It’s a Sunday evening, I’m at home in bed, reflecting on a week that’s taken unexpected turn. Because these developments have implications for the weeks ahead, I’m writing this as an update for my friends, colleagues and collaborators, so you know what’s going on, and why things might need to shift at short notice.

I’ve had a pacemaker for around 17 years and other than a battery change in 2017 it’s been pretty smooth going. Over the last couple of weeks though, I’ve been dealing with some new pain around my pacemaker and in my left shoulder. After giving it time to resolve on its own, I knew I needed to do something about it, so I spent the end of last week in and out of St Thomas’s Hospital’s Emergency Department while they worked out what was going on.

Hospital procedures are always complicated by my tics, particularly anything that requires stillness – x-rays, scans, blood tests etc. This means appointments can take longer to organise or that I need to take extra medication to make me still enough. Trina and Leftwing Idiot advocated for me brilliantly and I got to see a side Fat Sister, who’s a consultant at a different London hospital, that I don’t often see.

The upshot of all this, is that there’s an issue with the main vein that my pacemaker leads go into and from what I understand this is putting extra pressure on the surrounding veins. The good news is my pacemaker is working fine and there are no signs of infection. For now, they’ve given me some extra pain relief and my medical team are going to make a plan.

I don’t know exactly what that plan will be but it’s likely I’ll need to go to more appointments, have additional tests or take new medication. The new pain is also quite wearing and I’m feeling more tired than usual. I feel lucky to work for Touretteshero which as a disabled-led organisation is used managing change and prioritising health and wellbeing. I’m keen to keep working but also know that I have to pace myself, be realistic and stop if I need to.

It’s really great that our team has grown recently so we’ve got lots of people working to keep projects on track but this is a gentle heads up in case we need to do anything differently.

I’d like to also acknowledge that the staff at St Thomas’s were amazing, kind, flexible and very thoughtful around Neurodiversity. I felt really well cared for and the staff went out of their way to make sure I was as comfortable as possible. I haven’t always had positive experiences in medical settings, so these experiences felt really significant to me.

I’m going to put the computer down now and keep taking it easy, a resting schedule that’s being very closely enforced by the cat. Whose current obsession is trying to sleep on my pacemaker site. When I explained this to Fat Sister earlier and commented on his incredible animal intuition she pointed out, that as my veins were closer to the surface it was probably warmer than normal. So maybe some classic feline self-interest mixed in with his caring instincts.

We’ll keep people posted as necessary but for now I’ll sign off with a photo of my furriest nurse.