Special Days

I’ve never really been a person who makes a big deal out of “special days”. I’m the one who never sends Christmas cards, the one who sends birthday cards to everyone at the same time about once every five years, the one who never bothered with bonfire night or Halloween or sending valentines or waiting until Easter day to eat chocolate or marking nearly any other sort of “occasion”. I should imagine that greetings card retailers would very soon go out of business if everyone was like me. The only days that have been an exception have been New Year’s Day, when I’ve tried to set goals for the coming year, pancake day, when we have pancakes for supper, and our wedding anniversary, when we have potted meat for breakfast!

Since the advent of the internet, however, these “special days” seem to get rather shoved in my face. And many of them are really ones I’d rather not think about. This time of year seems to be awash with “days”, and I’m not really enjoying the whole “day” experience very much right now.

On Sunday it was Mother’s Day (or Mothering Sunday, depending on your preference). As an infertile childless person, Mother’s Day really really doesn’t work for me. It’s a reminder, every year, of something big and painful and missing in my life. I know I’m not the only one who feels this way about it, for a variety of reasons. This year I tried to spend most of the day staying off facebook, but that was also, in its own way really tough – I now have very little life that isn’t online, and cutting myself off from my only real social life can feel really lonely at the moment because I’m not well enough to do anything else that would otherwise distract me for the day. I had been coping, just about, with life until then, but that really was the last straw, and I’ve really been struggling since.

Then, of course, next weekend, we have April Fool’s Day. Another day when I’ve tried, by and large, to stay away from any sort of internet or TV until midday. I have never understood the premise of April Fool’s – it seems to me to run thus: tell a lie, then when someone believes your lie, tell them they’re stupid! And some people, for some reason, find this funny. I KNOW I don’t get this sort of humour – I never have, and my memories of the day as a child were that people constantly told these lies, then told me I was stupid, and the whole thing is an exercise in embarrassment and humiliation. I got to the stage where I simply didn’t believe ANYTHING anyone said on April the 1st in order to save everyone the trouble. I’m quite happy to declare, these days, at the outset, that I know I’m an idiot, I know I can’t tell if it’s a joke if you don’t put a winky face by it, and please don’t complicate social interaction further by deliberately saying stuff that’s false (the same applies, by the way, to the internet “jokes” where someone then “catches” you and sends you a message telling you that you “fell for it”).

And now, to add to the pain of Mother’s Day, and the humiliation of April Fool’s day, there are two “new” days to add into this time of year. It is, apparently, World Bipolar Day on April 30th and Autism Awareness/Acceptance Day on May 2nd.

So here am I, an autistic person with bipolar disorder, sitting here wondering what I should do about this. Because here am I, supposedly articulate intelligent blogger with insider knowledge of both bipolar disorder and autism, and I should really really be doing something about these “days”.

But I am stuck. I cannot “perform to order”. My husband writes a weekly “column” for an online magazine, and has to produce this thing week in week out, whatever the weather, however many meltdowns his wife had that week, and however many times he was required to go to the shop that day because the only damn thing she’d eat was milkshake and cheese and we’d run out of milkshake and didn’t have the right sort of cheese. He performs wonderfully – he is a skilled enough writer that even when his spoons are running low he can still write, just as even when mine are low I can drive a car and play an orchestral viola part without much difficulty. However, I am NOT a skilled writer. What might or might not be apparent from this blog is that, although I might post the posts on consecutive days, I often write three or more in one sitting but then don’t post them all at once. I have days when I can barely even write a facebook status – so the thought of having to produce something particular for a particular day throws me into a horrified paralysis where I can’t produce anything at all.

So I feel guilty, because I should be doing something spectacular for these days. I should be making memes and posting them on the facebook group. I should be explaining bipolar disorder and autism to everyone I meet in the street. I should be helping others with both conditions (conditions was the best word I could think of here) to understand and to feel less alone and more loved and all sorts of other lovely positive feely helpful stuff. And I really can’t do all that just at the moment, because I don’t have the spoons. In recent months I’ve spent a lot of time on groups with autistic people – I’m becoming aware of the vast variability in people’s experiences of autism, I’m learning how offensive many autistic people find the “puzzle piece” to be and how it’s tied up with all sorts of harmful and damaging therapies that attempt to make autistic people “look normal” from the outside, while breaking them inside (one of the advantages of not being diagnosed as a child is that nobody actively tried to “cure” me, although the exterior pressure to conform and to behave “normally” did damage me very badly anyway – I looked great in my early 20s, and if I’d been known to be autistic as, say, a 23-year old, then I’d have been held up as a model of “success” and my graduation photos would, doubtless, have been turned into memes and plastered all over facebook if it had existed, but the damage was being done inside to such an extent that by the time I reached my late 20s it was a totally different story – they wouldn’t have been making memes about my life at 29, which largely consisted of breakdown, burnout, spending night after night banging my head against the wall, and downing bottles of whisky and boxes of pills in an attempt not to wake up the next day or ever again).

