Phased Process

62-2017-01-12-19-01-27I hope you will forgive a somewhat long and indulgent post today. Eventually I’d really like to produce material that will be helpful and instructive and so on, and I might even, once I have things straight in my own head, produce a book, or maybe even another, more “generally informative” blog. There are so many issues that are so important to investigate and to consider – everything from how best to nurture autistic children, through to how to support those even older than I am who make the discovery that they are autistic; a whole range of traits including communication issues and sensory sensitivity and executive functioning and so on; and a huge amount of discussion to be had on all manner of other issues that are only just finding their way into my head and I can’t even quite find the words for yet.

For the time being though, I’m still in the process of trying to get my own life sorted out, and some of these writings form part of the process. I currently have no support from the official services at all, no counsellor, no therapist, nothing, and so I’m aware that I sometimes use this space in lieu of such support. So some of what I write might just be pure waffle that I needed to write somewhere and here was as good a place as any. Some of the time I’m just trying to get things straight in my own head.

In the last week or so I’ve noticed things have changed again. Since the appointment date was fixed for the next assessment (my third try at getting a formal autism diagnosis after the first assessment was stopped by the assessor and the second one was cancelled) I’ve become noticeably more anxious again. My appetite has plummeted, having recovered somewhat, and I’m finding sleep less and less easy again.

However it does feel different from the last time I was waiting for my appointment, for several reasons, and I’ve been trying to understand why. I’ve also been looking back over the last six months, which seem to have comprised a series of “phases”, all of which have felt slightly different, and, I suspect, are part of the balancing process as my autistic neurology comes to terms with discovering, er, my autistic neurology!

The irony of discovering that my head isn’t very good at coping with change by discovering that I have the sort of head that isn’t very good at coping with change and having to cope with the change that ensues from that discovery is not lost on me!

So, we go back to July 2016. Back to the days of “normality”. Back to the days when everything felt ordinary, much as it had done for most of my life. A knowledge that I wasn’t well again and was possibly heading for another breakdown. A confusion as to why I couldn’t get my act together. And a general constant low level depressive mood and anxiety that I was so used to that I didn’t even notice it. I had a figure “zero” on my mood chart, meant to indicate my “norm”, what I regarded as a euthymic mood, but, in retrospect, it was far from “normal”, just what I was used to, as I eventually realised a couple of months later. During those times I would wake each morning feeling the usual struggle, the usual wonder what the point of it was, and the usual knowledge that everything was difficult and hard work, but that was just the way it was and things had to be done. That was normality.

And then we get to August, and going away from home. And my mental health (as I assumed at the time) starting to disintegrate. And, despite the few rumblings earlier in the year and a general “bit eccentric” sort of idea in my head, the “polite disbelief” at the initial concept of being autistic, exacerbated, I suspect, by me not really knowing what being autistic actually meant. I had no more knowledge than most of the rest of society at the time, possibly even less, owing to not having any children and being so uninvolved with the world. But by this stage I felt so absolutely dreadful that I was prepared to listen to almost anything to try to work out why my life kept going so very very wrong, and when you find yourself, as a 45 year old, behaving in a way that would be more naturally associated with a stroppy child and you have no way of controlling it or stopping it, then maybe it’s time to try to find out why.

So there was this initial feeling of disbelief. And also of the notion that I probably wasn’t actually really genuinely “autistic”, but just had one or two traits. I was one of those folk who was just a bit sensitive to life and because I was so mentally ill I just didn’t cope very well. I didn’t think, initially, that I would ever actually define myself as autistic, but saw the suggestions as merely an extension of eccentricity. Again, I still didn’t really understand the nature of the autistic spectrum, and neither did I have the first clue how many of my “eccentricities” would actually start to be revealed as autistic traits as I started to research.

And then I read the book with the list of traits mentioned in The Discovery. And started to take things somewhat more seriously. And went from “this is a side issue that might be useful to be aware of but things will get back to normal soon” to “mind blown, this is my entire life turned upside down”!

