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.