Life Lesson 117: Traveling with Multiple Sclerosis. I Remember when Traveling was so much Easier!
By HeidijSwenson on September 30, 2011
So when did traveling become so difficult? Most people would say after 9/11. For those of us living with Multiple Sclerosis, we will tell you it started right about the time our disease hit. It’s just not the same anymore. Whether you are going by plane, train or automobile, there are numerous obstacles and road blocks you must face. Its finding ways to work around them and cope that makes the trip more enjoyable. Sometimes it’s nothing more than saying, “It is what it is, so I’m going to make the best of it.”
I travel quite often speaking about MS, so I’m very familiar with airports, layovers, and long flights. There’s nothing better than a first class upgrade, but let’s face it, how often does that happen for most people… not enough! So we have to find ways to survive flying in a ‘Tylenol capsule’ for extended periods of time, with limited space, poor food selection and recycled air. Eeewwww! First of all, where do you choose to sit? If you are claustrophobic, you're screwed either way because you want to be next to the window so you can look outside and visibly see the air and the vast world beyond; but there is no way on earth you are going to be trapped inside and not have the freedom to access the aisle at any time. Same goes with those of us living with MS. We need aisle seats. We have to be able to not only stretch our aching, cramping muscles; but we also need immediate right of entry to the latrine at a moment’s notice. (Regardless if the bathroom sign is lit or not!) No matter where you sit, your knees are cramped against the seat in front of you, and you’re usually sitting next to a stranger who not only doesn’t wear deodorant, but also snores and takes up half your seat. Then as soon as you take off, the person in front of you reclines their chair and is now lying in your lap, and the child behind you starts kicking your seat and their oblivious parent does nothing to stop it the entire flight! Did I mention the baby who’s screaming and crying and won’t stop? Who handles the temperature gage anyways- it’s either stifling hot or it’s so cold you need a jacket and three blankets!
So if you are lucky enough to survive the flight, let alone the entire fiasco at the airport (ie: check in, long lines, layovers, security/TSA- that’s a whole blog altogether) now you have endure the trip itself. If you’re anything like me, I’m so exhausted from traveling, I’m happy to sleep for the rest of my vacation. Honestly, as long as the time permits, I always take a nap to freshen up and recharge my ‘battery’ after I check in to my hotel. It makes all the difference in the world. Sad thing is, these days we have to pull back the sheets and mattress cover, inspect for bedbugs, then if all looks good you have to adapt to sleeping on a mattress that not only isn’t your own, but usually sucks. This is where complete exhaustion comes in handy!
Another thing we have to deal with is our medications (some of us need a separate suitcase altogether). My injection is supposed to be refrigerated. At first I was reluctant to travel and requested a refrigerator in every room. However, I’ve since learned that it can be room temperature for up to 30 days, so traveling just became so much easier. Getting through security has never been an issue for me with my prefilled syringes, and I carry on my luggage 98% of the time. Thank goodness for my uppers when I'm too fatigued to function and my sleeping pills if I'm still too jittery from my uppers. LOL! I haven't even mentioned all the emergency medications I have for cramping, aching, acute pain, bladder, you name it and there is a pill for it!
Once you’ve reached your destination, you have to acclimate to the temperature. If you have MS, you can’t tolerate heat (or the extreme cold if you’re like me). So you drink tons of water, find shade and air conditioning wherever possible, and if you’re lucky you own a cooling vest (or you can contact the MSAA and see if you qualify for a free one :-). When it’s cold, bundle up and pray there’s a Starbucks nearby! The other thing I try and fit in my schedule while travel is a mandatory daily nap. It makes the difference between a good trip and a great trip! If you have cognitive problems (both my short and long term memory have been severely affected) so taking lots of pictures and video are crucial- if you actually want to be able to remember you even went on vacation. Sometimes looking at pictures will trigger a memory for me, and then a series of memories come flooding back. Other times nothing, nada, zilch, and I’m just happy looking at the pictures saying to myself, “That is so cool I did that. Really, I went there? Wow, I love that outfit, I wonder where it is?” It’s like living in the twilight zone sometimes with MS because you’re not sure what’s real, what actually happened, and what was just a misfire in your brain (or in my case an AK-47 on steroids going off).
Now what happens if you have a relapse while you are away from home and all of your doctors? If you have good insurance, you can always go to the nearest minor emergency or hospital. If you don’t have a ‘group plan’ and your insurance costs you an arm and a leg but the coverage is horrible; unless you can afford it, you have to wait to seek medical attention until you get back home. I was in Boston when I was hit with Optic Neuritis (I’m already legally blind in my right eye and this caused me to only be able to see about 30% out of my good eye). I was scared to death, not knowing if it would be permanent, and I was unable to see much more than about 15 feet in front of me, plus I was so light sensitive that I wanted to stay in my darkened hotel room and never leave. Unfortunately I had to wait until I returned home to get on high doses of IV steroids to reduce the inflammation.
Surprises come in every shape and form when you are traveling. It’s not as easy as it used to be, but what are you going to do about it? Are you going to quit traveling, let the world pass you by and live vicariously through other people? Not me, I’m going to grin and bear it!!! I’m going to make the most of every moment, find ways to deal with or around each and every obstacle, and I’m going to take this world by storm. I’m not going to let anything stop me or slow me down (I wish I could mean that literally- but unfortunately that is physically beyond my control). However, I will enjoy every adventure, every sunset (sunrise is too early these days ;) and most importantly I will enjoy every person I meet along the way, the friendships I make, and the relationships I have in my life. For the journey of life isn’t measured by the number of miles you have traveled, but by the number of friends you make.
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