Hand Flapping

I wrote the words below (in italics) around eight months ago – before diagnosis, before forms, before I had any interaction with autistic communities online, right back in the early days of the “autism hypothesis” as I was then calling it. At that time I’d only just contacted my mother to start to ask about my early childhood, I’d heard the word “stimming” but didn’t really understand it, and I had no knowledge of autistic burnout or realization that I was experiencing it and had done so before.

I was yet even to receive the forms from the triage service or do any autism “tests” beyond the online one that I mentioned in The Discovery. I was still only just acknowledging that I even WAS autistic, and at that point I was only talking to a very small number of people about it and really only had Google and a couple of books to help me.

At the time I wrote the words I remember being really freaked out by them, even though I’d felt the need to write them. The whole concept of “just letting stuff happen” was so alien to me, having spent my entire life fighting to be “in control” and I was right at the start of the process of discovery. I had only just, a few days earlier, typed the words “I am autistic” for the first time and they still felt very foreign and strange and the whole notion of me being autistic seemed seriously wild – I didn’t spend a few years wondering or suspecting that I might be, as some people do – I’d gone from completely clueless to almost certainly autistic in the space of only a few weeks and my head was still reeling from the experience.

I didn’t even initially discuss them with either my husband or the friend with whom I was most closely corresponding about the possibility that I was autistic. I remember sending a rather coy facebook message to that friend saying I’d discovered something, but, initially it seemed too radical to say what – I’ve come a long way from then to now and my perceptions and levels of confidence have changed so much that I’m now publishing the words, which I couldn’t even send to my friend back then, openly on the internet!!!

But right from the off I knew I wanted to investigate the whole thing thoroughly. I wanted to experiment, to find out just what was going on. It was already obvious that the jiggly leg and the constant sitting with my legs folded under me and the gentle rocking and so on were likely autistic things and so I deliberately set out to learn to listen to my body and to what it wanted to do and to allow myself to experiment to see what happened.

Had I grown up knowing I was autistic and been part of any autistic community, this stuff might have been so commonplace in my life that it wouldn’t even have featured as a “thing to discover” but to me it felt new and big and important. I remember, much later, reading an account from another late diagnosed person saying it took them 6 months from diagnosis to reach that particular point. It took me only a few days from the point that I started to accept that I was autistic!

But I was deliberately experimenting. I am also pretty lucky in that I’m not the sort of person who feels shame about lots of stuff – I don’t have a deeply ingrained sense of “this is wrong” because I’ve always lived a somewhat random life, rather a long way from the middle of the “bell curve”! I knew by my teens that I was never going to be one of the popular “normal” ones and there’s no doubt that as I’ve got older I’ve increasingly adopted an attitude of “if they don’t like me as I am then I’ll just move on and not bother about it”. I have plenty of folk who do seem to be amused or entertained by me enough to stick around and whom I find interesting to be with so it’s not a big problem.

But, internally, this was for me, a big milestone, a big thing for me consciously to rediscover. And I remember, having typed the words “my autistic body” (perhaps an odd thing to type but it was what it was) looking at them with a mix of utter “this is so freaky and odd and new and scary and but ME?” and total “this is so comforting and reassuring and exciting and wow can this really be true” all at the same time.

September 2016

So, I’m staying overnight at my friend’s. I wake. It is 4 in the morning. When I wake I am overwhelmed with anxiety. Understandable. I’m away from home. I had orchestra. People. I talked a lot about autism to my friend yesterday afternoon and evening. My life is in such a period of upheaval and learning and turmoil. The revelations about my 4 year old self are still shocking me and rebounding inside my head.

I feel sick. Really really sick. I have felt this way here before. I have usually put it down to a large meal in college or too much alcohol. Neither of those is true for last night. A fairly small supper (I have learnt to eat small when things are unfamiliar because I know being out of normal routine is often stressful and makes me feel anxious and sick, so less food offsets the feeling).

Usually at this point I would try to keep calm and lie still. Breathing exercises. Mindfulness. Sometimes it works. But often I cannot get calm. The sick feeling rises. As I am emetophobic I get into a feedback loop. Sometimes I manage to fend it off but spend the next hour or so lying there feeling shaky and drained. Sometimes the worst happens. I end up in the bathroom and return, tearful and traumatised, to bed, where I might then drift into a troubled sleep, but the experience stays with me unless I spend the next few days working on blocking it from my mind.