And the “polite disbelief” turned to “polite belief” turned to “******************” (there is no word that adequately describes suddenly discovering, after 45 years, that your entire life has been governed by your having a different neurology from the majority of the population, that you’ve been fighting all your life, and that you’ve discovered all this in a matter of weeks and your entire world has completely changed)! And there was huge huge huge shock. And even more huge shock as I started to research just how MANY autistic traits I had, and started to discover about all sorts of things that I thought were just me, weren’t. The whole “autism nicked my schizzle” phase!

And I went from waking up each morning wearily wondering how much more of this difficult life I could take, to waking up (when I managed to go to sleep at all) with my heart pounding so hard I thought it would actually jump out of my chest and this word “autistic” just swimming, almost meaninglessly, round my head. The whole sense of shock and disbelief and whatonearthisthisaboutthen still raging through my system. A bit like when someone dies and you get those few seconds each morning before you remember and then you suddenly remember it all over again and your system goes into shock once more.

And by this time it was early September. And I was struggling to cling on to anything normal at all or to think about anything other than autism, and my Amazon basket was full of autism books and I couldn’t eat or sleep or do anything because my whole system was so utterly overloaded. I went through lists of traits over and over and over. Read blogs, books, anything I could get my hands on. My entire world became about autism, almost to the exclusion of everything else.

And hardly anybody knew what was going on. My husband. A handful of friends. The whole thing seeming so utterly implausible that I couldn’t possibly mention it. I was trying, even, to work out how to even comprehend that I could ever even imagine that I really was autistic. It was surreal, like I was on some sort of weird drug that made the world feel like a total dream. Shock shock shock. Huge shock. What? Me? Really? Over and over. This shock. So obvious. So so obvious. But such a huge shock. Why did this take so long? What now? What even is it all about? My world collapsing.

Then I went to see my doctor, my GP. And the minute we mentioned the word she said “Of course!” and it was totally obvious to her too. And then I entered this time of huge relief, and we started to go back over my life, over 4 decades of memories of stuff happening that had never been explained, and suddenly it was all explained. And I started to chat to a very tiny group of people, and started to unpick my life and started to work through it all. And the feelings kept coming, and I tried to describe them in Various Feelings, and we started to wait impatiently for the formal diagnosis to arrive.

And for most of September and October I hardly slept. And hardly ate. I spent the night times, slightly bizarrely, googling pictures of goats and posting them on my facebook wall. My husband brought me food each day and I nibbled at what I could, which wasn’t very much. My system was in such shock that I could barely function. I cancelled almost everything in my diary as my system just started to close down. I realise now that this was going into burnout and all my energy had just gone. My life seemed so totally crazy and totally different. And I kept wondering if anything would ever feel even vaguely “normal” ever again. And to top it all, the hot water broke in our flat and our living conditions descended from “chaotic” to “borderline disastrous”!

Oddly though, around September time, something else did happen which showed just how much of a toll the masking had been taking. Although I was in a really really strange state, the general level of depression lifted massively. Simply knowing, and understanding, took a whole level of depression away. This, I suspect, was the depression caused by acting, by suppressing who I really was, and had been with me for so long that I didn’t actually notice it was there until it lifted. There was also this sudden feeling that I could be gentle with myself and could stop the frenetic pushing to do everything and to be everything to everyone and to achieve achieve achieve, which had been the cornerstone of my life.

And then I discovered that if I stopped trying to push in that way that I could let myself relax in a way that I hadn’t done before and that if I stopped trying to sit still then my body moved in ways that society had told me for years were strange but from the inside felt totally right. And I spent up to two hours a day rocking and bashing myself on the sofa and all sorts of things emerged from me (I’ll do a post about it sometime) that had been there all along, hidden, just waiting under the surface to be allowed out. I discovered that even after 4 decades of learning and suppression, all my autistic behaviours were there and that all that had happened by me not flapping my hands or by making myself cope with sensory overload to appear “normal” was that I’d been getting progressively more damaged and ill and had sometimes used maladaptive strategies such as alcohol to try to deal with the anxiety.

And all through the autumn I gathered evidence for the assessment, which was set for the end of November. I called my mother and learnt things about my early childhood that I hadn’t previously know and which provided yet more evidence for the “autism hypothesis”. I read book after book, all of which confirmed it over and over and over. And anxiety was heaped on top of anxiety. And the only way I could settle at all was to drink and stim (note: do not inadvertently flap hands while holding a glass of wine – it doesn’t end well for the carpet or the wine)! And there were so many other things going through my head – sadness and anger and relief and excitement and things I’ve written about before and still can’t quite explain properly.