And I should be telling this tale. And I should be learning all the politics and finding out which organizations are listening to autistic people and which are not. I feel like I should be going online and telling parents to let their autistic children flap their hands and jump up and down and communicate in ways other than by speech and eat soft food and wear comfortable clothes and so on and so on and so on. And, as an autistic person who can communicate by writing, I should be advocating for all autistics to be able to be themselves because none of us should have to mask or pretend or to be abused or to damage ourselves in order to “fit in” with a world that is difficult enough to cope with anyway.

But I’m still struggling with my own issues right now. I’ve had my diagnosis for only just over 5 weeks. I didn’t even have a clue I WAS autistic until just over 7 months ago. I’m still adjusting. I look at the people who have written much better blogs than this and had books published and all sorts and I feel like I should be doing the same (I was brought up to be a high achiever – the fault of the exam results discussed in Expectations Gone) but then I remember I’m really very very new to all this. I’m also coming to terms with my own childhood whilst being exposed to parenting issues in a way that is really tough as I’d largely withdrawn from anything to do with childhood or children prior to autism stuff entering my life. And I’m in the midst of the menopause and getting used to the idea that my father has terminal cancer and trying to navigate the stresses of applying for benefits so we don’t end up bankrupt. So my head is rather full.

I lay in bed this morning wishing I’d never met my husband – because he is the one who has kept me alive and if I’d never met him I’d be dead by now and all this malarkey would never have happened. I’d have cosily committed suicide some years ago and my affairs would all be long since dealt with. (This sentence did, of course, prompt me to think that there must be a “suicide day” too, so I googled it and discovered that it’s not until September, so I don’t have to worry about that one for the time being, which is a relief). But that’s how low my spoon drawer is right now. (I KNOW this place, I’ve been there many times, and I’m not in immediate danger so don’t worry about sending the cavalry – my executive functioning is too poor to do anything drastic right now in any case and my autistic adherence to routine is keeping me going in a bizarre sort of a way). I’m better than I was earlier today, but in order to start to feel better my speech had to vanish – I have spent most of the day today completely nonverbal from a speech point of view (I often feel very very ill and extremely bad just prior to my speech disintegrating, and when the words go it is usually a big relief). Fortunately I didn’t have to be anywhere today or make any telephone calls!

And so, for now, I come to the conclusion that the best I can do is point people to this blog, which is the place that, so far, I have best managed to explain the many many thoughts that are in my head, and where I have translated more thoughts into words than, possibly, I ever have before. Of course, I’m not very GOOD at pointing people to the blog (although I’m trying), because I’m possibly one of the worst publicists in the history of publicity, but it’s here, and it is what it is. For myself I need to practise enough self-care to get through all this. I need to try to eat and drink regularly. I need to continue to use this blog as something to help me, rather than something to stress me (I’m not, after all, being paid to write it, and nobody asked me to write it – I sometimes wonder if anybody’s even reading it, although indications are that a few people are glancing through it from time to time).

Maybe I’ll see something on facebook that will trigger a blog post relevant to one of the “days”, or maybe it won’t. Maybe I’ll be more equipped to talk about awareness or acceptance or whatever next year, and I need to cut myself a bit of slack for now – I can’t answer every question on facebook or call out every mistaken post or fight with everyone who posits some crazy idea – I just don’t have the energy. I’m very much having to choose my battles right now!

Vague Head

Yesterday I posted the following status on my facebook:

Somewhat “vague” today. Not bad, just somewhat purposeless and lacking in any sort of knowing what to do. I’m sure there’s something must need doing, but I haven’t quite figured out what it is. And my head’s doing that “wandery” thing where it can’t quite figure anything out!

And later, replied to a comment on that post with the words:

I’m in one of those moods where I want to write stuff. But the head is blank. There’s nothing there. The little translation people in my head who sort the words have taken a day off.

As it turned out, I wasn’t wrong that the little translation people had taken a day off. By the time I got into bed my spoken words were becoming somewhat nonsensical, and by the time my husband had fallen asleep, they’d gone completely. I didn’t manage to get any sleep myself until nearly 4 am, so it was a rather tedious night. Even by this morning I still wasn’t able to ask him what time he’d be home from work because I couldn’t summon the energy to form a sentence that long and complicated.

