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!

A Short One

I have just been out for a walk.

This might not seem like particularly startling news. Especially when I tell you that my walk was just 2 kilometres long and I was out for under 20 minutes (the 2km actually took 18 minutes, 24.7 seconds).

The fact that I know that much detail about my walk (at an average pace of 9:12 per kilometre) will tell those in the know that I didn’t just amble round the block randomly, but I took my Garmin (running watch) and measured time and pace and so on.

I also wore my running shoes. A pair that have done a couple of marathons with me.

All this might seem rather irrelevant, and a slightly strange blog post. Maybe so.

But it is important.

Because it is the start of returning, properly, to life. It is a tiny bit of something approaching “normal” in this huge sea of autism and mental health and newness and unfamiliarity.

Aside from one short run in January, I have not run since November. Granted, I didn’t run today, but I took the first few steps (2043, according to my Garmin) towards it. Back in January I was making a desperate last-ditch attempt to be well enough for my spring marathon (and ultra) season, but I really wasn’t well enough, and quickly gave up.

So now I have abandoned all races until at least the autumn. And I am starting over. And I am making it as easy as possible to start over.

Because at the moment I am still struggling with inertia, massively. I’ll write properly about autistic inertia sometime – it’s the feature that means our brains are very good at persisting with things, often for hours on end, but are terrible at starting and stopping or switching tasks. The effort needed to start something is huge, and takes a lot of energy.

Furthermore, I still have huge anxiety when leaving the flat. My senses are still in overdrive from the burnout. The world is still loud and bright and full of so much information that I feel like my head might explode. Previously I would have used energy to mask these feelings, consciously blocking out the input to my senses – doing so for years has both left me too exhausted to function and has been seriously detrimental to my mental health.

So, in as far as I have any control over things, I am determined now, to be me, and not to use that energy unless I absolutely have to for survival. Furthermore, since the energy to mask ran out I can’t do it. I don’t have the resources to act any more, so I have to live as I am, now acutely aware of my heightened senses, but also no longer making myself be strong, no longer forcing myself to block them consciously, even though they are sometimes overwhelming.

Couple all that with the anxiety I’m still getting just leaving the flat, and you’ll begin to see why going out for a walk was such a big deal today.

And so my strategy was to make this first outing as easy as possible, so that all my energy could be focused on getting out of the flat, dealing with the overwhelming light, sound, smells and so on, and overcoming that initial hurdle of actually starting anything at all.

So no running clothes yet (there’s a sensory issue with fabrics touching my skin which I will have to deal with), and not yet backpacks or belts or other such kit. Daytime clothes, my familiar handbag for keys, phone, and inhaler, but just two relatively easy adjustments to my normal “leaving the flat” gear – my running shoes and my Garmin.

Tiny tiny adjustments. Minimising the “difference”. In order to get out at all soley for the purpose of exercise, without the pressure of an appointment or another person expecting something of me.

And a “workout” so easy that it didn’t tax me physically. I know I can easily walk 2 kilometres, so didn’t have to put that part of it into the pile of obstacles in my brain, didn’t have to factor in a tough training session when persuading myself just to go out at all.

And I took a regular route that I run often, a known 2 kilometres. In the early afternoon when most people would likely be at school or work, and I’d have as little chance of encountering people as possible.

And so it happened. Starting over. Picking up fragments of my old life, the life that fell to pieces when I discovered I was autistic. The life that almost ended in December. The life that I now have to rebuild, differently, readjusting now that I know better what will help me to stay well.

The absence of either job or offspring in my life, coupled with my extreme burnout and wildly fluctuating moods, has meant that there has been very little “normality” of any sort during the last six months. Learning about autism and my being autistic has been fascinating, but I am also worn out by it – my entire life has been consumed by it for months. I need to ease off – my head is full.

It’s time to reclaim just a few bits of “normal” life.

Slowly, gently, with space in between to recover.

A couple of kilometres at a time.

Talking and Listening

As a runner who has mental health issues it was, of course, a foregone conclusion that I would watch a television programme entitled “Mind over Marathon” – an account of how a group of people who have a variety of mental health conditions train to run the London Marathon in order to help improve their mental health. The programme is presented by a good and sensitive presenter with a team of “experts” to help, and also features a couple of young princes who are advocates for mental health awareness.

As a blogger who is currently trying to use the written word to explore my feelings about various things it was, of course, a foregone conclusion that my brain would be fizzing with thoughts that needed translating and my fingers would be itching to get to the keyboard in order to do that work. How successful I will be in trying to impart some of those thoughts, who knows, but I’ll give it a try.