And then the first assessment came and the ensuing disaster plummeted me into crippling depression at the start of December (the full story is in part B of the Blog Guide). I had a series of long shutdowns and episodes without speech, and eventually the spell was broken and I went from no sleep to oversleeping and gradually starting to eat again as my body started to try to repair itself. That phase is the one that has recently ended. And then I made the decision to go public about being autistic and started this blog.

At the start of December I wrote about how Time Stood Still, and I was still in a state of disbelief and still felt that I would, at some point, wake up and it would be August again and I would just have had a really strange dream. I’d gone from disbelief, to tentative belief, to huge shock, and massive relief, and lifting of long-normalised depression, and enormous anxiety, to crushing devastation and invalidation, to starting to fight back, and still my head wasn’t really there, wasn’t really prepared to believe I was autistic without a diagnosis.

But things are different again now. Partly because it is a different year and we have been through the annual time of the short days and I am now, just occasionally, starting to notice the outside world again. Partly because I survived the very very bleak times following the first assessment. Partly because I am now publicly autistic and the reaction to my disclosure has been so overwhelmingly positive and accepted that it has gone a long way to help with the damage done at the first assessment. Partly because I have now learnt so much about autism and am finding strategies to find my way through and have started to engage with the autistic community and to discover how many of my own issues are common to other autistics. Partly because I am not now viewing the forthcoming assessment as a definitive point – I’m aware that getting a formal diagnosis might actually be a long and arduous process and from what I have read, this is not unusual in older people, particularly those assigned female at birth. Partly because there are indications that I might be emerging to some extent from burnout and I do have slightly more functionality than I did a few months ago. Partly because I am starting to learn what my autistic traits are and am learning to work with them rather than fighting against them.

But possibly mainly because I am now writing about being autistic and producing my own narrative to help with the process of discovery (and occasionally writing long indulgent posts like this one). I am learning to talk about it in a way that I would have found unthinkable back in September when even typing the word “autism” into a search seemed so alien and scary that I’d have to go for a little lie down afterwards to recover. I am finding out that going through this huge range of emotions from ecstatic jubilation to suicidal depression is “absolutely normal for the newly-discovered middle-aged autistic” (and probably newly diagnosed autistics of all ages and, to an extent, their carers too) by continuing to read. And, I’m starting to think about a way forward and very very gently getting back to one or two things that, to me, signify “normal life”. It’s slow, and the path is very wobbly and up and down, but it is going, gently, in the right direction.

None of it is particularly easy. And my autistic brain is still fighting furiously with my knowledge brain as they try to reach some sort of equilibrium in my head and sort out what on Earth to do about everything. But I sometimes think that they might, eventually, find some sort of way of working together.

And in the meantime the only thing to do is to accept this latest phase of anxiety regarding the assessment and to cope with it as best I can. I don’t know how many more phases there will be to go through before life achieves some sort of “new normal” and neither do I know when or what that will be. Maybe I will need to write more “head sorting” material in the future in order to make sense of it all and I’ll have a whole new analysis of the process in a few months’ time!

This blog is an interesting beast. No matter how much I want to write about some things and no matter how much I plan, sometimes my head just needs to write what it needs to write.

And letting it is part of the process of discovery!

Two Days

44-2016-12-31-12-56-09So you’ve had a two day respite from my random ramblings. Two days of peace and quiet. But now the spell is broken again and I’ve returned!

Interestingly, the reasons I’ve not posted for a couple of days have been absolutely at opposite ends of the scale. On Monday I had a really really bad day, utterly exhausted, no motivation for anything. Even the thought of turning on the computer to write anything was way beyond me, and most of the day was lost to a kind of depressive “I don’t want to be here” sort of haze. The evening was a little better, but by then I was too exhausted. Yesterday, however, I had one of the best days I’ve had in a while. I went out on my own, did a few errands, even managed to have a coffee, and then came home and, since my brain was still functioning reasonably well, started working on some of the admin tasks I now have piling up on my to do list.