And I’ve spent most of this morning in a state of some sort of shutdown. And that sort of “sad” feeling pervades. And everything seems to be a bit triggering and there are so many things on facebook that make me angry but I don’t quite have the capability to debate them because I’m right at the start of this process and I haven’t yet got to the stage where I can analyse and present the arguments in a way I want, so I read that according to the labels I’m supposed to be “high functioning”, because I could speak as a child, and I feel so desperate because I can’t remember how to work my socks and it’s nearly 2 pm and I’ve not yet been capable of eating or drinking anything, but that’s OK, because I’m “high functioning” so my life must be brilliant, like those autistic people in silicon valley who can do computer things without crying and so on. And everything’s all jumbled up in my head and I can’t really quite get the spoons together to make sense of it all, so I just sit at home in my horrible dark messy flat, staring at the forms for the state benefits I don’t want to claim because they scare me so much but I know I have to because I cannot hold down a job and my husband’s working flat out and we’re still not breaking even. But it’s OK, because I’m “high functioning”, and my sort of autism would be described by most people as “mild”. And there are parents on groups talking about their autistic children as some sort of tragedy and saying that because their children are “severe” they will never be able to live independently and that the adult “mild” autistics don’t understand. Even those of us who cannot live independently – independent living is a distant dream for me, a world that I might never attain! And they even have children at all, which, to someone like me who was never able to have any, seems terribly ungrateful. And I see the success stories and the smiling graduation pictures and I remember how hard I worked (not at the subject, but at being able to live) to get through my degree, and the early morning drinking to enable me to cope with the world, and the picture that everyone else saw of a smiling person in mortarboard and gown and how much damage I was doing behind the scenes by pretending to be strong that by the time I was in my late 20s I was downing bottles of whisky and packets of pills in the hope that I wouldn’t ever wake up again.

And all this goes round and round in my head like some sort of mess, from which I hope, one day, to extract some sense, some coherent argument, some way of trying to explain all this to people that they will understand, that they will think about. And how important it is not to pressurize autistic people into appearing “normal” from the outside because it is doing us so much damage on the inside. And I sort of hope that people will realise why all this stuff is so triggering and difficult for so many of us, but I realise that many of them probably won’t, and just like I’ve had to learn in other areas of my life, there are times when I really should hide the offending posts on facebook and move on, because my own quality of life is often so poor that I need not to make it poorer by staying awake all night, nonverbal, triggered by all this stuff, and wishing that I’d never been born because my life is such a bloody awful mess. And even as I type that sentence I’m worried that I’m lining up “nonverbal” next to “triggered” and so on, and I want to go back and change it (but I don’t have the spoons) because it implies that nonverbal (which really should be called nonspeech anyway because typing is verbal, just not spoken) is bad, and it isn’t, at least not from the inside – it feels calmer and less stressful than trying to maintain conversation, which is often hard deliberate work. I usually find that I start to feel worse and worse when I’m trying to hang on to speech, but feel much better once it has gone, an inner peace that isn’t available when trying to communicate by talking. Yet so much of the outside world seems to see this silence as a bad thing. And I am confused. And now, reading that paragraph back, I realise how social media, which is largely responsible for triggering many of these thoughts, is simultaneously wonderful and difficult, because without it I would spend most of my life without any human interaction at all, but with it I am exposed to things that are often difficult to cope with. And there’s another whole blog post to be written about that too.

And as I type this I wonder whether even to post it. Because I want to make proper, reasoned posts about all these things at some point, and I want to explore as many angles of the debate as possible. Despite my never having succeeded in academia, I am an academic at heart, a scientist, a person who tries to be as rational and logical as possible and to try to understand the opposing point of view in arguments, even if I subsequently dismiss that point of view.

But I am also just a person. A very broken person, with a lot of baggage still to unpack, a lot of self-esteem issues to deal with, a lot of practical problems to tackle, and a very very struggling head that doesn’t even think in words and needs to expend vast amounts of energy to translate the concepts and pictures and feelings into words in order to communicate them to other human beings. Even then, I don’t always get it right – it’s clear from replies to things that I say on facebook that others don’t always understand what I mean and maybe I’m not clear enough.

Note: I ran this post by my husband, who suggested that I add the words “I do understand that people who say ‘you aren’t broken’ are trying to be helpful but it is often the opposite of helpful so please, if you would like to know how to help, you can start by not telling me ‘you’re still you’ or ‘you’re not broken.’ Thank you.” (There’s a whole blog post to write about that at some point too – the extent to which I’m “me” or “broken” is massively complicated in my head and I need to work it out for myself, which will take some time).

