My summer vacation tips for traveling with NMOSD
Being prepared is always the best way to enjoy the break
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Ah, summer, the season of sunshine, sandy toes, and an overwhelming urge to leave our responsibilities — and occasionally common sense — behind.
For most families, mine included, summer is a time to finally take a much-needed break. But as someone living with neuromyelitis optica spectrum disorder (NMOSD), vacation planning looks less like “throw things in a suitcase and go” and more like preparing for a complicated military operation, but with better snacks.
Long car rides or flights are often part of vacation. But I don’t care how luxurious a seat is, if I stay in it long enough, my body will file a formal complaint. So my No. 1 rule is to schedule movement breaks when I stretch, walk, or even just reposition myself. When driving, I usually plan which stops we’ll be making to give myself a timeline for my next stretch.
I also bring a pillow. In my life, I’ve reached a stage where comfort outranks aesthetics, and the pillow has become part of my personality. I need it to position my body in order to endure the long ride or flight.
Medication management and other things
Nothing says “vacation vibes” like having to carefully time the next dose of pain medication. I have it down to a science so that it hits right when my body starts to suffer. Timing medication is a bit like trying to catch a wave; you want it to hit just before things get uncomfortable. For me, that’s around the one-hour mark of sitting. If I wait too long, my body will throw a tantrum full of spasms. If I take it too early, I’m ahead of the chaos.
Another important point: I also always keep my medication in my carry-on or other easily accessible bag. That way, if my luggage is lost, I’ll be prepared.
When traveling internationally, I’ve found it’s a good idea to bring a letter from the doctor outlining my condition and medications, especially if I’m carrying anything remotely suspicious, like narcotics for pain management. Nothing ruins a vacation faster than “I swear this is legal” in an airport security line.
I also highly recommend mapping out the nearest hospital to the destination. This is because NMOSD doesn’t always RSVP before showing up. Knowing where to go in an emergency can bring peace of mind.
The final issue is travel insurance. It’s one of those things you hope you never need but feel immeasurably smug having when you do need it. I usually get mine online or through my bank, and it’s worth every penny.
Having NMOSD doesn’t mean we can’t travel, it just requires us to travel smarter. Yes, I pack more, plan more, and occasionally look like I’m preparing for an extended expedition instead of a four-day getaway. But I get to enjoy the sunshine, laughter, and joy of stepping away from everyday life. I just do it with a pea pod pill case and a pillow tucked under my arm.
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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