In January I wrote with shock and deep sadness about the loss of our colleague David to COVID-19. I shared some of the many things I’d learned from him, a man whose energy and passion were immense and whose commitment to improving the lives of children and young people was unwavering.…

It’s Friday evening and I’m exhausted and sad. Ines, my support worker, is changing my sheets in the other room, Gogglebox is on in the background, and I’m fighting back tears, and have been all afternoon and evening.

As a warning to you, I’m not feeling very proud of, or positive about my neurodiversity at the moment, and I’m feeling annoyed and worn out by my own behaviour.…

Here at Touretteshero we have what we call the ‘Ideas Shelf’. It’s an imaginary shelf and we put ideas for future projects, events or services on it. These ideas are then ready to be taken off the shelf when the right opportunity, partner or funder comes along.…

Three years ago today, on the morning of Wednesday 14th June 2017, the country woke to the news of a devastating fire at Grenfell Tower. Later we would learn that 72 people, 18 of them children, had lost their lives. I’ll be marking the anniversary of this tragedy by filling the castle windows with green light in solidarity with Grenfell United and all those affected by the fire.…

Over the last couple of days I’ve felt a lingering sadness. This isn’t surprising given that we’re living through a global pandemic, but there was a bit more to it than that – I just couldn’t quite work out what it was.…

This is a post I need to write but you might not need to read – I’m going to discuss some of the complicated, distressing parts of having Tourettes, and if reading it feels too much at any point please stop or take a break.…

I feel really sad.
A deep churning sadness.
A very familiar and crushing mix of shame, frustration and exhaustion.

It’s a mix of feelings I can’t remember ever not being present. Experience tells me these feelings won’t last with the intensity I’m feeling them right now, but neither will they ever fully go away.…

I realised in the cab on the way back from Heathrow that there aren’t many flights that I’ve done without Leftwing Idiot. On most journeys I’ve had a dedicated support worker too, but Leftwing Idiot’s almost always been there calmly organising and advocating for me.…

A few weeks ago I wrote about my tricky appointment with the local continence nurse. I was there to get a prescription for pads to help me manage some of the issues I’ve been having with my bladder. Towards the end of that post, and despite the challenges, I wrote “In the end I got what I needed.”…

My neuro urology appointment (a specialism within medicine that looks after how the bladder and brain work together) got off to a very wet start this morning. But the liquid being spilt wasn’t wee, it was tears.

I’ve been having increasing issues with my bladder over the last year or so and they’ve been having a really disruptive effect on my sleep.…