I will do the proper blog posts at some point. The ones on my list, in which I discuss functioning labels, in which I discuss speech, in which I discuss how damaging internally it can be to an autistic person to try to behave socially in the same way as most other people can, and about how some of us who have been doing it unknowingly for decades have struggled to work out why life has consistently been so tough and gone so very wrong and have ended up so very broken and burnt out as a consequence of putting in so much effort for such a long time.

But I need more time for those. I need the soupy mess in my head to settle, so I can see. I need to do it when the translation mechanism is running smoothly and my head is clear and I’m not dealing with so many other things at once.

If I do decide to post this, then it will feel like one of the “braver” (to use a word that others have used to describe this blog) posts, because I am raising issues that are difficult, and I’m doing so without even having the capability to debate them, or with the backup of sufficient knowledge in my head, which feels like a rather frightening, and maybe risky, thing to do. But one of the things I was determined to do at the outset of this whole blogging enterprise was to try to be honest (or, at least as honest as I can be – there are things I have to leave unsaid sometimes to protect other people because my story is my own, to use as I please, but where it intersects with the lives of specific others I sometimes have to tread more carefully).

Maybe, however, it will be worth it if it encourages others to think about these issues. Although I know I’m already triggering myself massively just by typing this stuff up, never mind what will happen if I post it.

Perhaps the very best course of action at this point would be to go and see whether the connections in my head are working sufficiently well to make a cup of tea. And if they’re not, to get someone on social media to talk me through the process so at least I’ve had a hot drink today, even if nothing else!

Still Processing

75-2017-02-24-13-42-19I’m in one of those slightly frustrated phases right now. One where my brain really wants to get on and do things and to try to sort out my life, but my mind is still very very busy processing recent events. It’s now just after midday on Friday and I feel as though I should be able to “just get on with it” now, although I’ve just calculated that it’s nearly 96 hours since I received my diagnosis, and, when I put it like that, it’s no wonder I’m still trying to take things in and trying to work everything out. And when I then remember that I’ve never been very good at processing feelings, it’s even less surprising.

My week so far has run thus:

Monday: Five hour autism assessment in an unfamiliar town, concluding with clear diagnosis that I am autistic. Drive home and sit, almost unable to move. Sleep a little. Eat a little. Drink wine.

Tuesday: Utterly exhausted. Hardly able to process. Wrapped in compression bashing myself against the sofa. Short blog post written but unable to post. Good feelings, but not ones I can articulate well. Relief. Shock. It’s real.

Wednesday: A bit more functional. Able to post on the blog and write a couple more posts in draft. Sort the house a bit. However, start to feel ill in the afternoon and completely lose speech early evening. Speech never returns all night.

Thursday: Attempt to get up at reasonable time but fail. Head won’t work properly at all. Publish one of the draft posts. Afternoon lose functionality and retreat under weighted blanket. Attempts to sort out jobs lists fail. Plan to do stuff tomorrow.

Friday: Finally make it out of bed around midday after frustrating morning in bed. Realisation that things I wanted to do today are beyond me. Just getting this far is an achievement. I also had a spell trying to establish whether I was lonely or bored – I’m not sure I can distinguish between the two.

If I stop beating myself up (not literally – though the impulse to tear chunks out of my skin is very very strong this morning and is taking a lot of energy to resist), then looking at this objectively, I see that 96 hours out from receiving an autism diagnosis at age 45, it’s actually not that surprising. I know from what I’ve read on forums and groups and in books that getting a formal diagnosis is an amazing thing, but I also know that it takes some processing, and moods can be erratic for some time afterwards until the system settles down. My brain and my learning and my reading knows all this stuff. And, I have to keep reminding myself, AUTISTIC BRAINS DO NOT LIKE CHANGE!!!!

I keep forgetting this last piece of information, and I always believed myself to be quite flexible, but when I actually started looking at the evidence it turned out not to be the case. I need a new handbag – my old one is too small (since the advent of multiple pairs of spectacles and lots of stim toys). I have a new handbag. It is very nice. I like it. It will be a very good handbag. But the notion of changing to a different sort of handbag is freaking me out. Bigtime. The new handbag has been waiting for a month so far. I am too frightened to take the stuff out of the old handbag and put it into the new one, because I know it will feel wrong for quite a long time until I get used to it. Autistic brains. Change. Don’t like.

And, of course, this is why we get so tired. Conscious brain has to be employed constantly to compensate for the strong messages coming from the autistic bit. There is the neverending internal fight between what I have always termed “brain” and “mind”. In my head, always, I have had to employ vast amounts of willpower from brain in order to overcome the evident illness (some of which now relabeled anxiety caused by autistic brain) of my mind. The terminology is a bit muddled here I know – I didn’t script this and am trying to write improvisatorily, which is rapidly turning into nonsense.

