The Incident

I can still remember the moment, even though it was some years ago now. It was the moment the woman kicked me, and then shouted at me, and I went into a total panic, terrified, unable to articulate anything, unable to cope, and my senses went haywire and I needed to scream and run away and not be where I was any more and everything felt terribly terribly wrong.

Running away at that moment, however, was really really difficult. The best I could do was to get to the side of the pool, get out as fast as I could. Shaking and trembling I managed to retrieve my stuff from the locker, put minimal clothes on over my wet costume, then slammed the locker door, screamed in anguish, and ran towards the exit of the leisure centre, and to my car, and to safety.

Except that I never reached my car. The manager of the leisure centre stopped me and wouldn’t let me leave. She made me sit down and I started to feel really sick. She started talking about police. I started to think “Oh fuck, this is seriously bad news”. I managed, just, to say the words “Mental health” to her, hoping desperately that once she realised I was in the middle of what I believed at the time was a really bad panic attack she’d let me go. She didn’t, although she did decide not to call the police on me, but instead called the local doctor’s surgery, taking my name from my leisure centre admission card.

Eventually I was deemed calm enough to be allowed to leave, and I returned home, where I then received a call from the surgery, which didn’t help matters at all because it reignited the panic. I slammed the phone down on the doctor, desperate to be left alone.

I never went back to that particular leisure centre, even though I had a membership that had some time still to run. I swam a few times again at a different pool, until it became too much and I just gave up swimming, even though it was something I loved doing, and, at the time, was the only regular exercise I took. Somehow it was just too difficult and the memories of that “panic attack” were just too painful.

I saw my own GP shortly after the incident and tried to explain to her what had happened and to get the incident erased from my medical records. It had been reported and noted that I was “violent and aggressive”, which I disagreed with. I didn’t feel violent or aggressive – I felt scared and distressed and not in control of my actions or my head, like there was some sort of explosive reaction inside me that I was powerless to stop. There was no violence. If anything I was trying to STOP anything that might have been perceived as violence, trying really hard to stop whatever it was that was making the world feel so awful at that moment.

My GP was sympathetic but said she couldn’t erase the record completely, however, she would add to my notes to put my side of the story on there and to point out that I had a history of these rather extreme “panic attacks” and that none of it was my fault. It was a damage limitation exercise at that point, but it was the best I could do.

Just over three years ago we moved to a different area, and to a place within easy walking distance of a swimming pool. I was aware that it was there. I took up running shortly after we moved and ran past it fairly regularly. Before the “incident” (as it is now known) I’d have been straight down there and joined, but I hesitated, because swimming had ceased to be my thing, even though it had very much been my thing for many years. Running was now my thing – it was safer, easier to be alone, with no time constraints, and so on. However, I did eventually take out a membership, which I only used once – after I’d run my first marathon someone said to me that swimming was a really good way of recovering, so I went down to the pool and did 42 lengths (one length for each full kilometre of the marathon distance) a couple of days after the race.

Then last September I went to see my GP again, following the suggestions from several friends that I might be autistic. My husband and I took quite a lot of notes we’d made about my childhood and my subsequent life and a list of things we’d taken as examples of autistic traits that were listed in various books we’d used for research. I think I started by saying something like “This is going to sound really random, but some folks have suggested I might be autistic…” before letting my husband take over the narrative because it all felt so weird.

My GP almost literally kicked herself and said something along the lines of “Of course, why didn’t we see this earlier?” or similar. And then, in a further “lightbulb moment” she mentioned, unprompted by us, the “swimming pool incident” and at that moment it became obvious that what had happened that day, several years earlier, was not a panic attack but an autistic meltdown (one of rather a lot of such things that have happened over the years). Bizarrely, the incident I’d tried so hard to have erased from my medical records actually confirmed the autism hypothesis, and my GP was writing the referral for a formal autism assessment pretty much before we’d even left the room.

After that one post-marathon swim, well over 2 years ago, I never went back even to the new pool. I discovered quite quickly that I could recover from marathons perfectly well without swimming, and something I’d enjoyed as a child, absolutely loved as a student, and done reasonably regularly throughout adulthood simply disappeared from my life. I had running now in any case, so it really didn’t matter whether I swam or not.

