Strategy Deployment

Yesterday I went out again, to something social, where I met quite a lot of people, and where I was out of the house for quite a lot of hours. I went to an afternoon symposium, a series of lectures, then to dinner, once again in my old college.

I employed similar planning strategies to those described in Out to Dinner: a couple of days’ rest beforehand, comfortable clothes, stim toys, dark glasses, and plans for an easy couple of days afterwards so I knew that I could take my energy levels into the red zone if necessary because once I was home I didn’t have to do anything at all except breathe (and that’s something that usually happens without my having to think about it).

Additionally I took some attenuating ear plugs (originally bought for potential use in noisy orchestras and recently discovered in a pile of stuff) and my recently acquired ear defenders, just in case I found a way that I could usefully use them.

It was an interesting afternoon and evening in many ways. It was interesting in the ordinary way in that I learnt some stuff from each of the lectures. I also saw several people I hadn’t seen for a few years, and some others I’ve seen more recently, and it was good to catch up with them. And, of course, it provided me with an opportunity to continue analyzing what I can cope with when I’m out in the world, and what I can’t.

Apart from the dark glasses and slightly more casual clothes than was the norm, the first thing that might have been described as slightly out of the ordinary behaviour was the way I sat during the lectures. I took my boots off and sat with my feet tucked under me, my legs up close to my body, in various formations throughout the afternoon. I nearly always sit, by choice, in some variant of this position.

Very interestingly, I went to a similar symposium in that very same lecture theatre a couple of years ago. I remembered sitting in exactly the same way. I wasn’t wearing dark glasses, but my clothes were still slightly more casual and I sat with my feet tucked up under me in the same way. And that was years before I knew anything about autism, about the beneficial effects of “pressure stimming” (I still have a whole blog post to write about that stuff sometime), and before I realized that I was doing something, perhaps a bit socially out of the ordinary, because that was something that my body needed to do in order to feel OK.

(As an aside, I made no other adaptions on that occasion a few years ago – and I remember it being one of the nights that I woke up in the small hours afterwards feeling sick, shaky and very very wrong – that was always the norm for me after such events. Now things are changing.)

My first real break with “doing what everyone else was doing” was at the tea break between sessions. I used the strategy that I’m now getting used to during the breaks of orchestral rehearsals – get myself a cup of tea then get out of the room with the voices and the noise and the crowds of people as quickly as possible. I went to stand outside in the quadrangle. I was joined by a friend (the one mentioned in the first sentence of Out to Dinner), who gave me a biscuit (a good idea, since I hadn’t yet managed to eat) and asked whether I was OK with him being there or whether I needed to be alone. Since I’m comfortable with him and he knows what’s going on in my life I was happy for him to stay. It wasn’t difficult out in the cool air away from the artificial lights and the noise of too many voices.

When we went back for the second session I knew that my senses were already beginning to tire as the sounds of the voices of those speaking seemed much much louder than they had done during the first session. I decided to try the earplugs. They helped. And not only did they help with reducing the volume of the speaker’s voice to a manageable level, but they really really helped with one of the most painful noises of all – applause. I’m now trying to work out whether there’s any way I can use them in concerts, because applause is a sound that I’ve always found, at best, unpleasant, and at worst, really very painful.

I also felt perfectly justified in wearing something in my ears to alter my hearing perception because there were several in the audience also wearing things in their ears – though they were trying to enhance their hearing and I was trying to reduce mine!

Interestingly, I also looked round to see what other people were doing in terms of stimming. I noticed someone rubbing their hands, someone playing with a pen, and someone jiggling their legs and playing with the hem of their trousers! I’m noticing all these things much more nowadays (again, there’s a whole blog post to be written about this – I have so many things I want to write about, but I can’t make all the words at once)!

After the second session there was a drinks reception in a very reverberant space. I stayed for only a few minutes because I knew it was seriously overtaxing my system. I left everyone else to it and went outside and sat on a step, rocking, in the twilight (and the freezing cold – really should have taken a coat) and put my ear defenders on. I was there for maybe half an hour until the cold got the better of me and I ventured back inside, still wearing my ear defenders, and eventually found a couple of friends and we headed off to dinner.

That time alone, cutting the world out, making everything as silent as possible (not completely silent, but significantly better), and stopping all interaction or worrying about sitting still, really really helped. I would have liked to be at the reception. I would have liked to have been drinking wine instead of elderflower fizzy stuff, I would have liked to be networking, chatting to friends, catching up with everyone, looking at the exhibits and so on, but I am learning that this is the sort of thing that I need to ration very very heavily in order to be able to stay well. This is one of the ways in which I am, perhaps, most disabled – I cannot take part in events such as noisy drinks receptions for any length of time unless I accept that it will have a seriously negative impact upon my health. I have long known that parties and so on tire me beyond belief and cause me to become seriously unwell afterwards – I do at least now know why and I can start to control things a bit.

