And it got to the point when it was making everything worse, because here were loads of people saying that all I needed to do to be cured was do something like take a supplement, or change my diet, or do a special type of exercise. And when that didn’t work, it was like them saying that I wasn’t doing it right. I wasn’t trying hard enough. That I didn’t want to get better.

And it made me angry. It made us all angry.

So Dad decided to change the game into something less angry and more fun. Like borrowing the neighbours’ puppies. Or whatever he’s just made up and written down for next week. It’s just a game now and won’t make the slightest bit of difference to my health.

But there’s still a quiet moment as we cross something off the list. Something that makes us realize that perhaps we were hoping just a tiny bit that we’d stumbled across a miraculous cure – however silly it might have seemed a few moments before.

Dad dims the lights and Mum hands me my earplugs before helping Dad with the box.

‘You feeling okay?’ she asks before she leaves.

And I don’t need to lie this time. ‘I’m feeling wonderful.’

15

Alice

I wake up early and spend an hour underwater.

It’s my favourite documentary. I’ve seen this series a hundred times, but each watch reveals a new fish or flash of colour I’ve not noticed before.

That’s the thing about the ocean. It’s full of the best kind of surprises. And disappearing into this feels like sinking into a warm bath in which I can leave thoughts of speeding cars up on the surface, where they can’t hurt me or anyone else.

When I first became Ill, I watched this series again and again on a loop. I was too unwell to even sit up in bed then, so I spent all my spoons on opening my eyes underwater. And I’d try to remember the names of the different fish and their behaviour – everything that would one day help me escape this room and dive into marine biology, where my greatest concern would be whale numbers and the mating habits of sardines.

However few spoons I have now, it’s good to remember that I have so many more than I did back then. At least now I can move a little.

Morning physio = 4 spoons

Mum helps me stretch my arms and legs this way and that. And I have to push against her as I cycle an imaginary bike on the ceiling until my muscles collapse.

She picks up her handbag as I’m getting my breath back. ‘Are you going to be okay today, sweetheart?’

She asks me this question every day, like I might have a breakdown between her leaving for work and coming home for lunch.