Lost Day

I woke early, feeling exhausted, and not a proper sort of sleepy exhausted, but an odd sort of depleted exhausted, like all the energy had drained out of me somehow and I could hardly move. I could hear birds, very very loud birds, wood pigeon calls burning the insides of my ears.

I knew I had to be somewhere today. I knew also that getting there would be difficult. I looked at the schedule for the rest of the week, which I had photographed and saved on my phone. I tried to work out what I might be able to skip without causing too much inconvenience or annoyance. My head wouldn’t think very well, so I started to try to type into my phone:

If this were real life and I’m at sensory levels of now and tiredness. Would be schedule looking.

This was how the language emerged from my finger. I knew it was wrong and that it needed editing. And I also know that when WRITTEN language becomes difficult and starts to go wrong in that way, that I’m heading into shutdown. This is something I’m starting to learn, now that I’m actually observing myself with some knowledge, rather than just declaring myself “ill” or declaring that “my head went wrong” as I have done in the past.

I attempted to speak. There was nothing. No surprise there. If the written words are starting to go wrong then the spoken ones are almost certainly non-existent.

It was still early. I still had to get a message to the outside world that I wasn’t going to be where I was expected to be. The best I could do was to message my husband a few words and hope he could interpret what I was trying to say in order to convey some sort of message to those who needed to know that I wouldn’t be appearing for rehearsals this morning. He received the following messages:

Fail now. Is. Words. Morning. Not.

Now. Schubert. Prob. Can’t.

Tell.

Write hard. Speak not. Food not. Later.

And because he has long experience of such communications, he was perfectly able to send a message saying that I wasn’t able to get to the Schubert rehearsal and had asked him to pass on the message and that I didn’t need food and wouldn’t be able to communicate for a while.

At some point during the morning someone brought me a cup of tea and left it outside my tent. I was unable to respond, unable to move from where I was curled up under the duvet, unable to do anything at all for a while. This is all absolutely normal for me at such times, which have been happening since my early childhood. My mother observed the behaviour, still remembers it well, going right back into my early childhood, and even had a word for it, zonking, which I mentioned in Losing The Words.

Having successfully conveyed a message of sorts to the outside world, my brain then simply closed off. I slept a bit. I lay there staring at the side of the tent, a bit of plain fabric being as much visual input as I could take. I didn’t move. I couldn’t move. I don’t usually remember much from these times, just a feeling of being utterly drained, no energy at all, and something like a deep depression, not being able to form thoughts properly, no ability to translate things into words, nothing. My head is simply closed for business and my body follows it. There is nothing to do at that point except wait – it’s like some sort of reset is required before my overstimulated and exhausted brain will function properly again. I don’t respond, I don’t communicate, I just lie there and breathe, nothing more.

After a few hours I regained the ability to type and to form words and typed some of the thoughts that had by then started to emerge from my head into the notes app on my phone. Having established that I could once again produce proper typed sentences, I was then able to contact the outside world by facebook without my husband having to make the sentence structure for me. It was lunchtime. I was aware that I hadn’t eaten or drunk anything all morning (and couldn’t have – something else my mother had observed about zonking was that food was an absolute no during those times, and when I have attempted to eat or to keep functioning I have simply ended up physically sick and it’s been assumed I had some sort of bug or similar).

Somebody brought food and left it outside my tent. I was unable to thank them except online, but was able to eat by mid-afternoon, and was, it seemed, by this stage, quite hungry – even though I didn’t feel any sort of hungry, once I started to eat it was obvious that I was.

It took another couple of hours for the shutdown to be properly over and a further hour for spoken words to fully return. Although I can’t always tell when I’m going IN to shutdown, or that that’s what it is (though I am getting better at recognizing it as I’m learning), it’s really obvious when I’m emerging because I start to stim again, I start to rock and to move and get back to what for me is “normal”, a state of dynamic equilibrium as I like to think of it. For me, being still either means I am masking furiously and working hard to stay still, or I am ill and in shutdown, or I am asleep, or, occasionally, that I am relaxed under a weighted blanket or completely immersed in something or similar. The rest of the time I move, and that movement restarting is always a good sign – it’s the feeling that you didn’t know something was wrong until it was solved, and the minute it’s solved it was obvious how wrong it was before!