But first, two really really big disclaimers, or “health warnings” or whatever you want to call them, about what I want to write later on.

ONE

I am in absolutely no doubt at all that it is massively massively good thing to talk about mental health. I think it’s great that young royals are getting involved in the whole business and raising awareness and making mental health part of the discourse of current life. Anything that can be done to “normalise” words such as “mental” (one of the participants on the television programme mentioned how uncomfortable he was using the word because of the derogatory connotations it sometimes has) and, indeed, “autistic” (which I’ve heard people say mustn’t be used because it’s an “insult” – er, no, if people are using it as an insult then they are misusing the word) is a good thing as far as I’m concerned. To take words such as “mental” and “autistic” and treat them in some ridiculous Voldemortesque way simply continues to ignore issues that need addressing in many people’s lives.

I have seen many posts online indicating that “It’s all very well for wealthy figureheads to talk about mental health, but what about the ordinary folk?” I have heard those messages and, to an extent, agree, and in no way do I believe that “Prince Harry says talk about mental health” means that the job is done and that “awareness has been raised” and we can all now comfortably go back to ignoring the real, everyday, practical problems that people are facing. BUT, out of my bubble of friends and online pages and groups, most of whom are pretty savvy about mental health issues (“mental” is a commonly used word in my life and I’ve been open about mental health issues for decades), there are still those out in the wider world who are not taking these things on board (some of the comments on mainstream media facebook pages alone are enough to indicate this is the case), and if a high-profile person talking openly helps, then yes yes yes, all to the good. Yes, a young privileged man who has suffered exogenous mental health issues as a result of going through the process of grieving the death of his mother in the public eye is not one with which most of us can relate, but it is valid personal experience and he has used the advantage of his position in the public eye to open the discourse.

TWO

I am also in absolutely no doubt that exercise has a huge and important role to play where mental (and indeed physical) health is concerned. I absolutely don’t need to be convinced about the wonder of running – I’m an ultrarunner and in the ultrarunning community it’s well-known that people have overcome depression, addiction, and all manner of other difficulties through the power of running. I don’t need to be convinced to enter a marathon – I do that just because I like doing it. I enter the ballot to run London every year but am yet to be successful. Running is awesome and cool and fabulous. I’m currently frustrated because my own difficulties currently mean I’m struggling to run and I’m really really keen to get back to it and gently pushing myself in that direction whenever I have the energy. I do not need anyone to tell me about the excellence of running – the sheer wonder that comes from being out on the trails alone in the middle of the night, with the moths fluttering in my head torch, is more than ample to persuade me.

I am, however, aware that running per se (and particularly yomping around the countryside alone at night) might not suit everybody and that other forms of exercise are available. Some people prefer to have a team around them, some have physical impairments that mean swimming is gentler on joints, and there are many barriers to some people exercising at all – it’s by no means easy, and it’s no panacea, rather, part of a toolkit that can really help improve mental health in some circumstances. I am also aware of the dangers of exercise addiction and its link to eating disorders and that not every journey to run a marathon ends in a triumphant finish line smile – for some, the stress of training or the frustration of injury can make mental health worse, not better. But, with these provisos, and other similar ones, I absolutely see how wonderful exercise can be, and it can play a really important part in achieving and maintaining good mental health.

***

Having said all of the above, what do I now want to add? What actually prompted me to write this post? And how can I address the issues to which I have alluded above?

The moment that triggered it for me was the point in the programme where they were interviewing a young woman who was clearly struggling with coming to terms with a massively traumatic experience in her life several years ago. Her child died suddenly, and her husband, overcome by grief, killed himself shortly afterwards. And this young woman sat on the telly and recounted what support had been available to her at the time – or, more accurately, recounted that there had been NO support available to her at the time. Nothing.

I don’t know what has occurred with her in the intervening years, and neither do I have the energy to do a research project on it, but it strikes me as shocking that her issues are only really being dealt with FIVE YEARS LATER! Five years is a very long time to be in mental anguish before you are eventually picked up by a TV programme. And, even now, it seems that in order to get the level of support that the TV people are providing, in terms of “experts” and so on, the woman has to run a bloody marathon – literally! (Please see disclaimer TWO above – and, of course, the marathon is the point of the programme).

