A New Normal

So, what I’ve learned about my illness in the last two months is that it exists in a symbiotic relationship with me. Which follows, since the problem is inextricably linked to my immune system. Anything that impacts me could either cause or prevent a flare-up.

And since flare-ups are BAD, figuring out how to prevent them is kind of a priority right now.

The simple answer is that stress is the enemy. But what kind of stress is the more interesting question. Because I worked the convention at full speed, starting at 10am and ending around 2am, on my feet, running around, handling some really difficult stuff, and didn’t have so much as an instant of pain afterwards. So, even though I was physically very drained and exhausted, clearly that level of engagement wasn’t a trigger.

But then something happened at work right in the start of September, and while it was just a work thing, it took an emotional toll on me. I didn’t sleep well for several nights in a row and my anxiety was a constant churn in my gut. It all worked out okay in the end, and it helped me recognize some things I had been letting go that I should have dealt with more directly. But within a few days of the start of it, I got symptoms. And for the next two weeks, there I was in a flare-up.

It’s not like it used to be. Before, my hands would cramp up and I could barely hold a cup, let alone a fork or my phone. And everything would hurt. Not just moving — putting my hand in my lap instead of on a pillow would cause a shooting pain, too. But even when the pain went away, I still had other symptoms, including mono-like exhaustion. I needed naps every day, and couldn’t even sit up straight for more than an hour at a time.

So the first answer in the search for how to enhance my self-care for my current weird situation is to manage that stress. And I think it starts with sleep. If I sleep well most nights, I think I keep myself from a cycle of making my body work harder while my emotions are flooding it with stress.

Now, I’m the sort of person who gets a thought in my head and spirals with it. Had a bad interaction with a friend? I might spend a week thinking about it over and over after I settle into bed. Thinking about a difficult work project? I start to solve the problems when I should be counting sheep. I have a gift for finding ways to keep myself awake and fretting for hours and hours on a nightly basis.

I can’t do that anymore. Not and stay healthy.

I needed a way to chill out before bed. And sometimes reading helps, particularly when sleep is elusive by no fault of my overactive, hypercritical brain. I’ve always been at least a bit of an insomniac, and I’m a night owl as well. Sometimes my circadian rhythm just decides taht bedtime is 4am. But it’s different to be reading a delightful story because my body thinks it’s still party time than lying awake worrying and stressing about something when I’m tired and able to sleep.

So I have settled into a habit of writing late in the evening. 9pm or 10pm I get started (if I didn’t have the time and inclination to begin earlier) and I try to write 1,000 or 2,000 words. It forces me to put aside everything else — my day, my job, social stuff, the convention or choir — and just be in the moment with a story. It has the mindfulness of meditation, but it’s also feeding me something positive instead of just breathing everything quiet and hoping it stays that way.

And it’s working.

Once I got through the last flare-up, I’ve been sleeping particularly well. Writing every night means I fall into bed (maybe read a little) and think about the next scene to write, or the project when I finish the MCU AU. It means I climb into bed feeling accomplished and proud of myself, with more to look forward to tomorrow. And if there are work things, they’re much easier to put aside because I have something much better in the forefront of my brain.

As an added bonus, I’m putting down a ton of words every day at a time of day that isn’t usually useful for things like laundry or dishes. I’m not taking away from watching stuff with Sarah or others who hang out sometimes. I’m not cutting into my own downtime. I’m just making better use of the late evening when normally we’d be watching TV neither of us cares about or just playing on our phones.

It’s possible I might have trouble sustaining it long-term. Writing does sometimes come in an ebb and tide. But now I know something that works, so if writing stops working, it just means I have to find an alternative.

It’s been more than a year and dealing with this illness on and off has felt pretty icky. There’s a helplessness that happens when your body turns on you. If I can take back just a little control, just enough, that would be good. Baby steps.

So, onto more writing for the evening. And, probably soon, a rant about the MCU and how many words it took to set it to rights!

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