My life is often very variable like this, and I have very varying capabilities on different days. I’ve still not really learnt about this in the light of autistic traits, though my brain is flashing at me that I did read something about it somewhere but I can’t exactly remember where and I need to add that to the list of things to investigate in the future. It’s very often the case that I can do something quite well on one day, but be completely incapable of doing the same thing the next day, and vice versa.

Obviously, days like Monday are utterly utterly miserable. I hate the days that are filled with sadness and regret, those days where I really don’t want to be alive any more. I hate feeling so weak and powerless, unable to function properly, stuck inside the flat when there is so much I want to do, unable even to perform simple tasks because my brain simply won’t work. I feel sad that I’m not getting up and going to a productive job (yes, really, I’d love to be able to do a job). I hate the fuzzy feeling in my head, the nausea when I forget to turn the main lights off, the way my heart rate skyrockets whenever someone in one of the adjoining flats or the car park below makes a noise.

These are the days I don’t want to live any more, the days I often have to work hard to stay alive. Although, on Monday, I was so low on energy that I figured never having existed at all would have been easier than actively having to die. I pondered owning a time machine and going back in time to force my mother to abort me, before realising that such an action would set up a temporal paradox that would have Emmett Brown “Great Scott!”ing all over the place. So I stayed in bed for much of the day, which I didn’t enjoy much either, then decamped, listlessly, to the sofa, where I watched an old drama on the TV because I didn’t even have the energy to put a DVD into the machine. I didn’t manage to eat until around five in the afternoon.

Someone on my facebook wall asked if there was any correlation between nutrition the day before and how I felt the day afterwards. There isn’t (except the day after I’ve had a very poor food day I often feel a bit “out of sorts” and that “out of sorts” often turns out to be hunger), but it got me thinking about what correlations there might be. And, once I started to look, there was a big huge one staring me in the face!

For years, I’ve had terrible Mondays. And they’ve been much worse since we moved to the flat. And now it seems obvious that the reason I’m so devoid of energy on a Monday is because of the weekend. At the weekend I’m more likely to go out, more likely to push myself to leave the house, more likely to see people – partly because we can park in town on a weekend and go and have coffee, partly because people are often around at the weekends, and orchestral gigs are often at the weekends, and partly because I am in the same room as my husband 24/7.

When we lived in the house this wasn’t the case – it was big enough for us to have separate rooms to go to, but the flat is not, so we are only metres away from each other all the time, unless one of us goes out. Even *that* level of communication, as opposed to being completely on my own for an average of 14 hours a day during the week, is enough to tire me significantly. And because it didn’t really occur to me, I’ve never made an allowance for it, like I do when I’ve been out to something more obviously social. But although I love being with him, I need solitude. I think he feels the same. We do work together, but we really need our space, especially at the moment with so much else to deal with.

I wondered, on Monday, as I sat there, trying to survive, still desperately miserable about the lack of formal diagnosis (when I started to think that people should be putting trigger warnings on posts about diagnosis I knew that I was really distressed about it), whether I’d reached the lowest point of this whole thing (or certainly a very low local minimum, comparable to that following the first assessment or the time back in the autumn when the hot water failed). I even tried to write about it. There wasn’t much there though, forming thoughts into words was very difficult, and the few lines below took all afternoon to transcribe from the mess in my head.

Rock Bottom?

Have I got there?
Any further to go?
Or is this geological nadir?

Still undiagnosed.
Still burnt out.
Still waiting.

Even written words hard today.
Really struggling.

When will diagnosis be?
When will burnout recovery be?
How long do I have to wait?

Life on hold.

Fortunately, things did start to improve. My husband arrived home in the evening with a part to fix our broken washing machine and while I sipped wine he set to work installing said part. I didn’t manage to test the machine until the next day, but am delighted to report that it now works again!

The next morning I felt a little better, so decided to try to do some of the things I really needed to do. I got up at a fairly reasonable time, even had a small amount of toast for breakfast, and then left the house, on my own! I went to the vet surgery to settle up our bill and collect some ashes. I went to the doctor’s surgery to collect my prescription and to register for online access to the prescription service – having almost lost my words and had them suddenly go into random order on the phone convinced me that it was worth registering to be able to do it online. I bought a sack of animal food from the local country store. And I went for coffee.

