How to power through each day, even if you’re living with NMOSD
Here's my 7-step plan for when the world comes at you hard
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There are some days (or weeks) when it feels like the world is coming at you hard and there’s nothing you can do about it.
Life can be messy. I had a day like that just last week. So how do you power through when everything is a priority, but you have neuromyelitis optica spectrum disorder (NMOSD)? Here’s my playbook, refined through trial, error, and the occasional dramatic flop onto the couch.
Step 1: Accept that today might be weird
No one wakes up expecting the day to be hard and filled with unexpected surprises, so when it happens, just accept it. You’ll waste time dwelling on “Is this really happening to me?” The trick is not to fight the weirdness. Fighting takes energy, and energy is a precious, limited-edition resource for people with NMOSD.
I find that when I’m stressed, my NMOSD symptoms like to flare up. Fatigue hits me hard, my spine hurts, and I have vision pain. When that happens, I shrug and say, “OK, body, you’re the boss today. But we’re still doing something.” Lowering the bar isn’t giving up. It’s strategy.
Step 2: Break the day into bite-sized chunks
When everything feels overwhelming, I break the day into micro-missions. Not “Clean the kitchen,” but “Move the mug from here to there.” Not “Finish the project,” but “Open the document and stare at it meaningfully.” Momentum is momentum. Even if it’s slow, it counts.
And honestly, sometimes the satisfaction of checking off a tiny task is the only thing keeping me from dissolving into a puddle of existential goo.
Step 3: Use humor as fuel
If I don’t laugh, I’ll cry, and crying takes too much energy. So I lean into the absurdity.
Did my kid just throw up and make a mess of the bathroom? Yup, that really happened. I guess I’m molly maid today.
Are my hands tingling now? Ah yes, the static electricity special.
Fatigue hitting like a freight train? Perfect, I always wanted to cosplay as a Victorian woman who needs to lie down dramatically.
Humor doesn’t fix anything, but it does make the ride less bumpy.
Step 4: Prioritize like a CEO with a nap schedule
On tough days, I ask myself: What needs to happen today? Not the imaginary list of shoulds, but the real, nonnegotiable essentials.
Then I do those first, before my body decides to file a complaint with HR. And as the day progresses and surprises happen, I rely on my mental fortitude and power through.
Then everything else can wait. The world won’t end if I don’t answer that email today. And if it does, well, I won’t be stressing about it tomorrow.
Step 5: Rest like it’s your job
I used to treat rest like a reward. Now I treat it like oxygen.
If my body says stop, I stop. If I need a nap at 11 a.m., I take it. If I need to lie on the floor and stare at the ceiling like a Victorian poet contemplating the meaning of life, I do that too.
In fact, I rest as much as I can between tasks, even on a typical day. Rest isn’t laziness. It’s maintenance.
Step 6: Celebrate every weird win and ask for help when needed
Did I shower today? Victory.
Did I answer one email? Champion.
Did I make it through a meeting without my symptoms staging a coup? Gold medal.
Living with NMOSD means redefining success. Some days, success is simply showing up in whatever form you can manage. On days when I’m needed as a mom, wife, friend, sister, or daughter, I push through what I’m able to do and then I ask for help.
Step 7: Remember you’re allowed to be proud
People don’t see the invisible battles: the pain, the fatigue, the uncertainty, the constant negotiation with your own body. But you know what it takes to get through a tough day. And if you’re reading this, you’ve already survived 100% of your worst days so far.
That’s not nothing. That’s resilience with a capital R. So, if you’re needed for family drama, a million errands, or that time you got a flat tire during rush hour – you got this.
Life with NMOSD isn’t easy, but it’s not without its moments of humor, grit, and unexpected triumphs. Some days you’re unstoppable. Other days you’re held together by caffeine and stubbornness. Both versions of you are valid. Both are strong.
And on the days when the world comes at you hard, remember, you’ve handled worse. You’ll handle this too — one tiny, ridiculous, courageous step at a time.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
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