Reminders For Days When I Haven’t Slept

Last updated: November 2022

Typed into the notes section of my phone are a collection of messages that no one sees but me. I think of them as my AS first-aid kits. Some of the notes are getting quite old now, I’ve been using them for a while. The headings include:

Reminders for taking care of yourself
Things to try when the pain is bad

The one I looked back on today was headed Reminders for when you haven’t slept.

Like anyone with AS, I’ve experienced plenty of those days. They’re characterized by slowness and a cotton-wool brain that struggles with how to navigate the daylight hours. It’s what makes this particular note so helpful, without it I probably wouldn’t remember most of the practical lessons I’ve learned over time.

Postpone or cancel anything you can

The first one is important. Learning to say no without guilt was something I’ve had to embrace along with my diagnosis. Sometimes I reschedule my plans, if it’s not important I just let it go. Almost always, things aren’t as urgent as they appear and it works out fine.

Rest or take a nap

Going to bed during the day is something I have always fought. In spite of all logic it feels lazy to me and I really struggle to justify lying down and closing my eyes, no matter how exhausted I find myself. On the occasions I do, it makes a difference to everything. I should probably mark this one in bold.

Increase your margin for error

This is my reminder that when I’m tired, I’m not as mentally sharp as I could be. If I’m driving or putting appointments in my calendar or performing any task that requires concentration I need to take it slow and triple check each decision. Might I have learned this lesson the hard way through experience? You guessed it.

Keep good habits in place

When I’m tired I crave starchy carbs, sugar and easy processed food. They might satisfy my tastebuds but unfortunately these are the foods that also worsen my inflammation and don’t do me any favors in the long run. I also tend to overdo the coffee on a tired day and, being someone who is naturally sensitive to caffeine, this creates more problems than it solves. And although this reminder doesn’t always guarantee better choices for me, it does keep them somewhat in check.

This too shall pass

It’s easy for me to get caught up in negative thinking when I’m sleep deprived. Tired immediately feels like the permanent new normal and I start catastrophizing about how hard my life is now. I forget that sometimes (though not always) a bad night is followed by a good night. For me at least, my flares don’t last forever.

Try the things that helped last time

Sometimes adding some over the counter paracetamol to my NSAIDs and doing some stretches before bed will be enough to help me sleep through the night. Or sometimes a hot bath before bed does the trick. When I’m lost in a tired fog I can easily forget that I have some good tools in my back pocket, and this prompts me to recall them.

My favorite reminder is the final one in the list, which simply reads as follows:
Be kind to yourself, you’re doing the best you can.

What do you find helpful to get you through a day clouded with exhaustion?

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