Back to the script.

What I HAD been hoping to do today was: sort out the jobs list, order a repeat prescription, send a few of the more urgent e-mails (I really need to sort my study situation with the OU because time is getting short, and if I’m to dine in College after a meeting booked for next week then I have to sign in), maybe visit my best friend (haven’t seen him for a couple of weeks and also need to catch up on meetings and assessments and collect my scarf, which I left there), call my mother (again, update on assessment, especially since she provided so much info about me age 0-4 and some beyond that too), hoover the flat (it’s at the point where if we had a visitor we’d have to provide overshoes for them to protect their shoes, but the loudness of the hoover and my sensory system’s state today probably mean that’s out), maybe do some maths (concentration nowhere near sufficient – I’m managing less than a paragraph at a time of my book on my current special interest (Chariots of Fire) at the moment), and what I really wanted to do was to go out and get a coffee and cheesecake (way too late now because the early morning quiet spell will be long finished, but I haven’t had coffee for so long), get a few jobs done (I need to go to the bank and buy one or two things), and maybe go and look at some food and see if I can get inspired to eat anything (I’m currently still on only about 1.5 meals a day, which really isn’t enough).

Of course, lined up like this, it’s obvious that someone who has had the week I’ve just had wouldn’t have a hope of doing all of that. Maybe just being able to list it here will be a start on sorting out the jobs list and trying to work out what really DOES need doing and what can wait for a while.

It’s also been on my mind all morning that I’ve still not managed to get back to proper running. This is not surprising, since I’m still very much in burnout, and the diagnostic process has taken a huge amount out of me, but it’s now looking less and less likely that I will be able to do any of the spring races I still have booked. One of my favourite marathons is unlikely to happen, and with it will go the expensive hotel room I booked last year. I don’t have the energy to do anything about it. Maybe we’ll go and stay there anyway, although at the moment the thought of going to a crowded city to watch a marathon I should have been running in just feels scary. I’d rather be on a deserted beach staring at the sea by myself. I’ve known for ages that my first hundred miler, booked for May, just isn’t possible in my current state, but saying goodbye to it is hard, and to the other marathon I had booked. Again – although I have to do this, it’s change, and again, change doesn’t sit easily with me.

So add all that to the inevitable exhaustion from Monday and it’s no wonder things are a bit rocky right now. I’m also almost climbing the walls waiting for the report from the assessment people, even though they told me clearly and straightforwardly, that it could take up to a fortnight because there was a lot of material to go through and times and so on and don’t panic. But still. I’m impatient.

And, my head is, predictably, making words in a very erratic manner. There are either too many of them (see above) or too few (see below). Writing the words below was probably my biggest achievement of yesterday! Who knows what my biggest achievement of today will be – I’ll have to see what I can manage. But I also need to keep reminding myself that the biggest thing of my life has occurred over the last 6 months and that 96 hours ago it was officially confirmed, and my head will still be processing it all for a while yet and I do need a fair bit of time just staring at a pea factory, curled up under my blanket, and rocking back and forth and so on.

I
Am
Autistic.

Three words.
Define my life.

I knew that
Before the assessment.

But

Now

It is
Real.

Knowledge.
Relief.
Validation.

But also change.

My head
Still
Processing.

I am autistic.
I am autistic.
I am autistic.

Dear head,
Got that now?

I am autistic.
I am autistic.
I am autistic.

Yes, really.

What’s odd is:

Nothing is different
And
Everything is different.

The feelings
(Various)
Strong strong strong.

Huge waves
Of emotion
Alternate rapidly
With
Numbness.

I still need
To let go
And relax

But
Too soon.

Although
Yesterday
My words gone
All evening.

Let the news
Sink in.

Absorb it.

It is big.

Take
Everything

One

Step

At

A

Time.

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.

Accepting Wrong

51-2017-01-05-23-23-12Sometimes I feel wrong.
And I don’t know how.
Just wrong.

It is not always easy to tell
What I need to do
To feel better.

I try moving and stimming,
Lights and soft fabrics,
But still wrong.

I look at my weighted blanket
And my compression clothes.
My skin recoils.

Maybe I’m hungry and need food?
So I go to the fridge,
And feel ill.

I probably need a meltdown.
I’m probably anxious.
Maybe.

Upcoming social events,
Assignments and commitments,
Already pressing.

Ongoing situation with assessment.
Still constantly flashing in my head.
Tough times.

Pushing myself in recent days.
All takes its toll.
Uses energy.

I listen to my body and ask what to do.
It just says it feels wrong.
No more detail.

