Table of Contents
I’d Rather Be Writing (These Damn Writing with Autoimmune Flares)
I’d rather be writing. I’d rather be outside, with the sun on my face and clean air in my lungs. Instead, I’m inside, staring at nothing in particular, my brain enveloped in a river of fog.
My crime? Trying to breathe the air in my backyard. We’ve got new neighbours, you see, and they’re in love with their dryer sheets. I can’t process the formaldehyde in them well and so here it sits, pickling my brain.
Just call me Zombie.
I’ve got my bag of tricks for putting out the autoimmune fires now raging through my body and making my joints give audible cracks and pops with each movement.
These tricks, carefully honed over the past decade, will take the flare from the two-week-long fiasco it once was down to two days, with some smouldering on days three and four.
But for now, while I wait for them to douse the flames… I’d rather be writing.
Clipping the Vulture’s Wings (Depression and Being Kind to Yourself)
Depression follows these flare-ups, like a vulture on a carrion wind. It will overstay its welcome by days or weeks, depending on what I’ve been exposed to.
On these days, as much as I’m able, I recognize it for the invader it is. It’s a temporary inflammation of the brain, and it will pass. The best thing I can do is to be gentle with myself and my expectations of the day.
Stress is half the battle with any malady, and it’s something I have some measure of control over in how I choose to react. When simply getting out of bed is a feat, I can either beat myself up for not being productive (and surely make things worse) or I can be kind and accommodating.
I choose to make strawberry lemonade out of gritty swamp muck.
Strawberry Lemonade (Find the Good)
I do everything I can to mitigate all the nouns that trigger a reaction, and so have more good days than bad, but it has come at the cost of my social life. Sipping on that lemonade means I concentrate not on what I’ve lost, but on what doors are now open to me.
I can write that horror novel/series I’ve always wanted to write, with renewed focus.
So, for six years I have been writing my novel. There are days I don’t write, or can’t write, and days I manage only a single sentence. This sentence though, this brilliant sentence for the ages, is one more than I had the day before.
I take my victories in nibbles, and one night I look up from my laptop having eaten the entire whale. My first book, along with a novelette, will be published in the coming months.
Nothing Compares to You (Don’t Compare Yourself to Other Writers)
Comparing myself to other writers and their progress is a danger that crops up from time to time. It helps to understand that we’re all different, telling different stories and dealing with different strengths, weaknesses, and struggles.
I’ve practised astrology professionally and studied hundreds of natal charts, which keeps this notion stuck to my ribs—not that our friend, depression, doesn’t try its best to pry it free at times.
But beyond that, berating myself for not writing a novel in a month will only sap my already low energy. I wouldn’t get on myself to run a marathon with a broken leg, so why should this be any different?
In fact, this past year I’ve been doing the opposite, regularly telling myself, “I love you, Nikki,” either out loud or in my head. It does something positive to the cells in my body and brain to hear it.
Try it for a few days and see if it doesn’t help lift you up, whether you deal with chronic health issues or not. If you’ve got depression, chances are you haven’t heard or believed these statements enough in your life. Treat yourself every bit as well as you would your best friend.
Work-Arounds and Howling at the Moon (Be Productive in Other Ways)
There are often writing-related things that I can do when I’m having flares. Maybe it’s answering an email, or interacting with readers and fellow writers on social media, or watching videos on writing and marketing.
I may not retain everything, but some of it will stick around and I can grow my craft. That’s progress and forward momentum. But even if all I can do is veg out, that is okay too. It’s time to regenerate and refill the well, every bit as necessary as penning 1,000 words.
None of this is to say that I don’t scream, cry, and howl at the moon. I’m human, and such outbursts come with the territory, but I don’t stay long. It’s an endless desert, and I’ve got a thirsty novel.
Taking Charge of Spaceship Me (Be Your Own Hero)
I’m always on the lookout for new tricks to add to my bag, and I dove into understanding my conditions from the beginning. I don’t accept that there is nothing to be done about my situation, and I’m continually rewarded for keeping an open mind.
Take charge of your health and give the crazy remedy a try—it just might be the one that changes your life.
One sinister hidden aspect of living with these conditions is that on some days I feel like I can lasso the sun. I want to make up for lost time and experiences, so I may overextend myself. And once I give my word on something, I move mountains to make sure it happens.
So there I am on my bad days, with all the strength of an ant, trying to chip away at Mt. Vesuvius.
Sure, I’m tough for my size, but it’s still going to take a while to get there. I’ve learned to pace myself, but holding back isn’t easy in a world of shiny things.
Invisible Illnesses Are Often Tripped Over (Dropping Toxic People)
My illnesses aren’t shiny; they’re invisible. I look fine on the outside unless you know me well. Then you might notice the lack of eye contact, me staring into space—or, if you’re particularly gifted in the Nikki-arts, that I sound like a bone-and-joint symphony courtesy of my arthritis flares.
Very few people are skilled in this art, which gives me the added challenge of dealing with people questioning my sanity and integrity. This social illness may be the worst of them all. I’ve had to distance myself from, or cut out altogether, too many people who should be by my side but can’t be bothered to not wear perfume when they come to see me, or who flat out call me crazy. I need that like I need a hole in the head.
There’s an odd cold strength that comes from losing so many people. It’s a crash course in self-love and boundary setting. I can’t control their reactions to me and I can’t make them understand, but I can recognize a toxic situation and remove myself from it. I can love myself enough for that, and so should you.
This is easier said than done. But, bit by bit, you too can learn the ancient art of giving no fucks.
I focus my time and energy on those who love me back. I’ve got some pretty amazing and understanding people in my life too, those who go out of their way to avoid setting off a reaction in me. Recognizing and being grateful for my blessings carries me through.
Just Remember That Ant… (Keep Your Eyes on the Prize)
My writing is a blessing to me. Having that goal of a completed book in my hands—knowing that, if I don’t write it, no one else can or will—gives me the stamina to lift one grain of dirt each day and move that mountain. It’s a tool in my bag of tricks, too. A powerful one.
Tip Jar (Summary)
- Be gentle with yourself. Stress is half the battle.
- Find the silver lining and wrap yourself in it.
- Take charge of your health.
- Don’t compare yourself to other writers.
- Write what you are able to, even if it’s one sentence.
- Change what productive looks like.
- Howl at the moon!
- Release toxic people from your life.
- Focus on your blessings, goals, and tribe.
Seize the Day (Write When You Can)
Today is a good day, so if you’ll excuse me, I’ve got some writing to get to. Join me if you can, and thank you for reading. I hope something I’ve written here will help you tame one or more of these beasts.
Take care of yourself,
Nikki DeKeuster
P.S. If you suffer from depression or autoimmune conditions and are curious about what’s in my bag of tricks, comment below or contact me through my website; I’ll happily share what’s worked for me. 🙂
About The Author
Nikki DeKeuster invites you to sit around the fire as she weaves dark tales of mischief, mayhem, and mad love. Stories that stick to your ribs long after the lights have been doused and your head hits the pillow.
She enjoys crunching leaves underfoot while exploring the bluffs of Lake Michigan with her daughter and husband.
Her first horror novel features an apathetic delinquent struck with crippling empathy and haphazard control over emotions as she struggles to keep her sixth sense from becoming her only sense. It will claw free of the earth in 2021.
Explore NikkiDeKeuster.com for more.