4 Ways to Prepare for Traveling with MG
I remember one of the first things I thought I’d have to give up shortly after being diagnosed with myasthenia gravis (MG) was traveling. I couldn’t imagine being away from the comfort of my own home, the familiarity of my local hospital, and most importantly I was terrified of being too far away from my doctors.
MG is such a rare and unpredictable disease that even when we are stable, anything could set off a flare and at any given moment. To top that off, not everyone knows about MG, including medical professionals, so who knows what type of care we would receive when we were somewhere we weren’t familiar with?
Gaining confidence in travel
I remember the first trip I braved after being diagnosed was a week long trip to Maui. I had waited a couple years to book a vacation and decided I had to live my life. I couldn’t live in fear anymore and I wanted to make those special memories with my boys.
While that trip didn’t go seamlessly, I learned so much from that first experience that it gave me the confidence I needed to travel again in the future.
I never thought that years after that, I’d be traveling full time with my family. We literally live on the road and are in a new state every month. While you may not travel full time, I’ve been able to live this lifestyle because I’ve gained the confidence to know what to plan for.
There are 4 things that I have found most helpful prior to traveling. I’m sure there are a few things I also do intuitively now but these specifically are the most helpful.
Check the weather
The first thing I do is check out the weather including the humidity and elevation for where we are traveling. Those two factors will greatly influence what I need to pack (ice vests, dehumidifier, etc) or they may end of rerouting our plans all together.
Locate the nearest hospital
The second thing I make sure to do is look ahead of our trip to find the nearest hospitals to where we are staying. From there, I follow up by reading the reviews to the hospital and specifically the emergency room. I also try and research the emergency neurology department, if at possible, since they are the ones who typically would advocate for us in that setting.
I do let my doctor know of my plans to travel as well so they are aware in case I need to contact them or worst case scenario, be admitted.
Have enough mediation
The third step I take prior to traveling is to make sure I have enough medication. Going hand and hand with that is checking for the nearest pharmacies in case something happens to my medicine.
Although I’m really diligent about having my medication with me, some things happen that are outside of my control. In addition, some of the medications we take cannot be skipped so this is an especially important reminder.
Pack a little at a time
My final tip when preparing for traveling is to pack and prepare a little at a time rather than waiting until a couple days before or even last minute. Sometimes I’ll take a week or more to get everything ready, especially since I’m usually packing for a family of 4.
This not only allows me to beat some of that pre-travel anxiety which can flare MG, but it also helps ensure that I don’t overdo it right before leaving so I can enjoy my trip rather than dealing with symptoms.
It takes time to build trust
Don’t get me wrong, even years after fine tuning how to prepare for traveling, I still get scared when I’m in an unfamiliar area. I’ve gained trust in my ability to know what things trigger me and how to articulate my needs and symptoms if I were to have to go to a hospital.
Those things are the most important on top of it all. Once you gain trust in your body again and are able to confidently advocate for yourself in any setting, traveling becomes less scary and much more exciting again!
Do you think there is enough awareness of myasthenia gravis?