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!

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.

Coffee Please!

Yesterday I shared an article on my facebook page, along with a few of my thoughts and a few of my husband’s thoughts. Several of my friends made comments, and what struck me was the difference between the comments from my autistic and introvert friends and my non-autistic and extrovert friends. I was going to reply to a couple of the comments on the thread, but, as the reply formed in my head, I realised it was really much too long for a facebook comment, so I’m now turning it into a blog post instead!

The original article had started with a picture of a board outside a coffee shop, stating that customers who went in and said “Small coffee” would be charged $5, those who said “Small coffee please” would be charged $3, and those who said “Good morning, how are you, please could I have a small coffee” would be charged $1 (or something like that – the values and exact statements might have been different, but the sentiment is the same). The point of the article was that baristas work damn hard for very little money and that they are, apparently, grateful for recognition in the form of people saying please and exchanging the kind of small talk pleasantries that strike terror into the souls of those of us who are neurodivergent.

And so, of course, the article had been picked up in a number of neurodivergent groups and cited as “ableism”, and I eventually decided to share it on my wall despite the potential for triggering and using up valuable spoons and energy dealing with the fallout of all those who might accuse me of being rude and having no manners. I shared it with my own short commentary added to that of my husband, who had also shared it. The gist of what I said was “This is the sort of thing that would seriously put me off even going for coffee on days when I’m struggling to cope. The message I receive from it is that the world is not for me. I should stay home because people think I’m rude. It makes me feel like giving up on life” and the gist of what my husband said was “This is why the neurodivergent and those disabled by mental ill health can’t have nice things. When we have dismantled every barrier, “manners” will remain as the last bastion of exclusionary entitlement. How’s about this – everyone with the neurological privilege to demand good manners start campaigning for baristas to be paid the wage they deserve for being the life-giving superstars they are; and for coffee shops to be accessible to those for whom eye contact or social interaction are as draining as thinking.”

Several of my friends had shared the article without any sort of commentary. And a couple said so on my thread and said that the difficulties autistic or very introverted people might have with such things hadn’t even occurred to them. This was not unexpected – if you are able to speak without rehearsal and remembering to use words such as “please” is something you don’t have to do consciously, with effort, every single time you do it, because you know, for some reason, that people like that sort of thing, then it wouldn’t occur to you that a sign outside a coffee shop telling you that you have to pay more for coffee because you struggle with social codes and so on, would be, on some days, sufficient to make you burst into tears and vow to give up coffee for ever because the whole business of trying to get it was just so stressful and you were so frightened of getting it wrong (and, of course, because you can’t hold down a job because of the same issues that cause such stress over buying a coffee, you don’t have enough money to pay the expensive rate if you screw up and get it wrong, which, given that your anxiety levels are by now through the roof, having read the noticeboard and realized that this is going to be a difficult experience on which you will be judged, you probably will).

So, I got to thinking about this, ironically, on the way home from having a coffee at my usual coffee shop (where, thankfully, I know the protocols and I had enough energy to ask for coffee in an appropriate way and because the place is familiar and I always eat the same things for breakfast there were no decisions to be made or other problems to be dealt with (I have, over the years, frequently gone somewhere to try to access food and gone away still unfed because simply asking for food or deciding what to have was too difficult)). I tried to imagine what it might be like to go out for coffee and to be able to just ask for the coffee with a load of fancy language that you hadn’t rehearsed several hundred times in your head during the drive to the place. I couldn’t, of course. Improvised speech seems like an extraordinary concept to me (and I assumed, until last year, that it simply wasn’t something that anyone did – only when I started questioning non-autistic people about their speech rehearsals on the way to social events and when they looked blankly at me and didn’t seem to understand what I was on about, did I realise that there are people who are able to improvise conversations on the spot without getting utterly shattered by it and having to go home and sleep for hours to recover)!

So I translated it to the area in which I am, rather seriously, privileged. My mental health is poor, my executive functioning is shockingly terrible, and my social skills are either lacking (if I’m saving spoons) or practised and exhausting (if I’m masking and doing what I have learnt over the last 40 years is the “correct” thing to do). BUT, I’m physically robust, and fairly fit, and probably of more than average strength for my age. I constantly use the huge privilege of a robust physical body to compensate for my social and mental deficits – at the autism conference I was able to go all day without eating or drinking properly or going to the toilet (If I’d been diabetic or had continence issues that wouldn’t have been the case). I think nothing of walking or jogging several kilometers which means that I can basically avoid using public transport in everyday life – if I have to park the car several miles away from where I’m going then it’s no big deal – I’m great with maps and I can walk a long way (I can even climb over gates having done 90km in an ultramarathon when I’m at my fittest). If I see a big flight of stairs then my first thought is “Wahey, hill training”. This is all because I am massively privileged as far as physical ability is concerned.

