Accumulation

There are usually two reasons why I might not update this blog for several days. One is that I’m too busy, doing too much out in the world and am therefore spending all my energy interacting with people out in the world and all my time simply doing whatever it is and therefore don’t have enough energy or time left over to write a blog post. The other is that I am simply unable to write at all because I cannot translate the thoughts in my head into sufficiently coherent words because I have run out of energy completely and it is all I can do simply to survive and get through the day.

Both of those situations have been the case this past week, which is why I’ve been absent. After a couple of really busy music events the previous week (and yes, I did leave two clear days between each for recovery), I then went out to lunch on Saturday, went running on Sunday, out to lunch again on Monday, and then had to drive over to the vet on Tuesday to collect a rat who’d had a operation.

It turned out that, when added to the musical activities of the previous week with bare minimum recovery time and no “well days” in between for me to gain energy, four consecutive days out of the house was too much for me (in fairness, I didn’t plan four days, because I’d forgotten about collecting the rat, and even when I did remember, just a drive to the surgery didn’t seem like it would be too much – but it was).

And then, on top of all this activity out in the world with noise, and interaction, and so on, there were other things going on. Several incoming messages to deal with, things I wanted to say and comment on, friends who needed support in various ways, a bit of family stuff (father starting chemo), a birthday, anticipation of the upcoming weekend (which is now happening as I type), and my spoon rations were stretched to their absolute limit. And last thing on Tuesday evening the very last spoon of my spoon overdraft was used and I went from “coping” to “not coping”.

With hindsight, the signs were there. Saturday lunch was the last “proper meal” I managed to eat, and my food intake got increasingly erratic over the next few days. I started to feel exhausted again. I gave up commenting on facebook posts I’d wanted to because I couldn’t find the words. Sunday I got wiped out by going for a run and lost speech again. And once I got to Tuesday night I managed about one hour of sleep in total.

I haven’t felt up to writing a blog post, not even a “poem style” one since then. I’ve tried on several occasions. I’ve lain in bed with the phone, sat on the sofa with the iPad, and at one point turned on the computer and managed to type a title before feeling so awful I had to go and lie down again. But that has been it. Today is the first day I’ve really felt anything other than absolutely dreadful.

And I finally figured out, yesterday, I think, WHY that is. Even if I had been wrecked on Tuesday evening I should have been OK by Friday if I’m thinking of the “two days for recovery” rule, which I’ve been applying and which has, on the whole, been reasonably successful.

But what I hadn’t figured on was the cumulative effect of stacking up many events on top of each other. I hadn’t figured that the two days are just what’s needed for recovery from doing something, but that they’re not enough for proper recuperation. If doing something takes me into spoon overdraft, then two days can usually get me back to a balance of zero, but if I don’t take MORE time alone with minimum sensory input then I never get chance to accrue any savings. I’m living on credit the whole time.

And now I’m paying the price. I was supposed to be going to the Air Tattoo yesterday with my friend. I was not well enough to go, not by a very long way. I wasn’t even well enough to e-mail him to tell him I wasn’t well enough to go, so my husband had to do it for me. It was left that there might be a possibility of going to park and view nearby tomorrow, but, as I type this, I don’t think I’m going to be well enough for that either. I’m still struggling to eat. My sleep is still really disturbed. And my mood is not, shall we say, at the top of its game.

And my husband isn’t here to do the communicating for me either because he’s out for the next two days running the 100K ultramarathon that I am missing terribly and want to be doing too, but am not well enough. I’ve been dreading this weekend for a few weeks now, knowing what sort of weekend I wanted it to be, what I wanted to be doing, and what I wouldn’t be doing, because of stupid burnout and being not well enough to have done enough training or anything.

And it’s turned out that I’m not even well enough to go and watch aeroplanes either. I’ve run through, in my head, the potential scenarios for tomorrow, and I can’t imagine how I’ll cope. There will be people, there will be noise, there will be nowhere to hide, nowhere dark to go. It will be a long day that will use spoons fast. Even in past years, before I knew I was autistic and before this particular burnout, it’s taken me several days to feel well again after going to an airshow – I now understand why. My husband has made sandwiches and has left them in case I go and need them, but my head just can’t make it work right now. I’ve been trying to get out of the flat for the last day and a half in order to do a few jobs – I need to go to the bank, my phone has run out of credit, and so on, but even that feels too much for another few days. I need more time, more space, more recovery.

