Autism Fatigue

69-2016-12-17-15-46-58So much so much so much.
Overloaded with information.

Writing writing writing.
My head full of autistic traits.

Autism autism autism.
My timeline full of articles.

Debate debate debate.
Issues I cannot yet deal with.

Children children.
Where are the adults?
Or are we just not so cute?

Tests tests tests.
Early diagnosis.
Measured in months not decades.

Assessment assessment.
Flashing in my head.
Instilling fear.

My brain my brain my brain.
In so much turmoil.
Isolated and broken.

Wine wine wine.
There is nothing else.

My life my life my life.
Falling apart because I just can’t.

Stimming stimming stimming.
Weighted blankets and repetitive movements.

Autistic autistic autistic.
Well am I?

My whole identity
Unknown.

I want to scream
I want to know.
I am falling apart.
There is no help, just mess,
And waiting.

Everything is so new
And different.
When will I be me again?

I am trying to be a grown up
But I don’t feel like one.

(Except that I can persuade people
To sell me wine
Because I have grey hair).

Please can this be sorted soon.
Please.

***

Yesterday early evening was not a great time. I got very triggered by lots of things and my head didn’t do very well at them. Immersing oneself in autism stuff means getting exposed to some stuff that is really hard and difficult and it still feels so new that I haven’t had chance to work it all out yet. I have a lot of history to go over, and end up reading a lot of stuff that makes very bad feelings, both about my own history and about how younger autistic people are treated today. There is much still to work out and to make into words. And I got really stressed, mainly to do with having had so many decades of not knowing and now many months of still not being believed and now hour after tedious hour of waiting for next week’s appointment, desperately trying to hold life together when all I want to do is curl up in a corner and die.

After I wrote the above I wrote another similar thing, but much much darker. Whether I review it later or not, I don’t know. Maybe it’s too dark, or maybe it’ll be something to look back on and analyse in future. There are things in it that may be expanded to form future posts.

Anyway, the evening improved. My husband got home from work and let me know that he’d had a further e-mail from the assessment people saying that they’d received the most recent lot of writing I’d sent to them. They’ve now had, at a rough estimate, around 120 pages of evidence, going back to when I was a baby and covering my entire life. The e-mail suggested that they might actually be planning to read it, which the last place evidently didn’t (and they had much less because we’re now several months further down the line and when I can I keep writing, because, to be honest, in the absence of a therapist or any other way of sorting my thoughts, I don’t actually know what else to do. The e-mail was also clear and understandable, and seemed to suggest that the appointment will start on time and various other things that didn’t happen before, which would be good).

I then, rather rashly, agreed to go and play in a concert over the weekend. I was going to decline, but my husband pointed out that I was going to spend the whole weekend feeling stressed and sick and bad anyway, so I might as well feel stressed and sick and bad to a nice soundtrack. Maybe I can pretend things are old normal for a few hours if I can manage not to fall apart completely. It’ll totally exhaust me, but I’m totally exhausted anyway, so it probably doesn’t make that much difference. I got my viola out this morning to work out some fingering to suggest to a friend, then bashed through a concerto movement very badly, which felt reassuringly normal and not to do with autism.

Perhaps, by this time next week, the whole diagnostic nightmare will be over and I can start to rebuild some sort of normal but manageable life, and start to heal from this whole thing, and the little bits of hope that the burnout might be receding a bit will become bigger bits.

I do hope so. My head is worn out. This process is very wearing.

Out of Routine

66-2017-01-28-14-04-07If 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:

I stayed…

…overnight with my best friend.

Lovely evening.
Takeaway curry.
Chatting.
Discussing.

In the gloom, for me,
Even though his eyesight
Struggling.

He made the call for takeaway
Even though he’s not fond
Of the phone.

Me rocking, stimming,
All strategies
Throughout the evening.

I slept
Moderately well.

I woke
Tired and quiet.

My words
Not fluent at all.

I departed
To get home.