My sensory system remained on high alert for the rest of the day – I managed to go and sit in the audience to hear some of my friends singing and playing music, but used earplugs against the applause and was deeply grateful to a friend who asked others to move away from me to give me some space during the performance.

By mid-evening I was able to drive home, where my husband had “the food” (whatever I’m currently eating we call “the food” – I have cyclic obsessions with food where I eat the same thing every day for months, and always have done) ready and waiting for me, and I spent the evening doing all the familiar routines and being with the animals and recharging properly ready for the next day.

But what should have been a day participating was basically lost to a massive shutdown, and there was nothing I could do about it. I would have liked to have been in the rehearsals that morning. I would have liked to go to tea that day. I would have liked to join in the celebratory feasting and dancing (although I knew that the feasting would have been a non-starter anyway and I’d have been eating alone somewhere quiet), but I couldn’t.

But at least I know what causes these times now, and I have a word for them, shutdown, which makes sense to me and enables me to understand what’s going on. At least I have people who are willing to understand it too and to bring me food and so on and to help me out when it happens. And I know that I’m not getting some sort of illness (as has been suspected on many occasions in the past) and that I will feel better in a few hours’ time – I just need to wait, to be on my own, and to have as little input into my system as possible.

Last year, when the same thing happened, all I knew was that I felt inexplicably awful and couldn’t even tell anyone how or why. I spent a night silently crying in my tent in the dark, without food or help, with nobody even knowing where I was because I’d lost all ability to communicate and wasn’t even able to type a message to my husband. And short of “something mental health related or maybe a virus”, I had no idea why I was like that.

This year wasn’t ideal. It’s not really how I want to live my life, missing out on good times, having to skip rehearsals, having to sit on my own because my system can’t cope with much social interaction or noise, and so on. But it is better than the distress of previous years, than the anguish of desperately trying to function, trying to make things work, having to call in with some “unknown illness”, making myself worse by continuing to try to speak or function as I “should”.

I don’t like having to live this “half life”, which is what it feels like. But knowing why these things happen means I’m much less self-blaming, much kinder to myself, gentler to myself. And simply allowing the inevitable shutdown to run its course and not trying to push myself out of it means that I actually recover more quickly and am generally healthier as a result. Maybe once I’m more fully recovered from the recent burnout I’ll be able to do a bit more – I do hope so.

It does still all feel very much like a work in progress still. I have my answer as to why these things happen to me, but I now have to work out the best way to live, which I haven’t quite managed yet.

Advertisements

Leaky Head

I have been inattentive to this blog recently. My head has been so full that processing thoughts into words has not always happened. I have also been back to the place mentioned in The Discovery and, more recently, in Going Back, Doing My Best, and Packing.

I am still analysing the experience of returning. I am still recovering from being with so many people for so much time. My husband went away for a couple of nights an hour after my return and I have now not seen another human or spoken a word for over 40 hours and I am starting to regain a little equilibrium.

I am also trying to work out what any of it is for. And I spent a long time yesterday “persuading myself That I even want to [live]”, which is still not a foregone conclusion for me. In the end, I gave up trying to work out why I do anything at all, and simply reminded myself of Scott Jurek’s words: “Sometimes you just do things!” These words have served me well on many occasions over the last few years.

Better analysis will have to wait for a while. Pouring so much energy into things outside my normal routine has left me somewhat depleted and also very behind with blogging and “desk work”. There is much to catch up on, and it will take time. I am having to take things very very gently.

However, the last day I was away, the 20th August, was a significant anniversary for me – exactly six months since my formal diagnosis. And, at four in the morning, sitting in a tent in a field, I typed the words below into my phone. Just something to try to mark the occasion somehow.

They’re very unformed thoughts. I have not analysed them, nor edited them (beyond dealing with a couple of autocorrect fails), and my head’s not really in a place for discussing some of them yet. I suspect I’m also repeating things I’ve said before. Maybe this is the way my brain is doing the processing, still trying to work out what has happened in the last year and where to proceed from here.

Please don’t challenge me on the thoughts below. I’m not up to being challenged on them. They are my truth from where I am at the moment. I do not want positivity. I do not want reassurance. Those things are uncomfortable to me right now.

