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.

Good, Bad, Random!

It’s as if my head is desperately trying to prove just how true the oscillation theory actually is. Thinking back over the last few days:

Saturday – was a fairly good day. I knew I was a bit on edge, but still managed to get out and about to visit my best friend then to meet my husband for coffee. I was tired, and very much in need of time in the dark under my weighted blanket, but I was OK.

Sunday – was a bad day. I felt distracted and ill-at-ease all day. I achieved very little aside from watching multiple episodes of Columbo, a James Bond film, and The Terminal. I spent a lot of time under my blanket on the sofa, stimming in one way or another almost constantly.

Monday – I wrote the post about the oscillations. I then went out for my first proper run in months, just a single kilometre, but such a massive achievement from where I was. I came home and updated my calendar and replied to a few e-mails and had a generally good and productive evening.

Tuesday – was a terrible day. The neighbours were doing some DIY in the next room (we live in a flat) and were banging and drilling and scraping all day. I tried earplugs, headphones, ear defenders, but the feeling of all of them touching my ears was worse than the noise. By 4 in the afternoon I was a mess, my sensory system totally overwhelmed by the noise and feeling of closeness of the neighbours, and my brain seeming to be doing somersaults inside my head. It wasn’t good.

And I reacted in one of my more maladaptive ways to feeling so terrible – having hardly eaten anything all day I decided to have an early glass of wine, which led, eventually, to, well, rather more glasses of wine, and then even more, stronger, cheaper, wine… (you get the picture). I probably made a total arse of myself on facebook, but I did survive some fairly dark thoughts, so for that we must be thankful I guess!

It was also one of those days where I couldn’t write coherently. I find those days incredibly frustrating – when my head is full of thoughts and I can’t turn them into any sort of useable form. I started 4 blog posts / poems. Only one of them makes even vague sense, and it’s not exactly fun stuff for parties. I have a small collection of the darker stuff that I’ll perhaps try to sort out when I have enough energy to do it, but I’ll have to be in the right frame of mind for that.

So, ironically, just as I posted the post about oscillating, the last few days have been a microcosm of my life over the last 9 months or so. Good – bad – good – bad, and now, we’re back to good!

Today I feel much better. My head is clearer, I’m making myself eat food and drink sensible things like water and milk and tea, and I’ve washed my hair and checked that I’m wearing trousers without holes in in anticipation of spending the early evening at a “poetry and mental health” event which my husband is organizing. Also, the neighbours are quiet today, which helps immensely.

There are still unfinished blog posts in my folder, and there are still things I’d really like to be doing from the jobs list, but at the moment I’m happy to take whatever progress I can get. On days like this, when I feel somewhat inadequate that I haven’t yet written something really helpful (this blog is such a strange mixture of articles, journal entries, personal accounts, memories, random poems and so on), I can remind myself that I’ve only been doing this for a few months and although I really want to produce helpful material and a beautifully crafted set of posts, I also started this blog as an outlet for my thoughts, since I have no therapist nor much else beyond an exceedingly tolerant husband, one or two real-life friends, and those with whom I’m connected on social media.

I’m also really still getting used to the idea that I am autistic, I’m still working out how to interact with people out in the world in a way that is both possible, so that I can do the things I want to do, but will not break me as badly as it has done in the past. This is the start of the process, a time of experimentation and working out how to live my new life as an openly autistic person. I keep expecting myself to have all the answers, but I forget that I’m still very much at the start of this whole thing and it will take time before I can be where I want to be, both as far as being any sort of autistic advocate or gaining as much knowledge about autism as I want to, and simply being able to live some sort of life that works for me and I can cope with.

And I’m trying to resume bits of my old life too – playing music, running, studying, maths and science, a bit more attention for the animals, participating in events, seeing friends, even sorting out the chaos that is our flat, and so on. But I know that I have to tame my natural instincts, which are to plunge headlong into absolutely everything the minute that I have the slightest bit of energy (though that taming really doesn’t come naturally).

And to round off this somewhat random and oscillatory blog post, I’ve just looked at the date on my clock and noticed that it is exactly five months ago today that I published The Discovery and announced publicly that I am autistic, having spent the preceding four months getting my own head round the idea and discussing it only with a very few people. It was an interesting day, and the reactions from people who knew me were interesting too.

I’ve come a very long way since then. Things that seemed really wild just a few months ago seem to be such an established part of my life now. Life really has changed a lot.

And, on balance, it’s changed for the better!

Feeling OK

I have pushed myself a great deal in the last week, used a lot of energy.

I am tired, my senses are not quite right, and my ability to discuss and to write what I want to is impaired.

I started three blog posts earlier, never getting further than a paragraph into each of them.

There is so much information in my head, and it needs organising but it is stubbornly refusing to yield to my efforts to organise it.