I arrived
Quiet and tired.

My words
Completely gone
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.

Missed opportunities.

Truncated life.

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.

Too Loud

53-2016-12-29-22-14-42I sat in the masterclass, trying to hear what the teacher was saying to the student, straining my ears against the noise coming from my left. A woman who was sitting a couple of seats away from me was taking notes – with a pencil, and the sound of it scratching on the paper was getting so loud that I could almost hear it drowning out the voice of the teacher. I glanced round the room to see whether anyone else had noticed, but if they had they were giving no indication that they were the slightest bit worried by it.

I’ve noticed that since I’ve been in burnout my sensitivity to noise has increased dramatically and my ability to filter out extraneous sounds has declined substantially. I’ve always had issues with background noise, and usually I’m working really hard to filter out the things that I want to hear from those I don’t – this takes a huge amount of energy and I can only usually do it for a finite amount of time before some sort of meltdown occurs.

Interestingly, the noise in the eating place last summer (see The Discovery) was one of the main contributing factors to my eventually being identified as autistic. Not being able to cope with the noises of food, plates, eating, talking and so on AND then having to eat my own food was one of the big triggers that made me seriously anxious and I ended up figuring that it was so stressful being in that environment that the best thing to do would be just to give up eating while I was there because the whole food experience had become so very difficult. Of course, that wasn’t a great strategy, and explaining my difficulties and being given dispensation to eat somewhere quieter was a rather more realistic approach!

Eating noises in particular are something I find very hard to cope with and, as I’ve seen memes on the internet, I’ve gathered that there’s a name for this – misophonia – which is apparently something else not really recognised by medics. So I have a double problem – I can’t cope with quiet eating situations because the individual noises are too stressing, but I can’t really cope with noisy ones too well either. Catch 22. Maybe I should just accept that communal eating is a jolly unpleasant experience and stay away from it completely? Or maybe a more sensible solution might be to limit it and be aware that it takes extra energy!

But it’s not just eating. We don’t have a separate kitchen at home, just an area at one end of the sitting room. When my husband is cooking, particularly if he’s frying anything, the sound of the stuff in the pan can sometimes quite literally hurt my ears. I also get similar problems with cutlery clanking on plates, or pots and pans being rattled and so on. Even when there’s no cooking going on, I sit there waiting for the fridge to stop making a noise so I can get some peace. I really would be the world’s worst kitchen worker!

Usually I manage to cope with most of the noises in the everyday world. Like bright lights, they exhaust me and I need to recover from them. Like with light I’m trying to figure out a way to dull them somewhat, especially now I know that I’m not hearing the same things that other people hear (not because there’s anything wrong with my ears, but because the way my brain processes sounds is rather different). Unlike with light it’s more difficult. Wearing sunglasses is an easy adaption – I’ve worn glasses since I was a teenager and have to wear them anyway to be legal to drive the car and to be able to see. Glasses are no big deal.

Earplugs or headphones are an entirely different matter. I can tolerate having earphones in for a short while, but I’m permanently slightly uncomfortable with them in because of how they feel in my ears. Apparently there are people who can sleep with earplugs in – I don’t know how because they drive me nuts after a very short time. I have worn earplugs at airshows and so on, but the sound of my own voice is then totally unbearable and I only keep them in for the noisiest jets. I would also feel very vulnerable out alone without being able to hear what’s going on around me, because I use my hearing so much as a safety mechanism – maybe the advantage of hearing so much of the background noise upfront is that I notice things like footsteps behind me or the whistle of wind in bicycle wheels when I’m about to cross a road, or similar. I haven’t yet solved the noise problem – that’s very much a work in progress!

And, of course, sound has the additional problem over sight in that it isn’t just the filtering of noise that’s the issue, but a lot of the time coping with sound requires the auditory processing of language too. It has now become obvious that spoken language doesn’t come naturally to me and filtering out conversations from other conversations is something I’ve always found really hard work – which is why I’ve often found myself at parties following a conversation that I’m not even part of and when I’m then asked to contribute have had to ask what has just been said as if my hearing was a bit dodgy!