All this makes me sad. Things that I want to do, things that I love doing, I just can’t. It also makes me afraid, afraid that people will stop asking, that they’ll think it might be “too much” for me and that decisions about what I do will get taken out of my hands because people will think they’re protecting me by not inviting me to play music or have lunch or go running or go to airshows or whatever. And I’ll miss out on opportunities that I COULD have taken (my functioning abilities are so variable that I can often do something one day that I have not a hope of doing the next, and vice versa) and on things I enjoy. I also worry that they’ll stop being genuine with me, thinking that I won’t be able to cope with difficult stuff, and I’ll end up with a confused “half-reality” which I absolutely don’t want, even if I can’t always help with that particular thing at that particular time.

I have to learn this stuff for myself, and I have to discover just what abilities I’ve been left with following the burnout of the last year, just how far I can push before I break, and what I can do to mitigate against the effects of going out into the world and doing things. I have to learn how the cumulative use of energy stacks up and what I can do about it. Even realising, this week, the difference that “accumulation” of spoon debt makes to me, it has become obvious why I’ve struggled so badly to hold down even part-time jobs. Even if I can get through the first week, the damage to my energy levels stacks up so I’m incapable of doing the same in the second week, and I eventually fall apart. Looking back now, it’s easy to see the patterns. And in a strange way, being able to see those patterns and understand why I lost the jobs is at least satisfying and persuades me, just a little more, to stop blaming myself (as I have done for years) for my many failures in the workplace.

Before my husband headed off to go running around the countryside we were able to discuss some of this. He reminded me that it’s still less than a year since the huge discovery that I was autistic (which is possibly the most life-changing thing that will ever happen to me), and it’s still less than 5 months since my diagnosis, and that I’ve actually come a very very long way from where I was back in December. I’ve recently done things that I could hardly have dreamed of back then, so it really is progress overall.

However, progress takes work and energy and costs spoons. Even if the general direction is upwards, sometimes things will go downwards. While I continue to be the sort of person who wants to go out into the world and do things and to push myself to my limits (or, let’s be honest, to test the outer reaches of those limits and to keep pushing until I break, which is probably going to continue to happen quite a lot because living a “quiet life” is so counter to my personality that in its own way it’s even harder than doing the pushing because pulling back also takes a lot of effort), I will, inevitably, break from time to time.

Today, however, just doing what I really need to do will test my limits. I need to pay the council tax, I need to contact my friend about watching aeroplanes, and I need to eat. All of those feel like really really big tasks right now, but they’re what I’m aiming for. Anything else will be a bonus.

What A Year!

It’s my birthday tomorrow!

Don’t panic – this isn’t some sort of crisis of ageing, or plea for cake (though I’m not averse to cake), or any other similar thing. I have no issues with birthdays – been having them all my life and am generally pretty chilled about them.

I do always have a little moment of thinking about the actual number though, and usually, when I move from an odd to an even number it’s really satisfying – especially if it’s a really good even number with loads of factors, or some nice symmetry or something. 46 could be worse – a year of life for every chromosome is quite satisfying, and the fact that its prime factorisation is 2×23 echoes the chromosomal connection, since chromosomes come in pairs, enhances that satisfaction (even though 23 is a much larger prime factor than I’d ideally end up with for maximum numerical pleasure). That it’s made up of two adjacent even numbers pleases me, as does the fact that the digits add up to 10. I’m sure I’ll be thinking of many more advantages and disadvantages of 46 as a number over the coming year!

So today is the last day that my age will be 45. Unusually for an odd number, I find it really pleasurable. Prime factorisation of 3x3x5 is good, the fact that it is the sum of the digits is even better, and, of course, it is a multiple of 5. Multiples of 5 are the most preferable of all the odd numbers to me, so being a “5” is always good. Furthermore, the digits add up to 9, which is a square number (nice) and it is, itself, a triangular number! All this is good!

However, aside from an excuse to enjoy a bit of prime factorisation and so on, and maybe eat some cake or have slightly nicer wine for the evening, birthdays do make me pause, just briefly, to remember birthdays gone by and to reflect on the past year.

And this year I’m looking back at the last 12 months and basically thinking “Crikey! Did all that really happen?” in a really really big way.

Really really big!

Because 45 is always going to be the age I was when I discovered I was autistic and when I received my diagnosis.