There are feelings of something
But impossible to know
What they are.

Sometimes I feel wrong.
And there is nothing to do.
But live with it.

And wait…

***

About half an hour after I wrote those words I heard a bit of a kerfuffle going on in one of the rat cages. I went to see what was going on and opened my mouth to say “Hey dudes, what’s doing?” or similar, as I would usually do.

The words were gone. Completely. No possibility of producing comprehensible speech.

Fortunately rats don’t care about words. They respond to any sounds.

But I discovered what the wrong feeling was.

Impending loss of words.

Be Prepared!

45-2017-01-04-16-45-19Baden-Powell had it right. The motto that I learnt as a Girl Guide in my youth, and which the Boy Scouts also used, was spot on as far as surviving life as an autistic person is concerned. Preparation is key. Planning is key. Unexpectedness causes panic, anxiety, and, as it did for me yesterday, meltdown.

I thought I’d done something fun and nice and innocent. I shared a short video on my Facebook timeline, showing a recipe for a pudding made from biscuits, chocolate, and marshmallows. I thought it was a bit of fun, I liked the way the marshmallows melted in the oven, and that people might enjoy watching it. I didn’t expect any negative comments beyond “So sad I’m on a diet at the moment” or “Don’t let my kids see that – they’ll want one”.

Then I got up (I’d posted the video from my phone in bed), went to the immense effort of putting clothes on, thought, since it was already around midday, that I should at least try to get some nutrition into me (I’m having quite a lot of issues with food and often can’t eat at all until the evening when anxiety levels have reached manageable proportions). I went to the fridge and knew that the one thing I might be able to face was some milkshake, and that that would be good because it would provide both hydration and nutrition, and I could take my medication with it. Sorted.

But there was no milkshake. We’d run out. I resisted the temptation to message my husband to tell him because he’s on the very edge of coping – working all hours, fixing the washing machine, providing massive amounts of care. When he fails (to get enough milkshake) it’s not because he isn’t trying his best but because he has simply run out of energy.

So, by now it was early afternoon. I still couldn’t eat. I looked at the mug on the kitchen side and tried to work out how I might get tea to be in it, and couldn’t, because my brain couldn’t work out the many complex steps involved. I used the only energy I had to get a glass and fill it with water, because my brain told me that if I couldn’t get nourishment I should at least try not to dehydrate. In the absence of milkshake, water was the best I could do.

Then I went back to the sofa and opened up Facebook. There were comments on the video. Not good ones. Along the lines of “It’ll give you a heart attack”, “It’ll give you diabetes”, and, simply, “Yuk”.

When I saw the word “yuk” I burst into tears. How could I have got it so wrong? I shared something that I thought was so innocent, and all I get is stuff about horrible illnesses and yuk. I obviously fucked up big time. This is what I made people think of. Great. Nice one me.

I tried to reply about what a screw up I’d made, but could hardly type because I was shaking so badly and could hardly see through the tears. I really was wrong. A socially inept pariah. I would have to give up social media too. Evidently now the mask had disintegrated and I was starting to be my full autistic self I was losing any rational ability to see what was good. My judgement was screwed.

Socialising outside the flat is already limited because of the sensory overload. It was evident in that moment that socialising online was also falling to pieces. My life was heading for a simple “get up, stare at telly and play solitaire, try not to kill self, go back to bed”. Forget people. I clearly didn’t understand them. They clearly don’t understand me.

I already strictly limit what I post on Facebook. I have extremely strong political views, which anyone who knows me will know. I very rarely post about them – not because they aren’t passionate and strong, but because I know my mental health is too fragile to cope with the inevitable debate it would create. I have to limit the amount of news I currently take in for similar reasons. It’s not that I don’t care, but that I can’t cope. And by “can’t cope” I don’t mean “makes me cry and feel uncomfortable” I mean “would tip the balance between thinking that I want to be dead and taking active steps to be so”. So I avoid the triggers, because it is the only way I will get well enough to lead any life beyond staring at the telly.

I also avoid a lot of animal cruelty stuff, for similar reasons and because I know it upsets people. I go out of my way to be uncontroversial. When I see posts that upset me or of things I don’t like or can’t cope with, 99% of the time I simply hide them from my feed. Even if someone posts a picture of their dinner and it looks perfectly vile, I just hide it, as I do with other things that I know most people find harmless, but trigger a deep and upsetting emotional reaction in me. If I compiled a set of specific “trigger warnings” for me, it would probably surprise the hell out of people – some things that trigger bad feelings in me are, in most people’s eyes, absolutely normal, yet other things that many people consider triggering don’t bother me in the slightest. I know that my brain doesn’t work the same as other people’s do. I got that years ago. I didn’t need to know about autism to get that – it was obvious as soon as I knew I was a person at all.

