It’s been a beautifully sunny Sunday. I’ve been hanging out with Erik, who’s a friend and the part of the Touretteshero team.

Fat Sister, King Russell and their little Squidge came round for a couple of hours, while Leftwing Idiot was sunbathing in the garden.

It was blissfully relaxed. I played with the Squidge and introduced her to the joys of banana ice cream. She went quickly from poking her tongue out and tentatively tasting it to grabbing the spoon and shovelling it in is fast as she could!

It was far from strenuous, but as I moved around after her, Leftwing Idiot warned me about overdoing it.

I could feel that I was doing too much but desperately wanted to play with my niece, and pushed on regardless. One of my big worries about chronic pain is that as Squidge grows up this is all she’ll remember about me.

In the back of my mind I was asking myself, ‘If you can’t manage to keep up when she’s a year old, how will you manage when she’s five?’

After a couple of hours of hanging out, my royal family left and I went to bed for the rest of the day.

This cycle of boom and bust isn’t sustainable, so once again I’ll have to adapt and find new ways to play. I know I can do this as it’s not the first time I’ve had to reimagine how I look after children.

When my mobility deteriorated and I started using a wheelchair I was working for three busy play projects in south London. At that point I’d already been a playworker for over a decade, and I had established ways of doing things that I was initially reluctant to change. But as soon as I let go of these old habits and started finding new ways to have fun with my body as it was, everything got much easier.

Thinking about this has made me feel excited about all the new ways I’ll be finding to have fun with the baby.

Once again writing’s helped me move from gloomy to glad.