I’m still struggling to explain just why such a discovery and diagnosis is such a big thing (though talking to others who have been through the same has revealed that I’m not the only one who regards this as such a big thing, as life-changing, and probably even life-saving (or, perhaps, life-prolonging, because I have to die sometime, just a case of whether that sometime is sooner or later)). I am, of course, still trying to get my head round the whole thing in any case – the discovery was only 11 months ago and the diagnosis less than 5 months ago, and on my last birthday I was still totally clueless about my neurology and about many of the things that have occupied my mind for most of the last year.

I wasn’t someone who’d “suspected for a while” (though I always knew I was a tad on the eccentric side and generally did things my own way, and I’d been aware all my life that the world was generally confusing and often difficult, and so on – but I assumed that was just the way life was for most folk and they just had more energy than I did), so I really have gone from “completely oblivious” to “diagnosed autistic” in a rather short space of time.

And I find myself in the slightly odd position of being rather knowledgeable about being autistic, simply because that has been my lived experience of the world all my life, which is rather strange. And, of course, because when I then get interested in something (such as autism) I get VERY interested, I’ve learnt a whole load of stuff that I’d never even have imagined existed this time last year! And most of it basically describes me, and my life – and I turn out to be rather less unique and different than I’ve always assumed! This is also odd – I was a quirky, crazy, eccentric, and rather batty neurotypical person who had basically failed at loads of stuff and was seriously mentally ill (all of this so I thought, though I’d never have used the term neurotypical because it wasn’t part of my vocabulary), and then suddenly I wasn’t – I was a really rather ordinary and quite stereotypical autistic person who’d been trying to be something I wasn’t for decades and had broken myself in the process (quite a revelation)!

And I’ve spent much of the last year thinking about all this, and learning, and realising that I AM, in fact, very stereotypically autistic. And as soon as I put autism into the equation, my life makes sense in a way that it never has done previously. And as soon as I realised what had been happening all these years and ran out of energy to mask, it all seemed so very very obvious!

And all this happened when I was 45. From first suggestions, formation of hypothesis, through self discovery and the diagnostic process, discovering other autistic people, taking my first tentative steps into becoming part of the autistic community, becoming a blogger, and starting the process of reframing my past and pondering what might make a more suitable future than the one that I’d been working towards all my life (and failing to achieve).

There’s loads more to do and loads more to learn. I’m still reading and watching and working out how to respond to people’s questions. I’m still trying to work out how to respond to my OWN questions – this is not something that happens overnight, and my views on things are still constantly changing and evolving in the light of new information. This is a process that will probably continue, to a greater or lesser extent, for the rest of my life.

But one thing is fixed. For the rest of my life, the year during which my age was 45 will forever be one of the most important years of my life (maybe even THE most important). The twelve months that have just happened have undoubtedly changed my entire identity (yes, it really IS that big – I am of course “still me” in many ways, but the knowledge I have gained in the past year means that my life will never be the same again – my past looks completely different now, and the way I live my life and feel about myself and my place in the world has changed forever – this is not a bad thing, rather a great relief and liberation from years of pretending to be someone I wasn’t)!

Tomorrow will be my first birthday as a known autistic (obviously, I’ve been autistic on all my other birthdays, but just didn’t know). I’m not sure how I feel about it (thanks alexithymia), but I sort of think it should be significant somehow. Perhaps I’ll work it out at some point. I think maybe there is a sense of moving on and continuing to rebuild my life and continuing to experiment and to work out what I’m actually going to DO with however many years I have left on this planet (that isn’t yet obvious to me, having had to ditch many of my previous expectations), but also a year of “this time last year”s ahead, as I continue to process everything that has happened and to review each milestone in my autistic journey with the benefit of a year’s hindsight.

But whatever happens in the future, what happened when I was 45 will stay with me for ever. 45 will never be “just another age” for me. Not only did I get my diagnosis at 45, but the whole process happened within that year. I can’t imagine I’ll ever have another year like it again.

My mind’s still a bit blown by it all really!

But, on balance, in a good way!

Busy and Hot

When I woke for the first time today, at around four in the morning, I asked myself what I was going to do with the day. I had all sorts of plans in my head for things I might do, places I might go, what I might write. As it is, I eventually fell asleep again, and have now only just surfaced. It is nearly midday and I know that the plans I made in my head at four this morning are, on the whole, not going to happen.