I’m fairly confident that when I’m recovered from the current burnout things will get a bit better. During most of my life I’ve generally preferred having music playing to having silence – music is a huge and very important part of my life. Interestingly, sometimes, background music (as long as it isn’t too loud) can be a steadying influence on me when I’m surrounded by talking and conversation. It feels to me as though it enters my head on a different channel from conversation – it goes straight in and has meaning instantly without the translation mechanism needed for words. However, when I had the 2001 burnout I couldn’t cope with music at all and craved total silence most of the time. This time around it hasn’t been quite as bad, but all my volume controls have been turned right down and I need everything very soft. On bad days I can’t watch the television with sound and simply put the subtitles on and read them instead. I have managed to play in the occasional concert and the music itself hasn’t been too bad, but the applause at the end of the show is very very painful at the moment. Again, I’m hoping this will improve.

Of course, living in a flat with 3 lots of neighbours is really not ideal in this situation. And the fact that I’m only getting out about once a week means I’m spending an awful lot of time listening to the neighbours’ doors squeaking, their showers running, the noise they make in the corridor outside, the car alarms in the car park below, the dogs barking, and worst of all, the noise of the primary school kids arriving in the morning (the primary school is very close to our block of flats). The voices of babies and small children produce the same effect that knives clanking on plates or people chewing or pencils scratching on paper do. I’m guessing it’s something to do with the frequency of the sound or the structure of the wave or some similar thing – maybe I’ll research it one day, but for now it’s just simple observation.

And, like everything else, now I know how much energy I’m using to cope with filtering noise and trying to focus in on what I actually need to hear, I’m going to have to adapt things a bit. More recovery, more time spent in silence (or the closest I can get to it, given my living circumstances), more time on my own. We’ve also discovered how to disable the entryphone to our flat (nobody ever visits unscheduled anyway) and we now have all ringers on phones permanently turned off. Social occasions will have to be prepared for, recovered from, and rationed to things I really want to do. Having to cope with the sheer amount of noise in the world is yet another thing that drains my energy and causes exhaustion, overload, and sometimes meltdown.

Too Bright

52-2016-12-25-22-53-15I have just changed the lighting in our sitting room – again. I’ve unscrewed yet another bulb from one of the main lights (which are made up of five stalks, each with a bulb on the end), turned the other main light off completely, and installed a lamp with a low wattage bulb instead.

A few weeks ago I stopped using the main lights in the bedroom and installed a lamp in there with another fairly dim bulb. I now only turn the main lights on when I really need to see anything. I also turned the brightness on my computer screen right down to the minimum, and even so can only manage to spend about an hour at a time working at the computer before I start to feel quite ill and need a significant break.

I have become seriously sensitive to light in the last few months, or, more accurately, I have become properly aware in the last few months, of just how seriously light affects my health.

I’ve always known that light levels mattered to me much more than they seem to to a lot of people. When I’ve been very depressed in winter I’ve been greatly assisted by both a lightbox and a “daylight” alarm clock. I also struggle, during the long days of summer, to get to sleep at night or to stay asleep past dawn if I don’t have complete blackout curtains. I even bought a special curtain rail that fits close to the wall so that not the slightest sliver of light can be seen once the curtains are closed. It has to be dark, really really dark.

My sensitivity to light is also, I have discovered, a large part of my inability to cope with shopping. Shops tend to be brightly lit places, with lots of fluorescent bulbs. I have recently been experimenting with wearing dark sunglasses in supermarkets and have found they help significantly with the nausea and exhaustion that I always assumed was part of the normal shopping experience.

