-
Traveling With MG for the First Time
I talk about preparing for my first time traveling since my MG diagnosis in my column this week.
Going on road trips is one of my passions. Before MG, I enjoyed planning for trips because it was like already being there — and I savored that. Now, planning for an upcoming road trip doesn’t hold the same excitement for me as it used to.
I have found myself procrastinating ahead of this trip. I’m putting off booking rentals when in the past, I’d have had everything outlined in detail months in advance. Now I have to map out all hospitals because we will be in an isolated region without reliable cellphone service.
I’m anxious and worried about the risks. I fear that I will fall ill or that I’ll be too fearful to enjoy myself. I am an MG snowflake who is afraid of the cold. Traveling in the off-season means colder temperatures, and I’m nervous about how I will react. I haven’t left Florida since my diagnosis. When I go from a temperature of 90 to 70, I shiver and get goosebumps.
Packing for the trip makes me worry about moving and traveling with luggage, and washing clothes, and trying to think about things to bring that I might need has been exhausting. MG never fails to remind me how everything will be different now.
To remain excited about my road trip, I’m trying not to focus too much on keeping to the itinerary. How do you ensure that you can enjoy a vacation despite all the additional planning due to MG?
-
4 Replies
-
I love to travel also!! As I write this, I am in the Upper Penninsula of Michigan along Lake Superior enjoying the fall colors taking short hikes and bike rides as my muscles allow. I am concentrating on what I can do that day knowing that it will change day to day. I rest often!!
I have an app on my phone that finds hospitals. I wear my Med ID alert bracelet. I have a cell booster that helps for areas with low cell reception , but it’s not perfect.
I live in Florida and Michigan so I get the freezing when it dips below 80 degrees. I travel with a heating pad. I like the one from Walgreens because it stays on. I also have a pair of thinner gloves that a cyclists would wear- bikes shops or Amazon sell them. I have been known to use them inside my house even. I will wear a base layer under my clothes in the cold. Anything that’s thin that will wick away the sweat. I always dress in multiple layers in the cold
The summer before the pandemic, I got really brave and booked a dream trip to Germany to celebrate a big anniversary. My MG was stable and my doc said go for it. It was a river cruise and I knew that they could pull the boat over anytime if I got sick and needed emergency care so I was comfortable with that. I had an anxiety attack the day before departure and almost cancelled because I was scared I would get sick. I took a chance and we had an incredible trip!!-
Do you mind sharing what the app is for the hospital finder?
Thx!
-
-
I hope you have a wonderful time in your travels!! Please update us how it goes. It does get easier the more times you do it. My first trip I was a mess, carried around mestinon and water in my pockets at all times and bought a medic alert bracelet, documents in case I went in the hospital . When I think back I chuckle a bit but it made me feel secure at the time. As you learn over time how your body reacts to stressors you will get more confidence in doing things and the planning needed.
-
Road trips are the safest way to travel for me. I always get a bacterial respiratory infection within two days after a plane trip since I’m on immune suppressants. I waste precious vacation time being sick and finding a local doctor. After falling in NY due to MG muscle fatigue after walking those long blocks, in cities, I’ve learned to plan hop-on/hop-off bus, boat, train and any kind of riding tours vs. walking tours where finding public transit or ride shares isn’t reliable if my legs give out. We usually plan day trips from a central base that has lots to do for others if I’m tired. I plan a restful day before any events with advance tickets or that can’t be rescheduled. My key to travelling with MG is to keep the load, distance. and effort manageable, stop to rest and recharge before I get tired and plan wisely. I use travel organizers to save time & effort: a hanging toiletry bag, packing cubes, a light foldable day pack and the lightest suitcase I can find. Instead of a purse, I carry an ultralight pacsafe crossbody travel bag with room for medication, and lots of compartments to eliminate the need for a wallet, tablet case, etc. Clothing and shoes created for travel are usually packable, light, washable and quick drying. I found reasonably priced travel (and even camping/backpacking) products online and I pack the absolute minimum. Road trips with my own vehicle allow me to bring more but I’ve made rentals work, too, except most airports require a lot of walking to pick up the rental. I accepted that I probably won’t be able to cross many trans-ocean trips off my bucket list due to MG but I’m fortunate there is plenty to see and do in North America.
Log in to reply.