Since it became apparent that I am autistic (there, I said it again) I have been experimenting. I have never known why I sit on the sofa at home and gently rock, but I do. It is calming. Maybe there is more in me. Something else. More long-repressed behaviours. I know I always fiddle with things. My hair. Pens. Cords. But maybe there are other things that are part of me that I am yet to discover.

I lie in the bed and decide to try something. To stop trying any sort of control over my body and mind and see what happens. My body starts to move. Rhythmically rocking backwards and forwards. It feels right. Then the strangest thing happens. I want to flap my hands. Really really want to. My arms emerge from under the covers. My hands begin to flap, fast, furious. I don’t know for how long, but the nausea and sick feeling subsides. I calm. Tears run down my face. I know I am going to be OK now. I flap a bit more, just to check. But I am calmer. The anxiety is reduced. I finally lie still.

I have heard mention of hand flapping. Has that found its way into my mind. Am I “trying” to be autistic, to prove something to myself? Au contraire, I was actually not trying to do anything except what my body felt it wanted to do. It felt natural. Normal. Although massively at odds with everything I have learnt from society over the last 45 years.

I wonder if my particular flapping is an autistic thing. So I grab my phone and Google autism hand flapping. My phone knows how to spell autism these days. I find a video of a man demonstrating flapping behaviour. It looks right. I read on a website that autistic children flap their hands and adults may go back to the behaviour as a way of relieving stress and anxiety. I don’t know if I am going back because I don’t know if I ever did as a child. Maybe so, but if that was the case I was almost certainly told to stop. Suppress. Do not exhibit abnormal behaviour. Nobody would have known back then what it meant.

I am slightly creeped out by the experience. The sense of calm the flapping induced was profound and remarkably quick. It clearly stimulated something that stopped the sick feeling, stopped the acute anxiety and stress. I feel very strange about this. I know it is an odd behaviour. Not something I have done in this way before. It was what my body wanted to do. And it worked.

I wonder what will happen over the coming weeks. As I come to terms with my autism what else will be revealed? I find the term “stimming” strange and unfamiliar. It was not a term I knew until very recently. Again, I worry that I am making myself autistic to fit the model. But every time I return to the fact that I have been autistic all along. It is not that I fit the model. It is that the model fits me. That I have found myself. Discovered needs in myself that were hitherto hidden. Years of lying in unfamiliar beds at night feeling sick. And I didn’t have a way of dealing with it. Now I do. That was what my body wanted. So that’s what I did. My autistic body. My differently wired head. My new life. My new start.

I am 45 years old and I am at the very beginning of my journey of learning to live like me. I have had fleeting moments, over the past week, where I have thought “when will life return to normal”. I know that old normal will never return. Yes, there is a part of me that is deeply unnerved by this whole autistic world. It’s so new. It has all happened so fast. Where is my old familiar life?

The old life is gone. I would not want it back.

***

Two Days Later

I have become a hand flapper. It has become important to me. I also like to rock, and to do things with my fingers, waggle my feet, bash my legs against the sofa back, and, of course, allow my leg to jiggle, rather than making the effort to stop what is often involuntary movement.

I was flapping tonight. Not because I was feeling particularly bad, but just to keep myself calm and to explore further the effect it has on me. I flapped for slightly longer than before. I felt a feeling in my fingers that was familiar, and pleasurable, and special. And it triggered a memory from long ago, very long ago, of the same feeling and I realised:

I. Have. Done. This. Before.

The realisation hits me. I did this as a child. I wonder why I stopped. Did someone tell me to stop waving my arms around? Did I gain awareness that other people didn’t flap their hands and as I was learning how to live by copying and observing I stopped? Did some kid at school bully me for it?

I wonder when it was. But I know now that I flapped my hands as a child.

Mind continues to be blown by all this stuff.

Breathe for goodness sake, breathe!

It turned out that I hadn’t just been flapping my hands when I was younger. As soon as I started to relax about it and consciously allow myself flap in front of my husband he said “Oh, you’ve always done that – though not quite as obviously as now”. Things I’ve always done with fingers and wrists when trying to make decisions or when stressed turn out all to be part of the same thing, but just on a smaller scale. I’ve since discovered that there are all sorts of times when I flap my hands, and these days I often hardly notice. Sometimes it’s when I’m happy about something, sometimes it’s for anxiety relief. These days I generally just go with it!

