A year ago today the country woke up to the news of the shocking fire at Grenfell Tower.

In the post I wrote later that day I described how, even from those very early pictures and news reports, I felt sure that this was a preventable tragedy.…

We’ve been in Zurich for the last few days. The flight back yesterday morning was only an hour and twenty minutes. But for a wheelchair user flying is nearly always stressful and yesterday’s flight was no exception.

For the last couple of years I’ve been experiencing chronic pain and fatigue, and more recently loads of issues with my bladder as well, which mean I need to go to the toilet very often and don’t get much warning.…

A couple of days ago I was waiting to pick up some medication in a busy hospital pharmacy. There was a boy aged about nine also waiting. I pulled up in my wheelchair and waited nearby.

The boy couldn’t take his eyes off me.…

The Internet’s full of distractions, from cute cat videos to nostalgic quizzes.

Last night I saw an alternative pain scale that made me laugh – someone had used works of art to replace the usual 1-10 of pain.

I liked this but despite being an artist myself I couldn’t fully relate to all the images, so I created my own alternative version… with stars of ‘80s and ‘90s cartoons!…

Earlier this evening Leftwing Idiot and I were chatting on the phone when he said something that made me draw breath. For a moment it felt like my brain stalled, jarred by a sad truth in an ordinary conversation.

We were talking about my pain and sleep, and how much easier it was to manage these when we were in Portland where cannabis was legal.…

Last year Leftwing Idiot bought me some lavender spray to help me sleep.

My overnight support workers often spray some on my bed as I settle down to sleep and I often refer to them then as my Lavender Fairies.

Last night was a bad night for me – kept awake by pain I struggled to sleep.…

I have an unusual and fluctuating relationship with the lamp-post I can see from my bedroom window.

I scold, nag and insult it on most nights.
But I also invite it into my bed when it’s cold.

I deride all lamp-posts at every opportunity.…

It’s been a tough day, not because anything dramatic has happened but simply because I’ve been feeling lousy.

This isn’t a one off– I’ve been struggling with chronic pain, nausea and fatigue for months.

I’ve got used to feeling ill, to waking up overwhelmed by nausea, to constant nagging pain in my back and hips, and to fatigue muddling my thoughts.…

It’s been a beautifully sunny Sunday. I’ve been hanging out with Erik, who’s a friend and the part of the Touretteshero team.

Fat Sister, King Russell and their little Squidge came round for a couple of hours, while Leftwing Idiot was sunbathing in the garden.…

I studied drawing at art college and really got into mapping the world around me in various ways. I was particularly interested in how objects, people and spaces connect.

I’ve been in a lot of pain today so I’ve stayed in bed and taken it very easy.…