My head needs space to process the thoughts and I need to challenge any that might need challenging by myself, in my own time. I do not currently have the strength to debate them with others. I merely present them to you as they are.

My head is full of anniversaries.
The end of this summer’s music
Reminding me of how things ended
Last summer…

Then
I was just at the start
Of exploring
The “autism hypothesis”
As I called it.

Me? Autistic?
No.
I did not “suspect”
I had not “wondered for a while”
It hadn’t occurred to me
At all.

TBH I hardly even knew what autism was.
I sure as hell knew nothing about
Sensory issues
Executive functioning
Autistic inertia
Social imagination
Burnout
Masking
Stimming
And so on.

Except that I did.
I knew all these things
Really really well
Because they had been part of
My normal
All my life.

I just assumed the world was
The same
For everybody.
And that life was basically
A competition
To see who could cope
And be tough
And behave “properly”
Like they tried to teach me.

I knew I was weak
Because I couldn’t tolerate it well
And got so mentally ill
That I wished to be dead
Most days of my life
For as long
As I could remember.
I assumed this was normal.
Most folk wake up
Wishing they hadn’t,
Don’t they?

I knew I was bad
Because I was still naughty
Even when I was trying to be good.
And I was still lazy
Even when I was working my hardest.

And then I discovered I was not
“Normal”
After all.
And please don’t think
That telling me I AM normal
Is in any way helpful
Because it is not comforting
Nor reassuring.
It is invalidating,
Gaslighting.
And upsetting.

There is
A weird feeling of discovering
That most other people
Perceive the world
Differently.

Must be odd for them!

I wonder what it’s like.

But I’ll never know.

My head is full of anniversaries
The date on my calendar app
Reminding me of how things ended
Exactly six months ago…

Then
I was at the end of exploring
The “autism hypothesis”
Because it ceased to be a hypothesis
And became a formal diagnosis.

Six months of learning about
Autism
And
Sensory issues
Executive functioning
Autistic inertia
Social imagination
Burnout
Masking
Stimming
And so on.

And discovering that my normal life
Wasn’t so normal
After all.

And that most other people
Weren’t being tough
In the ways I thought they were.
The assessor was clear on that.
And absolutely totally clear
That I fulfilled all the diagnostic criteria
Even things I hadn’t discovered:
My gestures and expressions
Limited and atypical.
Things that should have been
Learned intuitively
I had instead
Learned cognitively.

My head is full of anniversaries
And I think I should be
Writing something more
Organised?
But life has been sapping my energy
And my mind still needs
More processing time.

The thoughts are just there
Undefined
Randomly swirling.
Logical arguments not yet formed

But the anniversaries are there.
Six months since diagnosis.
Half a year.
That should be significant?
Maybe?
Perhaps it is and that’s why I’m even writing this.
It feels significant.
Six months since liberation.
Six months since it became OK
To stop trying to be “normal”
To give up the old life
(Though I’m yet to work out
How to proceed from here)
To recognise how disabled I really am
And how much care I need
Though, perversely, I’d rather be independent.

Six months is a long time
A lot has changed.
Six months is a short time
There is still a long way to go.

I am still learning.
There is so much to learn.
I’m still new to this autism malarkey.
Both new to the whole idea of it
And the theories
And debates
And arguments.
And to how and where I fit
Into the whole neurodiversity thing.
Confusing complexities of language.
The triggering effects of so much exposure
To children and childhood and parenting discussion
An area of life I had cut myself away from because it is so alien and painful.

And while I have lived for decades with my “normal”
Redefining myself as autistic is odd.
I was colourful, eccentric, weird, something special and different.

Now I discover I was just a common or garden autistic all along.

I feel much less unique.
More bog standard.
But I also know now I’m not normal.

Paradox.
I’m odder and less odd than I thought
Simultaneously.

And I have to learn to live
Practically.
And keep persuading myself
That I even want to.

Now is not really the time
After a week of memories
Almost no sleep
Meltdown
Shutdown
Self-injury
Dissociation
People
Music
Trying to cope.

But today is the date
So I have allowed
Unformed thoughts
To escape from my head.

My head is full of anniversaries.
So full
That some thoughts
About them
Have leaked
Out of my finger
Onto your screen.

Packing

To return to the place
Where my old life ended
And my old self
Disintegrated
Into a million tiny fragments.