I have a list of jobs I want to do. Not even things that are particularly unpleasant, but I am finding them impossible.

My anxiety rises when I even think about them.

Fortunately they can wait until tomorrow without triggering disaster.

I still want to organise this blog slightly better and tidy it up a bit.

But today is one of those days when even making a cup of tea is difficult. One of those days where my mind will not be persuaded.

The consequence of pushing myself is loss of ability and function.

And a certain measure of frustration.

But, even having said all of the above, I am not feeling particularly low about it.

Even though I feel ill from anxiety, and it took until four in the afternoon for me to manage to eat anything.

Even though I haven’t achieved what I wanted to achieve and the jobs list has rolled over to tomorrow.

I am not beating myself up about it as I would have done in the past.

I am slowly learning that the standards by which I have been judging myself for the last forty or so years are not appropriate for me.

I need more time than most people.

I need more rest than most people.

I need to limit my contact with other people.

And that’s OK.

It is not my job to accommodate everybody else and to try to do everything their way – I already do so much of that and have been doing so for years.

It’s not my job to answer every single question on Facebook – even though I might know a good answer.

It is not always my job to be an autism advocate, correcting language that I know is not preferable, trying to explain everything to everyone all at once.

It is not always my job to fight ableism, not always.

Sometimes I remember that part of being autistic means I need time for me.

I need time to recover from social things.

I need time to stim and to watch the same film over and over again.

And I am starting to learn all this, starting, slowly, to learn to be myself and not to feel guilty about it.

Starting to realise that others are wrong when they tell me what I should be doing – because they are using a set of parameters that don’t work for me and others like me.

And letting that stuff go. It is not for me.

Because I really am different. And trying to fit in and be like other people all these years has led to constant disaster, because it was all an act.

And starting to process all this, starting to allow myself to absorb this information fully, is good.

So the jobs list remains intact, and the place remains untidy, and the memes I still want to make remain unmade.

The more “intelligent” blog posts will have to wait, and once again I am simply writing what I can.

I might be knowledgeable about what it is like to be autistic, and I might be able to help others understand.

But that knowledge comes from my being autistic – and having discovered I am autistic, and decided that I am going to allow myself to be as fully autistic as I possibly can, I need time to explore how that works for me and how I now interact with the world and conduct my life.

And I am still getting used to talking about it to those who don’t know, and might not understand. I am still finding the words to explain.

And that’s OK.

Because I am recovering, both from forty years of pretending and now from a busy week of pushing.

And I know why I feel like this.

And why I need more time.

And in some sort of bizarre way, I am just content to be me.

It wasn’t the life I expected. It wasn’t the life I trained for. But it is the life I got.

And accepting it and working with it makes so much more sense than the constant fighting of my previous life.

This is just a fraction of what being autistic and knowing about it means to me.

“Autistic” is not a pejorative label, nor a disaster, nor something for me to hide.

It is permission to be myself.

And to feel better.

Some days, like this one, when I’m not achieving, and I allow myself not to worry about it, and I start to accept this new and different life, it really does feel OK.

A Short One

I have just been out for a walk.

This might not seem like particularly startling news. Especially when I tell you that my walk was just 2 kilometres long and I was out for under 20 minutes (the 2km actually took 18 minutes, 24.7 seconds).

The fact that I know that much detail about my walk (at an average pace of 9:12 per kilometre) will tell those in the know that I didn’t just amble round the block randomly, but I took my Garmin (running watch) and measured time and pace and so on.

I also wore my running shoes. A pair that have done a couple of marathons with me.

All this might seem rather irrelevant, and a slightly strange blog post. Maybe so.

But it is important.

Because it is the start of returning, properly, to life. It is a tiny bit of something approaching “normal” in this huge sea of autism and mental health and newness and unfamiliarity.

Aside from one short run in January, I have not run since November. Granted, I didn’t run today, but I took the first few steps (2043, according to my Garmin) towards it. Back in January I was making a desperate last-ditch attempt to be well enough for my spring marathon (and ultra) season, but I really wasn’t well enough, and quickly gave up.

So now I have abandoned all races until at least the autumn. And I am starting over. And I am making it as easy as possible to start over.

Because at the moment I am still struggling with inertia, massively. I’ll write properly about autistic inertia sometime – it’s the feature that means our brains are very good at persisting with things, often for hours on end, but are terrible at starting and stopping or switching tasks. The effort needed to start something is huge, and takes a lot of energy.

Furthermore, I still have huge anxiety when leaving the flat. My senses are still in overdrive from the burnout. The world is still loud and bright and full of so much information that I feel like my head might explode. Previously I would have used energy to mask these feelings, consciously blocking out the input to my senses – doing so for years has both left me too exhausted to function and has been seriously detrimental to my mental health.