And, like so many autistic things, it possibly looks a little unusual from the outside. My husband (who also flaps his hands from time to time) frequently tells me I look like a T-Rex (I’m totally cool with that – I was a mad dinosaur fan as a kid and am still somewhat interested in them), and I suspect that some folk might find it a bit odd, but from the inside it’s just a natural form of expression and something that’s now very much part of my life.

The only thing I do have to make myself consciously remember from time to time is not to flap my hands while I’m holding a drink – that doesn’t work out well!!!

Good, Bad, Random!

It’s as if my head is desperately trying to prove just how true the oscillation theory actually is. Thinking back over the last few days:

Saturday – was a fairly good day. I knew I was a bit on edge, but still managed to get out and about to visit my best friend then to meet my husband for coffee. I was tired, and very much in need of time in the dark under my weighted blanket, but I was OK.

Sunday – was a bad day. I felt distracted and ill-at-ease all day. I achieved very little aside from watching multiple episodes of Columbo, a James Bond film, and The Terminal. I spent a lot of time under my blanket on the sofa, stimming in one way or another almost constantly.

Monday – I wrote the post about the oscillations. I then went out for my first proper run in months, just a single kilometre, but such a massive achievement from where I was. I came home and updated my calendar and replied to a few e-mails and had a generally good and productive evening.

Tuesday – was a terrible day. The neighbours were doing some DIY in the next room (we live in a flat) and were banging and drilling and scraping all day. I tried earplugs, headphones, ear defenders, but the feeling of all of them touching my ears was worse than the noise. By 4 in the afternoon I was a mess, my sensory system totally overwhelmed by the noise and feeling of closeness of the neighbours, and my brain seeming to be doing somersaults inside my head. It wasn’t good.

And I reacted in one of my more maladaptive ways to feeling so terrible – having hardly eaten anything all day I decided to have an early glass of wine, which led, eventually, to, well, rather more glasses of wine, and then even more, stronger, cheaper, wine… (you get the picture). I probably made a total arse of myself on facebook, but I did survive some fairly dark thoughts, so for that we must be thankful I guess!

It was also one of those days where I couldn’t write coherently. I find those days incredibly frustrating – when my head is full of thoughts and I can’t turn them into any sort of useable form. I started 4 blog posts / poems. Only one of them makes even vague sense, and it’s not exactly fun stuff for parties. I have a small collection of the darker stuff that I’ll perhaps try to sort out when I have enough energy to do it, but I’ll have to be in the right frame of mind for that.

So, ironically, just as I posted the post about oscillating, the last few days have been a microcosm of my life over the last 9 months or so. Good – bad – good – bad, and now, we’re back to good!

Today I feel much better. My head is clearer, I’m making myself eat food and drink sensible things like water and milk and tea, and I’ve washed my hair and checked that I’m wearing trousers without holes in in anticipation of spending the early evening at a “poetry and mental health” event which my husband is organizing. Also, the neighbours are quiet today, which helps immensely.

There are still unfinished blog posts in my folder, and there are still things I’d really like to be doing from the jobs list, but at the moment I’m happy to take whatever progress I can get. On days like this, when I feel somewhat inadequate that I haven’t yet written something really helpful (this blog is such a strange mixture of articles, journal entries, personal accounts, memories, random poems and so on), I can remind myself that I’ve only been doing this for a few months and although I really want to produce helpful material and a beautifully crafted set of posts, I also started this blog as an outlet for my thoughts, since I have no therapist nor much else beyond an exceedingly tolerant husband, one or two real-life friends, and those with whom I’m connected on social media.

I’m also really still getting used to the idea that I am autistic, I’m still working out how to interact with people out in the world in a way that is both possible, so that I can do the things I want to do, but will not break me as badly as it has done in the past. This is the start of the process, a time of experimentation and working out how to live my new life as an openly autistic person. I keep expecting myself to have all the answers, but I forget that I’m still very much at the start of this whole thing and it will take time before I can be where I want to be, both as far as being any sort of autistic advocate or gaining as much knowledge about autism as I want to, and simply being able to live some sort of life that works for me and I can cope with.

And I’m trying to resume bits of my old life too – playing music, running, studying, maths and science, a bit more attention for the animals, participating in events, seeing friends, even sorting out the chaos that is our flat, and so on. But I know that I have to tame my natural instincts, which are to plunge headlong into absolutely everything the minute that I have the slightest bit of energy (though that taming really doesn’t come naturally).

