I often feel lucky that my tics are obvious. They go everywhere I go and are often the first thing people notice about me. The up-side of this is that I don’t ever really have to think about when to tell people about them. For those with less noticeable tics, if and when to tell others can be a more tricky decision.

While my tics might not be hidden, other aspects of my impairments definitely are and it’s these that I’m thinking about now – at 5am in the morning.

Every night for several months my evening routine has gone something like this:

Brush my teeth
Get In to bed
Shout at the lamp-post
Have a wee in my commode
Lie awake in pain
Take heavy-duty pain medication

Have a wee in my commode
Lie awake in pain
Eventually fall asleep

An hour or so later wake up feeling incredibly sick
Have a wee in my commode
Take an anti nausea tablet
And sit up and wait
Have a wee in my commode

About an hour later, feel less sick
Lie awake in pain
Maybe have another wee in my commode

It’s usually about 5am by this point and If I’m lucky I might then fall asleep. My support worker wakes me up a few hours later and I get washed and dressed and start my day.

My regularly disrupted nights are largely invisible to those I work with or hang out with. My tics have often made sleep tricky but at the moment it feels as though my body keeps layering on new ways to make resting relentlessly hard.

I’m trying to be open about what’s happening. I’m giving myself other opportunities to rest, re-arranging commitments as necessary.

This post is a first attempt at making this hidden impact visible. If I’m tired, grumpy or have to cancel at short notice this is why.

Lying awake for hours at a time can be very lonely. But thanks to audio books, WhatsApp, and the empathy of my friends, family and colleagues, I’m finding a way through – albeit very sleepily.