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!

FKM Officially!

73-2016-12-15-16-23-48I’m still reeling from the events of Monday. My thoughts are still not totally working coherently, and I have a whole bunch of feelings that I can’t identify and am still trying to work out. Both my husband and I are still also massively worn out after months of strain.

Five hours of talking to anyone about anything is something I find exhausting under any circumstances, and when a lot of that talk is to two new people, and the outcome of the process is really important, and a lot of the subject matter centres around my childhood, difficulties I’ve had through life, and the poor state of my mental health, it becomes even more exhausting. I even came home with a sore throat, simply because I’m not used to that much talking!

Yesterday I didn’t even have the energy to open the laptop to turn my jottings into a blog post, though I did complete One Day After, ready to post when I could. The evening of the assessment itself I managed to put up the Announcement (along with a visual fanfare for the picture), and jotted down the following, which never made it any further than a jotting:

Knackered
Shocked
Did all that really happen
Me
Autistic
Officially
Diagnosed

Thirsty from talking
Relief relief relief
They were amused when I said 2002 symmetrical

They asked me what happy felt like
I didn’t know
Perhaps this is happy

There are still so many things to discuss, and to work out, and to sort. Still lots of big feelings that haven’t quite worked out what they are yet. I can’t describe them because I can’t make the words happen properly yet, but I know they’re good. But very big. It’s almost 48 hours since I was diagnosed as I type these words, and it still feels very brand new and different.

There’s something significant about discovering I am autistic after 45 years of a life that kept going wrong in so many ways for so long, and working out why. And the whole notion of what I’d regarded as my normal being something that turned out to be the result of a different sort of brain. And how odd it is to type autism into search bars and find a whole load of other people who are the same as me, having spent my life with other people telling me that life wasn’t like this, it was like that, but for me it was like this, and apparently that’s because I’m autistic and it’s like this for other autistic people too. That’s really strange in so many ways.

And it’s all going to take a lot of working out, but I can start to do that properly now. The confirmation from the people I saw on Monday is a huge step to working it all out, partly because they UNDERSTOOD. They actually knew what I meant, and they made the assessment in a way that got the things that might cause problems and worked out how to deal with them before they happened. I’ll write it all up properly sometime, when my head’s processed it all.

And after a childhood working like crazy to try to fit in to the world, and a teenage accepting that I never would and taking refuge in music and study because they were the only things I really understood, and a quarter of a century of adulthood plagued by mental illness and the desire to be dead, some people finally got what it was and gave me an official label to explain why it had all been like that, and, when autism is added to bipolar disorder (that diagnosis still stands, as a comorbid condition), things make sense.

After so long living a life that didn’t work, to find people who believed what I said, and understood, and could finally officially say what was going on, was such a relief. And, interestingly, I even learnt a whole load more about another of my autistic traits, as it became obvious that there was something else I hadn’t even considered, that is clearly a result of autism (I’ll blog about it sometime, but not enough words now).

This assessment could not have been more different from the first. Totally different experience. To those who are out there still in the position I was in last week – keep going, keep asking, because there are people who can do it right and it is worth it.

I know that all my “problems” are not solved simply by being officially diagnosed. I know that there is a lot still to process. I know that there will still be dark times – being an autistic with bipolar disorder and anxiety probably means that my life will not ever be totally easy and smooth. I know that having a diagnosis isn’t some sort of magic spell that will cure everything, and that it’s a starting point for trying to work out how I can best function in the world and best live my life. But I now have that starting point, and it’s straight in my head, and I have the best chance now of official help or necessary adaptations or whatever.

Just a couple of weeks ago I wrote something on my phone (it was another started poem that never went anywhere) about my doubts, and how I wondered if I was just going mad. Going through a 5 hour assessment with people who clearly understood and knew what they were doing, and being told straight away that I clearly fulfilled the criteria for a diagnosis of Autism Spectrum Disorder (for that is its official title these days) has cleared those doubts.

The people will now write a report. I’m impatient to see it already, but my husband reminds me that I must be patient. Then they will give me a follow up appointment in about 4 weeks time, so I can gather questions and so on to ask them and they will point me in the right direction.

It’s the start of a new phase of life. I would be crying with happiness, but that point hasn’t yet been reached. Those sort of emotional reactions take quite a lot of days to happen for me, and the feelings are still buried under a whole load of surreality and slight dreamlikeness.

But it’s good. Properly good. Finally knowing me – officially.

Different Language

08-2016-12-09-18-36-23Some of these blog posts are difficult to write. Some are emotionally draining and massively triggering – I’m working on one at the moment that I’m going to have to do paragraph by paragraph because it’s so tough, but I’ll get there in the end, and it’s a post that needs to be written, so I shall persist. Some are about things I want to say and the thoughts are all in my head in concept form but my words aren’t always in a great place so it takes a lot of effort to translate them into readable format.