And after a brief moment of beating myself up about it, I suddenly realised why I was so exhausted and why I haven’t written a blog post since Sunday and why I didn’t write the one I wanted to on Tuesday or the others that I still want to write (one in response to something) and why my admin is behind and I owe people messages and e-mails and so on – I have been busy!

The last two weekends I’ve been playing music. It’s been amazing and enjoyable, and brilliant to meet up with friends (old and new) and to play under a conductor who’s an absolute pleasure to work with. The concert was on Saturday night, so I was pretty wiped out on Sunday, but felt moved to write the rather rambling blog post on pride anyway. Monday I went for a short run, which, given my recent running activity, was a big deal. Tuesday I went to visit my best friend. Wednesday I went for a coffee then went to buy a few groceries.

And all this at temperatures above 30 degrees, which we’re really not used to round here, and which drain my energy rapidly. Furthermore, there is no airflow through our flat, so the only way to stop the hot air stagnating and to get any sort of breeze is to use fans. The noise of the fans is really not good for me and overloads me pretty much to the point of meltdown within a fairly short space of time.

Maybe, to most people, that level of activity and a bit of hot weather really wouldn’t be a big deal. When I think back to the “me” of the past, before two huge burnouts, before mental illness was even identified, that “me” would have looked at the “me” of now and thought myself utterly pathetic. I’d have been unable to comprehend why I couldn’t just get my act together and, with enough willpower, just get on with it.

Of course, the “me” of the past being like that, forcing myself to live that “normal” life for so long, doing what was expected of me and using vast amounts of energy and willpower to do so (largely because I assumed everyone else was doing the same), is a large part of what has caused me to have two major burnouts and to have arrived where I am now, with rather depleted functionality and very low energy levels.

Fortunately the “me” of now is starting to learn. And, a few minutes before writing this post, I realised not how LITTLE I’ve done over the last few days, but how MUCH I’ve actually done. And, I had, once again, to remind myself that my mind works a bit differently from most people’s and that I need more downtime, more space, and that things that come fairly easily to many folk, are actually rather challenging and energy consuming for me.

So the plans that I made at four this morning are now dropped, forgotten. Today I need to focus on self-care. I need to stay at home, even though the temperature in the flat is still 28.5 degrees and the place smells stagnant and nasty because neither of us has had the energy to do any serious cleaning and there’s no airflow because it’s so still. It’s not ideal, but it’s not a choice, because I need the solitude. I need not to go through the anxiety cycle of going out and working what to say to people and so on.

If, and only if, I have enough energy beyond that required for basic self care, I shall try to sort out the jobs lists and my diary, and sort out what I need to do, even if I don’t actually do it, but I expect it won’t get much further than that. As I’ve increased my levels of activity, and as I start to gain a bit of functionality as I emerge from burnout and from the whole “discovering I was autistic and getting diagnosed” thing and all the shock and relief and complete re-evaluation of my life, it’s tempting to think that I can just “go back to normal” without any consequences. But, of course, that isn’t the case.

And, interestingly, the blog post I wanted to write on Tuesday was the one outlining how I now am, four months after my diagnosis (it was the four month anniversary on Tuesday). And I’ve sort of gone and written it anyway – at my second follow up appointment it was noted that the increase in activity and my “recovery” carries a price, and that I need to remember that. This week that price has been that my head has become more and more muddled, I’ve struggled to hold conversations and to form words, I’ve struggled more with basic stuff at home, I’ve retreated once again into eating the same thing every day, and my decision-making capabilities have plummeted.

My level of satisfaction with life has also dropped – despite what might be perceived by someone from the outside (I’ve been seen playing music, going for a run, visiting a friend, and having a coffee) possibly indicating that I am happier with life and doing more “enjoyable” things, I’ve actually felt less happy, more frustrated, and generally more anxious. Yes, I’m really pleased that I got out to play in a superb concert and that I went for a run etc. because these are things I love doing, but they still drain my batteries, and a combination of the heat and trying to fit in other stuff has meant I haven’t been able to recharge properly.