I messaged a friend
A year ago
And said
“It seems like I might have
Some sort of autism”

I laugh now at the terminology
And ponder what “sort” it might be
I’d quite like it to be purple
With a side order of cheesy chips
And a glass of beer.
Maybe also a beard
And nice eyebrows!

I digress

A tweet set me thinking:
Do I have a love-hate relationship
With this place?
I’m not sure.
I’m not given to loving
Or hating
Anything much.
They always seem
A bit strong
And the words are loaded
With overwhelm.

But

I got it.

The paradox in my head
About this place
At this time of year
After the events of August 2016…

Two words
Describe it
Perfectly for me

Supportive
And
Traumatic

The support of good people
I know they are good
My brain tells me
But they are still people
And
As always
With a crowd of people
I get that sense of
Disbelonging
That I always have.
No matter how much I belong
I never do.
And if I feel I might start
To be part of something
I get uncomfortable
And withdraw.

The trauma of multiple meltdowns
My life falling apart
The eventual admission
Of just how disabled I really am
And that to return
I need adaptions
I can no longer be
“A normal customer”
And I know the truth
About my life.
The eventual comfort
Of knowing why I can’t
Do what most people can.

I have nearly cancelled this trip
So many times.
Decided I cannot go.
Too much.
The risk of meltdown.
The inevitability of speech loss
In a place where face to face interaction
Is valued.
At what point do I just give up?

Apparently not yet.
Because I have started packing.
To return to a place of

Unsettling support
And
Reassuring trauma.

Where all the feelings get intermingled.

And the routine
Is simultaneously
Comforting and constraining.

The discomfort of becoming
Part of a community
Of never quite knowing
What to do
Or how to be.

But I am drawn back

Simple to say it is the music that draws me
But it is more than that.
Observing people.
Intrigue.
Maybe even as close
As I come to being
Part of a community.
Skirting the edges,
Watching from the sidelines
Because throwing myself
Into the middle
Breaks me too badly.

I cannot keep up the acting
Or make so many conscious decisions
Or remember how to chat
Or cope with the noise
Or concentrate that hard
On doing the right thing
Or on explaining
Why I am not doing the right thing
For days on end.
It is too exhausting.

Adaptions are being arranged.
Separate eating.
People knowing I am autistic
And need time out
To recover.
Disclosure not optional
For me.
Essential.

It feels strange.
After so many years
Of “just work harder”
To realise that I can’t.
And the only way I can do anything
Is with adaptions
To enable me to cope.

I feel sad that I cannot join in
“Properly”
But I have tried this
For so many years
And always the result
Is disaster.

Prior to my mask disintegrating
I could do 3 days
Before meltdown or shutdown.
Now it is more like
24 hours
Before I need to be alone
To recover.

But I have still not cancelled.
I am still going.
Facing things that terrify me.
But going to a place
I want to be,
Even so.
I said, a couple of years ago,
That if I wasn’t ill,
It would be perfect.
(I only knew myself to be “ill”
Back then).

It’s a place where the old, “strong” me,
The heavily masked me of my early 20s,
Would have flourished
(Although collapsed upon return)
But the me of now can barely cope
Because I am so burned out and mentally ill
After so many years of masking.

And now the place is imbued
With heavy significance.

Had I never gone there
Would I still not know I was autistic?

The question hurts my brain.

I cannot cope with the notion
That something involving people
Is so significant.

That makes me too vulnerable.

Part of me wants to stay away,
Forget.
Part of me needs to go back,
Remember.

Because everything changed.
My entire perception
Of my whole life.

It is all too big.

So I shall focus only on practical survival.
Arrangements.
Food.
Packing.
Loading the car.

I shall count socks
And think about jumpers
And try to organise things
As best I can
Because I know
My executive dysfunctioning
Means I will struggle
With the most basic things
After a short time.

Even the packing is a challenge
Right now!

Doing My Best

So we have come to August. And to the month in which, last year, people started to suggest to me that I might be autistic.