And, watching the programme I was struck, not by the rigors of marathon training (that’s all familiar stuff to me – I went, as an obese fortysomething, from couch to marathon in seven months a couple of years back, and the training, exercises, foam rollering, so on are all part of the deal), but by the level of support that these people were given. Admittedly, the support came with a rather large side order of “we’re going to film this so you’ll be exposing your emotional vulnerability on national telly”, which I didn’t have to contend with, but neither did I have a cuddly TV presenter or an “expert” come and look after me when I was shaking because of the stress of leaving the flat before going out on training sessions – I had to do that bit on my own. The TV marathon training programme is therefore not looking at the effect of exercise alone on mental health, because it is providing these people with someone to talk to, someone who will listen to their issues (both the people on the show who can give feedback, and those of us sitting on our sofas at home), and that listening is really important.

I have been talking about mental health online for around a decade now. I’m pretty cool with it. I very quickly became totally public about being autistic. I talk about both mental health and autism. A LOT (probably too much, truth be told). When I have been in mental health crisis I have posted on my facebook wall and the overwhelming advice has been “seek help”, “go to see your doctor”, “get referred to a specialist”, and so on. So I have tried, on many occasions, to do just that. But it is a fight, and if you are already struggling, already finding life difficult, and already reluctant to ask for help because you feel, somehow, that it is your fault you are feeling this way (there’s an awful lot of guilt comes with many mental health conditions), then fighting through the system to get the help you need can be a seriously tough process. And if you have nobody who can advocate for you then it’s even worse. Persuading someone to listen to you can be very very difficult.

The problems I had trying to get an autism diagnosis in a psychological services department and my analysis of the situation are documented earlier on this blog (the only “treatment” available to me at that time was to “go to A&E” if I actually tried to kill myself). I was struck at the time by how little cohesion there was between the different services available and how there seems to be nobody available who can deal with all of my issues, as well as the fact that those with really low self esteem are seen in a building so dilapidated that the plants are growing through the wall! Even the superb autism service elsewhere that eventually diagnosed me as autistic, cannot, for example, suggest any medications that might help with the anxiety I get, and neither can they help me establish whether I also have comorbid ADHD (all the online tests and so on and research I’ve done suggest that I do), because that’s somebody else’s department (if I can ever find “somebody else” and can face the exhausting process of telling my life story, yet again, to another stranger).

So “seeking help” is not as easy as it might seem. In fact, for most of us, it’s really jolly difficult. I have heard tales of people who are totally broken being offered “telephone CBT” (when you’re vulnerable, you get rung up by a total stranger, who gives you your allotted time on the phone then hangs up, leaving you in a worse state), people who are unable to communicate with services they need because communication is only by post (not so good if you are frightened of opening the mail because of what it might say), and, people asking for help with fear of the telephone and who struggle to speak on the phone being given a leaflet and, yes, you’ve guessed it – told to call a telephone number!!!

Equally, “taking up exercise” is not as easy as it seems, especially when you’re mentally unwell. If you feel insecure and frightened walking down the street (many of us do) then you’re unlikely to find going out to walk or run very easy. Furthermore, if you want to swim, or join a gym, or get any sort of personal trainer, then it is expensive, even at reduced rate, and many mentally ill people are out of work and struggling financially – if you have to choose between paying your rent or joining a gym then you’d be pretty daft not to pay the rent. When I started running I was lucky – I had enough confidence to get out of the door and a husband who supported me all the way. I had enough money to get a pair of trainers and a sports bra to get started with (this wouldn’t always have been the case in my life), and I live in a place where many people run, and it isn’t a big deal. I also have serious hardcore willpower and a level of “persistence” that gobsmacks most people (possibly one of my autistic traits), but many do not. Though I know many people who are trying, some even apparently inspired by my own accounts of running and so on.

I fear I’ve raised more questions than answers here, and maybe that’s actually what’s needed. My experience in both the mental illness and autistic communities has been that so much of the support comes from within, from people also struggling. I am trying to work out what might have enabled me to continue in employment in order to help those might follow me and be able to maintain jobs where I couldn’t. I have developed strategies to support myself based on the writings of others whose blogs I read. There are groups and people everywhere trying to piece things together and help each other.

Equally, and, sometimes surprisingly, the running groups and fitness groups have also provided a source of support for me and, I observe, for others. Those who do not have the support of a TV programme have to look after each other, encourage each other, either to get out there for a run or whatever, to cope with the frustrations of injury, or to discuss the fates of toenails and so on. The online responses to people who are struggling with whatever aspect of their lives or training can sometimes be amazing.

