Yesterday I wrote about how frightened and alone I’d felt when I got stuck on my own, on the living room floor, having a ‘ticcing fit’.

In the early hours of this morning I had another fit, which started while I was asleep.…

For a few moments earlier this evening I felt desperately alone and extremely vulnerable. It’s unusual for me to ever be on my own because I almost always have someone with me, but a mix-up this evening led to a gap in my care.…

Leftwing Idiot called earlier and said, ‘I’ve got a present you’d like.’ This didn’t make sense for a moment but he explained ‘My dad gave me a present and as soon as I saw it I thought you should have it instead of me.’…

The other day I was pottering around the castle sorting out a few things, Leftwing Idiot was working on his computer and Fran was making us some food when, out of nowhere, a new series of sung tics rolled out to a whimsical unidentified tune.…

I was on my own at the castle for a few hours this evening with Leftwing Idiot on call if I needed him – which I did.

I was sitting in the living room when I started to have a ‘ticcing fit’.…

Last night Fat Sister, King Russell and I headed out to a Mexican restaurant for a friend’s birthday. Though I was joining them at the last minute, Fat Sister assured me she’d checked out the wheelchair access for the place and that it was all on one level.…

This post is about SWANs – not a long-necked member of the wildfowl family – although that might’ve been the natural assumption, given my penguin tirade the other day.

The SWAN I’ve been thinking about stands for Syndrome Without A Name, and for many disabled children and their families this is the only name they have for their disability.…

Leftwing Idiot’s been laughing on and off all afternoon. But it’s not my tics that are making him chuckle – it’s a collection of smart metal signs unearthed by some of the children.

They found them in an old box of Christmas decorations they’d got out to use for making cards with.…

As soon as Leftwing Idiot arrived at the castle this morning so we could travel into work together, my tics announced, “Poppy woke me up at 6am to talk about penguins.”

This of course wasn’t strictly true. What actually happened was that I had a ‘ticcing fit’ and Poppy, who was providing my overnight support, came to help me.…

Leftwing Idiot helped me down the stairs from his flat yesterday morning. To do this, my right arm goes under his and round his middle and he puts his left arm round my middle.

As we came down the stairs I was holding onto the banister with my left hand, while my right hand, round Leftwing Idiot, went on ticcing.…