Ironically, a viewer from outside who observed how little I’ve stimmed over the last few days might decide that it’s some sort of “improvement” and some sort of “your autism’s getting better” thing. In fact, the reverse is true. I desperately want to rock hard on the sofa for a bit, to wrap myself in compression, and to hide under my fleece blanket – these are all good and lovely things and part of how I cope with having to deal with the outside world. But I can’t cope with doing them at the moment because it is TOO HOT. So not only am I dealing with bad sensory stuff (noise of fans, feeling sweaty and nasty, smells stronger) because of the heat, I can’t mitigate with the good stuff.

So, in an odd way, I’ve looked more “normal” over the last few days, but the effect from inside is that I’m feeling increasingly dysfunctional and anxious and edgy and irritable. This “how autistic people look vs how they feel” thing is something I’m increasingly thinking about and want to write about some day, because I’m beginning to get the impression that the two are much more likely to be inversely than directly correlated.

In the meantime, I do observe that four months have passed since diagnosis, and that life is continuing to change. The people who wrote Tiny Glimmers back in January and Eight Weeks On back in April would have been amazed by what I have just written above and by what I’ve done in the last few weeks, so even where I’m still failing and still not achieving what I want to achieve (that will probably always be the case for me as my natural inclination is to constantly aim for more and to push to achieve goals and so on), I’m actually achieving much more than I was, which is, of course, progress.

But today “progress” will be achieved by resting and gentle tasks and self care, not by pushing on through. That way, I hope that I’ll be able to start to recharge my batteries enough to be able to do more running and music and socialising and to be able to think clearly enough to deal with admin and communication and to write more of the blog posts that I’d like to write!

Works In Progress

I’m aware that blog posts have been a little erratic of late, and it might seem that I’m doing less writing or losing interest. In fact, that’s not the case at all, and what’s actually happening at the moment is that I’m trying to work on a couple of projects, both of which will probably extend to multiple blog posts, and both of which I really want to get right and be as accurate and clear as possible, since both are important for different reasons.

One is the story of my final autism assessment, the one where I received my diagnosis. I’ve started work on this, but remembering back and trying to write exactly what I want about it is taking quite a lot of energy and is quite hard work, so it’s not happening overnight. It’s more of an “end of term assignment” than “this week’s homework”. It might take another week or so for me to complete this project.

The other is a write up of what happened on Tuesday of this week when I attended the National Autistic Society’s conference on Autism and Mental Health. I’m trying to write up the experience and what I learnt (I took 11 pages of notes), and my thoughts on the day as a whole. There are many of these thoughts and sorting them all out into presentable form will take a while. I’m currently working on them as fast as I can.

Furthermore, as is obvious from the preceding paragraph, I’ve actually been out in the world again doing things quite a lot recently. I’ve been to the conference, met up with a new friend, played quite a lot of music, and am also meeting up with old friends over the coming weekend. Furthermore, I’m starting to organize my life and plan for the future a bit too and have started thinking about goals and plans for the next few years in a way that I haven’t done for a very long time. Most of these things are taking a massive amount of social, sensory, and executive functioning energy and I’m needing to undertake a certain amount of self care (downtime in between, remembering to eat, etc) in order to cope with my increased activity levels while still continuing to recover from burnout. It’s a tricky balance to achieve.

So I’m still here, still working on these things, and still trying to do a good job of giving information and my viewpoint and doing so as clearly as possible. I’m still also working on tidying up this blog and making a complete list of posts and so on, but all this will take a little time, even though I’m very very determined. I’m doing, as I always do, my absolute best with it all.

But I’m only one human with a rather erratic mind, and I’m acutely aware that I need to protect my mental health so I don’t relapse, so it might take a few days for me to catch up on everything I’d like to say.

I’ll get there!

Somewhat Meta

This afternoon I sat at the computer and tried to work on a couple of blog posts. I have a huge list of things I want to write about, things that are swirling round my head, things that need translating into coherent words so that you, gentle reader, will understand them.

I also have a more immediate list, a list of posts that are on my “next to write when I have the spoons” list, and fragments of which appear randomly in my mind as I lie awake at night, or try to work out how to make tea, and so on.

But the days on which I can work on these posts are limited. Some days I can sit and type three good, long, coherent, informative posts without pausing to draw breath (or, indeed, more accurately, stretch my fingers). However, some days I can hardly make the words happen at all. Sometimes on those days I can make “poetry” (or whatever the things I call poems are) on the iPad, sometimes I can lie in bed and type analogies about art galleries into my phone, and sometimes I can tidy up previously written posts and remove some of the more glaring errors from them (I recently found some muddled wording suggesting that I’d just discovered I was in my 40s, which really wasn’t what I meant to say)! Some days I can do nothing at all, and I am frustrated beyond belief by my inabilities.

