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.

I haven’t slept through the night for as long as I can remember, and spending hours awake, alone and in pain, are really taking their toll. It’s not so much the physical effect on my energy that I’m finding hardest, but rather that I can feel my emotional resilience crumbling.

Feeling ill at any time is obviously rubbish, but there’s something about the night that makes everything more intense.

Night-times are hard because, with most people asleep, there’s no sense of companionship or solidarity.

I’m dreading bedtime because this pattern’s become so relentless.

I’ve had plenty of time to think about what might make this situation easier, but there doesn’t seem to be a straightforward answer. My doctor’s given me some medication to manage my pain and sickness, but I’m not sure there’s much he can prescribe for the crushing isolation of the night.

In the moments since I started dictating this post onto my phone I’ve decided to make three promises to myself:

1. To take pain medication when I need it, straightaway. No excuses.
2. To press the buzzer for my overnight support worker as many times as I need without worrying about what they might want. There’s no good time to be woken up!
3. To be open with people about how I’m feeling so that I can give and receive solidarity and support.

As I read back over this I’m reminded of poet Kate Tempest’s new album Let Them Eat Chaos. Weirdly, this long poem is set at 4.18am and follows seven different people who are awake in one street.

As I lie here and try to settle my mind and body I think of all the people awake at this moment, across the city, across the country, and across the world. I feel less alone and extremely lucky that for me this moment of wakefulness is happening in a warm bed, with support nearby. And in the peaceful street outside my window the lamp-post is on lookout:

“Lamp-post, shall we form a lightheaded support group?”
“The lamp-post is smiling sarcastically again.”
“Lamp-post, stop nattering, I’m trying to sleep.”

To everyone awake or lonely for whatever reason I send my love and solidarity.