I’ve spent today at the seaside – Littlehampton to be precise. We took a group of children from work on end of summer trip. From the moment we arrived I knew we’d have a great day. The atmosphere was friendly, the staff at the small fairground were laidback, and there’s a lovely little beach, which I became a lot more closely acquainted with than I’d anticipated.…

I’ve been in my current job for over four years, and since the beginning I’ve had a support worker with me most of the time. To start with it was only twice a week, but when my ‘ticcing fits’ began in 2011 it became a full-time arrangement.…

Yesterday I wrote about how my tics have been changing – my body certainly has been doing some odd stuff recently. Today’s newcomer was a horrible screeching noise that I was making for most of the afternoon.

My phase of saying “I’m a baby” was annoying enough, but this high-pitched screech is a lot worse and I’m not even sure how I’m making it.…

This afternoon I let out a gasp of frustration and shouted, ‘Arms, stop being dicks!’ Moments later I apologised to them, but they’re really behaving badly at the moment.

The other day I mentioned my new elbowing-things tic: walls, tables, doors, the bath, other people.…

We got back from Shambala in the early hours of this morning, and I went straight to bed. Several hours later I woke up to a very rainy London, feeling exhausted. I’d been planning to go to Notting Hill Carnival and Eoin was coming to pick me up in the early afternoon.…

I had lunch with Bunny, Fran, Pete and a load of other people, sitting on the grass, bathed in sunshine, with the sound from the main stage of an incredible harp player drifting over hundreds of other people all having a lazy lunch too.…

The sun’s been out for most of the day and Shambala’s looking beautiful, with people in colourful costumes everywhere. I’m not doing a show today so I’m able to relax properly.

Captain Hotknives did have a show though, a solo set in the Wandering Word tent.…

I woke up in a warm tent and crawled out into the dewy day. King Russell and Fat Sister, camped opposite, were already up and about. They were making tea on a portable stove and I sat with them, surfacing slowly.…

At ten o’clock Fat Sister and King Russell arrived at the castle, soon followed by Bunny’s brother Pete. He’s one of my two main support workers at Shambala, with Eoin, the other half of the team, meeting us on site.

We had a tense time packing the small car with four people’s-worth of stuff, two tents and one all-terrain wheelchair.…

This’ll be a quick post – I’m in the middle of packing for the Shambala Festival. We leave tomorrow and I’m really excited about being back at one of my favourite places.

If you’re heading there yourself, catch me on stage with Captain Hotknives at the Social Club, on Friday at 5.00pm and on Sunday at 5.15pm.…