Confessions of the kind of NMOSD patient doctors warn their interns about

I’m a self-sabotaging, push-the-limits kind of gal. The worst kind of patient. The sort of patient doctors warn their interns about.

Yes, I know I should be following their recommendations, nodding politely when I’m told what to do, but my neurologist and I both know that I probably won’t listen. I wouldn’t be surprised if he sighed into his coffee once I’ve walked out of our appointments. Sixteen years into life with neuromyelitis optica spectrum disorder (NMOSD), and I still manage to surprise myself with how spectacularly I can misbehave while insisting, “I’m fine, totally fine.”

After all these years, you’d think I’d have mastered the art of medication management. Instead, I’ve become a professional in the sport of “Did I take it or did I dream that I took it?” Some days, I stare at the bottles like they are all riddles from a fantasy novel. Other days, I forget entirely, only to realize it’s already time for the next dose. Pill fatigue is real, and honestly, I’m so over them.

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Self-sabotaging queen, if you know what I mean

NMOSD may have rearranged my life, but it didn’t cancel my personality. Hand me an apple martini and drop a sick beat, and I promise we’ll have a good time. Is alcohol recommended for someone with a rare neurological disorder? Absolutely not. Do I occasionally pretend not to hear that part? Absolutely, yes. Life is short, and sometimes a girl needs a little green-apple joy.

Sleep, of course, is essential. Every doctor reminds me. Every article reminds me. Every symptom flare reminds me. And yet, there I am at midnight, texting my besties about everything from existential crises to the funny thing my teenager said, her comedic timing a point of pride, but not something I should encourage. Cellphones should come with a feature that forces them to sleep even when I refuse to.

Now, when I am focused, I’m laser-focused. Hyper-focused. Borderline obsessive. When I decide I’m dedicating myself to a fitness goal, I go all in — like, accidentally-pull-a-hamstring-because-I-refused-to-stretch-properly all in. There really is such a thing as too much of a good thing, but try telling that to me when I’m in beast mode. I’ll just limp away, hoping no one notices, and tend to my beat-up body in private.

And don’t get me started on my sweet tooth. I could write a dissertation on designer donuts. My current obsession is a strawberry cheesecake donut filled with cream cheese icing, a dessert so decadent it should come with a warning label. It had great fanfare on my Instagram story. I know sugar isn’t ideal for inflammation, but sometimes joy wins. And sometimes joy is covered in pink glaze.

Work is another area of my life where I’m constantly pushing my limits. One might call it determination, or even purpose, but I recognize I can have an unhealthy relationship with work. When I’m excited about a project, I plan. Then I plan again. It’s a very sophisticated form of procrastination. But once inspiration hits, I’m unstoppable, working late into the night, fueled by adrenaline, ambition, and, possibly, leftover donut crumbs.

Here’s the thing, though: Life needs to be lived. NMOSD has taken enough from me; I refuse to hand over the rest voluntarily. Not pushing the limits feels like admitting defeat, and that’s simply not my style. I may wobble, forget pills, stay up too late, and occasionally injure myself in the name of fitness glory, but I’m still here. Still laughing. Still living. Still choosing joy, even when it’s messy or imperfect or covered in cream cheese icing.

If NMOSD has taught me anything, it’s that resilience isn’t always graceful. Sometimes it looks like stubbornness. Sometimes it looks like humor. Sometimes it looks like a woman with a rare disease, a half-finished to-do list, a questionable sleep schedule, and a donut, still pushing forward, still pushing limits, still choosing to live boldly.

I wouldn’t have it any other way.

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.