Today is the first anniversary of me starting seriously to fall apart, to not cope. A year ago today I sat in the leader’s seat of a viola section and a remark made to me by the conductor was the last straw after three days of total overload and unknowingly masking furiously without a break and I sat, tears rolling down my face, hardly able to speak. I think I managed to say “I’m doing my best” and that was about it. I was broken. I’ve reviewed that incident in my mind hundreds of times, often berating myself for not being tougher or more grown-up, for not coping as I should have done, for not acting with sufficient professionalism, but eventually I’ve learnt that how I coped (well, didn’t cope) that day was completely out of my control and there was nothing I could have done differently.

At the time, of course, I didn’t know that this meltdown (owing to circumstances, I suspect, a quiet, inward-turned one) was the start of many more that would occur over the next few weeks, nor that it was the start of something that would change my life for ever. I just knew that I felt very very bad and that it was probably some sort of mental health issue. I assumed that I’d go off and have a little rest or something and then be back to “normal” and carry on with life as usual. So I put my viola away after the rehearsal was over and went to have lunch in the dining hall, shaking and terrified, and struggling still further with the sensory overload that I was so used to that I didn’t even know it was making me worse.

I got through the rest of the day, sort of, feeling wrong and dissociated, and trying to do what was expected of me, but the breakdown of my abilities had happened and was irreversible, and by the next morning I couldn’t work out how to dress myself, couldn’t get to breakfast, and I knew I was in big trouble of some sort. My ability to act “appropriately” had fallen apart, and all I knew was that I was a broken down mess.

Fortunately, those around me (and some with whom I was communicating online) were largely sympathetic, and some of them were also knowledgeable, much more knowledgeable than I was, about what being autistic actually looked (and in at least one case felt) like. A year ago today I was only days away from people starting to ask if I’d considered the possibility that I was autistic, having both witnessed my behaviour and listened to my accounts of how the dining room and the vast numbers of people made me feel. This, added to my long history of mental health problems was enough to convince them, and for me to have heard the suggestion from enough people to go away in investigate the possibility thoroughly and to find out what “being autistic” actually meant.

Life has never, of course, gone back to “normal” and I suspect this will be the first of several “it’s been a year since…” posts as the anniversaries keep coming throughout the next year. Had life gone back to normal, you wouldn’t be reading this blog, nor, indeed would many of you have ever encountered me. The meltdown of a year ago today set in motion a chain of events that led to the most life-changing year I’ve ever had.

A year on, I’ve learnt so much. And am still learning so much. I’m hoping that I’ll be able to go back to the same place in a few weeks’ time. I have already returned for a weekend (as I recounted in Going Back) and I’m hoping to be able to go for longer.

There are two ongoing jobs on my jobs list at the moment. One is to finish writing up my assessment for this blog (I’m doing my best with that too, and with responding to comments and so on – apologies that my brain is working on such extended timescales at the moment) and the other is to try to work out what adaptions I might need to get through a week of orchestral playing, living away from home, without completely falling apart. I went last year, as far as I knew, as a very broken neurotypical person (though I don’t think I even knew the word neurotypical at that stage so would never have described myself thus), but this year I’m going back as an autistic person still recovering from a massive burnout.

Which is a huge shift. After over two decades of progressively worsening mental health I’ve become used to the fact that I have “issues” and can’t function like most other people can, but it’s now evident just how disabled I am (and I am disabled, and by more than just society and expectations because my executive functioning is so poor and my ability to care for myself is sometimes almost non-existent – there’s another whole blog post to write about that sometime when I have the capability). And admitting that to myself sufficiently to ask for help is massive for me.

I’m still, also, very much in the process of trying to work out what adaptions I actually need. It’s already been established that eating in the dining hall is beyond my capabilities because of the immense sensory overload, but even then there are still further issues to consider and I’m only just at the start of working out what they actually are. I’m working on them as hard as I can, trying to be as helpful as possible to the people who are trying to help me in order that I can keep playing orchestral music in that environment at all. There will, I’m sure, be times when things still go wrong, and this will be an iterative process as I discover ways to cope in the light of the new knowledge. I’m also feeling a little guilty about needing any adaptions at all, having spent so long just trying to work harder to deal with all the problems I’ve had, but I now find myself in a position where I simply cannot work any harder. I’ve spent my life doing my absolute best at everything I’ve ever done, working as hard as possible, with the result that my energies are spent. My perception of myself is rapidly changing. I have moved from the stage I was at when I wrote Farewell Strong Woman and Expectations Gone, but there is still a long way to go.

