Musings on functioning labels (AKA a day in the life) – Part 1

[When I started writing this post just after the offending day I didn’t expect to have *quite* so much to say! I’m going to publish in two parts because I think it splits quite nicely between home and work life in post sizes which are a bit more in-keeping with my style – I don’t want you getting any great expectations for future posts, they will probably be back to the usual word count!]

Last week was pretty awful, culminating in a hellish Friday. I want to share about that day in particular because I am tired of being ignored for being ‘high-functioning’.

I woke up feeling quite good surprisingly. In the past few days I have managed to get to sleep at around midnight and wake up of my own accord at around 9am. This is unusual because for the past 6 months I have struggled to sleep before 2am and have consequently not been able to function before about 11am because I NEED sleep. This may seem like laziness or exaggeration to all you ultra modern people out there, but I do NEED it. At least 9 hours, if not more. I am not making this up, and I cannot push through. Believe me I have tried. I really wish I were different (I would be able to accomplish a lot more with my life) but if I don’t get near the right amount of hours I spend the day in a daze and cannot remember anything I have done. Which is how I’ve been for the past two years.

So, I was feeling pretty good. I guess I’d ought to point out I mean mentally good. Physically I’m doing crap. I have a weird chest pain problem which flares up over winter. I get stabbing pains through my chest at random (even when sat sit). When I try to move (by move I mean sit up straight, stand up, breathe) I the pain gets worse. I cannot lift anything heavier than a book without the pain increasing, I cannot twist my torso, I cannot walk far or do anything that increases my breathing rate. I get these strange dizzy spells where the world shakes. These happen at totally random intervals. And, I’ve been feeling constantly nauseous for the past few weeks.

I hope you get the picture. This for me, at this time in my life, is feeling alright. Pretty much as good as it gets.

I get my work emails to my personal phone (probably a bad idea, I know), and I saw a client demanding some work be issued that day (bearing in mind it had only been requested that day!). I know my boss would have stayed up all night to get it done for me, so as I knew I was feeling OK I offered to go in and sort it out so she could get on with her own work and have a weekend.

Now I was just going to say I got ready and went into the office, but I don’t think that really captures the reality. For me the process between getting up and leaving the house goes something like this:

I will get up out of bed and stand for a few minutes. I think I am trying to work out what to do next, but nothing really comes to mind.

I might start to wander toward the bathroom, or the spare bedroom. I might notice some rubbish on the night stand which needs clearing. I might see my laptop and think ‘I’ll need that at work’ so start to pack it into its case. This usually doesn’t get completed as I remember that I am not supposed to be tidying my laptop at this point, I am supposed to be having breakfast, or having a wash, or putting the kettle on.

I suddenly realise I am bursting for a wee so I dash to the toilet.

As I am on the loo I realise that it would have been most efficient to put the kettle on before going to the bathroom so that it could boil whilst I wee, and I chastise myself for not getting the process right.

I go down to the kitchen. I have probably forgotten what I am supposed to be doing there so I stand in the middle of the room turning in circles chatting to myself, which sounds something like: ‘Now what I am I supposed to be doing?’, ‘I need to have breakfast.’, ‘I need to put the kettle on first’, ‘Now what?’, ‘Breakfast’, ‘Cereal’, ‘Where is that?’, ‘Over there’, ‘Oh I need a bowl’, *opens fridge* ‘We don’t keep those in the fridge’, ‘Now I need milk’, ‘Is my tea done?’, ‘I need to clear the teapot’, *cleans teapot* ‘Where is the milk?’,’I didn’t get it out the fridge’, ‘Now I need to pour my tea’, ‘Oh I didn’t put the hot water in the teapot’, ‘This is so inefficient, you should have got this sorted now that you are an adult’, *puts tea on table* *sits down*, ‘Oh I don’t have a spoon… or a mug’, *off to get them* *sits back down*, ‘Do I have everything?’, ‘Maybe? Probably not. But let’s see how it goes.’

This isn’t some mornings. This EVERY morning. Or some variation on a similar theme.

Once I am done with that farce, I go back to the bathroom. I wash my face only to realise that I have already done that this morning (my face felt horrible when I got up) and what I’d intended to do in the bathroom was brush my teeth. I need a shower. My hair is so dirty I wouldn’t need gel or hairspray (if I ever used them) it is staying at every and any angle I am pulling it into. Gross. But I’m already running later than I’d hoped. I want to get to work, sort this out and get home in time to recover before I have to go out again this evening. The shower will have to wait. Hardly anyone is in the office on a Friday anyway.

Luckily I am currently feeling pretty blasé about my appearance. I’m back to jeans and a t-shirt/top most days, following my uni ‘dress and leggings’ phase. I wear the same jeans all week with a choice of a few tops. This makes dressing OK. I usually just go with the top that most describes how I’m feeling that day: ‘particularly sensory sensitive’ = soft snuggly top (which I now wish I had bought in every colour but can’t find in the shop), ‘really don’t care what you think, I can do my job however I look’ = t-shirt and hoodie, etc.

One thing about winter that I hate (I am, in general, a big fan of the season) is the necessity of socks brought on by the need to wear shoes. I wear flip flops for as long as possible during the rest of the year (until my feet start getting wet on a regular basis). I don’t like my feet (or hands) feeling hot and/or sweaty. It really grosses me out. But now it really is too cold and wet for bare feet I have to suffer the sweat inducing torture that is socks and shoes.

FINALLY, after all that I am dressed and ready to go. I will be running late by this point as I generally plan my time in the hope that I will miraculously function like a neurotypical in the morning, which leads to the daily reminder that I am still autistic. I will probably have forgotten to brush my teeth and/or pack my work stuff which leads to more flappy running around whilst internally chastising myself with the mantra: ‘more haste, less speed’. I will usually leave the house with all sorts of ‘things’ bundled in my arms; I don’t seem to manage putting my coat on or carrying my bags properly in my haste to be out the door. This often leads to things being dropped and broken, and additional feelings of guilt about my unsuccessful adulting.

[Account of work day to follow…]

I hope this gives you a flavour of my usual morning. I honestly have little reference for how similar this is to an allistic experience of the same events (as I only experience things through my autistic brain), but I’ve got the impression from interactions with my husband and family that it might be quite different. My hope is that I can shed light on how even those who some deem to be ‘not that autistic’ might struggle in ways you didn’t know with even the most ordinary tasks. As this is a description of my morning, you might put my struggles down to tiredness, but let me assure you it would not matter how fatigued I was, what I describe is the best it gets.

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