Also Remember

Sometimes I am too tired
And cannot always
Summon up
The energy
To release
The tension
By moving

Sometimes it doesn’t quite work
And the safe strategies
Will tip over
Into less safe ones
And I want to hit my legs
And tear my skin
Because I need more
Than movement alone
And safe bashing
Can provide.

But I must also remember
I have a heavy weighted blanket.
Over eight kilogrammes
Of reassuring pressure
That I can place over me

And when I return
From the third day out in a week
Desperate to feel better

I can crawl under my blanket
And feel calmer
And better
Anxiety subsiding
Nausea retreating
The urge to hit myself

And I am still
And calm


Must Remember

The anxiety

The feelings

Wishing there was some magic solution.

How do I stop feeling
So terribly out of balance,
So terribly wrong.

So I listen
Really listen
To my body

And the answer

I know it
As soon as I just give in,
Forget what might appear right
To the outside world.

So I bash myself against the sofa
All of me
Over and over and over

Not playing with a toy
Not gently rocking
But stimming

Just giving in
To what feels right

The sort of thing
I don’t see discussed often.

Beating my back and head against the cushions

It is beautiful

And I start to feel better,
More right.

Finally relaxing.

I really must remember this.

It is important.

Part of my life.

And I am still startled
By how strong the need
And how powerful the effect

And just how natural it feels.

Totally right.

One day I will try to study it
And explain

But for now
I simply do what feels right
What is evidently hardwired in to me somehow

Because I can
And it makes me feel

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!

The Magic Spot

You know those hanging sculptures?

The ones in spacious modern art galleries?

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

When you walk in to the gallery

All you see is a load of stuff,

Suspended on a bunch of wires.

Nothing makes any sense

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

But you walk around the room.

And you can see that the stuff is actually somewhat organised

And forms a picture.

Of sorts.

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

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

Then somebody says something to you,

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

You place your feet over the outlines.

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

Except that it is no longer just junk.

It is no longer a picture out of focus.

It is clear.

And beautiful.

And it makes sense.

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

Because you are viewing it from the correct spot.

And it’s a beautiful piece of art.

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

And then you stand on that magic spot.

And you finally see the picture in focus.

And your entire life makes sense.

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

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

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

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

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

And maybe some never will.

But now you understand.

Your life makes sense.

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

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

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

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

You bend down to take a closer look.

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

They simply say:

You are autistic.

Out Walking

It is bright
Even through my darkest sunglasses.
Blossom scattered on the ground.
Curtains in windows uneven.
The chipped edges of the paving.
And leaves, each one defined.

It is loud
Even in the quiet part of the day.
Birds screaming a constant barrage of noise.
My handbag strap squeaking.
Construction site out of view but loud.
Car engines approach from either side.

It is strong
Even though I’m used to smells and feels.
Something flowering, overpowering scent.
Tobacco smoke from someone unseen.
Trouser seams rubbing on my legs.
The wind, assaulting my skin all over.

It is scary
Even though I am not in danger.
My heart pounds, but not from exercise.
A man with a dog, I’m instantly nervous.
I focus on walking, moving forward.
Until I reach the safety of home again.

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.


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.


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?