As I said to a friend recently, if I say I “can’t” do something, I really genuinely can’t and it’s not that I just don’t want to. But even so, it’s really hard to adjust to asking for help (which I was never very good at) and my social skills and understanding of how other people perceive me are not sufficiently good to know when people are happy to help, and when they’re thinking that I’m just a pain in the arse and it might be better if I gave up trying to do whatever it was because it’s really beyond my capabilities and the adaptions are just too much trouble for people. That’s something I’m still trying to work out too.

What I do know though, is that life has permanently changed as a result of the events of last August, and that returning to the same place, even with the same conductor (which is somewhat scary) and many of the same people, is going to be a very interesting experience if I can manage it. The expectations I had of my future life a year ago are so drastically different from the ones I have now that it still sometimes feels like I’ve stepped into some sort of parallel dream universe and that I’ll wake up one day and life will be back to normal again and I’ll think that was a jolly peculiar dream!

But it isn’t a dream (I don’t think)! It’s a whole new life, a whole new way of viewing my entire life, right back to when I was a very very small. The old life had been stretched and stretched right to its limit (and beyond on several occasions), but that moment, just before lunchtime a year ago today, was when it finally snapped, and people were there to witness it and to make the suggestion as to WHY it had snapped. And from that point it wasn’t about trying to fix the old life, it wasn’t about continuing to try to be “normal” or taking the “advice” that I’d been taking for so long about what would help (and often didn’t). Rather, it was about starting again, with a new set of parameters, building a new life with a different perspective on the world.

And that’s something I’m still doing. A year on from that moment I’m still trying to understand and to rebuild my life – it’s very much a work in progress!

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.

Busy and Hot

When I woke for the first time today, at around four in the morning, I asked myself what I was going to do with the day. I had all sorts of plans in my head for things I might do, places I might go, what I might write. As it is, I eventually fell asleep again, and have now only just surfaced. It is nearly midday and I know that the plans I made in my head at four this morning are, on the whole, not going to happen.

And after a brief moment of beating myself up about it, I suddenly realised why I was so exhausted and why I haven’t written a blog post since Sunday and why I didn’t write the one I wanted to on Tuesday or the others that I still want to write (one in response to something) and why my admin is behind and I owe people messages and e-mails and so on – I have been busy!

The last two weekends I’ve been playing music. It’s been amazing and enjoyable, and brilliant to meet up with friends (old and new) and to play under a conductor who’s an absolute pleasure to work with. The concert was on Saturday night, so I was pretty wiped out on Sunday, but felt moved to write the rather rambling blog post on pride anyway. Monday I went for a short run, which, given my recent running activity, was a big deal. Tuesday I went to visit my best friend. Wednesday I went for a coffee then went to buy a few groceries.

And all this at temperatures above 30 degrees, which we’re really not used to round here, and which drain my energy rapidly. Furthermore, there is no airflow through our flat, so the only way to stop the hot air stagnating and to get any sort of breeze is to use fans. The noise of the fans is really not good for me and overloads me pretty much to the point of meltdown within a fairly short space of time.

Maybe, to most people, that level of activity and a bit of hot weather really wouldn’t be a big deal. When I think back to the “me” of the past, before two huge burnouts, before mental illness was even identified, that “me” would have looked at the “me” of now and thought myself utterly pathetic. I’d have been unable to comprehend why I couldn’t just get my act together and, with enough willpower, just get on with it.

Of course, the “me” of the past being like that, forcing myself to live that “normal” life for so long, doing what was expected of me and using vast amounts of energy and willpower to do so (largely because I assumed everyone else was doing the same), is a large part of what has caused me to have two major burnouts and to have arrived where I am now, with rather depleted functionality and very low energy levels.

Fortunately the “me” of now is starting to learn. And, a few minutes before writing this post, I realised not how LITTLE I’ve done over the last few days, but how MUCH I’ve actually done. And, I had, once again, to remind myself that my mind works a bit differently from most people’s and that I need more downtime, more space, and that things that come fairly easily to many folk, are actually rather challenging and energy consuming for me.

So the plans that I made at four this morning are now dropped, forgotten. Today I need to focus on self-care. I need to stay at home, even though the temperature in the flat is still 28.5 degrees and the place smells stagnant and nasty because neither of us has had the energy to do any serious cleaning and there’s no airflow because it’s so still. It’s not ideal, but it’s not a choice, because I need the solitude. I need not to go through the anxiety cycle of going out and working what to say to people and so on.