And to round off this somewhat random and oscillatory blog post, I’ve just looked at the date on my clock and noticed that it is exactly five months ago today that I published The Discovery and announced publicly that I am autistic, having spent the preceding four months getting my own head round the idea and discussing it only with a very few people. It was an interesting day, and the reactions from people who knew me were interesting too.

I’ve come a very long way since then. Things that seemed really wild just a few months ago seem to be such an established part of my life now. Life really has changed a lot.

And, on balance, it’s changed for the better!

The Magic Spot

You know those hanging sculptures?

The ones in spacious modern art galleries?

They’re made of all sorts of bits and pieces, hanging from the ceiling.

When you walk in to the gallery

All you see is a load of stuff,

Suspended on a bunch of wires.

Nothing makes any sense

And you wonder what crazy person decided to hang all their junk up from the ceiling and call it art.

But you walk around the room.

And you can see that the stuff is actually somewhat organised

And forms a picture.

Of sorts.

You stand and look at it for a while and you are about to move away and leave the room, because the picture really isn’t that good.

It’s all out of focus. Bits randomly appearing where they shouldn’t be. Gaps where you might expect to see continuity.

Then somebody says something to you,

Points to the outline of a pair of feet on the floor, previously unseen.

You place your feet over the outlines.

And you look at the junk, hanging from the ceiling…

Except that it is no longer just junk.

It is no longer a picture out of focus.

It is clear.

And beautiful.

And it makes sense.

Each individual thing, contributing to the whole. Each tiny piece of junk is supposed to be there. Nothing is out of place any more.

Because you are viewing it from the correct spot.

And it’s a beautiful piece of art.

Now imagine that you have spent forty-five years in that room, looking at the stuff that forms your life and trying to make sense of it.

And then you stand on that magic spot.

And you finally see the picture in focus.

And your entire life makes sense.

And you get a little bit of hope that it might even, one day, be a tiny bit beautiful…

You need time for your feet to recover from standing in the gallery for so long. You are exhausted.

You need to get used to seeing the picture clearly because the detail is overwhelming, and seeing it like this for the first time is new and unfamiliar.

And you need to show everybody else how they should look at the picture.

Because they won’t all understand what you mean straight away.

And maybe some never will.

But now you understand.

Your life makes sense.

Now you know where you need to stand, you can safely move around the room again, examining each individual piece, hanging from its wire.

You can analyse how each item fits, and you can see why it is there.

You move your feet away from the marks on the floor.

And you see that they are no longer outlines of feet. They are now words.

You bend down to take a closer look.

And you read the words that are written on the magic spot, the words that give you the information you need to make sense of your life.

They simply say:

You are autistic.

Eight Weeks On

So, eight weeks on from my diagnosis, I’m once again pausing to observe the passage of that time, and, understandably, reflecting on how life has progressed since I sat in the room at the end of a five-hour interview and testing session and was told that I clearly fulfilled the criteria for a diagnosis of autism spectrum disorder.

Eight weeks ago today I was relieved and exhausted in almost equal measure, having been officially told the news that explained why my life had been so incredibly difficult and I had failed, consistently, to live up to the expectations and demands that that so many people (including myself) had for me. I had reached the end of the process of assessment, and the end of the “old life” and had, finally, got to a point where I could start to rebuild something new, gentler and more forgiving.

Because I’d already read so many other accounts of how things had been for other people, and because I’ve been around long enough to have experienced a lot of ups and downs, I was under no illusion that receiving my diagnosis would magically transform my life into some fairyland, or that I would miraculously be able to access beautiful support or that all the ghosts from my past would reappear and apologise for all the years they’d told me to work harder, do better, or whatever, or that they’d explain that they really didn’t know how difficult life had been and they wished they had. I was, of course, right to hang on to a healthy skepticism that things would miraculously “get better” – one advantage of being a bit old and a bit logical is that a belief in magic and sparkles and fairy dust is not on the agenda. This process of readjustment to my new knowledge and rebuilding my new life is not going to happen overnight, and nor is it going to happen at all without considerable effort from me.

There is also the burnout to consider, and my mental health in general. At my follow up appointment I was advised to book an appointment with my GP to discuss my mental health in general and where to go from here. I wonder whether there will be more referrals, more discussions, and to what extent maintaining any semblance of mental wellness is, for me, going to be a lifelong task. I suspect only time will tell, as I adjust to the knowledge that I am autistic, as I learn what works, and as I start to try to work out what I’m going to do with the rest of my life – that is currently a very big question on my mind, both in terms of what I am able to do, and what I might actually want to do.

