is stop trying not to!
But
Part of me still believes
That I don’t have the knowledge
Or abilities
For all of this
And that I’m out of my depth.
Because
I’m just a small person
Trying to figure all this out
And sometimes
I wish life
Would just
Get back to normal.
Though, to be honest,
I’m really not sure what “normal”
Even means any more.
Why is this all happening
To me?
I do not have
All the answers.
I just want to hide.
It all feels so uncertain.
I feel insecure.
Not confident.
Is the confident autistic
Yet another act?
My identity continues
To wobble
On its axis.
Trying to sort what is
Genuinely me
While maintaining
A person
Who can survive
In society.

Balance.

Difficult.

So I look back.
Two months
Four months
Five months
Six months
Seven months
Nine months
Ten months
A year

And I remind myself
That autistic brains like mine
Need time to cope
With change.

I have years of lived experience
I learn fast.
Yes.
But I also struggle.
And I need time
And space.

Looking back
At just how much has happened
In less than a year
Is a good reminder.
That I don’t have to have
All the answers
Yet
Because, for me,
All this
Is
Still
Very
New.

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!