I’ve pondered for the last year or so whether I’d ever swim again. I vaguely have in mind that I’d like to do a triathlon some day, so thought that swimming might feature in my future somehow, although it was always “in the future” and since I don’t currently have a working bicycle or anywhere to keep one, triathlon is still firmly “in the future” and will probably require another house move in any case.

But last week a friend of mine went swimming. And I was suddenly rather envious. And I googled the opening hours of the pool to see when they might be. And I found my swimming bag, as it had been left, over 2 years ago, with costume, goggles, towel, and so on, all ready to go. Maybe? Just maybe? Then this morning on my facebook memories from a few years back there was a status saying that I’d been swimming for the first time in a year (evidently one of the times I was trying to get back into it, but that didn’t stick).

And the temptation was finally too much. Armed with the knowledge that it would be a total sensory overload experience and that how far I’d get with it depended not upon my physical swimming ability, but upon my system’s ability to cope with noise and light (even though my goggles are slightly tinted, they’re not as dark as I’d like) and being in close proximity to other people. KNOWING this was the case I was better prepared than I have been in the past, and the magic of the internet was also able to provide a little graph showing when the “least busy times” were, so I picked the time when it was likely to be emptiest (over lunchtime as it turned out), and it was indeed quite empty in the main pool.

And I bought a single swim, not a membership, so there’s no pressure to go again. If it turns out to be something I can manage to do regularly I’ll consider a membership at that point – rather than going in fast and crashing out, I’m trying to take it gently, one swim at a time, and not pushing how long I stay in the pool until I work out what my sensory system can cope with because I really really want to avoid a repeat of the meltdown scenario, which should be easier now that I know what it was all about and what caused the “incident” all those years ago.

Being back in the water was lovely. My arms aren’t as strong as they were, and my cardio isn’t what it was a couple of years ago (I already know that from recent running exploits), but I happily swam 40 lengths – I thought I’d go for a kilometre to be gentle, rather than the mile that used to be my regular swimming distance for many years. I was conscious that the real challenge wasn’t the swimming at all, but just being in the pool with people and noise, and I was trying to monitor how that felt. So far, so good, although I was pretty wrecked when I got home and needed total dark and silence for a while to calm down.

Who knows what happens next. One swim at a time for the moment. But I’m hopeful I’ll get back something that I used to love, now I know what caused it to go wrong several years ago.

Accumulation

There are usually two reasons why I might not update this blog for several days. One is that I’m too busy, doing too much out in the world and am therefore spending all my energy interacting with people out in the world and all my time simply doing whatever it is and therefore don’t have enough energy or time left over to write a blog post. The other is that I am simply unable to write at all because I cannot translate the thoughts in my head into sufficiently coherent words because I have run out of energy completely and it is all I can do simply to survive and get through the day.

Both of those situations have been the case this past week, which is why I’ve been absent. After a couple of really busy music events the previous week (and yes, I did leave two clear days between each for recovery), I then went out to lunch on Saturday, went running on Sunday, out to lunch again on Monday, and then had to drive over to the vet on Tuesday to collect a rat who’d had a operation.

It turned out that, when added to the musical activities of the previous week with bare minimum recovery time and no “well days” in between for me to gain energy, four consecutive days out of the house was too much for me (in fairness, I didn’t plan four days, because I’d forgotten about collecting the rat, and even when I did remember, just a drive to the surgery didn’t seem like it would be too much – but it was).

And then, on top of all this activity out in the world with noise, and interaction, and so on, there were other things going on. Several incoming messages to deal with, things I wanted to say and comment on, friends who needed support in various ways, a bit of family stuff (father starting chemo), a birthday, anticipation of the upcoming weekend (which is now happening as I type), and my spoon rations were stretched to their absolute limit. And last thing on Tuesday evening the very last spoon of my spoon overdraft was used and I went from “coping” to “not coping”.