Considering light sensitivity has also solved another mystery. Around 3 years ago we had to move to a rather small flat, and most of our possessions are currently in a storage unit some 20 miles away from home. They need sorting very badly, as they were packed in great haste and many are unlabelled. I’ve had several attempts over the years at going to the unit, unpacking a few boxes, and starting to sort through their contents. After around 20 minutes I become so tired I cannot stand, and not long afterwards I start to feel desperately sick and in a state of collapse. This has always puzzled me. I’m a strong, relatively fit person with a great deal of physical stamina (I run ultramarathons for a hobby), yet just unpacking a couple of boxes finishes me off. This has never made any sense.

Until, a couple of months ago, I considered the lighting in the storage facility. Which is similar to the sort of lighting in supermarkets, but even brighter and more intense. Unshaded and glaringly bright industrial strip lighting. And suddenly a mystery that has puzzled me for nearly three years was solved – the reason I cannot work in the storage unit is that the lighting in there quite literally makes me sick.

Obviously, we now have a problem to deal with – I have to be able to sort the stuff, throw what we don’t need, repack tidily the things we want to store until the time we can move somewhere a bit bigger, and rescue things that are precious and needed and bring them to the flat. But at least we now know what the problem is, so we can work on solving it.

My sensitivity to light also explains a couple of mysteries from my past.

When I was a teenager and first needed to wear glasses I thought that getting photochromic lenses would be pretty cool, and also really useful because I wouldn’t need to have a separate pair of sunglasses. Because my stepfather was an optician, he gave me my glasses as a present for many years, and I always had photochromic lenses because I discovered I really really liked them. However, by the time I was in my late 20s I’d moved away, things had changed, and I started to buy my own glasses. Because I was struggling for money, owing to being unable to keep any sort of job for very long, I simply started to buy the cheapest glasses, the ones with plain untinted lenses. My energy levels decreased significantly at around the same time, although it’s only with the benefit of hindsight and new knowledge that I’ve connected the two events, but now that I have, it’s rather obvious.

During the latter stages of the 2001 episode of burnout, I started to realise that I was going to end up in a rather serious situation with rent and food and so on as it became obvious that I was going to lose my job. I didn’t have the first clue what to do about this, so thought I would try to get to the nearest branch of the Citizens Advice Bureau in the hope that someone might be able to help me. I remember walking down the street, near where I lived in north London, and as I walked the light got brighter and brighter and brighter. Eventually it became so painful and so overwhelming that I collapsed onto the pavement. People rushed over to help me. And I eventually sat up, managed to rest for a while, and got to the CAB, who were no help at all.

The mystery about this episode was that as I came round I looked to see how other people were reacting to this sudden painful intrusion of brightness into their lives. And, oddly, none of them seemed to have noticed at all. They were just carrying on with their lives. The mystery of why these people hadn’t all collapsed in the street as I had was another that was only solved in the last few months, when I started to read about autism and sensory processing disorder.

So, discovering I am autistic has explained yet more mysteries from my past, and given me the information I need to work on solving problems in the future. I suspect some of the exhaustion I’ve felt when going home from jobs in brightly lit offices and classrooms has also been down to light, and if I ever do get well enough to work again then suitable lighting might be the sort of adjustment I’d need in order to stay in a job.

As far as we are able, we’re sorting the lighting out in the flat. Being able to just have gentle natural light would be lovely, but much of our flat is entirely internal, without windows, so we have to make the best use we can of the gentlest lighting we can cope with while also leaving the option for something brighter when we need it to see properly.

And I now have sunglasses, in my prescription, in two levels of tint, medium and dark. Wearing them out in the world is definitely helping me to cope. I wish I’d known years ago that something as simple as wearing sunglasses regularly would improve my life so significantly.

But I do now know. And this is why, although discovering I am autistic means I know I will never “get better” and I need to rethink my ambitions for the future, it also means that I can start to do things, such as altering lighting and wearing sunglasses, that will improve my quality of life on a daily basis. I can stop wasting energy trying to cope with unnecessary exhausting visual input and use that energy to feel healthier, or to achieve a little more, or even a bit of both!