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!

Pride

Today is, the internet informs me, Autistic Pride Day!

This is another of those things that, until this year, I wasn’t aware existed. Just like autism awareness day / week / month or whatever, I was pretty much oblivious to all of this stuff, just as I was oblivious to the fact that I was, it turned out, autistic!

I really should pay more attention!

I’m really not sure I can claim to be proud to be autistic, since being autistic was an entirely effortless process on my part – all I had to do was be born! The processes that meant I have an autistic brain went on all by themselves without me having to do anything at all – I just existed in the only way I knew how!

I’m not quite sure even that I can be proud of surviving this far while working to survive in a world that turns out to be a bit more challenging for me than it is for many others. I’ve had several times of trying not to survive and my survival through them has been entirely down to luck. I suspect I only coped with such high anxiety levels because, to me, they were just normal!

Neither do I feel that I have yet done anything much else to be proud of, although I’m at least sufficiently aware to know that some of my friends will tell me off and say “Yes, but you do xyz and it’s amazing…” and so on! I’m still working on this bit, and it’s probably the area where I have the most internalised ableism towards myself – I know I haven’t fully dealt with the issues discussed in Expectations Gone and Career Snake!, and that that’s still very much work in progress.

Furthermore, the society in which I live generally measures value in terms of financial success – it’s all very well being told “well, you write a nice blog” or “that was lovely that you played some music”, but if I show up at the checkout in the supermarket and tell them that I’d like to pay for my food with “nice comments”, then I’ll go hungry. The part of me that was brought up to believe that I would earn my own money and be “successful” in that way is still fighting with the part of me that knows just how little I contribute and how I am entirely dependent upon handouts from others to survive. I can’t even claim to be pulling my weight domestically – I don’t raise kids because I couldn’t have them, and my husband does about 90% of the domestic work in the flat!

Anyway, I digress. This is supposed to be about pride. And, perhaps, pride in a rather different sense, but because of the way my mind works it’s going through all sorts of “pride” things and I now have a video clip going through my head that shows a large group of rather handsome lions roaming around a grassland somewhere in what is probably Africa! But I’m not supposed to be blogging about lions!

So, returning to what the day is supposed to mean, it seems that it’s meant to be some sort of celebration of neurodiversity. There are probably marches and things and parties or whatever, that I’m unlikely ever to go to because I’m not really a marching sort of a person – more of a blogging sort apparently!

It also seems that one of the basic tenets of the movement is that neurodiversity in general (and presumably autism in particular) is part of a natural variation in human existence, rather than some deviation from the norm that requires a “cure” (I’m still at a loss as to what people who discuss “curing” autism can possibly mean – it just makes no sense, given that it isn’t an illness or a disease).

It also seems to emphasise the notion of autism as a “difference” rather than a “disability”. I’m still forming my ideas about difference and disability, and still getting to grips with the whole “medical model” and “societal model” thing. I class myself as disabled (and have done for years, ever since it became apparent how my mental health issues affected my functioning), but I’m still trying to figure out to what extent the disabling effects of me being autistic and mentally ill are a result of my inability to function in certain ways and to what extent they are a result of the society in which I live. I haven’t even managed to sort out what bits of my “disability” are down to me being autistic and what bits are the result of mental illness. There’s a lot of work still to do.

The more I think about all this, the more I realise I don’t know, and the more I feel like I’m only just scratching the surface of issues about minority groups, privilege or lack of it, models of disability and so on. I’m a musician and scientist, not a sociologist, and I’m a bit out of my depth at the moment. There is a lot of observation and learning and thinking still to be done before I can really start to analyse it all.

The other basic tenet of the autistic pride / neurodiversity movement seems to be that it is led by autistic people themselves and is not a day for organisations led by non-autistics! This, I really hope, is something that will prosper. It’s so true that so much autism research and so on is still led by non-autistics and that there is still such a long way to go in really understanding (as I discovered at the recent conference) what it’s like to live as an autistic person in a world that is, for want of a better expression, distinctly sub-optimal for our neurology!

Of course, given the situation I’m now in, I’m actually rather fascinated to discover what it might be like NOT to be autistic – I feel, to a large extent, that I’m just me and always have been, and what I actually discovered when I found out I was autistic was not that I was different, but that 90+% of the rest of the world was different! From my perspective my autism diagnosis was effectively the same thing as most of the rest of the world receiving a diagnosis of allism!

I’d really like to spend a day living with a neurotypical head to see what it was like because it would be fascinating to compare with my own experience. Are there really people who sit still on chairs and don’t find it deeply exhausting and uncomfortable? Is it actually true that there are folk who can chat in small groups without trying consciously to compute every single thing they say and work out when they should contribute to the conversation? I’d be fascinated to discover – though I wouldn’t want to commit to more than a day because I’ve been used to my own head for quite a long time and there might be all sorts of things about my neurology that I’d suddenly miss – I don’t even know at this stage what they might be because I’m so used to my normal being my normal and so unaware of how other types of brains might work! Perhaps the fact that I worry little about things that seem to vex many people is part of my being autistic and I’d really miss that freedom of thought? Who knows? But I do know that I’ve discovered a contentment since getting my autism diagnosis that’s rather nice and that I’m not in a hurry to mess with it!