So I’d posted a video of a pudding, and got this massive negative reaction. My brain immediately challenged the assertion that eating such a thing would “give a heart attack” because all available evidence suggests that people eat puddings every day without suffering myocardial infarctions and I don’t go into restaurants and see defibrillator machines being wheeled out with the dessert trolley. This was clearly some sort of “small talk banter” that is factually inaccurate but that I know people engage in. Ditto the diabetes claim, which irritates me every time I see it on a post of sweet food but the same people don’t post similar comments on other carbohydrates. Nobody ever comments on how much the slice of toast is raising my blood glucose, on how much the obesity you get from eating too much of anything and doing too little activity to burn it off is the contributing factor that can lead to diabetes in some people. Both the heart attack and the diabetes comments come from a general healthy eating thing and not too much sugar (or whatever is the health fashion at the time) but this ignoring the real facts to make some kind of “soundbite” is part of the world of small talk that drives me crazy.

I’m simplifying massively here. I’m not a medic and I know there are papers galore on this stuff written by people who’ve done the studies. But these glib assertions I see irritate the hell out of me every time. I’ve learnt, over the course of many years that this is what people do. I don’t understand why they do it. But they do. Usually I have enough energy just to like the comment and move on. But yesterday I didn’t. Every scrap of knowledge about heart disease and diabetes from the appropriate branches of my brain flooded my head and overwhelmed me (this is quite normal – one comment like this frequently triggers a huge wave of information release, and information that is not in word form, so I can’t even produce it to debate in real time).

And then I read the one comment that wasn’t about disease. And it simply said “yuk”. And everything along the lines of “if you can’t think of anything nice to say then don’t say anything at all” came flying at me. Why did this person have to be so horrible? Maybe they don’t like chocolate? Or marshmallows? OK. So just move on. Surely? But no, they have to tell me that I’ve shared something horrible, that repulsed them. To make me question my sanity.

At that point I feared a whole slew of comments about this awful awful disease-ridden vile thing I’d shared. I’d clearly got it so so wrong. So I deleted the post. The most I could then manage was a tearful emoji on my wall, and one further comment before my words disappeared. I couldn’t speak. I couldn’t even make enough words to type a coherent sentence. I closed Facebook and sat there wishing I had the means and the energy to end my life.

Then, once the meltdown subsided, I thought “Oh shit, husband might be worried”. So I opened Facebook again and found a message from him – just a question mark. He knows when not to involve unnecessary words. I did the best I could to explain, and to say that there was a whole load of shit broken out on my wall but that I was still almost nonverbal so couldn’t even do anything to explain what had happened. Neither could I even thank those who were being nice, nor enter into the discussion that had started involving cake, and eating issues in general. Fortunately we can communicate without sentences. He knows what I mean, even when the language is only partially formed.

So he did his best to explain, and I’m now doing the full job, via a blog post, because what happened raises one of the things I’ve known all my life. I need to be prepared.

Almost everything I do is planned. If I am going out somewhere then I look it up beforehand. If I need to leave the flat to buy a pint of milk then I prepare for several hours. I have it in my head. When I go and visit my friend I know what will happen. His wife will open the door. We will say hello, I will go upstairs to my friend’s office, sit in the usual chair, and he will just finish the e-mail he’s writing then we will chat. All these normal things are routine. Done before. I prepare for them in my head, but I am fairly certain of the outcome of my actions.

If I am doing something risky or unfamiliar I prepare myself. I know it will be hard. I know there will be unknowns. I know these unknowns are stressful. Therefore I prepare. I put a mental guard up. This is exhausting and takes a lot of energy to do, so I only do it when I have the available energy or when I absolutely need to. So, if someone invites me to, say, play in a new orchestra, I have to factor in the energy of the guard, because I’m going somewhere unfamiliar, meeting new people, and so on. I also have to make new scripts for these occasions, and know that I might even have to improvise conversations and people might ask me questions I haven’t thought of or discuss things unfamiliar to me. So I have the guard. It uses energy. But it protects me.

If I did decide to post something controversial on my Facebook wall I would only do it when I had a lot of energy. I would put my guard up. I would expect negative comments. I would be prepared for debate, and for it to feel rough, and to trigger emotions, and to feel dangerous and scary. I would have already scripted answers to many of the questions I anticipated. I know there are certain people’s timelines that are full of triggers and scary things. Certain groups that I can only cope with sometimes. I only look at them when I have my guard up (sometimes only when my husband is at home with me so we can discuss whether my reaction is correct or not).

