Traveling with Multiple Sclerosis

Let me start with this: I am very open about my MS. I understand and admire those who keep their struggle with Multiple Sclerosis to themselves, however, I find that its almost therapeutic to share my story. So there’s that. Ask me anything!

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Just a quick summary – My diagnosis came in May 2014 out of the bluest of blue. Essentially, I went to bed one night a seemingly completely healthy individual and woke up the next morning with MS. After two debilitating relapses, I left NYC where I was living at the time and moved back home with my parents. It was then that I got myself into a pretty dark and hopeless period. BUT enough of the wallowing.

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Testing the “laughter is the best medicine” theory

I eventually managed to take a good, hard look at myself, and I thought: What am I doing?? There are so many people in this world that have these obstacles come crashing down into their lives and they are able to overcome them and become these incredible leaders! Why can’t I be one of those people?

So I  packed my bags. Since then, I’ve climbed mountains in Israel and gone on safari in Africa, I’ve hiked through New Zealand and ridden a motorcycle across Vietnam, I’ve partied in Thailand and scuba dived in Honduras, and that’s just the beginning! Now, for the most part, I’ve gotten to the point where I hardly ever even remember that I have Multiple Sclerosis. I stopped letting my MS define me, letting my strength to overcome it define me instead.

There are a few minor things that can make traveling with MS or any other chronic disease a bit more complicated, so here are three rules I have used over the last three years in order to consistently travel with (relative) ease!

 

  1. DON’T let anyone tell you no. I’m not going to lie, I have my parents to thank for this one. I can be a bit of a pansy, but with their help I have managed to cut through copious amounts of red tape.

When I told my doctor I wanted to go back to working on cruise ships for months at a time after my diagnosis, he literally laughed in my face. Needless to say, I found another doctor. However, he wasn’t the only skeptic. Drug companies, hospitals, infusion centers, the list goes on and on. Everyone told me it wasn’t possible. We couldn’t get my medication in this particular port. I couldn’t get my IV infusions on weekends. It was just one obnoxious hoop after another to jump through.

Well, I jumped and it worked!

Don’t let a corporate jerk or an uppity hospital board limit you. Obviously, be conscious about your health, but if it comes down to something like office hours or insurance issues, fight it! This is your life, live it the way you want to live it. I didn’t choose to have MS so nobody gets to choose my path for me.

 

  1. Make emergency arrangements. I’m a neurologist’s nightmare. When I walked into my doctor’s office and said I was going to travel through Asia for 4 months without getting my infusions, he nearly had a heart attack. Instead of letting this stop me, I simply came up with a plan. I would fly home in the middle of my trip for a few days to have my infusion, then pick up right where I left off on my backpacker trail. Yes, it was 30 hours of flying and seemingly endless hours in airports, but it resulted in me being able to go about my trip exactly as I had envisioned so I was happy to make those sacrifices.

I also had my doctor prescribe an emergency stash of steroid pills just in case I were to have a relapse somewhere in the middle of rural Asia. Obviously this didn’t happen, and I definitely looked like a drug dealer with my stockpile of pills, but I had a plan!

Its hardly the ideal scenario, but it was safe and the words “multiple sclerosis” barely even crossed my mind throughout my travels.

  1. Listen to your body. Symptoms of MS can include fatigue, dizziness, and heat intolerance among other things. These specific side effects can be very prevalent especially when traveling through hot and humid countries. Don’t ever feel guilty about taking a day to rest! Yes, you’re in these amazing places, but some of the best times can be spent just relaxing and taking it all in at your own pace. This really goes for anyone! Don’t feel pressured to push yourself harder than you need to. There’s absolutely zero shame in taking some time to revitalize yourself. Then, when you’re all recharged, go out there and run circles around everyone else like the badass that you are!

So there you have it.

My MS and I have come to an understanding. Its not my disease or my affliction. Its not my burden or my shortcoming. It is a fire that has been lit underneath me to remind me that I should seize every opportunity and make the most of every single day.

“We cannot direct the wind, but we can adjust the sails.” –Author Unknown

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7 comments

  1. So happy to read that you don’t let a disease define your life. You make the most out of it and it’s so beautiful! Hopefully your piece will inspire many others! Great read!

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