I woke suddenly at 5.15 this morning and it wasn’t from the rain on the tent or the noise of Festival revellers outside. It was a text from Fat Sister, who’s joining us at Glastonbury later today. Her text said simply: “It’s all fucked!”

I didn’t need any context to know what this meant – it meant that the UK had voted to leave the European Union. I felt gutted, intensely sad and shocked. I resisted the urge to look at the news, choosing instead to try and go back to sleep, but when my medication alarm went off forty-five minutes later I checked and my worst fears were confirmed.

By breakfast time David Cameron had said he was going to resign, our currency was in free-fall and some Labour MPs seemed to be seizing this moment to stage a coup against Jeremy Corbyn.

I’m sure I’ll write more about my feelings and thoughts on the Referendum result in the next few days, but for now it goes without saying that this was a strange and traumatic start to our first morning at Glastonbury.

We headed to the Theatre and Circus greenroom for breakfast and were quickly joined by Captain Hotknives. We’re performing together later this afternoon and then again tomorrow and on Sunday at The Glade. While we ate we worked on our set.

To say we wrote new songs to reflect the Referendum disaster is a bit grand, but it seemed important to express our sadness about what’d happened in our own neurologically unique way. We often describe what we do as a ‘master class in spontaneity’ and what this means in practice is that we take inspiration from my tics and from what’s happening around us to create new songs and stories. So by the time we’d eaten we had at least three new Europe-themed tunes. And just a few hours later we were on stage leading our audience in a chorus of:

“UKIP what have you done? You’ve spoilt our continental fun.
And now we can’t get any decent cheeses to eat.”

After the show we went back to our tent to move things around and make sure everything was as accessible as possible. Muddy festivals are hard on everyone but as a wheelchair user I feel the added challenge particularly intensely. One of the big issues for me was getting to the toilet.

There were accessible loos positioned across the site but all of the ones I visited were made inaccessible by the swamp of churned-up mud outside them. This made every wee particularly hazardous because I had to transfer out of my chair and try and walk with support into the loo. Sometimes this worked but sometimes it went badly wrong – on one occasion I fell and got covered from head to foot in runny mud.

I quickly realised that I needed to adjust my expectations about how long everything would take.

By the evening I’d still not left the backstage area. I was keen to remedy this, and to see the amazing grime MC – Stormzy. Fran, Fat Sister, Laura, Innes and I set off to the Silver Haynes area for a dance. There we met up with Leftwing Idiot, Poppy and a whole load of other friends.

Stormzy’s from South London, and when we were touring the UK with Backstage in Biscuit Land back in March, every time we drove back into London we’d celebrate by playing Stormzy tunes on the stereo. They became a crucial part of our tour soundtrack and a marker that we were home. His set was amazing and as I danced I felt some of the day’s sadness fade.

After another quick dance in one of my favourite Glastonbury areas – The Blues – we headed back in the direction of our tent. Glastonbury’s a festival on a huge scale and crossing the site takes ages at the best of times, but with this year’s muddy conditions it’s particularly slow and exhausting.

Lots of people helped us out, though – here are just a few of my Friday Glastonbury heroes:

• The three boys carrying woodchip back to their camp who stopped and put it in front of the accessible toilet to make it less muddy for me.
• The drummer from the band Formation who gave us one of his old drumsticks when we needed something to push the mud out from the back wheel of my chair, which was so clogged it’d stopped turning!
• The group who helped us up a slippery slope but, crucially, asked about and listened to what we needed before jumping in.

To everyone else who’s kept me moving so far – thank you!