But, at this juncture, I am trying to identify how things now are, eight weeks on. It’s almost in the spirit of keeping some sort of journal, perhaps to refer to later, to measure progress. I look back now to what I wrote in Tiny Glimmers, just over three months ago, and, although it might not feel like it sometimes, and although my life still appears to be rather poor quality in many ways, and terribly terribly limited, I can see that things are generally better, and that I’m achieving a little more. I also have the confidence of my diagnosis, the feelings of validation that it gave me, and just that tiny bit of support I’ve had (help with forms, a follow up appointment, reassurance that I’m correct on many things and not going crazy, and suggestions for what I might do next), which have made a massive difference.

Interestingly, when I wrote Tiny Glimmers, I’d been trying to organize my paperwork and sort out my jobs lists and just get things a little more organized. I did the same yesterday, so maybe this is part of the process of taking stock, moving on, and trying to consciously plan and be proactive in life rather than just reacting to crisis after crisis and just “coping” whatever way seems most possible at the time. I did mindfulness meditation for several years (and have not ruled out returning to it when I’m in a more suitable place for it – now is not the right time) and one exercise that I found useful and adapted was to “check in” with feelings and to notice how they were. I adopted a method, during silent practice sessions, of using some of the time to analyse how things were, both physically and mentally (I know the two are not entirely separate systems, but I found it useful to examine each separately because my physical and mental health are so wildly different in their presentation – my physical health and fitness is probably on the “better” side for someone my age in my circumstances, and my mental health is certainly substantially worse).

So, I’d sit and take note of all the various bits of my body, usually picking up on various niggles caused by 50K training runs and the like, trying to work out whether the hip-strengthening work I was doing was easing the ITB (iliotibial band) issues I had for a brief spell, establishing whether my breathing was getting better with the new inhaler, that sort of thing. Mental wellness was, of course, more complex and involved trying to work out exactly where I was on the mania-depression scale, whether I was sleeping, eating properly, levels of anxiety and suicidal ideation and so on. But the exercise was helpful, because it enabled me to decide either to alter my training schedule or do more targeted exercises (physical) or to turn down or cancel things to remove pressure (mental). I had, without knowing it, developed a very basic knowledge that I needed to conserve social and sensory spoons. The “checking in” process really helped with that, and was one of the positives that I drew from the mindfulness I learnt in an attempt to prevent me relapsing, once again, into severe depression.

And now I’m using the “checking in” technique over a longer timescale, and I observe that although my mood and functional abilities are still very wobbly, and still varying wildly from day to day, the good days are better than they were, and the number of really really bad days has lessened. Like the tiny glimmers I observed back in January, there are little fragments of a new life that are now starting to show themselves occasionally, little moments where I am interested in SOMETHING again, and feel that one day I might have the energy to rebuild life and actually make it a bit better, rather than just surviving day to day, and, sometimes, hour to hour. The person who wrote Tiny Glimmers would have looked at the person typing this now and seen a veritable superhero – out of the flat now twice a week on average, starting to think about the future because I’m starting to think that I might actually HAVE a future, and making very tentative plans for the new life.

I know that everybody’s circumstances are different, and that there are many external complicating factors (burnout, family circumstances, comorbid conditions, reactions from others, and so on) during the period following an autism diagnosis. And I know that what I write here also varies wildly as my mood fluctuates and as I try to come to terms with the past and plan for the future. I’ve read accounts and heard from other people that it will be a year or so before things are likely to improve significantly, as my autistic brain is using a massive amount of processing power just to adjust to my new identity and therefore I have less energy for other things. However, using the best powers of logical analysis that I can summon, and viewing the evidence in my own life and in past posts of this blog, I can say that things are a little better now than they were a few months ago. It’s not dramatic – it isn’t “Hey, here’s an autism diagnosis – problems all solved” (and, to be honest, if it was like that then I’d be a little concerned because it’s so unrealistic), but it has made a noticeable difference to my life in a generally positive way. It’s slight, and it’s an upward trend rather than a continuous ascent (there are still a lot of sad and angry bits to work through), but it is, nonetheless, an improvement.

Letting Go

Apologies for yet another of these “journal type” posts. I had hoped that this blog would be just a little bit more balanced than it has been recently, and I’d still like to explore particular aspects of autism and create something a bit more useful, but, as I said right at the start, it is also, for me, part of the process of dealing with life and of trying to work out where to go from here!