If, and only if, I have enough energy beyond that required for basic self care, I shall try to sort out the jobs lists and my diary, and sort out what I need to do, even if I don’t actually do it, but I expect it won’t get much further than that. As I’ve increased my levels of activity, and as I start to gain a bit of functionality as I emerge from burnout and from the whole “discovering I was autistic and getting diagnosed” thing and all the shock and relief and complete re-evaluation of my life, it’s tempting to think that I can just “go back to normal” without any consequences. But, of course, that isn’t the case.

And, interestingly, the blog post I wanted to write on Tuesday was the one outlining how I now am, four months after my diagnosis (it was the four month anniversary on Tuesday). And I’ve sort of gone and written it anyway – at my second follow up appointment it was noted that the increase in activity and my “recovery” carries a price, and that I need to remember that. This week that price has been that my head has become more and more muddled, I’ve struggled to hold conversations and to form words, I’ve struggled more with basic stuff at home, I’ve retreated once again into eating the same thing every day, and my decision-making capabilities have plummeted.

My level of satisfaction with life has also dropped – despite what might be perceived by someone from the outside (I’ve been seen playing music, going for a run, visiting a friend, and having a coffee) possibly indicating that I am happier with life and doing more “enjoyable” things, I’ve actually felt less happy, more frustrated, and generally more anxious. Yes, I’m really pleased that I got out to play in a superb concert and that I went for a run etc. because these are things I love doing, but they still drain my batteries, and a combination of the heat and trying to fit in other stuff has meant I haven’t been able to recharge properly.

Ironically, a viewer from outside who observed how little I’ve stimmed over the last few days might decide that it’s some sort of “improvement” and some sort of “your autism’s getting better” thing. In fact, the reverse is true. I desperately want to rock hard on the sofa for a bit, to wrap myself in compression, and to hide under my fleece blanket – these are all good and lovely things and part of how I cope with having to deal with the outside world. But I can’t cope with doing them at the moment because it is TOO HOT. So not only am I dealing with bad sensory stuff (noise of fans, feeling sweaty and nasty, smells stronger) because of the heat, I can’t mitigate with the good stuff.

So, in an odd way, I’ve looked more “normal” over the last few days, but the effect from inside is that I’m feeling increasingly dysfunctional and anxious and edgy and irritable. This “how autistic people look vs how they feel” thing is something I’m increasingly thinking about and want to write about some day, because I’m beginning to get the impression that the two are much more likely to be inversely than directly correlated.

In the meantime, I do observe that four months have passed since diagnosis, and that life is continuing to change. The people who wrote Tiny Glimmers back in January and Eight Weeks On back in April would have been amazed by what I have just written above and by what I’ve done in the last few weeks, so even where I’m still failing and still not achieving what I want to achieve (that will probably always be the case for me as my natural inclination is to constantly aim for more and to push to achieve goals and so on), I’m actually achieving much more than I was, which is, of course, progress.

But today “progress” will be achieved by resting and gentle tasks and self care, not by pushing on through. That way, I hope that I’ll be able to start to recharge my batteries enough to be able to do more running and music and socialising and to be able to think clearly enough to deal with admin and communication and to write more of the blog posts that I’d like to write!

A While, Maybe?

I’m still a bit behind with quite a lot of things, including stuff that I’d like to write here. Technically, today should be another rest day after the busy two-day weekend I’ve just had, especially as it’s the first time I’ve been out of the house for most of the day for two consecutive days in a very very long time. I’m also conscious that the weekend was preceded by a busy week and that my head isn’t working quite well enough to say what I want to say yet. The thought to word translation mechanism isn’t running smoothly – it feels as though it needs a drop of oil on the machinery or something.

It was an interesting weekend. Saturday I managed fairly well, although forming words became more and more difficult as the day went on, and by the end of the evening I was finding trying to translate my thoughts really laborious and hard work. Sunday morning was difficult – even my comfiest and loosest clothes felt scratchy and constraining, and I spent most of the day feeling gently nauseous. I never even attempted to remove my darkest sunglasses – even through them it was as though the brightness had been turned up to somewhere beyond maximum, and when I got home it felt as though my entire system was in overdrive. I rocked hard and bashed myself on the back of the sofa for a bit then fell asleep under my weighted blanket, which helped.