Some, like this one, are difficult because I’m working at the very limits of my knowledge about a subject that I only started studying a few months ago and I’m still trying to work out what everything means and to construct my own verbal definitions of concepts that I instantly recognised from internal experience as soon as I knew what they actually were. I’m also still reading other people’s blogs and working out which ones I’ll want to share and so on – even blogging is something of a new world to me as my last efforts, years ago, were random and short-lived and I never really got into it in a big way.

I said in the post “Time Stood Still” that I initially called what happened to me at the end of the summer “some sort of mental breakdown” because that was the language I had available to me. That language, familiar to me from years of mental health struggles, diagnosed as anxiety, depression, and eventually bipolar disorder (I still believe these were not misdiagnoses, but they were only part of the full picture, and they are common comorbids with autism), is only partially accurate in my new changed world. I am now learning new terms, terms to describe things that have happened to me throughout my life, which I have only discovered since investigating autism.

What actually happened to me during late summer 2016 was that I entered a spell of autistic burnout. This is, apparently, not recognised by the medical profession, but is seemingly well-known among the adult autistic community in general, and those who are undiagnosed or hiding their condition in particular. I’ll try to write about it more fully when I have the ability to do so, but, for now, the best way I can explain it is that burnout occurs when an autistic person’s energy is exhausted, they can no longer hide their condition, and they go into some sort of extended shutdown and their autistic characteristics become very pronounced.

I believe that this is the second time in my life that I have been in autistic burnout. The first was in 2001, when I was 30. However, this burnout is different from the last, because during the last one I was additionally in a state of nervous breakdown and severe depression as a result of bipolar disorder, so that will have hidden the autistic traits somewhat. I also lived alone at that time so there was nobody around to observe much of my behaviour. And, of course, nobody knew about autism, still less burnout, and at that stage I wasn’t even diagnosed with bipolar disorder – I was just given a packet of citalopram and signed off work for a while, as had happened during a previous breakdown a few years earlier. I eventually saw a psychiatrist who sent me for group CBT for anxiety, and I gradually learnt how to live in the world again, though that was the point at which the high-achieving, high-powered me disappeared from the world. I got back to work, but never to the level I had before, and I never lasted very long in any job – it’s now obvious why.

Looking back, I can now very obviously see the similarities and differences between burnout and breakdown, and can even separate out the parts of the two that occurred simultaneously in 2001, when whichever state was the stronger at the time took over. In both states: I find life very difficult and struggle to function; there is a desire to hide away from the world; I have to cancel things, put my life on hold, and need lots of support. In both, there is strong suicidal ideation (and there have been attempts), and I struggle with basic self care such as keeping up with admin and maintaining a reasonable living environment. I also have dysfunctional relationships with both food and alcohol and any semblance of normal sleep pattern usually goes completely haywire. There are probably more things, but this gives an indication of what I experience during both breakdown and burnout.

However, there are also differences. In breakdown I am still and I oversleep massively. In burnout I hardly sleep at all and I move almost constantly. In breakdown it helps to get out into the world and to be around people. In burnout I need to be alone for most of the time. In breakdown light can elevate my mood. In burnout I’m so hypersensitive to light I sit in the dark wearing sunglasses. In breakdown I generally overeat and crave sweet foods and chocolate. In burnout I struggle to eat at all and want plain white savoury foods above all. In breakdown I can cope with ordinary levels of background noise as well as usual. In burnout I’m really sensitive to sounds and crave silence – even having to watch the TV with the sound turned off and reading the subtitles. In breakdown I have a consistently low mood and am chronically depressed without let up. In burnout my mood fluctuates wildly and periods of depression alternate with much more positive phases.

I’m sure there are more differences too, but those are the ones that I have thus far observed, along with the fact that most of my breakdowns have followed a period of hypomania (my bipolar disorder is classified as Bipolar II), and the two episodes of burnout have followed an extended spell out in the world building a life involving lots of social contact and lots of sensory stimulation. Whether there will be future episodes of either breakdown or burnout I don’t know. The knowledge that I am autistic will now enable me to change my life and possibly to avoid, or at least soften, any future burnout, just as all the work I’ve done over the years has helped me to recognise early signs of both mania and depression and to act on them early enough to reduce the severity of more recent breakdowns.

Everything is starting to make so much more sense now that I’m reviewing my life with the added knowledge of autism. Things that have puzzled me for years are finally becoming clear. Some of the snippets of memories I have from the 2001 breakdown that have never quite made sense with my other breakdowns – my reactions to sound and light, my desire to bang my head repeatedly against something, my lack of sleep, my inability to eat – now make sense when regarded as autistic burnout, and when I compare that time to the present day, it’s very easy to see.

This is one of the reasons that an autism discovery later in life is so big. It’s not just about the present and the future and a change in life from the point of discovery onwards, it’s also about redefining many many past experiences and, to an extent, rewriting the history of my life from a different perspective. It’s a life-changing discovery that changes all of life, from birth to death. The facts of the history don’t change, obviously, since this isn’t time travel, but the perception of past events and the sense now made of previously puzzling experiences by having a whole new language to work with is like a constant stream of new discoveries and realisations that really are mind-blowing!