However, online support can only go so far. And there is a danger that those of us in the mental health “world” exist in something of a bubble and that people outside of that world don’t realise just how tough it is to get help or to get out there and run a marathon when your mind is telling you to sit in your chair and wait to die or even to hasten the process by your own actions. What is really needed is concrete, joined-up support, and both mental health services and physical activities that are easy to access. That is a much much bigger ask, and I’m only one very ordinary person sitting alone typing into a computer, a person who is still struggling day to day, and trying to translate the thoughts whizzing round my head into comprehensible words, so I don’t really know what more I can do, other than keep talking and keep raising the issues.

And so I come to at least one conclusion, which is that programmes like “Mind over Marathon” and statements by young princes, are important. And they’re important because they raise issues that those of us who are just individuals with no resources and no power are unable to raise, because we cannot reach the people that TV programmes or princes can. They can persuade people who will never encounter somebody like me (for whom mental health is a normal part of daily discourse) to talk about their mental health issues, and they can encourage far more people to take up running or physical exercise than I ever will.

However, the worry with such high-profile campaigns is that people will feel that they have “done” mental illness. They’ve all watched the programme, they all know what it’s about, and, like with autism “awareness” there will be a general feeling of “yes yes, mental health, blah blah blah”, but mentally struggling people will still be showing up at their GP surgeries after weeks of angst about whether to attend the appointment because it’s all so scary, and will be given a telephone number, or a web address, or, at best, put on a waiting list that might be months, or even years, long. There are lots of small, quiet, voices out there, trying to talk about their mental health issues and begging for help.

There are also people like me, who are slightly noisier and more forthright and link to blog posts and so on and share mental illness stuff whenever we can, even though, sometimes, writing a post such as this one uses up all available energy for the day. Interestingly (and I’m not alone in this observation), when I share mental health stuff or posts from this blog (I know that this is, technically, an autism blog and that autism is not a mental illness etc etc) on my facebook wall, these days I get a small handful of “likes”, maybe 3 or 4 on average, if that. If I share a status about doing the laundry then I often get 30 or 40 responses! This suggests to me that people are ten times more interested in laundry than they are in autism or mental health issues!!! (Of course, it’s not quite as simple as that because facebook algorithms magnify posts that have already been liked and try to force people who share blog links to pay money for extra publicity and so on, but whatever the cause, the result is still the same).

On one level, it’s great to talk and to raise the profile of mental health issues, and it’s totally fabulous to run marathons if you can do it. If more people are encouraged to talk and run then that’s brilliant!

But on another level, there are many of us who are already talking about mental health issues (and in my case, now, also autistic issues), have been talking for years, and will continue to talk while we still have breath.

But is anybody listening?

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.

Changed Life

My life is an interesting mix at the moment. I say “interesting” because one of my ways of coping with things is to be “interested” by them and to learn. Feeling emotions is, on the whole, difficult and complicated, and I’ve never received any training in how to feel things, so it confuses me somewhat. However, the education system I went through did provide me with ample training on how to learn and analyse things, so I tend to retreat into learning and analysis whenever possible. My head is wired in such a way that I have wondered all my life why school spent so much time teaching me the easy stuff (for example, mathematics), but so little teaching the difficult stuff (for example, what to do in a tea break at work). I realise now that that might be because many people don’t naturally go off and learn mathematics for fun just because it’s interesting, and most people seem to have some innate knowledge of how to cope with tea breaks and haven’t had to spend years observing other people to learn what to do and how to handle such problematic situations.

Anyway, there are two conflicting strands intertwining in my head at the moment. The shock of my father’s diagnosis (see Reactions to Diagnoses) is still very present (although now, over a week in, I am starting, slowly, to process it), and I’m beginning to work out how to adjust my life in order to spend some time with him during the next few months. I’m trying to focus on sorting out the practicalities of visits and arrangements at the moment, and my priority is to use whatever energy I can to do what I need to do in a timely manner.

But I’m also acutely aware that I currently have very limited energy. Interestingly, other things in my life have suddenly become less important. I have, for the time being, abandoned any thoughts of participating in running races. I am still very burnt out, and while I recognise how wonderful running is for me and for my health in general, what I need right now is to learn how to stop pushing myself and to rest. Coping with the overstimulation out in the world is something I’m finding difficult at the moment, and pushing myself into massive physical exertion only overtaxes my system further. I’m also having huge sensory issues with running kit, which is a different sort of fabric from my usual soft cotton t-shirts, and I cannot reliably wear such clothes at the moment without sometimes encountering waves of nausea. Furthermore, getting dressed at all is often still really challenging for me, so getting changed and changed again uses up so much energy that it’s really not a valuable use of resources. And that’s before I start on the hours of build up needed even to leave the flat at the moment! I fully intend to return to running seriously again, especially the long distances that are so fabulous, but I can easily put it on hold for now, while I recover. I need to get my energy back, work out how to deal with the crowds at races so I don’t end up crashing out of them like I did last year, and maybe I’ll ease myself back in via halves and marathons first, then return to ultras in 2018.

