How to live with NMO and still enjoy your vacation

Christine with family in Vietnam

Family vacation in Vung Tau, Vietnam

We’re deep into the summer season, and that means summer vacations. I just got back from a month-long stint in Vietnam—a half-vacation, half-business trip—and while it feels spectacular to be home, travel is what I live for.

Travel opens your mind. It keeps you grounded. It makes you realize you are just a small speck in this universe, and that there is not necessarily a right or wrong, good or bad way to do things. This is why I travel and why, when I’m asked, “How can I learn to be a better cook?,” I say, travel.

Of course, I also have Neuromyelitis Optica/NMO, and traveling, even for a healthy person, can be stressful on the mind and body. Before I step foot out the door, I must plan, plan, plan. Here is a practical checklist to ensure you have a great vacation in spite of NMO.

1. Pack your meds, both those you regularly require and those you may need for acute situations.

I always carry my trusty meds on me. In a little container I purchased from The Container Store, I stuff:


  • Prescription meds in case I experience symptomatic neuropathic pain
  • Over-the-counter meds like ibuprofen in case of aches or general pains,?li>
  • Vitamins that I take daily
  • OTC sleep aids of which I sometimes take half when trying to adjust to a new time zone

Sometimes I will pack a prescription course of corticosteroids (e.g. Dexamethasone) in case I experience a NMO flare-up while traveling; of course, you should consult with your neurologist first to see if this is a viable option for you.

The above is my personal rundown of meds I pack but, just as every patient’s NMO is different, your list of meds will also differ.

2. Bring your insurance card and any other information you may need in case of an emergency.

We all know NMO can be unpredictable. An attack can be triggered by stress, fatigue, allergic reactions to foreign foods—all things we encounter during travel. Sometimes, an attack can happen without a detectable reason. You never know when you might end up in the emergency room in another city or country, so make sure you bring along with you any information you might need should you find yourself in this unfortunate situation: your health insurance cards and information about NMO for the clinic staff (since it’s still unheard of by many), which you can obtain from the Guthy Jackson Foundation.

3. Wear and pack comfortable, breathable clothes and shoes.

Comfort is key when on vacation. My so-called “en route uniform” usually consists of a UNIQLO Airism top, black GapFit sweatpants, sneakers, and a lightweight cardigan. If I’m traveling for work and have to look halfway decent upon arrival, I’ll wear a tee-shirt dress, leggings, and slip-on Chelsea boots or flats. The essentials are always breathable, wrinkle-free apparel in which you can move freely, an unrestrictive waistline, and shoes that you can easily remove at airport security checkpoint. Layering is important )hence the short-sleeved tops accompanied by a thin cardigan) because you’ll more often than not find yourself going from mild climate to freezing temperatures aboard an airplane to makeup-melting temperatures at your tropical summer destination.

And if you do book a vacation to somewhere hot, consider bringing this cooling tel—just wet, shake, and place on the back of your neck to cool your body down.

Being in a new environment and getting there and back are stressful enough—minimize the stress by donning comfortable clothing.

4. Use your cane or request a wheelchair as needed.

Request a wheelchair to help you navigate the airport to preserve energy. This can be done as soon as you get dropped off at the airport curb—just flag down an airport employee and say you need wheelchair assistance to the gate.

You should be able to go through the special TSA security line reserved for the elderly, disabled, or those traveling with small children. Then when you get to your gate, tell the gate attendant you’ll needto pre-board. (Or if you have a cane or are seated in the wheelchair, they should automatically pre-board you.)

Navigating an airport is stressful enough, so take advantage of these services designed to alleviate travel fatigue.

5. Allow ample time for rest between activities.

Lastly, once you’ve reached your destination, make sure it’s truly a vacation. Avoid packing your schedule so tightly that you fail to relax and enjoy, which are the points of a vacation. Slow down so you don’t miss the unexpected, serendipitous discoveries of a new place.

I made this mistake when I backpacked through western Europe the summer after I graduated college. Of course, I was a lot younger then (and thus had the energy to run from museum to internet cafe to landmark to train station). But I remember being in Florence towards the tail end of my trip, and after seeing Michelangelo’s statue of David masterpiece, I just shrugged and thought to myself, “This is the umpteenth museum I’ve visited in Europe—they’re getting to be all the same.”

I regret letting that complacency settle in, and since then, I knew better than to overpack a vacation schedule. Now I allow myself more time for leisure and rest. After all, I can’t enjoy exploring when I’m exhausted. It’s nice to be able to go back to a “home base” (I.e. Hotel or airbnb) to get in a little R&R before hitting the streets again in search of the next site or restaurant.

So there you have it: my personal 5 tips for an enjoyable vacation in spite of NMO. Who said you can’t have fun, travel, and experience new things with NMO? Tell your NMO to buzz off—you’re on vacation!

01
Aug 2016
POSTED BY Christine
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One Comment

  1. Maria

    Good advices, specially for us people with autoinmune diseases. I particularly have NMO. Thanks

    Comment by Maria on August 2, 2016 at 7:09 pm

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