Refreshed from my “time out”, I was then able to go into dinner, chat to people around me with some confidence, and to spend an evening in the Common Room, which actually turned out even to be enjoyable. My best friend ensured I was sitting in a reasonably advantageous position at dinner (as close to a corner as possible to avoid sensory input from all directions), I took care not to over eat, as before, and later, when I started to feel slightly dizzy and unable to comprehend words while standing and increasingly failing to take part in a group conversation, I went to sit down. I’ve also discovered that I find conversation much easier when I’m seated – If I’m not using energy to stand then I have more available to be able to convert thoughts to words!

So this week’s “event” went well. It was also easier than previous times doing similar things have been. I suspect this is partly because I’m starting to see a bit of recovery from burnout, partly because I have a new-found confidence following my diagnosis (more on that in a future post), and partly because I’m learning what strategies work to help me get through such an event without ending up sick for days afterwards.

Admittedly, I had to adapt my behaviour quite considerably yesterday, I didn’t get out of bed until after 2pm today, and I wouldn’t have been able to hold much of a conversation this morning (I tried a little speech earlier but it was really hard work and since I’m here alone I didn’t even bother using that amount of energy for anything more than experimental purposes), but it’s progress. It’s working out how I can best function in the world and get the most possible out of life without destroying myself in the process!

Sensory Reaction

78-2016-12-29-22-16-01An event
Occurred.

I knew
In my brain
That I should react.

But how?

In the past
I would use
Knowledge
To do what
Was expected.

But that was the mask.

So I searched
For real emotion
And found
Blankness.

A few odd tears
Annoyingly blocked nose.

But…

My husband
Speaking normally
Sound levels rocketing.
Quieter quieter quieter,
Please.

Turned the TV down and down
Until it was silent.
Subtitles only.
The sounds of
Electronics
Screaming in my ears.

And the light
Becoming brighter and brighter
A million watts of bulb
Was how it seemed.

Light off.
Lamp off.
The pain of the light from the TV
Until that too extinguished.

I hid my face
Behind a blanket
To shield from the
Reflected light
Of my husband’s laptop.

I had a bath
In almost darkness
With a tiny camping lamp.

Then went to bed.

My head
Totally
Overloaded.

My reaction:
Extreme
Sensory
Sensitivity.

Too Feely

59-2016-12-15-10-49-11Just last week, in my facebook memories, there appeared a status from a year ago. My husband and I had been having a conversation, prompted by something we’d seen on the TV, about how well we slept. I had said at the time that having a husband who pulled the bedsheets and altered their tension or made wrinkles in them was definitely detrimental to good sleeping.

A year ago I didn’t have the first clue I was autistic. I had never heard of sensory processing disorder or any of these sensory sensitivity issues. But I knew, absolutely knew, that one wrinkle in a bed sheet was a disaster! Always had been. Bed sheets should be flat and smooth, with even tension throughout. Anything else was bad. I’ve always been a bit “princess and the pea”ish about where I’ve slept, arranging things so I can’t feel wrinkles, and making sure nothing felt “wrong”!

And it’s not just about bedclothes. Right back to my childhood I remember things that made me very very uncomfortable. I grew up in the 1970s, when polo necked jumpers were very popular – I remember pulling at the necks, trying to make them bigger and looser to stop the feeling that I was being strangled. It was even worse when they were made out of wool and to add to the strangled feeling there was this tearing cutting feeling everywhere it touched my skin, as though I’d fallen into a bramble bush or something. I remember being desperate to have a pair of jeans because they were fashionable, but then feeling utterly terrible when I tried to wear them (this was before lycra and stretch made such things wearable) and they felt like they were cutting me in half at the waist.

I also remember, as a child, being in a school play and having to wear make-up as part of my costume. The teacher put lipstick on me and instantly it felt absolutely horrible. Totally disgusting. I told the teacher this and she told me that I’d understand when I grew up and that grown up women loved lipstick and wore it every day. I had a brief flirtation with the stuff in my teens, but it still felt, and smelled, and tasted, absolutely vile. I think I wore foundation twice, before chucking it in the bin because it made me desperate to wash my face because I felt so horrible and dirty and it smelled so bad. I’m 45 now, and I still haven’t become that grown up woman that the teacher told me I would, and now I know that I never will, and the teacher was wrong.