So, in as far as I have any control over things, I am determined now, to be me, and not to use that energy unless I absolutely have to for survival. Furthermore, since the energy to mask ran out I can’t do it. I don’t have the resources to act any more, so I have to live as I am, now acutely aware of my heightened senses, but also no longer making myself be strong, no longer forcing myself to block them consciously, even though they are sometimes overwhelming.

Couple all that with the anxiety I’m still getting just leaving the flat, and you’ll begin to see why going out for a walk was such a big deal today.

And so my strategy was to make this first outing as easy as possible, so that all my energy could be focused on getting out of the flat, dealing with the overwhelming light, sound, smells and so on, and overcoming that initial hurdle of actually starting anything at all.

So no running clothes yet (there’s a sensory issue with fabrics touching my skin which I will have to deal with), and not yet backpacks or belts or other such kit. Daytime clothes, my familiar handbag for keys, phone, and inhaler, but just two relatively easy adjustments to my normal “leaving the flat” gear – my running shoes and my Garmin.

Tiny tiny adjustments. Minimising the “difference”. In order to get out at all soley for the purpose of exercise, without the pressure of an appointment or another person expecting something of me.

And a “workout” so easy that it didn’t tax me physically. I know I can easily walk 2 kilometres, so didn’t have to put that part of it into the pile of obstacles in my brain, didn’t have to factor in a tough training session when persuading myself just to go out at all.

And I took a regular route that I run often, a known 2 kilometres. In the early afternoon when most people would likely be at school or work, and I’d have as little chance of encountering people as possible.

And so it happened. Starting over. Picking up fragments of my old life, the life that fell to pieces when I discovered I was autistic. The life that almost ended in December. The life that I now have to rebuild, differently, readjusting now that I know better what will help me to stay well.

The absence of either job or offspring in my life, coupled with my extreme burnout and wildly fluctuating moods, has meant that there has been very little “normality” of any sort during the last six months. Learning about autism and my being autistic has been fascinating, but I am also worn out by it – my entire life has been consumed by it for months. I need to ease off – my head is full.

It’s time to reclaim just a few bits of “normal” life.

Slowly, gently, with space in between to recover.

A couple of kilometres at a time.

Uncomfortable

Like a pendulum
Swinging wildly,
Undamped.
My mind has still
Not settled.

Where I fit
Into this new identity
Is still unclear.

I talk to people
And many of them
Expect answers,
Where I still have
Only questions.

Some days
There is despair
And a feeling
Of life being limited
Permanently.

Some days
There is hope
And a feeling
That life will improve
Substantially.

But where I fit
Into this new identity
Is still unclear.

I am suddenly forced
To confront issues
I had discarded
Years ago.

Things very very uncomfortable.
Offspring. Female identity.
Neither of which I possess.
Autism forces these things
Into my consciousness.

Not to mention
My own childhood,
A door I had long since closed
Forced open for diagnosis.

Can open.
Worms everywhere.
Wriggling around,
Demanding attention.

The past
Begging to be analysed

But where I fit
Into this new identity
Is still unclear.

There is no stable backdrop
To my life.
Everything wobbles.
Precariously.

And my mind
Is trying to alter its perceptions
Of who I am
But progress is slow,
Like an ocean liner
Doing a three-point turn.

As I try to plan
For a changed future
I desperately search
For familiarity
And stability.

Autism is exciting,
Enticing, shiny, new.
But this very newness
Makes it also feel
Alien and unfamiliar.

I have never fitted
Into a community
I am not used to being
“Part of things”
As soon as I become so,
I feel uncomfortable
And withdraw…

Where I fit
Into this new identity
Is still unclear.

My past needs
Reframing.

My future needs
Replanning.

There is uncertainty ahead
How functional will I be?
What can I try to do?
What do I want to do?

Preserve the old
Familiar interests
(accepting my limitations)?

Embrace the new
And shiny interests
(accepting intimidations)?

I ask myself
And many times
I search for answers,
Where I still have
Only questions.

Where I fit
Into this new identity
Is still unclear.

My mind has still
Not settled.
It swings wildly,
Like a pendulum,
Undamped…

Where I fit
Still
Unclear

Unknown

Uncertain

Uncomfortable

Making Tea

It has just taken me around 2 hours to make a cup of tea.

“That’s ridiculous,” I hear you cry, “it doesn’t take 2 hours to make a cup of tea…”

And my sensible brain, my logical brain, knows you are right. I am a physically sound adult, with a perfectly reasonable brain, who has made hundreds of cups of tea in their lifetime, and making a quick cuppa, with kettle, water, mug, teabag, and milk all within easy reach should be something I can almost do with my eyes shut by this stage in my life.

But I can’t. Because I go to the kitchen, and I complete the first stage of the tea making procedure (fill the kettle with water) and my autistic mind (the bit with the impaired executive functioning – I promise I’ll try to explain all about executive functioning as soon as I can) simply stops processing at that point. My mind believes that the tea is made, because it has no further instructions – often, I cannot sequence tasks, so I do the first bit of the task and my mind makes a little tick in a box in my head and says “done”!