I prepare myself. I know that the new thing or the controversial post or the triggering group needs to be approached only when I’m feeling up to dealing with them.

But, when I posted a video of someone making a pudding, I was not prepared. The wholly negative reaction that video produced sliced through my system like an electric shock. I allowed myself to look at the Internet without my guard. As myself. Soft vulnerable bit exposed. Being myself (as people are so fond of telling me to do) means being exposed to hurt and difficulty. Because what is banter to many people is not to me.

This is why being oneself is so hard. Why so many autistics (and also, I suspect, people with anxiety disorders, PTSD and so on) withdraw from social life even, sometimes, when they are lonely. It is a form of self-protection. Because the way our brains are wired means that if we are totally “ourselves” then we expose ourselves to situations that cause distress because many people don’t understand how seriously we can take things that are understood as “social banter” by most people. If we go the alternative route and mask our feelings, saying the “right thing”, and putting our guards up, then we might well appear successful and have “normal” reactions to posts on Facebook and so on, but the cost in energy is huge. And that is why we become so utterly exhausted.

Yesterday, needless to say, was lost. I achieved none of the things I’d hoped to. I managed to eat a piece of toast in the late afternoon and a few chips for supper. No need to worry that I’m getting obese – I’m losing weight at the moment simply because I have so many days when I’m too anxious to eat properly or my autistic brain won’t let me eat anything other than milkshakes or whatever the current “thing” is!

My head now knows though, that posting even something apparently innocent can trigger a meltdown and a mess. Maybe I need to approach even online interactions with more caution. Maybe there are people there who haven’t read any of this blog (I’m fairly terrible at promoting either it, or the page, because I can’t quite believe anyone would actually be interested in any of it) and don’t know just how fragile I am at the moment.

Maybe I need to prepare myself for difficult comments because everyone won’t see a pudding as a nice innocent thing.

This is why the world is so complicated and difficult. Doing anything at all seems to bring a whole load of unpredictable consequences. My brain doesn’t cope well with that. It doesn’t understand. And when it reaches its limit, it goes into meltdown.

Can I Sing?

35-2016-12-29-22-15-02The question above isn’t one regarding my musical ability. I wouldn’t call myself a singer in any real sense, but I can be a moderately useful choral soprano from time to time, got grade 8 in singing when I was in my late teens, and have occasionally sung solos, although that’s all very very rusty these days!

However, I have asked myself that question on a couple of occasions recently, most specifically when I’ve “lost the words” (I’ll do a whole blog post about that at some point, but regular readers will by now have picked up that I have times when I am non-verbal and unable to speak).

The first time I wondered about singing was when I had around 3 hours of lost words while my husband and I were staying in the hotel (see Balancing Act), but by the time I had thought to consider the question my husband was asleep and I decided that wasn’t the moment for the experiment. Picture the scenario – you’ve just fallen asleep after a busy day fetching food and coffee, and you’re suddenly awoken by some sort of noise, and then you have to put your glasses on to read the words your wife is typing to you on her phone to discover that your valuable snooze time has been interrupted to conduct some sort of bizarre singing experiment! I’m barmy, but not quite that barmy!

Anyway, last night I lost the words again. Not really surprising after the week of the cancelled second assessment and all its attendant strife (there was yet another round of telephone calls and crossed wires yesterday afternoon). I gradually observed the feeling, familiar since childhood, of first a sort of sick exhaustion, then being (as I’ve always assumed) simply too tired to talk. I’ve spent my life assuming that everyone gets too tired to talk, and that’s just normal.

Since my husband was out late last night working (there’s a reason I don’t wake him when he’s asleep), I was in the flat on my own, so had the opportunity to try the singing experiment. It wasn’t a sophisticated experiment – there was an old episode of Top of The Pops burbling on the telly, and I thought I’d see what happened if I tried, from my non-verbal state, to sing along.

The answer was this – if I tried to sing with the words of the song, then nothing. Couldn’t do it at all. Like there was no connection, something unplugged (I really do want to try to work out how I can describe all this properly sometime, but for now it’s the best I can do). So I tried without the proper words – just “la la la la la” type of thing. Also nothing. Not a hope.

But if I just forgot about the words and hummed the tune alone. Absolutely fine. Like normal. No problem at all. Just like normal humming. Totally wordless, but all completely intact from a pitch and music point of view.

It really is the actual WORDS that are the issue. I have some sort of circuitry issue with making words. Which is, of course, why social events and conversation are so absolutely exhausting. Even when I’m apparently speaking fluently, I’m working overtime to make that speech, and sometimes I just can’t do it at all.

It’s all very interesting!