This is a simple post. In the last seven months I’ve had over 1200 ‘ticcing fits’ an average of six in every 24 hour period. Today I had just one.

Fingers crossed there will be more days like this.

Losing the ability to speak has been a regular feature of my ‘ticcing fits’ since they suddenly intensified last October. This evening Leftwing Idiot and I were out and about when I had a fit. It was mild and relatively easy to manage because I was in my wheelchair, but as usual I wasn’t able to talk.…

Towards the end of a ‘ticcing fit’ earlier on, the conversation around me turned to my well-established love of making animal noises.

Since Leftwing Idiot and I became friends twelve years ago, he’s been fascinated by what happens when he asks, ‘What noise do [insert animal name] make?’…

This afternoon we had some high profile visitors at work, a group of people from BBC Children in Need who help fund our go kart project. They came to meet the young people and see the work they help us do.…

During a ‘ticcing fit’ my body often contorts and gets stuck in strange positions. Over the last few weeks a new tic has snuck in which involves my jaw opening as wide as it’ll go. It’s painful and difficult to deal with, and though it might look a bit comical, when the muscles are extended and tense it hurts right along my jaw line and into my ear and neck.…

There are a few words I find inexplicably funny, like ‘penguins’, ‘sand’ and more recently ‘salad.’ They’re all words I’ve started to find hilarious after I’ve taken my emergency medication for particularly bad ‘ticcing fits’. But my amusement doesn’t wear off with the drug, and whenever I hear or say these words again, I laugh uncontrollably.…

My flatmate Poppy is just coming to the end of her degree in costume design.

She’s in the final few weeks of her course and has been busy making some amazing outfits. As a result the castle has been awash with dressmaking pins.…

I have a lovely new carer, Florence, who’s been helping me at home for the last couple of weeks. She’s calm, kind and most importantly for a carer, she actually cares.

Florence has helped me out a few times when I’ve been having a ‘ticcing fit’ but hadn’t encountered what my friends call the lying zone before today.…

It’s very rare that I write a whole post on my phone, in bed. This is only the second time I’ve done it at 1:00am.

As I mentioned yesterday I’ve been ill and so has Leftwing Idiot, who provides a lot of my care.…

Superhero or not, I still catch a cold every so often and for the last few days I’ve been out of action with a stinker. I’ve written before about how being under the weather affects my ‘ticcing fits’ –basically, they get much worse.…