I’d been really looking forward to going to an event this weekend with Keir, but then three things happened that made it a bad idea.

First, Keir injured his back and wasn’t able to come. My friend Jess, who hasn’t supported me before, was up for taking over, so Leftwing Idiot and Will talked her through my support needs and care plan – I’m confident we’d have been fine if everything else had gone OK.…

Yesterday got off to an upsetting start. My hands were stiff and unresponsive and I felt utterly worn out, both because I hadn’t slept much and because of the on-going uncertainty about my hands.

Poppy comforted me when I broke down in tears and then helped me get washed and dressed.…

When, how and why I’m writing this post feels horribly familiar. It’s 3.10am, I’m typing slowly with one extended finger, and I’m writing because I feel freaked out and alone.

About an hour ago I woke up and discovered my hands had contorted back into their pre-Botox dystonic positions.…

It’s generally frowned upon to go around taking pictures in public toilets, but yesterday when Leftwing Idiot and I were on our way to a meeting I came across this in the accessible toilet. So out came the phone for a quick photo opportunity:

I’ve talked before about how important it is to leave the red alarm cord untied so it can be used from ground level if someone falls from the toilet and gets into difficulty.…

Let’s not beat about the bush – there’s only one thing right now that can make January bearable and that’s my penultimate tic-enriched, World of the Zodiac horoscope!

Aquarians, you’ve waited patiently and stood by as almost all the other star signs have had their turn – you’ve been adrift for months without proper guidance.…

Thanks to Access to Work I spend quite a lot of time in minicabs each week getting to and from work. Mobility-wise this has made things much easier for me, but cabs come with their own distinct set of challenges. There’s the hateful talk radio that accompanies most journeys and the occasional dangerous driver as well.…

My arms are strong – probably from propelling my chair and because I do ‘reps’, hitting my chest hundreds of times a day.

People are often surprised at my strength, and a tight lid on a jar has rarely defeated me.…

Just as I was getting ready to go to bed last night I started to have a ‘ticcing fit’ in the kitchen. Will, who was my overnight support worker, noticed what was happening and was quick to start steering me to safety.…

You could say that pigs are like buses, you wait for ages and then three come along at once.

I’ve written before about my on going quest for piggies (rubber dog toys in the shape of a pig) and how I get one every time I have a full day without a ticcing fit.…

This morning while I was in the shower a new ticced song emerged:

“Legend of the Phoenix,
Legends of the Fall,
But Legend of the Sheepdog is the greatest of them all.”

I wasn’t acquainted with any of these legends, though the first two did sound a bit familiar.…