Today I sat and tried to summon the words to write a post I very much want to write, and they weren’t there. So I sat and thought about why they weren’t there. And I noticed a pattern.

Last week I spent almost all week at home alone. I’d had a busy few weeks and been out over the weekend, so I was socially and sensorily spent. Monday and Tuesday were lost to recovery, but by Wednesday I started to feel a bit better, and by the end of the week the words were flowing quite nicely and I was much improved and starting to feel quite good. My head was clearer, I was getting a bit more done in the flat, and I was able to write more than I had been. I was even eating a little better.

But I had not left the flat all week. I had spent around 14 of my waking hours each day in near darkness, as quiet as possible, and in total solitude.

Then, at the weekend I went to visit my best friend. He said I was in better shape than he’d seen me for a while. We talked a lot about a book project we’re both involved in, we had some tea and a snack with his wife, and I also popped into our mailbox in town to pick up the post and to sort out some admin there. I then spent Sunday with my husband at home.

This week, however, has been very different. I went out for a walk on Monday, then took Tuesday to recover from it. I then went out again on Wednesday to do various jobs in town that were becoming rather urgent, including collecting my prescription from the doctor’s and trying to book an appointment to see my GP. Those who are reading this and know me on facebook will remember a status full of sadfaces as I’d had a massive panic (close to meltdown) at the reception desk in the surgery and had fled back to the safety of the car. I’d gone in, with prepared scripts, knowing that I had to collect my meds, then ask what appointments were available and put one into the calendar. However, there were no appointments available. I cannot make an appointment to see my GP because all appointments for May are fully booked and June hasn’t been loaded onto the computer yet. The receptionist suggested I telephone later. This made matters worse, not better. I fled.

And now I have noticed a pattern. Whereas yesterday, Thursday, I was still, to an extent, very hyper from having been out the day before, still very overstimulated and very hypervigilant (virtually the whole day was spent in motion of some sort, stimming like crazy in an attempt to rebalance my senses), today I feel more drained, lower, and I’m definitely struggling to produce any words that aren’t just a direct stream of consciousness translation. I have a list of jobs to do, but, to be honest, you might as well suggest I climb Everest as expect me actually to do those jobs.

So, as I sat down to write the blog post I wanted to write today, and couldn’t, I went to the facebook tab and was about to annoy my facebook friends a little further with this startling revelation that when I go out into the world I need one day (like yesterday) to wind down from the experience and another day (today) to recover properly. Then I decided against that option as I’ve already posted quite enough there for now (I also nearly put up some links to this blog on a couple of groups, but deleted them before posting because I didn’t want to annoy folks who weren’t interested – publicity work is not my forte) and decided to type whatever was in my head into a word document instead.

I’ve also, interestingly, just tried to speak. It’s really really difficult. The words aren’t there except in one-at-a-time syllables. I expect they’ll go completely at some point, and then I’ll start to feel better, less stressed, and my head will start to clear. This is how it seems to work. It’s like those bits of my brain need rebooting from time to time, especially if I use them a lot or get stressed. I have varying levels of shutdown, and I’m beginning to be more aware of these (prior to discovering I was autistic I just thought I was feeling ill and in a bad mood) and learning to live with them. Right now I don’t feel that I’ll ever be capable of anything much ever again, but my brain knows that isn’t the case. And it doesn’t actually matter if I lose all my words today – I’m not planning on going anywhere and don’t need to talk to anyone, but it’s interesting to observe how this works.

Yet the typing is still fine. The thoughts are muddled and not sufficient for any sort of proper work, yet there is a translation channel for my immediate thoughts to go to my fingers that remains open (a bit like closing all the doors to a house but the cat flap is still available for the cat to go in and out as it pleases). So I figured that instead of starting yet another thread on facebook, I could actually turn the fact that I was struggling to write a blog post into a blog post!

I guess it’s not the most interesting blog post in the history of blog posts, and it’s definitely a bit meta, but it is what it is and maybe it gives an insight into how being a fairly newly diagnosed autistic still in burnout impacts on my life and ability to do things!

And now I have to actually do the posting bit, which seems like a huge ask right now, but I’ll be pleased that I’ve achieved something if I manage it!

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.