If you asked me whether I was the sort of person who was absolutely fixed on routines and set ways of doing things, I’d probably say that I wasn’t. I’d probably say that I thought I was very flexible and adaptable.
If you asked my husband the same question about me, he’d probably give you a totally different answer. And, as usual, he’d be right.
I’m just coming to the end of 4 days that have all been different from “normal” and all different from each other. And I am knackered. Utterly knackered. I feel unsettled, edgy, and totally exhausted. I really really really want a “normal” day tomorrow.
The routine break started on Friday afternoon when I went over to visit my best friend. We spent a pleasant evening together and I stayed overnight (his wife was away, and when she’s away it’s reassuring for someone to be there just in case any help is needed, so I sometimes provide an elderlysitting service). We had a pleasant evening, but by my current standards there was a lot of conversation, and my sentences started to fragment by the end of the evening.
By Saturday morning forming words was really hard work. I tried to explain to my friend that it was a bit like attempting to converse in, say, Hungarian. My attempts to say “Hungarian” didn’t end well – in fact, they didn’t end at all, because I simply couldn’t say that many syllables at one go by that stage. I typed on my phone to explain that I was going to go home, and he got his magnifying glass out to read the typing – attempts to communicate almost descending into farce!
I then came home and completely lost all ability to speak for about 3 hours, then fell fast asleep.
My husband went off to work on Saturday night, so I recovered a little overnight and on Sunday morning, then spent Sunday afternoon and evening trying to finish a maths assignment – I’m still clinging on to the idea that I might just salvage my Open University degree, though it’s still not certain that I will. But I eventually got around 80% of the assignment done, ready to submit. The willpower required was huge, absolutely massive.
This morning was an early start, to take the car in for its M.O.T. test. It was not a good early start. I felt sick and stressed, exhausted from the weekend, and worried about having to leave my phone on all day and discuss car things. And added to the stress was sadness, as my husband found my lovely little Robo hamster, Stim, had died in his nest. There are feelings about that that I’m not really processing because there isn’t headspace and I have to do practical things.
When I went to set off to take the car, my scarf was missing, which nearly sent me into a tailspin – it turns out I left it at my friend’s house – so I had to find another one.
Then things started to improve a bit.
Driving is actually, still, something I find OK. By myself in the car, my own space. I can cope with it most of the time. The people at the garage know me, and are good and efficient and got to work on my car while providing me with a courtesy car.
I still hadn’t had anything to eat, and thanks to the lightness of the traffic and the efficiency of the garage, it was early. I decided to chance a coffee at my usual coffee shop, which I’ve largely avoided since discovering I was autistic, mainly because some of the people who work there know me well enough to chat to me and make the sort of small talk that I find difficult. Ironically, at the moment, I feel more comfortable either with people who know the full story and the whole autistic thing about me, OR people who are total strangers and have nothing to compare the “me” of now with because they didn’t know the “me” of the past. Becoming my autistic self has been really easy from the inside – all I have to do is stop acting and be myself. But the interface with the outside world is very much still a work in progress.
Anyway, thanks to the fast turn over of staff in coffee shops, both baristas were total strangers, which made life much easier, so I had my usual latte and cheesecake (and a croissant, which I was nearly unable to eat, but managed in the end). I’m trying to eat as much as possible, because I’m conscious that my eating ability might well deteriorate further as the forthcoming assessment approaches.
I then managed to do one job at the bank and top up my phone, before attempting to buy a couple of things at the supermarket.
The supermarket proved too much. I felt sick and dizzy and my head started to throb, the lights obviously way too much for my already taxed system. I located the courtesy car in the car park and drove straight home.
My husband had managed to scan my maths assignment for me so I could submit it electronically, so I logged on and sent it, just managing to stick to the extended extended extended, specially extended again, deadline.
I then rocked on the sofa until I fell asleep.
The garage called early afternoon. The really good news was that the car had passed its M.O.T. test. Which was excellent as much because I simply couldn’t cope with the interaction of dealing with sorting cars out beyond the basics at the moment. Last year it needed so much work done that they handed it back and said it was practically a “new car” because so much had needed replacing, so maybe I was due a good year.
I collected it, then finally did manage to do a little shopping for some of the heavier and bulkier items so that my husband doesn’t have to carry them all on the bus.
Then came home and collapsed.
I feel wrung out, worn out, completely exhausted by the whole thing. This is probably a terribly dull blog post, an account of dull domesticity, but it has provided me with a way of getting some of the thoughts that were in my head organised and sorted so I can use the space for moving on to the next things I have to do.
I’m now counting down the days to the assessment. I want to send more material to the assessors. There is so much, and I don’t want to miss anything. I still fear they will not believe me, because all available evidence suggests that they won’t. And there is that voice always in my head, that every time I write about difficulties talking, or going shopping, or wearing scratchy clothes, or whatever, always, there is someone who says “Yes, I have difficulties talking/shopping/wearing scratchy clothes” (or whatever it is). And so the reinforcement that everyone has the difficulties I have and that I am just normal but bad and fussy and lazy, continues.
And since I’ve already had 2 failed assessments I am now starting to doubt myself again.
And I wonder what will happen if they say no. Will it be the end of the road?
If I am not autistic, then why do I keep losing speech? Why do I have these times where I can’t work out how to put my socks on?
Like has happened throughout my life.
Maybe I SHOULD go for a brain scan? The woman at the first assessment started talking about brain injury – did I have some big accident and I’m so screwed up by it that I’ve forgotten it completely?
Doubts doubts doubts, all the time. If the psychologist before couldn’t see it, and years of psychiatrists couldn’t see it, then why will it be any different this time?
I begin to think I am losing the plot…
Or maybe I’m just feeling completely despairing and totally all over the place because I’ve had so much on and been so out of routine and had so little time alone.
I did manage to write a little “poem thing” (I’m still not sure if they’re really poems) over the weekend, but I didn’t have enough energy to post it, so here it is now:
…overnight with my best friend.
In the gloom, for me,
Even though his eyesight
He made the call for takeaway
Even though he’s not fond
Of the phone.
Me rocking, stimming,
Throughout the evening.
Tired and quiet.
Not fluent at all.
To get home.
Quiet and tired.
For three hours.
I could have gone out for breakfast.
I could have stayed for coffee.
I could have collected my stuff from our mailbox.
Except that I couldn’t.
Typing my words on my phone
To my friend who needed a magnifying glass to view them.
Aware that I needed to drive
And wanting to be home before complete shutdown.
This is the hard stuff.
I don’t much care whether I can speak
Technology deals with that.
But I do care
That I have to miss breakfast
At a nice place
Because I can’t cope.
And I do care
That I have to come home
Instead of living
A full life.