I have spent the last few days feeling utterly shattered. This is partly because I managed to leave the flat a bit more than usual at the end of last week, and partly because I am starting to absorb everything that has happened over the last few weeks and preceding few months. Furthermore, it has become obvious that trying to struggle through learning advanced mathematics and completing assignments and sitting an exam in a few months time is totally and utterly beyond me right now. No matter how much I “put my mind to it”, it just isn’t happening. There are some times in life where no amount of effort will make something possible, and this is one of them. I had the same experience when I abandoned my DPhil 20 years ago – I wanted it so much, I wanted desperately to complete it, but sometimes, no matter how hard you search, there isn’t any more energy there. At that point there is nothing to do but accept that you need to stop, to give up, and to recover as best you can and make a new plan.

The process of acceptance is something I’m finding a bit odd, and also rather confusing. On the one hand I feel a huge relief that I can stop, breathe, and take some of the pressure off myself, but on the other, I feel somewhat bereft and directionless and a bit lost and I’m wondering what I’m supposed to do now.

The basic answer to that last question is, of course, obvious. I have plenty of things that still need doing – there is laundry and admin and trying to remember to eat and take care of myself. I also have lots of books and DVDs and so on that should keep me amused for a while. To many people this might sound like a great holiday, some sort of lovely blissful time – I now have permission to lie around in bed at home, watching the telly, reading anything I want, eating as much chocolate as I like, while just making the occasional list and chucking a load of laundry into the machine from time to time.

Except that this isn’t a holiday. It isn’t a break from the tough stuff – it IS the tough stuff. It has now taken me over a week to get enough brain cells together to even think about making a list. I am struggling to eat anything at all during the day as it just makes me feel sick and I’m having to force myself to nibble small quantities of high calorie food just to maintain my weight. I can’t concentrate to read most days, and I often find the light and sound from the TV terribly overstimulating. Strangely, the laundry is probably the best bit of the whole lot, though the noise from the washing machine sometimes makes me want to beat my head against the wall!

The above paragraph makes it obvious that I’m still very much recovering from burnout, and explains why I’m so unable to do more than leave the flat from time to time and the very occasional thing. And, on one level, it does give me a set of goals to aim for – eating proper meals, reading a few pages of a book, sorting out the random papers on my desk. On a small scale I have goals.

But the larger scale is more problematic. And this is where the dichotomy between feeling relieved and feeling lost is pertinent.

Getting my autism diagnosis is a huge relief. Learning that the struggles I’ve experienced all my life are the result of my brain working differently from the majority of brains is hugely enlightening, liberating, and exonerating. I know now that I was never able to fit into the world in the way that most people can because I was different from the start and I always will be. I’ve always known I wasn’t like most other people, but never really thought much of it because it was the way the world was for me, but I continually failed at things in a way that shouldn’t have been the case given how much I was working for them. Acknowledging that difference is really really helpful – in the same way that when we were discovering we were unable to have children one of the most helpful things I read was a paragraph in a book that explained that one of the difficulties of being childless is that it immediately marks you out as “different” in society because so many people do have families (and spend a great deal of time talking about them) that you will inevitably be an outsider on many occasions. That paragraph made me realise something I hadn’t hitherto realised – I was already different (I knew that much before autism was even considered) and my failure to produce a family made me even more different, even more of an outsider in society.

Acknowledging that feeling of “otherness” was really important to me then, as it is now. I have changed from being “wrong normal” to “right different”, which is good, because it means I can finally relax (as much as that’ll ever be possible for me), be myself, and set myself more realistic targets that allow me enough time for rest and recuperation in between and take into account how much just being out in the world exhausts me and drains my energy.

Finally, breathe. Stop. The battle is over. I can pause. Phew.

But what now?

And here is where the lost feeling comes in. Because the problem with not discovering you’re autistic until you’re 45, and with having achieved good exam results at school, and with having spent your entire life striving for “success” of some description is that without that ambition and those goals and those life plans, you feel somewhat cast adrift – I’m free, yes, from the expectations that I will now ever “get better” and be a high-flying something or other, but I’m also, now, somewhat directionless – floating around in an ocean and I don’t know which way to swim. The training I received in my youth was all based on me getting a good career, living a “normal” successful life. All my assumptions about my life included a full-time job, a family, and a house – that was the life I was prepared for. I never learnt about the benefits system, or what to do if you can’t work, or how to relax, or how to ask for help and support – none of those things was on my radar. I’m having to learn them pretty much from the beginning, in my 40s. This is a big ask – a complete rethink on my life philosophy. I’m also going to have to work out what I can actually do with my life that will take me beyond simply staring at the TV all day every day, because, even with my changed reality, I hope to be able to do a little more than that at some point.