I’m trying to keep a bit of music going, but, for now, only familiar and relatively low pressure stuff. This time last year I was preparing to play solo Hindemith as part of a gig, and to perform a concerto in the summer, but this year I am sticking to a bit of gentle orchestral stuff and maybe a bit of fun chamber music should the opportunity arise. Nothing that requires hours of intensive practice or any great pressure – even the pressure of finding concert clothes and getting out of the flat to the gig and being surrounded by people and the sensory demands of the outside world is quite enough to cope with.

The other really difficult decision I need to make might well be forced upon me anyway soon. For years now I’ve been studying maths with the Open University. It’s been brilliant, but it’s also been a really rocky ride because my health has failed so many times over the years. Things have also changed massively with the way that the courses and degrees are organised and funded over the years, and for the last couple of years I’ve been desperately trying to finish my degree before it vanishes completely. The University have been very good, and the tutors I’ve had have been nothing short of excellent in their support, but I fear that I have now reached the end of the line. I cannot see how I can continue to work at the level I need to for the time being. Unlike running and music, however, which can be picked up when I’m better, I fear this really is the end for the maths. Had this happened 10 years ago I would simply have taken a year or so out then carried on, but that is now impossible (very long boring story to do with government funding, modules, student loans, deferrals, degree programmes and so on).

My husband is going to try to contact the OU and see whether there is anything to be salvaged (if there is, then we’ll do it), but that, in itself, is a problem because they will only speak to me and I’m not up to having the discussion right now. The problem with needing help is that in order to get help you have to be well enough to ask for help and if you’re not well enough to ask then you just slip off the radar and vanish – the same happened to me with disability benefits – I just gave up. I can’t contemplate any of it at the moment – all my energy is needed just for survival. Furthermore, any hopes that I would eventually “get better properly” and be able to use a decent maths degree (during the times I *can* work my marks are often high and might, with good health, have led to an excellent degree) to establish a good career, are now gone. The problems I have with energy levels and executive functioning and coping out in the world when surrounded by other people are the result of me being autistic and that is permanent. Just finding enough strategies to COPE at all with life is going to be a big deal – I now know that the possibility of a “successful career” is gone and that if I ever manage to work again it will have to be a very different sort of work from that I had in mind when I hoped to “recover” from whatever it was that meant I kept breaking.

So, life feels like it is changing rapidly. Priorities are altering, and the upheaval continues. My life, which, a year ago, I had been hoping to build up, has shrunk back down to something much more modest. Doing 100 mile races, performing concertos, and getting a good maths degree all seem to be in a different universe right now. My relationship with my family is in the process of changing significantly, my ambitions for life are undergoing a time of readjustment, and my entire identity has altered. I’ve moved from simply “not being very female” to actively describing myself as non-binary and I’ve discovered a world I couldn’t even have imagined existed a few months ago. It’s also still only seven months since the chain of events started that would lead me to discover, a few weeks later, that what I’d regarded as “normal” for the last 45 years was in fact “autistic”, and eventually to be diagnosed with Autism Spectrum Disorder just 2 weeks ago today. It is all really really life-changing.

Interestingly though, two weeks after diagnosis, my husband has remarked that for all the current problems in life, he perceives an underlying wellness in me that he hasn’t seen for a very long time. For all the upheavals, and all the strife, and the current difficulties, it would seem that the process of accepting who I really am IS eventually going to lead to a better life. It has become obvious from the “facebook memories” feature that for all my external optimism about life a year ago I was already really struggling, and the signs of impending burnout were already there – the life that I was still rebuilding was unsustainable, but I just didn’t know it.

And, now I am finally emerging from the diagnostic procedure itself, then, following shortly afterwards, the news from my father, I am starting to accept my changed life in a way that I wouldn’t have done previously. The angst I felt before diagnosis (even when everyone round me was telling me that of course I was autistic and go gently on myself and so on) is starting to recede and I feel, oddly, like a “more confident autistic”. For the first time in my life I am learning to take pressure OFF myself. For the first time ever, I’m able to tell myself that my head DOES work differently from the heads of most other people and that it’s true, what I mean by “tired” is different from what many other people mean by it (not all – obviously there are those who have other chronic conditions and illnesses and so on – I’m not referring to them, but to the population as a whole, to the people who CAN go out to work every day and so on). I am learning that being autistic means that my system gets exhausted JUST BY EXISTING, and I therefore need more rest than most people do. I am allowing myself to rest more FOR THE FIRST TIME IN MY LIFE, and I’m no longer forcing myself to constantly push through the bad feelings.

