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No Bench

The 8-year-old girl in the playground sat on the bench between lessons and zoned out. She watched, she dreamt, she observed. She heard the games, she heard the shouting, she refused to join in. She wasn’t rude, she wasn’t unhappy. She wanted to sit still and watch. Yesterday she had joined in. Tomorrow she would play a skipping game. It was just fine to have sitting time. She would do this often. When sitting in groups at tables in class she would look longingly over at the empty book corner and imagine herself alone there. She wrote a piece for her teacher about sitting quietly alone and her teacher read it to the class. It was okay to be her, to be like that.

But sometime after that it became not okay to be like that. It was the last time she felt proud to be her. It became necessary to be always in the game, never sitting it out. Life was never that way again.

And yet I am still that girl.

Sometimes I can’t deal with some moments. Some moments are hugely loaded with too much expectation, too much thinking, too based around the speed of others’ lives and thoughts. Sometimes a moment in time can send me into a spin and my heart races painfully. I panic, I long to call on help from somewhere somehow but there’s nothing and no one. And no bench. The breeze banging the door scares me. A voice outside terrifies me. All at once I know I can’t have things at my pace with my idea of peace and I am panicked. It’s so hard to explain to anyone how after a while I just want to mend in a place where time doesn’t matter. I feel especially aware of the different human constructs – supposedly designed to help society tick over and how they grate against my own natural rhythms. I find myself making the most of a snippet of time perhaps just a minute where nothing is going on and getting lost in it; reverting back to my time on the bench and my world of quiet observation. But slipping into my zone isn’t good when it’s not backed up by other things; if it’s not made safe.

I don’t know who’s outside making noises or why or how long they’ll be there. I don’t know who is at the door. I don’t know if I am safe to walk around the house from room to room. I don’t know if I am safe to let it be known I am in. I want my time out. I need it.

Like a migraine or a virus or a broken limb or maybe a Sunday morning after a hectic week, this is a call for less action, for time out, for healing. It’s not a constant but it’s necessary and it’s necessary that it is understood.

I need so much not to be *misunderstood* though, that I hide and run and ignore because the basic need for peace and space and simple no-expectation-just-for-now-please seems too difficult to explain without misunderstanding. This is about no one and no thing but a woman trying to fit herself into a world that can often feel like a constantly spinning roundabout and wanting the time to cope with the dizziness it brings.

It is simple: I am not a machine. But I have fired on all cylinders like a machine; I have to work myself like a machine in order to be part of this damn playground. It’s a big game with a grand set of rules and I play it well, I’ve got it all sussed, but I can’t keep doing that nonstop.

So I have moments. When I’m not playing anymore. But I don’t feel proud. I don’t have anyone telling me it’s beautiful and reading it to the class and making me feel okay.

Treading Water

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“It takes so much more strength to plough with all your effort through a difficult day and to keep going than it does to surge with little toil or exertion through a healthy day appearing brighter and more victorious,” I thought to myself today.

A difficult day is all about prioritising despite a struggle to think straight, to remain upright. It’s about finding the courage to choose what is best to do and say, about when to slog on, and when and how to stop and make time to recharge.
These are the battle days.
These are the finding the strong within me days.

The other days are simply about sailing on a tide with the wind in my favour.

What did you do today?
Today I walked through a storm and I kept walking.

Three cheers for anyone treading water. Getting through these days where achievements are invisible deserves the biggest medals of all.

Could Neurodiversity Be Making Me Ill?

I’ve suffered all my life with intermittent and tricky to explain (so I don’t bother explaining) not-quite-right-ness:

Strange pains and feeling like my blood is pooling in my legs when standing.

Sharp stomach pains and exhaustion.

Sporadic aching somewhere, somehow and not knowing why.

Dizziness.

Reactions to foods, and then no reaction to the same food another time.

Feeling ill when sitting too long.

Restless legs and trouble getting comfortable or sitting still.

Wide awake when I should be tired.

Floored by exhaustion when I should be energetic.

A strange feeling – with inner ear sound effects – that at the back of my head the top of my spine is made of popping candy and if I look up I will pass out.

Fuzzy, whooshy ears.

An inability to hold my arms in the air for too long when hanging out washing.

Bashing into things.

Tripping over my own feet

Trouble with balance and co-ordination.

Vertigo without heights.

 

But all this fluctuates and there is also:

Great physical strength.

Muscles which on certain days can power up the steepest of hills.

A tremendous sense of balance, and an ability to hold substantially awkward yoga positions.

A stretchy and flexible body.

The posture of a dancer or a horse rider.

When I am well I am very, very well. I can fit a lot into one day.

I can garden like a machine

I can cycle after months of not cycling and have power in my muscles.

I can walk for miles with ease.

I can run up and down stairs several times in one day and wash and dry many loads of washing, change beds, clean the kitchen, vacuum, carry heavy shopping.

I don’t feel weak or tired or over-exerted. I just feel well, and plan energetically for several days ahead based on this current exuberance.
And then a bad day follows the good days and my head feels 2 pounds heavier, like it’s putting strain on my neck. My eyeballs ache. Everything I’m supposed to do feels like a monumental climb with heavy legs and brain fog. My memory is poor, and I’m not even clear what my intentions are. My thoughts don’t flow. My energy is gone. And I’m floored again, ditching my plans, needing to lie down and yet not wanting to lie down. Weak, shaking, losing hours. Hands trembling. Frightened of food. Wondering who the idiot was who made so many plans for me that I can’t possibly carry out… Aching. Uncomfortable. Not quite right. Totally frustrated by an unpredictable body.

 

I’ve always been like this. Completely unable to plan anything long term and unable to know what I will be capable of. Nothing specific, nothing serious, nothing long-term enough to see a doctor (apart from the exhaustion but that lead nowhere). And I’ve mostly been fairly quiet about it. Until now. I’m starting to read more and more about how autism and Asperger’s can co-occur with hypermobility problems, connective tissue disorders and Ehlers Danlos Syndrome. It’s early days for me only a little over 2 years into my diagnosis, and I still struggle to find enough information about the physical effects of my condition.

But I can believe myself now – about my not-quite-right-ness. It’s still a bit of a mystery but it’s a very real one.

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