But it was a successful weekend. I managed to do approximately fourteen hours of orchestral rehearsal and concert, and both my playing and physical robustness were pretty reasonable. Not as good as they were in the past, but better than I expected in the current circumstances.

There were friends and allies there, including an old friend I hadn’t seen for years, and with whom it was good to re-establish contact. I wasn’t as social as I’d have been in the past, and not as much as I’d really like to be able to be for both networking and just getting to know folks purposes, but since I’m now officially socially inept rather than merely empirically so, I feel rather less guilty about going off on my own to eat lunch, taking a proper break from people now and again, and sitting in a corridor wearing ear defenders, rocking back and forth on my own. This is all OK now, and a great relief too.

I could easily have sat and sobbed about half way through Sunday afternoon, but didn’t. Having an explanation for why I feel so suddenly emotional about apparently nothing some of the time really does make it easier to deal with. Makes it easier to rationalise in my brain. It’s actually OK just to feel wrong sometimes, especially when I’ve been out in the world surrounded by people and noise and lights for hours on end. There’s a reason for it.

And years of musical training help – focus in on the playing, which is what I do, which is why I was there in the first place. In the same way as I went to the autism conference because of the intense interest and need to learn and pursue that interest, I keep returning to the world of orchestral and chamber music playing because I am driven there by that interest and the need to keep doing it and keep learning. Music is probably the longest lived “interest” I have and has persisted throughout my life, only vanishing when I’ve been severely depressed or deep in burnout. Trouble is, orchestras inevitably involve people – so I have to do quite a lot of work (being with people) in order to get access to the playing!!!

The aftermath of the weekend is interesting. I’m very tired. My word translation is off. I can feel myself struggling to say what I want even interacting online. I’m more triggered than usual by things – someone on facebook extolling the virtues of “cooking from scratch” made me really angry (I didn’t comment, just ranted at my husband a bit – he’s used to it). I drank rather more than I should have done last night. I’m still finding sounds too loud and lights too bright. And my executive functioning (ability to get my act together and do stuff) has taken something of a battering, as has my task initiating and switching ability.

None of this is surprising, given that I’d had an evening rehearsal the week before, then the final meeting with the autism assessment service, then stayed up all night watching the results of the General Election as they were announced, and then spent a weekend out in the world. Those things between them have used up nearly all my energy in the past week.

However, what’s different from how things have been for a long long time is that allowing the language system and functioning system and sensory system to decline, and just going with it now I know what’s happening, means that I am not ill after such activity as I would have been in the past. Not making myself chat to people at lunch breaks, spending time stimming quietly on my own, only making eye contact when absolutely necessary, not forcing words in order to “be polite”, and so on, all mean that I’m not feeling that awful “sick” feeling that I’m so familiar with to anything like the extent I would have done in the past. I probably appear slightly “odder” from the outside, but on the inside I’m actually calmer, and also, currently, considerably less depressed.

And I’m tired yes, but not quite so bone-numbingly exhausted as I might have been. Partly, I suspect this is because I’m continuing to recover from burnout, but even though I’m going out into a world that won’t always understand me or the way I work, the fact that I understand myself already removes a whole load of pressure, so this huge internal pressure I’ve always felt to “succeed” is now off.

I realise this is another rather erratic rambling blog post. And I’m still conscious that there are things that need sorting here. I’ve also been sporadic on the facebook page and not had much energy for twitter. I did manage to write one of the “poem things” after the first evening rehearsal though. At the time I didn’t manage to post it, so I’ll include it here.

The outside world,
Even when friendly
And something
I want to do,
Is sometimes
Utterly
Utterly
Exhausting.

Last night
I returned
To an evening rehearsal.
People
Noise
Lights
So. Much. Input.

This morning was spent
In bed.
Mostly asleep.

When I got up
And dressed
My clothes felt like
They were trying
To suffocate me.

It took many attempts
To write a Facebook status.
I have still failed to make
A cup of tea.
Even filling the kettle
Beyond me.

I don’t know how long
It will be before
I have enough energy
To post this
On the blog.

A while, maybe?