Twenty minutes later I remember that I was thinking that it would be a good idea to have a cup of tea. I look down at the place on the floor next to my sofa where the tea lives, and see a piece of carpet that holds only dust, hairs, a few bits of dubious provenance (I haven’t been up to vacuuming recently), and some vague tea stains from previous cuppas. But no actual tea.

So I return to the kitchen. And I put the kettle on to boil, because I realise that I didn’t quite manage that bit last time. This time I will FINISH the process, and I will get my tea. I am determined. Tea will be mine.

And then my mind ticks the box again…

I wander off, again, my mind once more tricking my brain into believing that the tea-making procedure is complete and I will soon be enjoying a cup of warm brown liquid of the type that many people from my particular part of the world find so comforting and familiar.

And, of course, I have failed, once more, to join the individual tasks together, and been unable to complete the (supposedly) simple task.

You’re probably starting to understand at this point just WHY it takes me two hours to make a cup of tea, and why there is such huge effort involved in such an endeavour. Each stage has to be thought of, consciously, separately, and the amount of processing power that a complex task like making tea can take is enormous. For years I have blamed this on simply being a bit “absent minded” (yes, everybody forgets things, everybody has put the kettle on to boil and wandered off) or on the strains of mental illness, but in my case it is extreme, and always has been. I’ve compensated behind the scenes as much as I can, but I eventually get to the point where I simply give up eating and drinking because the mental processes required to deal with them are so far beyond me that I just can’t work them out.

Then you need to add in another factor to the equation – inertia. I have always known that I had huge inertia, and have even used that word about myself for many years (probably since I learnt it in physics lessons when I was at school). I have discovered in the last few months that there is such a thing as “autistic inertia” (the thing that means autistic people have real difficulty starting tasks, stopping tasks, and changing from one task to another – this is another area I’d like to write about properly once I have the ability to do so, but for the time being, just imagine the very worst procrastination experience you’ve ever had, something you really really really didn’t want to do and were finding almost impossible to start, then multiply that by about a million, and you’ll get the idea)!

So, once I’ve sat down on the sofa after supposedly finishing making my tea, I find it almost impossible to move to get up again. And, once I’m up for the next stage in the tea making I sort of forget how to sit down again and end up wandering round the flat (which doesn’t take long because it’s rather compact) in a sort of bemused manner trying to work out what I was supposed to be doing.

My impairments in ability to sequence and complete complex tasks (such as making a cup of tea) and inability to start/stop/switch tasks have been things I have lived with all my life, and I’ve made gargantuan efforts to compensate for them by using enormous amounts of brain energy, consciously forcing myself off the sofa, consciously making myself try to think of the next stage in the tea-making process, and so on, which has, of course, made me really really exhausted. Despite enormous willpower (I have no shortage of willpower – I’m the kind of person who can run 60km on a busted leg to complete an ultramarathon etc etc) I have never been able to learn to make a meal with any reliable success or managed to change from one task to another without a significant break in between and a lot of effort. When I have tried to do these things it has very quickly led to shutdown or meltdown.

And, as I’ve progressed through life, things have got worse, not better. I was probably at my peak ability sometime in my early 20s, when, like most people who are young and reasonably fit, I had more energy than is the case now. But still it wasn’t sufficient, and by working so very hard to try to be “like everyone else” at that stage in my life and by believing the hype about how “cooking from first principles is somehow “better”” and trying to do what was “best”, I stored up years of damage that only became apparent when my mental health fell apart in my late 20s.

Now I know better than that and am learning that I have to work with the mind I have and not fight against it, although that in itself takes rather a lot of strength, and learning to ignore the “advice” so freely given by those who don’t actually have a clue just how incapable I actually am, is going to take a bit of getting used to. My life has been about striving for achievement, and improvement, not about adapting and taking things more gently – that’s a huge shift for me.

And just at the moment I’m doing more external things than I have been over the last few months. My executive functioning issues had improved slightly, but as I’m now using energy to do a bit of music (which I want to do), deal with benefits forms (which I need to do), fix to see my father (which I both want AND need to do), and arrange my follow-up appointment with the autism team (which I also both want and need to do), I’ve noticed a decline in my ability to function within the flat, a need to stim more, and a more regular loss of words – the energy to do other things has to come from somewhere!

Of course, doing what I’m now doing in terms of activities would have been impossible a few months ago, so there is progress, but it’s very interesting to note how much my basic abilities, with such things as tea making, suffer when I’m diverting energy elsewhere and can’t use it to patch over the holes in my mind where those particular connections are missing.

But I did get a cup of tea today, eventually, so that was an achievement!