Late the other night I was having a ‘ticcing fit’ on my way back to the castle. My body was completely locked up and I couldn’t move – my eyes were open but all I could see was a small patch of cloudless night sky.

Will went to get the ramp so he could get me smoothly up the step and into the safety of the castle. He had to leave me on the street for a minute while he did this.

I’m not usually a nervy person but I suddenly felt very vulnerable at not being able to look behind me to see who or what was there. It was a windy night and autumnal debris was blowing around everywhere. At one point I heard something approaching and had no idea what to expect – it turned out to be just a dog, trotting past.

I was only alone for a minute but it made be realise:

1) I‘m very reliant on being able to see things in order to make sense of them
2) The world makes very strange noises all the time if you listen carefully
3) Given that my fits mean I lose control of my body almost every day I must be extremely well supported because I’m not aware of my own vulnerability very often.

Soon Will’s arm scooped my head up and I felt us trundling through some leaves and up the ramp. The patch of sky I’d been able to see soon turned into a wall, then a ceiling, and eventually the familiar and reassuring sight of my bed.