I haven’t had a drink in coffee on my own for months. I’ve sometimes managed to get a takeaway coffee to drink in the car, but the effort of communicating with baristas through the noise of the shop has been my absolute limit. If my husband’s been with me then he’s ordered and I’ve managed to sit in, but I haven’t managed to do both for quite a long time. But it was quiet, and as I stood at the counter in my sunglasses, bouncing up and down on my toes, I assessed that there was a quiet corner and I’d be able to manage.

So I had my coffee in. And because I was staying in I had my usual (regular latte and a piece of lemon cheesecake). And I managed. And ate my cheesecake. And drank my coffee. Which was excellent! Admittedly, I rocked back and forth in my seat the whole time, but it didn’t seem to present any problems to the world, so I just sat there quietly doing my own thing. Going out for coffee might seem everyday and trivial to many people, but for me, at the moment, it is a monumental achievement!

When I got home the good day continued, which is why you didn’t get a blog post. Unlike Monday, it wasn’t that I didn’t have the energy to make one, but that I had enough clear-headedness to do something more than writing blog posts. And while I had that sort of clarity in my head I wasn’t going to waste it – so I set up a calendar for 2017, and a list of dates on which I’ve been asked to do things, and a list of people to contact about those things. I sent a few e-mails, just the first ones, mainly the simple things that were either wanting information that was easy to access, or that were gigs I definitely can’t do because I know they’ll be too much. I still have more people to contact, but the ball is rolling. Life became just that little bit more sorted. A little bit better. I am getting there.

And as for today, I’d say it’s been middling, which I’m quite pleased with, given how much I got done yesterday. In my more optimistic moments I allow myself to believe that Monday really was rock bottom and things might improve from now on, though I know that this isn’t a strictly linear process, and there will likely be many more ups and downs before things finally settle into something a bit more equilibrious.

We can only wait and see what happens tomorrow!

Various Feelings

06-2016-12-09-15-28-38Relieved. So relieved it wasn’t my fault.
How different I was.
The times I failed.
The things I couldn’t do.
I’m just wired differently.
I always was.

Angry. So angry that it took so long to find out.
That nobody knew.
Expectations so high
I could never fulfil them.
Naughty and lazy.
That’s what I thought.

Contented. So contented to have discovered.
Found the real me.
At long long last.
Finally allowing myself
A more gentle life.
Recovery time.

Sad. So sad for the lost years of my youth.
Pretending, wasting energy.
Having to start over
Middle aged and tired.
A shattered life.

Hopeful. So full of hope for a new life.
New strategies and plans.
Learning what works.
Better for me.
Being myself.
Finally relaxing.

Broken. So very very broken.
Always was.
Always will be.
Ambitions shattered.

Excited. So excited by the information.
Others are like me.
A new interest.
Obsessive learning.
Books and articles.
My life explained.

Scared. So scared by the newness of it all.
Going to get it wrong at first.
So much information.
New words and sensitivities.
Needing to explain
But I hardly understand.

Stimmy. So stimmy as soon as I allowed it.
The release as I give up on stillness.
Allowed to fidget.
Fiddle, chew, flap, rock.
Bash, jump, rub, sway.
Instinctive. Natural. Beautiful.

Frustrated. So frustrated with waiting.
For official recognition.
For any help at all.
For someone to see
What is obviously true
And to believe me.

Grateful. So grateful for a wonderful spouse.
Supportive through dark times.
Caring, and loving the new me.
Equally fascinated and obviously
Also wired like I am.
Our marriage explained.

Shocked. So shocked that this is the reality of my life.
Totally unexpected.
Just how many things.
Mind blown
By the massive revelations
About myself.

Calm. So calm for the first time ever.
I hadn’t realised
The world was so tough for me.
But now I do I can retreat
When I need
Into my own safe place.

Damaged. So damaged by the difficulties.
But nobody knew, not even me.
Trauma internalised.
Mental illness.
Will take time
To sort it all out.

Optimistic. So optimistic for the future.
Recovery and adapting.
Learning and strategies.
New ambitions and goals
Suitable for autistic me.
Making it work.