Today is my twelfth ‘Fitiversary’ – twelve years ago today I woke up moving about frantically and uncontrollably. I’d lost voluntary speech and was experiencing painful dystonic tics which twisted my body. These episodes had been happening on and off for a while and I’d initially referred to them as the ‘dying fish’, but twelve years ago they became a much more regular part of my life.…

As someone who requires skilled support 24 hours a day I’m never really on my own – but if I am it’s because I’ve failed. Failed, that is, to meet my most basic need, the continuous presence of someone who can keep me safe, someone who can administer emergency medication if necessary, who can prevent friction burns from my repetitive movements, or who can turn me over so I can breathe.…

I’m tired, in a deep kind of way. On its own this might not seem noteworthy because I experience fatigue and energy-related barriers every day. But this tiredness is different because although my body is physically drained, my mind, heart and spirit are energised in new and joyful ways.…

I’ve been unwell for over a week with a cold or some other miscellaneous virus I picked up from a colleague. While I’ve felt pretty ropey the illness itself has been nothing out of the ordinary, but it’s dragged on, and whenever I’m unwell, particularly with any sort of infection, the seizure-like intensifications of my tics increase dramatically.…

We got back yesterday after almost three months of touring our new show Burnt Out In Biscuit Land (BOBL). When we set out for the first stop back in April I had no idea how audiences would respond to the show.…

Yesterday we arrived in Torquay for stop six of our tour of eight UK towns and cities with our new show Burnt Out In Biscuit Land. We’ve been to Bridlington, Gloucester, Bradford, Margate and, most recently, Peterborough. After Torquay we head to Stoke-On-Trent and lastly, Wigan.…

I was looking after my niece Bean and nephew Sausage earlier today. While Sausage had a nap, Bean focused on making a Bee-bulance – an ambulance for bees. They’d arrived late at the castle for a play date in part because Bean had stopped twice to administer first aid to bees.…

Last year I led a creative project called Invisible Touch. It explored the relationship between physical touch and the experience of giving and receiving care. As part of this I interviewed other disabled people who had experience of care, and you can find them here.…

I can’t believe it’s been two years since we launched our Practical Intervention Fund, which provides small items related to wellbeing and relaxation to deaf, disabled and neurodivergent people of all ages. We’ve run two rounds of the fund so far, with each receiving lots of interest.…

We’re back in London after the first week of touring Burnt Out In Biscuit Land. We came back through central London which is already heaving with flags for the coronation next week.

I read an article about the pledge of allegiance that will form part of the coronation ceremony.…