Lily’s doing my overnight support this evening – we’ve finished brushing our teeth and we’re getting ready for bed.

After doing my teeth she helped me transfer out of my wheelchair and onto the toilet. While I coaxed my wee out Lily brushed her own teeth.…

Almost exactly three years ago the children’s organisation Kids Company suddenly closed. A couple of days later I was introduced to Rachel who’d worked for them as an occupational therapist. She’d lost her job out of the blue and was looking for work she could do while she searched for a more permanent post.…

This is hard. Really fucking hard.

It’s 4.18am and I’m awake again.

I’m sore and tired and lonely. I feel sick and fed up.

For months and months, pain and nausea have been eroding my sleep, which was already fairly bad thanks to my tics.…

It wouldn’t take a very detailed reading of this blog to discover that I haven’t been very well for the last few months. I’ve been adjusting to life with chronic pain, nausea and fatigue. It doesn’t sound like fun, and there’ve definitely been times when it’s felt miserable and lonely.…

Over last few months I’ve spent much more time in bed than I would’ve liked. On-going issues with pain, nausea and fatigue mean I need to rest a lot.

Listening to audio books is something I’ve been doing a lot recently.…

I’ve been struggling to get comfy at night for the last few months and I’ve been resorting to precarious piles of pillows to help me reach the ever-elusive pain-free position.

Then, a couple of weeks ago after a particularly bad night I had a sudden realisation – I should call my Local Authority’s occupational therapy team.…

It’s 4.27am.
The castle is still.
I am not.
But I never am.

The room is gently lit by my bedside lamp, and now by the glow of my computer screen as I type.

The garden outside is lit by the lamp-post’s orange emanation.…

Edinburgh was amazing – but intense.

The workshop at Shakespeare’s Globe over the weekend with creatives with Tourettes was awesome – but tiring.

And my first session of Hydrotherapy yesterday felt really good – but required lots of concentration.

I’m extremely tired at the moment for lots of reasons.…

I’m sitting on a train, my laptop on my legs, the screen flickering with sunlight and passing reflections. Looking up occasionally, I’m catching glimpses of yellow fields with neat hedgerows, or small towns with a muddle of red roofs, chimneys, and lamp-posts.…

At some point in the last few months I must’ve read about a project by artist Raquel Meseguer. It’s funded by Unlimited so perhaps it was mentioned in an email or social media post. I can’t remember when this was, but the title of the project must have caught my attention and stuck in my thoughts because when I woke up this morning I was thinking about it.…