And so, just as my non-autistic extrovert friends don’t notice how intimidating signs about “how to ask for coffee” are to me, I skip around town and bumps in the pavement or kerbs or steps or flights of stairs or any of those things don’t even register on my radar unless I consciously think about them. BUT, I constantly remind myself, and am reminded by my friends with physical disabilities (whether they be things such as heart conditions or whether they require wheelchairs just to get around), that these things can be huge obstacles. Maybe I’m at an advantage here, because it’s easy to visualise how difficult it must be for someone in a wheelchair to deal with a step, but much less easy to imagine how difficult it might be to deviate from your usual script when faced with a sign outside a coffee shop?

I absolutely don’t blame those to whom it has never occurred, because for many of them, how could it have – I know it from the inside so it’s easy for me to understand, and one of the reasons I write this blog is to try to explain to others what it’s actually like and to assist with understanding. I’m also all in favour of people not ACTUALLY being rude to other people. The notion of being rude to someone who’s making coffee for me is abhorrent to me – I’m deeply grateful to them for doing something for me that I can’t do myself and for making my day better with a cup of something delicious. Maybe I’m just not always able to express that gratitude as perfectly as I should, according to the original article, be able to? Maybe this is where my natural language differs from that of many other people – my husband brought me an unexpected kebab last night and I didn’t thank him in words – I flapped my hands at him, because that’s the language we use at home, not the conventional language of society that we use consciously when we step out of the door!

I’m running out of words at this point and have now backed myself into a corner and am also desperately worried that I might have offended somebody because I’m not well enough versed in the language of disability to be sure that I haven’t screwed up. If I have, then I apologise profusely, because, contrary to the implications of the original article, if I get it wrong, I really don’t mean to. My lack of eye contact and social interaction with strangers is, at the moment, the only way I can actually manage to get out into the world at all and do anything – it’s a protection mechanism to prevent my mental health disintegrating further than it already has.

The last thoughts I had on my drive home from coffee this morning were of two of the “risk factors” that have been identified on my report following my autism assessment. One stated that I was at significant risk of being misunderstood and thought badly of because my levels of social interaction might cause me to appear rude, and the other stated that in order not to appear rude I was inclined to make huge efforts to follow social codes consciously and that doing so was seriously damaging to my mental health! Over the years I have, of course, tried so hard to get it right that it has left me burnt out and hardly able to function at all.

Anyway, whatever I might have got wrong here, I got one thing right – this really was a bit too long for a comment on a facebook thread!!!

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!

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!

Leaving Home

I know I must be terribly terribly ill.
I feel dreadful, sick, and panicky.
Maybe I should cancel? Not go?
Send an e-mail. Say I’m unwell.

Why did I agree to this?
A stupid moment of madness?
What possessed me to think
That I could go out into the world today?

I sweat, and my heart pounds
As though I had been training hard.
Everything gets louder and brighter
And my mind can’t focus on simple tasks.

I work though the list,
Checking that I am dressed appropriately,
Forcing myself to eat, a crumb at a time,
To avoid an energy crash later.

My shoulder aches and I am certain
That it is damaged and injured.
Just like my legs always are
A few days before I run a big race.

My brain fights back.
These injuries are manufactured in my mind
I know that, just as I know they will vanish
And be forgotten once I get home again.

When the sick feeling subsides a little
It is replaced by utter utter exhaustion
As though I have not slept
For months on end.

I struggle to move or to motivate myself
Again, my brain fights back.
I know these feelings because
They have been normal for as long as I can remember.

There is, of course, the risk that I won’t cope
And will end up in tears on the floor,
Totally melted down
Unable to function.

Maybe the unpredictability
Of my coping mechanisms
Is what leads to such huge anxiety
Every time I try to leave my home?

Maybe the effort of fighting the anxiety
Makes it even worse
And uses up even more of my
Scarce energy?

All I know how to do is to continue
To live with it, as it is.
As I always have,
And probably always will.

I always assumed that everyone
Went through this same process
Every time they left their homes.
I still do really, because it is so normal.

But my only alternative is to give up
To stay at home for ever,
And never to take up opportunities
That so often lead to good times.

So I keep going, and live with what is
Because I like to play music, to run,
To see the outside world,
And to spend time with friends.

And my brain continues to arbitrate
In the debate between
Anxiety and low energy on one side
And continual FOMO on the other.