So I look around and try to ascertain what others do with their lives. How do people who have neither a job nor family fill their days? What is life then for?

It seems like a wonderful opportunity – I’m sure there are people tied to jobs and families who would love to spend time travelling or pursuing hobbies or whatever, but I’m not only decidedly short on finances for travelling and so on, but just being out in the world with people exhausts me so much that any hobby would need to be mainly solitary and done at home. I’m not really looking for answers here, just pondering, and I know in my brain that I need to wait until I’ve recovered further from burnout before I can start to see what level of functionality I actually have and what I’ll ultimately be able to do.

So, I am liberated, free from the need to “perform” any more, free from the need to act the confident high-powered strong woman who I pretended to be for so long. But I am also cast adrift, directionless, like a balloon released and left to its fate, and I believe that I just have to go with both of these things for the time being. The old “rules” are gone. My life has been redefined. And there is no point fighting it, no point trying to cling on to “the way things were before”, because no matter how much I wanted that life to work, it didn’t, and the only way to move forward is to let go, relinquish control, and trust that some way forward will eventually emerge.

The Background

02-2016-12-08-13-47-41At the beginning of August 2016 I was living a normal life. Maybe not “normal” in the sense that many would call normal, but normal for me. I’d just turned 45, my husband and I were about to celebrate our 14th wedding anniversary, and we’d still failed to unpack or sort the chaos in our small flat following a rushed move a couple of years earlier. I spent my days studying when I could, playing music, running, being with our animals, and forgetting to eat lunch. All as usual.

I had, however, started to feel unwell again during the previous year. I’ve struggled with my mental health for decades, and was diagnosed first with anxiety and depression, then later with bipolar disorder. But I’d been reasonably stable since around 2013, had started to play the viola in orchestras again, and had generally spent much more time out in the world, reconnecting with friends, trying to rebuild my life, in the hope that I might one day be able to work again and be back to some sort of genuine “normal”.

But my health had started to decline. I’d had to drop a concert and several chamber music sessions, withdraw from my Open University study yet again, pull out of some races I’d planned to run, and by July I’d been back to my GP and picked up a prescription for the medication I’d successfully come off in 2013. It seemed obvious that I was headed for another breakdown, another episode of depression.

However, looking back now, there were things that didn’t tally with the descent into breakdown. For many years, I assiduously kept a mood diary. Just a simple cross in a box each day, to indicate an elated or depressed mood. My mood was still reasonably stable. A little under, but nothing that would indicate a severe mood shift. On the same chart I had a box into which I’d write a “score” for anxiety each day. The anxiety measurement was consistently high, and rising. That anxiety perhaps explained why I spent so much time feeling sick, why I would suddenly panic and shake for no apparent reason. I needed to calm myself somehow.

I was also perpetually exhausted. Going out to rehearsals sapped my energy and left me worn out and needing to sleep for days. I couldn’t drag myself out of bed much before ten or eleven, even on the best mornings. I’d go shopping to the supermarket and buy a small trolley load of groceries then come home and need to sleep for a couple of hours before I could put them away. That would then be me finished for the day. Going out for lunch or dinner would entail a two day recovery period. I’d had times like this before, but things were getting noticeably worse – no matter how well I ate, or how much mindfulness I practised, or what CBT tools I used, I was bone-numbingly exhausted whenever I went out.

A few people suggested chronic fatigue syndrome, but I knew that wasn’t right. I was still running, and once I’d recovered from the exhaustion I could easily do a 50K training run. Although I was really struggling at races – at the Brighton Marathon expo I’d had to take my husband with me to collect my bib as I’d been hardly able to speak to tell them my name. When other runners chatted to me during marathons I felt my legs get weaker. I got to an aid station only 30K into an ultra (no distance for me) and was unable to get a cup of tea because I had a huge panic. I sat by the side of the trail, shaking and in tears, before eventually pulling out of the race, assuming I had the flu because I felt so ill.