I’m finally letting go of the notion that I need to be all things to all people – I scroll past questions on facebook that I know I could answer, but sometimes I let someone else take the question because I know that typing a lengthy answer will tire me. I look at some of the posts and “advice” in the self-help and fitness related groups and books and I know now that this advice might work really well for neurotypical people, but that it doesn’t work for me because it doesn’t take into account that my neurology is different. Autistic people need a different version of the “self-help” manual – one that takes our neurology into account, one that recognises our differences and the extra work we need to put in in order to exist in the world and the fact that being with other people is utterly exhausting for many of us (maybe I’ll write one sometime)! I am starting to recognise that in order to stay well I have to question much of the “received wisdom” about life, and much of what I’ve learnt through the years. I need to adapt the advice, rethink the strategies, and alter my life accordingly.

And although I’d been learning lots and lots of this on my own, had disclosed my autistic status on this blog (see The Discovery) to anyone who cared to read it, being validated by a professional has, for me, given me the permission to change my life and to feel justified in doing so, which is why what happened two weeks ago today was so important. It turns out that even if the rest of the world was absolutely convinced that I was autistic and did everything they could to help and reassure me, the person who really needed convincing was me.

False Summits

68-2017-02-16-11-56-27When I was a child I did quite a lot of hill walking. In recent years I’ve taken to fell running. And, as anyone who walks or runs up hills or climbs mountains will know, one of the most disappointing and frustrating experiences is the moment when you trudge, exhausted, those last few steps to the top of the hill, but instead of being rewarded with a beautiful view and the moment of touching the triangulation point and knowing you’ve “got there”, all you can see ahead of you is another hill, seemingly bigger than the one you’ve already climbed. You know that if you want to reach the top then you’ll have to keep going, to carry on climbing, to drag your aching legs and burning lungs onwards, because otherwise you will descend, not with a sense of achievement, but with a sort of stale disappointment.

Once you know of the phenomenon of the false summit you can, to an extent, prepare for it. You can look at the contour lines on the map, you can make yourself aware that this is a multi-stage climb, you can take a sandwich or a little bite of something tasty as a reward for the smaller summits to encourage you towards the bigger ones. But the first few times you do a hill, when you haven’t remembered the map perfectly and it’s just a bit further than you think it will be, there is frequently that sense of disappointment as you have to dredge up yet more energy to go up that bit further and to keep climbing.

I googled “false summits” because I am wont to googling things. Google told me that false summits “can have significant effects on climber’s psychological state by inducing feelings of dashed hopes or even failure.” Google is correct, dashed hopes and failure were exactly what I felt after my first two autism assessments.

About a week after the failure of the first assessment I saw a cartoon, a bit like the one I’ve attempted to draw above, on an ultrarunning page. Obviously, it was meant there in the context of literally running up hills, something to which I can relate quite strongly these days. But, seeing the little person (who on the original was just falling off the crest of the first peak) with a new monumental task ahead of them resonated with me not only in a practical way but in a psychological way, as I was starting to realise that the process of obtaining a formal autism diagnosis was not going to be an easy one.

This is, of course, one of the reasons why self-diagnosis is widely accepted within most autistic communities – the process of getting a formal diagnosis is, for many people, very difficult and involves a great deal of stamina and perseverance, often at a time when a person is already compromised energy wise because the very process of discovering they are autistic has been triggered by some sort of crisis or burnout. Without my husband’s help I’m not sure how I’d have managed to get this far – it has been difficult and stressful in the extreme anyway, and how much more so it must be for those who don’t have someone absolutely 100% supporting them I cannot imagine.

So, as we approach assessment number three, I feel like I’m trying to trudge up the hill again, in the hope that eventually I shall reach the summit. I learnt from the first assessment that lots of forms, and lots of checking, and doing everything absolutely as well as I could was utterly useless in the face of someone who stopped the assessment because they said they couldn’t diagnose me. We were then promised that there would be someone available in January and the second assessment was booked – the promise of someone who could see me turned out to be a lie because there was no such person available and it felt like I arrived once more, with the triangulation point almost in sight, to be turned back because the path round that side of the hill had been eroded and slipped into the valley below. The stress of waiting for the second assessment and getting our hopes up once again was, of course, just enough to mean that the whole of the Christmas vacation time was spent stressed out and worried, which wasn’t great timing.

