Today started earlier than I’d have liked. It was 4:00am when I woke up having a ‘ticcing fit’. I was face down, in a sleeping bag, unable to move or make much noise. All I could manage was a weird little bark and I was fairly sure this wouldn’t be enough to wake Lottie, but fortunately after a few minutes she came to my rescue. She carefully disentangled me from my sleeping bag and got me into a more comfortable position for breathing. The fit finished and we both went back to sleep.

We woke up properly a few hours later and slowly started getting ourselves together for the day. Will fired up the camping stove and we had a delicious breakfast of egg and bacon butties and tea.

Captain Hotknives and I are doing two shows a day throughout the Festival. We did this last year too, but then they were one after the other. This year we’d initially been given set times that were five hours apart and I was worried that I wouldn’t be able to manage.

In our show I let my tics go wild and I can’t just turn this off when we come off stage. It takes me a while to calm down, and it’s exhausting. The idea of getting into costume, getting hyped up, calming down, and then doing it all over again felt like a recipe for disaster. I’d emailed the organisers to see if my schedule could be changed, but it looked as if it was too late. So it was a huge relief, just as we were getting ready to do our first show, to be told they’d shifted things around for us.

It made me realise there’s more to my access arrangements than just ramps and toilets – I need to think carefully about the number of performances too.

As a result of the changed timing we had more free time than we’d anticipated so we went to explore, watch shows, and catch up with some friends. After lunch we headed to the Sensation Seekers stage for our first performance. There was a sign up backstage advising performers about what language was OK to use before 9:00pm and what wasn’t. I laughed when I saw ‘Biscuit’ among the acceptable words.

Our show got off to a good start and it felt lovely to be back on stage at Glastonbury. But midway through the weather broke and the rain flooded down. We started singing a song that had first appeared at last year’s Festival:

“Raindrops are dyspraxic because they fall down,
I think raindrops are dyspraxic because they fall down,
Raindrops are dyspraxic
Raindrops are dyspraxic
Raindrops are dyspraxic because they keep on falling down.”

This year Captain Hotknives added a new verse that went something along the lines of:

I think raindrops have labyrinthitis because they fall down,
I think raindrops have labyrinthitis because they fall down,
I think raindrops have labyrinthitis complicating their vestibular system
They really just need to go and have a lie-down.

The water pooled around the monitors so the crew swept the stage and we carried on. Captain Hotknives kept mentioning the possibility of us getting electrocuted, but we made it through the set with the hardy audience staying with us to the end.

Thankfully the rain didn’t last long and within a few hours the sun was back out.

By the afternoon Olive had arrived with Leftwing Idiot and Poppy. Olive came to hang out with Fran and me for a bit while we waited for Fat Sister. Olive had supported me at the Festival last year and got back into her role very quickly. When she arrived she absolutely insisted that she would not be responsible for navigating our way round the site and she wouldn’t be in charge of the map. But straight away she was rooting around in my bag for the ‘special access map’.

We watched Florence and the Machine on the Pyramid stage from one of two wonderful viewing platforms. These make sure that disabled festival-goers have a good view of what’s happening on stage. Fat Sister, who’d come straight from work, came and joined us.

Photo: Lottie Hughes

We went to the Blues area and had a brilliant dance to Mungos Hi Fi. We went on dancing later in the Cave with Channel One. I’d been a bit unsure about going into the Cave because I wasn’t sure how accessible it was and because there was a massive queue. But the security team were really helpful, reassuring me it was fine and letting me go straight in.

I’ve written a number of times about the joy I get from a good dance. I think I now appreciate it even more than I did when my mobility was better. My body’s often a mass of conflicting movements so feeling the sensation of bass in my body and tiring myself out with deliberate dance moves rather than random tics feels like an incredible release.

After a night of dancing we’ve headed back to the tent for a sleep.