But the summer was approaching. I knew things would be quieter and I’d be able to catch up on sleep and get some rest. I could also pause my training schedule, chill out a bit, and I’d planned to spend much of the summer playing orchestral and chamber music and catching up with friends. I knew it would be busy and I’d be camping, but I also knew it was something I enjoyed. I’d even bought a new tent!

And so I set off with my tent, but without any idea of what was going to happen. I didn’t know then that I was only days away from something that would start to trigger a chain of events that would change my life for ever. Neither was I aware that the next few weeks and months would be an emotional rollercoaster like nothing I’d ever experienced before, and that the biggest discovery of my life was about to occur.

Unable to Wait

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This wasn’t the original first post for this blog. I wrote another one, over a month ago, which was to have been posted after things were “properly sorted” and I had the confidence of a piece of paper to enable me to tell my story to the world.

However, “proper sorting” is taking too long. I was told that things would be sorted last week – they were not (more on that in the future) and the effect on me was so catastrophic that I became suicidal and spent 48 hours living one hour at a time, waking in the night screaming, constantly tearful, and hanging on hour by hour, minute by minute.

I’ve never been good at concealing things. I can keep other people’s secrets totally reliably, but all my natural instincts are to be open, straightforward, and plain-speaking about my own life. I have written candidly about my mental health in the past, and for me that is much much easier than concealing the difficulties I’ve experienced. This new facet of my life will be no different. After last week’s disaster I finally started to feel that life was maybe worth living again when I decided that I would proceed with the original plan (slightly modified) with or without the piece of paper. I also now know that getting that piece of paper might be difficult, and a battle, an uphill struggle – the person I saw last week told me that “intelligent women were a problem” and that I was “very complicated”. I became so distressed during the appointment that I ended up self-injuring. My husband and I will continue to fight on, but my new life and way of living has already started and I need to be open about it now because concealing it is destroying me from the inside.

I don’t expect most people reading this will grasp the full enormity of what has happened to me since the summer. I do know that other people have been through the same thing and will fully understand. Some who’ve known me a while and have a little knowledge of their own might not be surprised. Maybe some won’t believe me at all (hence part of the desire for the piece of paper). Some might not have the faintest clue what I’m even going on about and will reach for Google to try to make sense of it all. Or perhaps think I’m even more crackers than I always have been and will wander off for a cup of tea, scratching their heads as they go!!!

However, for me, this is huge. The biggest thing that has ever happened to me. No question. It dwarfs getting married, getting my degree, burying my relatives, even discovering I can’t have children (I’m not talking here about whether things are good or bad, just about their magnitude in my life). This is the biggest. Is it good or bad? The answer at the moment is probably both, to some degree, although the question is much more complicated than that – and a discussion for a future post. In general, though, I believe this new knowledge will transform my life – it already has in many ways.

It has caused me massive swings of emotion over the last few months, from deep depression to relief and excitement, from severe anxiety to calm beautiful acceptance, and has meant that I’ve had vast amounts of new information to process and absorb. It’s still taking lots of energy. I’ve read over 20 books, hundreds of blog posts (one reason I’ve chosen to blog is that others might feel less alone by reading what I will write here), and lurked quietly on groups and pages on facebook, learning as much as I can. I’m probably still going to make mistakes with new language, recently learnt, and I expect I’ll look back on these early posts in a year or so and laugh at myself or cringe, but this blog is now part of the process too. Please forgive any errors while I’m still learning.

And as I am still learning, I’m not really in a position to start answering lots of questions yet – I still have more questions myself than I have answers, and my ability to respond to comments and questions might be somewhat limited for some time to come. My brain is still massively overloaded with new information and I absolutely need to learn everything at my pace, doing my own research, in my own way. That is really really important to me. I have now reached the stage where I can present the initial research and give my paper to conference, but taking questions from the floor will have to wait a while.

I have entered a world that, paradoxically, is completely new but also absolutely familiar to me. I will tell you as much as I can about it all in the weeks to come, but I’m not going to say exactly what it is yet. Let me just say that it has blown my mind, changed my life, and made sense of almost everything. If you already know what it is or have guessed, then don’t reveal it yet in case there are those who like a story. I’ll tell you very soon, I promise – after I’ve given you just a little bit of background in the next post.

I am still very much me. The same me. Much of my life will return to a normal, maybe not that different from the old one, once I have fully recovered from the seismic effects that the discovery is currently having on my brain, but I am learning a new way to live. A gentler, more forgiving way. A way that I hope will make life a bit easier and more suitable for me, now that I finally know what I am dealing with.