I mentioned yesterday that my ‘ticcing fits’ had been particularly intense in the last week. On Friday evening I had a fit in the bathroom – this is the worst room in the castle for this to happen because it’s quite small with lots of hard edges.…

Over the last decade, just existing as a Disabled Person has felt like a political act. Everything I do is directly affected by the political decisions of people who’ve never met me. There’s the social care support that means I can get washed and dressed in the morning, the Access to Work – support that’s enabled me to continue doing the job I love, the NHS-prescribed wheelchair that means I can move freely, and the medication and catheters that help me manage my pain and sleep at night.…

The other day, out of the blue, I got a call from a researcher asking if I’d be up for contributing to a radio segment on balancing work and Tourettes. I couldn’t do it because I was in rehearsals for ‘Not I’, which we are taking to New York in January.…

I’ve just got back from performing at the Brilliant Shambala Festival. Shambala’s got a very special place in my heart for several reasons – it’s the first place where I ever went on stage. It’s where I learnt the value of sharing my tics and experiences with other people, and it’s where I first felt the immense power of shared laughter.…

I’m on holiday in Spain with Jess Mabel Jones, AKA Chopin. We arrived today and we’ll be here for five days of relaxation, swimming and sun.

I decided to go on holiday at the last minute so I used accessible travel agent Enable Holidays because they’d helped Fran and me book our break last year.…

I spend very little time on my own. To live an independent, happy, safe, creative life I need other people’s support and a team of personal assistants and support workers help me at work, at home and overnight.

When my tics started to limit what I could do I was quite slow to realise I needed more help, and struggled on for ages, leading an increasingly restricted life.…

Over the last few years I’ve had increasing issues with pain and fatigue. I’ve come to appreciate how crucial rest and pacing can be, but that doesn’t mean I’m always good at putting them into practice.

Over the last two weeks a festival I curated has been in full swing at Battersea Arts Centre (BAC).…

At work today I had a ‘ticcing fit’. I lost all regular speech but my vocal tics continued. Much to my surprise and that of my colleagues a strange story emerged. Here’s my Tourettes-generated fable:

“There was a table and tortoise
The tortoise had a shell made of caves,
The table had a brain made of waves.…

While we were up in Inverness earlier this year Will got me into an expensive habit – bath bombs!

I had no idea how great they are – a relaxing, multi-sensory experience, albeit not a cheap one.

I’m having a bath most evenings now as a way of managing the pain in my back and pelvis, and the occasional bath bomb makes this even more relaxing.…

From the moment she could crawl my niece Bean has been obsessed with my wheelchair, crawling all over it and using the wheels to pull herself up.

From the very beginning Fat Sister and King Russell have been very clear with her that it’s not a toy and that she has to ask before she climbs in.…