Last Month I wrote about how my new ‘ticcing fits’ had left me in a difficult situation. Lots of layers needed to be unpicked and sorted out to put me back in control. Now, nearly everything’s been organised. I’ve got a clear fit-management plan agreed with my doctors, increased support from social services, full-time support at work, and a bright red emergency bag that goes everywhere with me.…

For most people the Nissan Micra is just a cheap and cheerful small car. But for me it’s acquired a new meaning.

During a ticcing fit, when I was finding it difficult to speak, what came out when I was trying to say, “Goodnight” was “Nissan Micra,” and that’s been its meaning ever since.…

Yesterday I got a call from Access to Work, the government scheme that funds my support worker at work. The scheme is crucial to making it possible for me to keep doing my job and I’ve had a support worker two days a week pretty much since I started there.…

So far my recent ‘ticcing fits’ haven’t produced many funny moments, with the possible exception of the persistent repetition of an early ’80s tennis star’s name. Today though, while I was writhing around having my sixth ‘fit’, this poem came out all in one go:

“My brain is made of flour,
My brain is made of dust,
My brain is made of cotton buds and
Horticultural fuss.”

Once a month Leftwing Idiot DJs on a Sunday night at a pub in Peckham, near where we both live. He’s been doing it for years. The pub, The Gowlett Arms, celebrated its eighth birthday last night, with Leftwing Idiot DJing.…

One small thing that’s good about a ‘ticcing fit’ is that when it stops it leaves me completely still for a few moments. This is the only time when I feel completely motionless, before normal ticcing levels resume.

The fits are horrible, but these tiny experiences of being still are very precious.

My new care package from social services began at the start of this week. At the moment it includes having someone staying with me overnight. So far this has always been Leftwing Idiot because there isn’t room in his flat for anyone else to stay.…

A few weeks ago I went to see my friend Laura and her new baby, Ruby. Since that visit we’ve only been able to speak on the phone but now we’ve arranged to meet again, this Saturday for lunch. Fran will be going with me as my personal assistant, so Laura doesn’t have to worry about looking after me as well as Ruby.…

Leftwing Idiot has made a big change to a room at the office where we work. It’s not because he’s suddenly developed a passion for interior design, but because I need somewhere safe to go when I’m having a ‘ticcing fit’.…

Today my social worker presented my proposed individual budget and support plan to the panel that decides whether or not they will fund it. She also explained the impact the new ‘ticcing fits’ are having on my life.

The panel agreed the support plan I’d drawn up with help and advice from Southwark Disablement Association.…