Another of the “grown up woman” things that I ditched in my 20s was the bra. I can bear to wear a wide strapped sports one for the duration of a run, but while I’m actually running only. If I try to drive home after a race or training run still wearing it then I start to feel sick, the cutting pressure across my back, the feeling of the straps digging in, like someone’s trying to slice my skin open. I haven’t worn a bra in daily life for over 20 years, and I never shall again.

The same is true of anything made out of lace. I developed a certain tolerance as I grew up and things did improve as fabrics became better, but still, when I buy an item of clothing, I FEEL it. I will choose the thing that feels good over the thing that LOOKS good EVERY TIME! I also spend time every morning when I put on my socks, lining up the toe seams so they are symmetrical and perfect. I know there are some people with sensory issues who don’t like to wear socks at all – I am not one of them – the feeling of bare feet on the soles of shoes and sandals is not pleasant for me – I would rather wear socks. I am a person who wears socks with sandals, and I don’t care how many stupid memes tell me it is unfashionable – it is comfortable, and that is way more important.

I also mentioned, in The Discovery, how I cut the labels out of my clothes. I don’t know why people put labels into clothes, but every time I buy something new I take it out of the bag and go over it and remove the labels. I assumed that everyone did this, since it is such a routine and normal part of my life and has been for as long as I can remember. I then wash it before I wear it because the stiffness of anything that is likely to touch my skin is horrible. I don’t like the scratchy feeling or the way new clothes smell. I am a person who exists most happily in old t-shirts, elasticated-waist jogging bottoms, and fleeces. I can dress up smartly for an evening, and sometimes do, but it is always temporary, and the posh clothes are off the instant I’m back in the door.

I have spent years wondering how people can go to work all day in a dress, with tights, and high heels. I have marvelled at how they endure the pain of wearing a bra day in day out. I have been overwhelmed by their toughness, their resilience, and their fortitude in the face of what must be so devastatingly painful, and I have long known that I could never be like that. I had a job once that required me to wear a suit. I lasted a month. Just getting dressed for work each morning was so traumatic that I was in tears every day before I even left the house. I eventually went off sick from that job and never returned to it.

In the same way that I have to remove labels from clothes, I also feel a need to remove stickers from books. If I’m reading a book and it has a barcode sticker with an ISBN number on the back and I can feel the raised sticker as I hold the book it distracts me from what I’m reading to the extent that I don’t take the information in. Just as with clothes, I get home from a bookshop and remove anything that might interfere with the smooth surface. Where other people might not notice, I do.

And I was astounded to read, in one of the many books I’ve been reading on autism, about the autistic woman who, when kissed by anyone who left a slightly damp patch on her cheek, instantly felt the need to wipe her face. I am exactly the same. There feels something so terribly wrong, like the surface has been disturbed, and I need to straighten it, to stop the feeling of blemish, of cold and wet.

I am also sensitive to what is on my fingers, and, for many years, have washed my hands in such a way that I thought I had some sort of obsessive washing tendencies, but I realise now that the cause of my handwashing antics is actually to do with sensory issues. I cannot BEAR to have sticky or greasy fingers. Given the option I will eat cakes or pastries with a fork to avoid touching them with my hands, and this isn’t, as I’d wondered, a germ-related thing, but the dislike of feeling sticky or dirty. If you see me eat a bag of crisps then I will most likely wipe my hands on my trousers after every single crisp. If I’m in a place where I can, I’ll also get up and wash my hands afterwards. If I’m out, then I will do everything I can to eat a cake from the packet without touching the cake – I’m quite skilful at it. And when I’m in a position when I can’t do any of these things, it uses extra energy, extra resources, and makes me more tired, more likely to go in the direction of meltdown, and so on. I’ve long marvelled at people who seem so unfazed by eating with their hands, or by people who seem, so effortlessly, to put their hands into mixing bowls when baking, or who think gardening is therapeutic, yet it involves touching soil, which is, for me, a very unpleasant sensation.

I’m the same with crockery and cutlery. My husband is quite used to me sending mugs or knives or forks back because they “feel wrong”. He doesn’t have the same sensory issues that I do (if anything, he is undersensitive to such things), but he will wash them again and again, to make them right. I have, on occasion, been home alone and “my mug” has been greasy in the sink and I have spent all day without a cup of tea as a result. This is what happens on my worst days. On days when I have more energy I will steel myself to wash the mug, and then wash my hands afterwards until they’re back to how they should be, and how they feel right.

It’s a constant balancing act, but what’s so extraordinary is that these things have all been part of my life for decades and I’ve never had the faintest idea why.

Until I started reading books about autism and sensory issues!

Bingo!

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!