With hindsight, the signs were there. Saturday lunch was the last “proper meal” I managed to eat, and my food intake got increasingly erratic over the next few days. I started to feel exhausted again. I gave up commenting on facebook posts I’d wanted to because I couldn’t find the words. Sunday I got wiped out by going for a run and lost speech again. And once I got to Tuesday night I managed about one hour of sleep in total.

I haven’t felt up to writing a blog post, not even a “poem style” one since then. I’ve tried on several occasions. I’ve lain in bed with the phone, sat on the sofa with the iPad, and at one point turned on the computer and managed to type a title before feeling so awful I had to go and lie down again. But that has been it. Today is the first day I’ve really felt anything other than absolutely dreadful.

And I finally figured out, yesterday, I think, WHY that is. Even if I had been wrecked on Tuesday evening I should have been OK by Friday if I’m thinking of the “two days for recovery” rule, which I’ve been applying and which has, on the whole, been reasonably successful.

But what I hadn’t figured on was the cumulative effect of stacking up many events on top of each other. I hadn’t figured that the two days are just what’s needed for recovery from doing something, but that they’re not enough for proper recuperation. If doing something takes me into spoon overdraft, then two days can usually get me back to a balance of zero, but if I don’t take MORE time alone with minimum sensory input then I never get chance to accrue any savings. I’m living on credit the whole time.

And now I’m paying the price. I was supposed to be going to the Air Tattoo yesterday with my friend. I was not well enough to go, not by a very long way. I wasn’t even well enough to e-mail him to tell him I wasn’t well enough to go, so my husband had to do it for me. It was left that there might be a possibility of going to park and view nearby tomorrow, but, as I type this, I don’t think I’m going to be well enough for that either. I’m still struggling to eat. My sleep is still really disturbed. And my mood is not, shall we say, at the top of its game.

And my husband isn’t here to do the communicating for me either because he’s out for the next two days running the 100K ultramarathon that I am missing terribly and want to be doing too, but am not well enough. I’ve been dreading this weekend for a few weeks now, knowing what sort of weekend I wanted it to be, what I wanted to be doing, and what I wouldn’t be doing, because of stupid burnout and being not well enough to have done enough training or anything.

And it’s turned out that I’m not even well enough to go and watch aeroplanes either. I’ve run through, in my head, the potential scenarios for tomorrow, and I can’t imagine how I’ll cope. There will be people, there will be noise, there will be nowhere to hide, nowhere dark to go. It will be a long day that will use spoons fast. Even in past years, before I knew I was autistic and before this particular burnout, it’s taken me several days to feel well again after going to an airshow – I now understand why. My husband has made sandwiches and has left them in case I go and need them, but my head just can’t make it work right now. I’ve been trying to get out of the flat for the last day and a half in order to do a few jobs – I need to go to the bank, my phone has run out of credit, and so on, but even that feels too much for another few days. I need more time, more space, more recovery.

All this makes me sad. Things that I want to do, things that I love doing, I just can’t. It also makes me afraid, afraid that people will stop asking, that they’ll think it might be “too much” for me and that decisions about what I do will get taken out of my hands because people will think they’re protecting me by not inviting me to play music or have lunch or go running or go to airshows or whatever. And I’ll miss out on opportunities that I COULD have taken (my functioning abilities are so variable that I can often do something one day that I have not a hope of doing the next, and vice versa) and on things I enjoy. I also worry that they’ll stop being genuine with me, thinking that I won’t be able to cope with difficult stuff, and I’ll end up with a confused “half-reality” which I absolutely don’t want, even if I can’t always help with that particular thing at that particular time.

I have to learn this stuff for myself, and I have to discover just what abilities I’ve been left with following the burnout of the last year, just how far I can push before I break, and what I can do to mitigate against the effects of going out into the world and doing things. I have to learn how the cumulative use of energy stacks up and what I can do about it. Even realising, this week, the difference that “accumulation” of spoon debt makes to me, it has become obvious why I’ve struggled so badly to hold down even part-time jobs. Even if I can get through the first week, the damage to my energy levels stacks up so I’m incapable of doing the same in the second week, and I eventually fall apart. Looking back now, it’s easy to see the patterns. And in a strange way, being able to see those patterns and understand why I lost the jobs is at least satisfying and persuades me, just a little more, to stop blaming myself (as I have done for years) for my many failures in the workplace.