Anyway, I digress again. And now return to the tenet of autistic people themselves having a voice and being part of the discussion of neurodiversity. That is, of course, part of something that I do manage to do a bit (being a blogger, not a marcher), and, as I discussed in my final conference blog post, maybe an area to explore for the future. Who knows what I’ll be able to do, or what impact it might or might not have, but it’s a possible direction for the future and if I can ultimately be helpful to other members of the autistic community, which I have suddenly, and rather unexpectedly, become part of, then maybe that really will be something to be proud of!

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!

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?

Six Months Public

I don’t have time to write a long blog post right now as today I’m going out into the world to play music, to continue the process of discovering just how much I can push myself to do things and what adaptions I might need in order to be able to live the best life I can, and to keep rebuilding my life, which fell apart so spectacularly in the latter part of 2016.

However, I wanted to post something, to mark the six month anniversary of publishing The Discovery, which was the post in which I disclosed my autistic identity to anyone who cared to read the post. Only two posts preceded it, an introduction, and a bit of background, and I could never have imagined, six months later, just how much I would have learnt and written and connected with other bloggers and people in the autistic community. On that day, back in December, I was, to put it mildly, extremely nervous about what might ensue, and I still, at that stage, had no idea that the responses from most people I know would mainly be of the form “Well, of course you’re autistic, you mean you didn’t know” or “Well that makes total sense”!!!

I wrote about Disclosing Identities back in January, and I stand by what I wrote then. For me, full disclosure has been relatively smooth, although I am still getting back out into the world (like today) and I am still working on getting a smooth and brief script together to talk about being autistic in ways that are most likely to be understood and appropriate when discussing with people out in the world. I’m also still very much at the start of the process of working out what adaptions I might need in order to successfully participate in various activities and not end up having a meltdown or ending up too ill to function.

But, six months on from what was the real start of this blog (and might, at the time, also have been the end of it), things are OK. I am yet to be told that I “can’t be autistic” (or any similar phrase) and I’m still wondering whether that’s because I do, in some ways, fulfil autistic stereotypes (I do rock back and forth quite a lot, I am fairly random with eye contact, I do sometimes have full-blown meltdowns in supermarkets, and, yes, I do like mathematics and find it calming), or whether I’ve just been monstrously lucky to be surrounded by such supportive people!

Whichever way, six months from the nervous day on which I posted that first post, life now feels very very different. Still very much a work in progress, but a long way from how it was back in December.

Energy Budgeting

I have a fairly busy week coming up. There are things in my diary that I’ve agreed to do that involve other people and are therefore “fixed” and would cause stress to me and others to cancel or change. There are also jobs that I really do need to do this week because not doing them would cause consequences (paying bills, dealing with various messages, making decisions about what to commit to over the next few months so other folk can plan, and that sort of thing). So I’m a bit stressed, and a bit anxious about how I’m going to cope with it all.

Part of what has happened over the last few weeks is that my state of “wellness” has shifted slightly. I’m far from “well” or able to live anything approaching what might be thought of as a “normal” life, but I’m no longer so ill that it’s obvious my life can only consist of getting out of bed, staring at the telly for a few hours, and then going back to bed again, which was how it was a few months ago. I can now manage to leave the flat on my own from time to time, even though it exhausts me, and, consequently, I’m doing rather more than I have been for many months.

But this increase in activity comes at a price. Each time I increase what I’m doing, a bit of functionality drops off somewhere else or I end up, on the days I’m not out in the world, back to being so ill that I can barely get out of bed. I managed to get to the conference the other week, and then to write it up as fully as I could, but the result was that I then spent two full days barely able to do anything and retreated back under my blanket on the sofa, stimming almost constantly, and not really managing to eat properly. You might have noticed that, as I’ve been doing more I’ve been blogging less. I only have so much energy and cannot use it everywhere at once.

And so I need to budget my energy. If I’m going to have enough energy to do the things I want to do in life (or, at least, as many of them as possible – I’d really have liked a full-time job and a family and to have been able to have a hobby or so on top of that, but I’m realistic to know that, for me, those things simply aren’t possible), then I’m going to have to save my energy rather carefully and work out what things drain my energy and what things give me energy, and how I can balance the two.

Which is, of course, why, stupidly, I’m up and out of bed before 10 in the morning this morning, too much in my head to go back to sleep, and now sitting at the computer writing a blog post about it!!!