And so we’re trying again. I feel like my legs are exhausted. My lungs are shredded. I have eaten nearly all my sandwiches. My backpack is digging into my shoulders and I really really just want to get to the top now. I don’t know whether I will or not. I don’t know whether this is another false summit I see ahead of me. I don’t know whether, by the end of next week, I will still be trudging up this particular hill in all weathers, still trying to get to the top, or whether I’ll be standing on the top, the sun will come out and I’ll be surrounded by beautiful views.

Uncertainty all round. I see the hill in front of me, but I don’t know whether it’s really the top yet. My mind is struggling to focus on much else at the moment, but thinking of analogies to describe it all helps somewhat. I dissociated quite a lot before the first two assessments, once the anxiety had reached a stage where my brain simply cut out. Maybe it’ll be the same this time. At least I’m prepared for it now.

And if it turns out to be yet another false summit or the path is broken again then I might well end up, as I did after the second summit, coming back down the hill for fresh supplies of sandwiches (another referral to another centre and a repeat of the whole formageddon experience). Another return to base camp for supplies, another failed attempt, another lot of energy needed.

Getting an autism diagnosis is like some sort of crazy psychological endurance sport!

Can you tell the anxiety levels are rising fast?

False summits…

The last sandwich…

Forms and evidence…

Uncertainty pervading…

The future, just a question mark, at what might or might not genuinely be the top of the mountain…

An Achievement

47-2017-01-22-11-23-13This morning I went running. For the first time this year. The first time since early November. I only did 2 kilometres, at a pace of 7:15 per kilometre. Neither long nor fast. Under normal circumstances I’d hardly consider such a run worth putting my shoes on for – I’m an ultrarunner and I like to be out there for a long time. My usual idea of a “short run” is anything up to half marathon distance or so. My usual idea of a “long run” is one that takes a whole day and involves backpacks and nutrition and so on – maybe the “autistic intertia” that makes starting and stopping activities so difficult is actually an asset in ultrarunning?

However, during the last few months I’ve been so burnt out, so stressed, so frightened to leave the flat most of the time, that running simply hasn’t happened. Just the effort of putting kit on has been completely beyond me, and I’ve looked, slightly sadly, from time to time, at my pile of much-loved running shoes in the hallway, desperately hoping that I’ll be well enough to put them on again one day.

Running is one of the things that might, in autistic terms, be described as one of my “special interests”. I’ll discuss the whole concept of “obsessions”, “special interests” or whatever they’re called at some point – I tend just to think of mine as things I like, but I do recognize that when I like something enough to bother with it at all, I really do bother with it. The first day I put a pair of running shoes on and moved slightly faster than walking pace for one painful minute, I began a journey that would lead me to a 100 kilometre ultramarathon just 9 months later. I read the magazines, I’m obsessed with the kit, the nutrition, and so on. I have a steadily growing pile of books about running, and I love following online trackers of races and feats of endurance running whenever they’re available.

This last few months though, I’ve had to sit and watch as others actually did the running. I simply couldn’t manage it. Over the autumn I pulled out of two halves and four marathons, all of which I really wanted to do. I’ve realised that races are going to need some strategies to cope with – it has become obvious that when other runners chat to me it severely impairs my running performance, even people cheering me on uses language-processing power that means I have less energy available for the actual running. I absolutely hate having my name on a race vest – it freaks me out when random people suddenly shout my name – it is not encouraging for me, it is spooky and weird.

I have also always resisted joining a running club. People tell me the camaraderie is wonderful, and that the beers in the pub afterwards are lovely. But, to be honest, I’d rather give up running than have to join a club – I want to do running for running’s sake and one of the reasons it works for me as a way of getting fit is that I can do the actual running completely on my own. I like the quiet, the repetitive action of one foot in front of the other, over and over and over again, the same thing, lost in my own world. The minute someone talks to me that spell is broken and I am dragged back into a world where I have to work out other people and what they want and why they have spoken to me and what they are hoping to get out of this conversation. I’ve even been asked during races “What do you do?” WHY? Why, when I’m 20 miles into a marathon, would a total stranger ask me a difficult and complicated question that would take nearly all my resources to answer if I was sitting down and had a lot of breath and time to think about it? I don’t understand.