Before my husband headed off to go running around the countryside we were able to discuss some of this. He reminded me that it’s still less than a year since the huge discovery that I was autistic (which is possibly the most life-changing thing that will ever happen to me), and it’s still less than 5 months since my diagnosis, and that I’ve actually come a very very long way from where I was back in December. I’ve recently done things that I could hardly have dreamed of back then, so it really is progress overall.

However, progress takes work and energy and costs spoons. Even if the general direction is upwards, sometimes things will go downwards. While I continue to be the sort of person who wants to go out into the world and do things and to push myself to my limits (or, let’s be honest, to test the outer reaches of those limits and to keep pushing until I break, which is probably going to continue to happen quite a lot because living a “quiet life” is so counter to my personality that in its own way it’s even harder than doing the pushing because pulling back also takes a lot of effort), I will, inevitably, break from time to time.

Today, however, just doing what I really need to do will test my limits. I need to pay the council tax, I need to contact my friend about watching aeroplanes, and I need to eat. All of those feel like really really big tasks right now, but they’re what I’m aiming for. Anything else will be a bonus.

Trail Return

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pendulum Pushing

Just as the oscillations
Start to settle
I push the pendulum again.

“Let’s do more,
Let’s try to return
To some of my old life,
To music, to running,
To being out in the world
And seeing people
And being
Functional!”

Yay!
Exciting!

But, the thing is,
That doing those things
Means I push the pendulum

Just as it settles
And calms
I cannot resist
Giving it another huge
SHOVE!!!!!!!!

And then it swings wildly back
In the other direction.

Of course it does.
That’s how pendulums work.

So I push
And achieve
And get that feeling
That there might be
A decent future
After all.

That I might cope out in the world
Even sometimes enjoy
And maybe even
Have one or two friends.

But then I crash.
And lose confidence
And have to retreat
And can’t judge if I’m getting
Things wrong, socially,
And I plunge back into
A much more depleted state.
I struggle to eat
Or interact
And I wonder
Whether there is
Any place
For me
In this world.

And once again
I question
The value of my life.

And write gibberish
(In italics below)
At 3 in the morning.

My brain knows this is how it is.
And that it is the only way
To rebuild life
To something
That I feel
Is worth
Bothering with.

And I always push
Because that is my way.
And I don’t want people
To stop asking me
To do things.

But I have to accept
That there is a price.
And I need to recover.

And in the meantime
My head won’t work properly.
And I can’t think
Well enough
To blog or write except
In this “poem” form.

Maybe it is enough for now.
Maybe I just have to accept
That sometimes
Life feels rather bleak.

***

Sometimes I still get
An overwhelming feeling
Of not belonging
In this world.

Even when progress
Is made.
Even when life is
Apparently
Improving.

I still wonder
What I’m even doing
On this planet.

Words echo in my head.
Some recent,
Some from years ago.
My mind interprets them
And nearly always
Draws the conclusion
That the place
Would be better off
Without me.

A last small thing
Making everything
Feel so wrong.

But I am supposed
To be a success story.
I am constantly told
I am brave
And stuff like that.

But I don’t feel brave
I feel small
And unbrave.

I still wonder
How much of this “brave”
Is an act
A great effort
Of foolery
By my brain
Which is
Once again
Covering for
My broken mind.

I can walk the walk
I can smile and succeed
But I am still coming home
Destroyed and exhausted.

I still do not feel
I have found a place
In this world.
I slot myself into corners
Where I can
And I know what to say
In so many circumstances
Because I have learnt
And learnt well.

But the world still does not
Make sense to me.

I am returning to my life
But still an actor.
Maybe this is how
It has to be.

I have an explanation
But no solutions.

Perhaps this is as good as it gets.

It isn’t very good really.

Going Back

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

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

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

A whole day
To pack.
The journey there
Dissociated.

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

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

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

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

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

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

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

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

But

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

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

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

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

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

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

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

And I need
So much
Recovery time.

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

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

Maybe
I can keep
This one.

I went back.

I survived.

Not That Autistic?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hmmm!

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!