Driving toward a better life with NMOSD

I’ve always loved driving, especially highway driving late at night. Watching every dash on the road zoom by with the hum of the car is both an exercise in concentration and a form of meditation. I was once an occasional smoker (it was short-lived), and I’m embarrassed to admit I still miss a long drive with a cigarette. What I miss the most about smoking and driving is the forced breathing in and out, which is obviously healthier without the nicotine, combined with the monotony of the road.

Neuromyelitis optica spectrum disorder (NMOSD) is a sneaky beast. It’s always with me, lying dormant until it decides to rear its ugly head. It can be overwhelming at the best of times. On a recent drive alone, I made a decision: It’s time to be grateful for what I have, to live in the moment instead of worrying about tomorrow. With everything constantly feeling so hectic, I took that time alone to get some much-needed clarity.

Easier said than done

Sometimes my 10-year-old daughter, Sophie, gets a little anxious about all her responsibilities. It’s a big, scary world out there, especially for a tiny thing like her. She’s doing a remarkable job working toward all her goals, but I’m always reminding her to live in the moment and enjoy what she’s doing right now.

I need to take my own advice.

I want to be present, living with gratitude for the life I do have. I want to stop worrying about when the other shoe might drop. I want to trust my body again, to trust that my treatment is helping prevent an NMOSD relapse.

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Focusing on the positive

Several months ago, I started Cymbalta (duloxetine), an antidepressant, to help with my panic attacks. They didn’t happen often, but when they did, the bout would last for several days, and I’d be scared to interact with people.

Working with my therapist, I recognized it was the lack of control that sent me into a tailspin. There’s no controlling NMOSD, so I try to control all the other aspects of my existence. I think Cymbalta is helping, though. I feel happier and less concerned about the details. The medication might also be why I had this epiphany while driving.

My condition has been stable for the last couple of years, not counting the small hiccups where I overdo it and my symptoms flare. I do that to myself, and I know it. I feel like I’ve made decent decisions regarding my pain management, supplementing Suboxone (buprenorphine and naloxone) with the occasional cannabis gummy bear.

I also have a small but tightknit circle of support. It’s taken me a long time to know who is sincerely there for me and invested in understanding NMOSD and how it affects me. It’s not quantity, folks. The quality of my friendships makes me feel like I have an army behind me.

With age comes wisdom

I’m in my (very) early 40s and have the pleasure of mentoring the next generation, both in the NMOSD community and professionally. I’m at the point now where I don’t care what others think. I know how tough I am, what I’m made of, and I can only credit NMOSD. Am I being more honest with myself? Absolutely. The difference is that I’m finally at the point where I can communicate what I need, too.

I’ve caught myself smiling more often because I’m grateful for so many things. It’s true that life isn’t easy when you’re forever sick, but this is my hardship, and it’s OK. I’m now confident in who I am and I’m accepting my reality. Knowing what I want in life moving forward, and knowing the limits I can exist within, is truly empowering. And if I ever forget this positive outlook, I’ll just go for a long drive.

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 (NMOSD).