I do all my training alone. Even when my husband and I train “together” what we actually do is get changed into kit, tell each other approximately where we’re going to go and how far and what time we expect to be back, and then arrange to meet back at the car or wherever. The only times we have actually run together (once during a race that was going wrong when he was trying to protect me from people talking to me, and occasionally for safety reasons in rough conditions) we do not chat. We just run. That’s the beauty of running for me – it’s a solitary sport, something I control myself, which rarely involves other people or communication, a far cry from the bullying and dread that is my abiding memory of having to play team sports at school. I used to enjoy swimming until the sensory overload and proximity to other people in swimming pools made it unbearable.

But I enjoy races. I like to see what’s going on. I love looking at other people’s shoes and kit and so on, I like to see the ways races are organised, I like the welcoming sight of the next aid station and the excitement of seeing what goodies they might have available (sitting eating porridge and lemon tarts and drinking soup after nearly 24 hours out on a trail, cold and wet with a busted leg, is a special and wonderful thing). I like having a goal to aim for, a medal to put round my neck saying “I achieved something that I never thought I would”, and I like to make training plans and work out which days I’m going to devote to a long run and which foods I’m going to try to carry and pushing my body to its absolute limit.

I could give up races and confine myself to training or “virtual” races, but that isn’t my aim. I’m going to have to get fitter in order to compensate for the people – where many folk find the race “atmosphere” enhances their performance, it impairs mine, so I’m going to have to train harder. I have a marathon booked for the start of April (along with a very expensive hotel room). I’m now wondering whether I might actually be able to do it. I certainly haven’t given up. I was also planning my first 100 mile race in May, which probably looks unlikely at this stage – although there is an option to drop down to the 24 hour challenge, which might be a possibility. I’m keeping my options open for the moment.

One thing is certain. My obsession with running has not abated during my enforced rest period. In fact, I’ve become somewhat interested in historical sprinting while sitting in front of the TV with the DVD of Chariots of Fire on repeat for the last month. I’m now reading avidly almost everything I can lay my eyes on about Harold Abrahams, Eric Liddell, and the 1924 Paris Olympics, finding out the real stories behind the film, my head filling with little snippets of knowledge, which I won’t start listing here because I haven’t finished the process yet and it would already be more than a blog post’s worth!

The only books I have read in the last few months that haven’t been about autism (or science/maths text books for “work” type reasons) have been running books – not only those about historical figures, but contemporary tales of marathons and trail running. I’ve struggled to read much at all because my concentration is so poor, but, aside from the autism section of my personal library, running books are the others that have made it to the top of the pile.

But this morning I actually managed to run again. I woke up feeling as though I could, and having spent several days thinking about it, I decided to see whether I could actually do it. The hardest parts were, as they usually are, getting out of the flat in the first place, and then returning to the flat at the end. We share a communal staircase with everyone in the block, and we both live in utter terror of meeting a neighbour on the stairs and having to chat about something unexpected. Going out is actually better than getting home because we can hear people in the corridor outside so we simply hide behind the front door and wait for them to go, but the possibility of getting into the block and being nearly home but then bumping into someone is an anxiety we live with every time we get home from anywhere – the relief and ability to breathe properly again when we finally close and lock the door behind us is massive.

The run itself was lovely. I was pleasantly surprised that I haven’t lost as much fitness as I might have imagined – maybe up to two hours a day rocking hard on the sofa and bashing myself violently against a cushion has been good cross training? One of the things that has also been better about this episode of burnout / mental illness than during previous episodes is that I went into it very physically fit. Previously I’ve not only been mentally very low, but I’ve also been very overweight (I used to be a person who struggled to climb stairs, even lifting my legs with my arms to go up steps at one stage) and extremely unfit and incapable of walking any distance at all. The physical fitness has helped no end – running has turned out to be a very good “special interest” to have acquired.

And this morning I finally started to increase my fitness again, just a tiny bit. I can’t imagine this will be a totally smooth ascent – I’m not pushing anything hard at the moment because I know that the only real cures for burnout are solitude and rest, but now I’ve been out once, remembered I can do it, and been through the familiar routine of putting kit on and so on, maybe it’ll be a little bit easier next time. And although I’ll never be a sprinter at the 1924 Olympics, I might manage to get good enough to run again in one of my favourite marathons in one of my favourite cities in April.

A very special friend of mine in a distant and beautiful part of the world wrote one of the books I am currently reading. It is called “Run Gently Out There”.

That is exactly what I hope to keep doing.