The irony is not lost on me that I’ve woken up this morning feeling not too bad and am struggling to rest in the way that I know I should be doing if I’m to get through the rest of the week without falling apart. I’m just hoping that I can get the important jobs like bill paying done today so that at least I can allow myself to crash out later in the week if I need to, and I can spend all available energy dealing with the inevitable anxiety that seeing people (some of them new) and going to places (at least one of them unfamiliar) later in the week will inevitably cause.

It’s also particularly difficult to budget my energy at the moment because I don’t actually know how much energy I have to start with. In terms of spoon theory, I’m currently being given a number of spoons at the start of each day but I don’t know how many there are (I’m sure others with variable conditions will relate strongly to this feeling). In terms of monetary budgeting, it’s like working with a bank account without a balance available – I might have enough in there to go on a spending spree and buy whatever I like today, or I might go out and try to buy essential food and not have enough to pay for it. I simply don’t know, so it all feels like a bit of a guessing game right now and all I can do is keep trying to find out where my limits are.

What I do now know is that the only way to manage these energy levels is to let them settle as I stabilise after burnout, to work out just how much functionality I have in what areas, and then to start to look at how I can optimise life in general to be as good as it can be. I’m still accepting that it’s never going to be the sort of life I anticipated it would be when I was in my late teens and early twenties, nor the life that many other people expected me to have at that time. I’m still trying to figure out what I can do and get to a point where there is some sort of stability in my life. Currently, it all feels rather unknown and rather challenging and rather uncertain.

I could, of course, decline the offers to meet people, to play music, and to go out to dinner. I could give up the idea of ever running in big races. I could abandon plans to continue studying and learning. And I could decide to spend the rest of my life watching daytime TV, scrolling through social media, and playing with the animals. It became evident years ago that I can’t hold down a life-sustaining job for any length of time and I am not able to live independently. It also became apparent some years ago that having a family wasn’t going to be in my list of options either.

However, I’m interested enough in things that I don’t want to abandon all my goals and I do want to get back out into the world as much as I can. But, unlike in the past, I now have knowledge that makes me experience almost everything in life very very differently. I feel like I almost went into hibernation back in September 2016, and I’ve spent months, mainly hidden away in the flat, exploring my real identity, finding autistic communities online, learning the language of the autistic world, discovering things about my past, learning to listen to my body, having hundreds of “lightbulb moments” where I suddenly realise that there’s something ELSE I have always done because I’m autistic, and also allowing myself time and space to come to terms with what has happened and to recover from the huge burnout that had been building for some time.

But getting back out into the world uses energy. It uses energy in unexpected ways. Every time somebody asks me the question “What do you do?” it saps my energy levels massively because I have no simple answer and have not yet developed a reliable script. Every time people expect me to have “normal” social skills, or to chat in a group, or to be able to process the sheer amount of speech in the world, I get exhausted. Every time I have to explain because I’m meeting people who don’t know me online and don’t read my blog, it’s knackering. Every time I hear someone using person first language or functioning labels and so on I want to scream at them, I want to make them understand, but that all uses energy – things that are taken for granted in autistic communities online are totally foreign to most people in the outside world and, as is so often the case, the only way to deal with it is self-advocacy (ironically, I have a communication disability but in order to get my needs met in the outside world I have to be able to communicate effectively in a way that is exhausting and difficult to me)!!!

None of this surprises me, of course. Some of it I’ve known for years, and some of it is very easy to deduce when I think back to a year ago when I’d never heard of “burnout”, “stimming”, “inertia” and so on (I promise I’ll write proper blog posts explaining terminology at some point – it’s something I really want to do, but I can only process all these things at a certain pace and I can’t do everything at once). I know that there’s no reason why most people would have the faintest clue of what it’s like to experience the world as I do (and, of course, it turns out that I don’t know what it’s like to experience the world as they do either) and I’m now having to work out the interface between me, now unmasked, totally public and “out” and determined to be as authentically autistic as possible, and the world outside that won’t always totally understand me.

And it all uses energy. Lots of energy. And I don’t know whether I even have that much energy much of the time. But, ten months after discovering it was very likely I was autistic, six months after the low point of the aftermath of the first assessment going so badly wrong, and nearly four months after diagnosis, I’m starting to gather just enough energy together to do a few “normal” things out in the world. And since I’m no longer masking, or pretending, I’m hoping that I’ll gain quite a lot of energy from that – enough to compensate for the energy I’ll use doing all the necessary explaining.

So energy budgeting is very much something I’m thinking about at the moment. I’m starting to gather resources, starting to think about how I could make a system that will work for me (much like my old “mood diary” did so effectively in managing my bipolar disorder) in monitoring things, and what some of my goals for the future are going to be. Since I now know I have quite substantial limitations on what I can do because my neurodivergent brain needs so much energy to process “ordinary” things, I’m going to have to choose my goals and activities quite carefully!

This still feels like very very early days. There is still a long way to go. But it’s a start!