Europe – #AtoZChallenge

Oh, my. Traveling to Europe for a six-month trip was impacted by having MS in a variety of amusing ways.

First off, I decided that the best way to enable myself to be active was to take along a cooling vest, since heat can really exacerbate the symptoms of Multiple Sclerosis. The deal was, the vest looked puffy but was actually fitted with these long gel packs that you would freeze and then stuff into pockets that encircle your torso. It was so bulky and heavy that I had to wear it on the plane to save room in our bags, so I looked, basically, like a mild-mannered, middle-aged suicide bomber.

Modeling the cooling vest. Note the handy Velcro shoulder and side straps!

That was only the first thing that caused problems for airport security, though! The other was that I needed to bring six months’ worth of medication, so my entire carry-on bag was packed with drugs. Nothing to see here, security people!

Being gimpy and slow had two main consequences on the trip. First, David and Quinland would inevitably drift farther and farther ahead of me. Honestly, this didn’t bother me much, because I like to window shop and they don’t, so I’d have been falling behind anyway, and this was a good excuse. One time in Portugal, though, I tripped and fell while strolling down the street (very gracelessly, I should add; I just pitched over, face-first) and my family was just out of shouting range. Thankfully, I was immediately attended to by the wonderful local folks, whom I tried to assure, without actually knowing any Portuguese, that I was scraped up but otherwise fine.

The second thing was that — and this holds true today — if I over-exert myself on one day, I usually am laid up on the next. D and Q thus got to go on many adventures without me, though we tried to make those days either sites-I-was-less-interested-in or physical-activities-I-probably-couldn’t-do-anyway. It would have been fun to mountain bike in Istria or kayak in Norwegian fjords, but I can’t complain — I can still travel, and I’m incredibly grateful for that.

I’m also grateful that I got to visit massage therapists all over Europe, from the relaxing one in Lisbon to the near-chiropractic one in Barcelona to the health-club vibe of the one in Hannover. (After being introduced to hot yoga in London, I also got to explore yoga studios in Paris and Dublin!)

Disney World – #AtoZChallenge

Way back in 2011, when Quinland was nine years old, my sister-in-law, Lynette, and I decided to take him to Disney World for his tenth birthday.

Around the time we started making our plans and buying our tickets for the trip, I was trying to figure out what the heck was going on with my body. Sure, I’d had a virus at the end of the summer like everyone else in my office, but why did my skin hurt? Why did I keep tripping? Why was I having so many random UTIs?

As time progressed, it was more severe. Why was my left leg numb? Why couldn’t I feel my foot? Why did my shoe fall off? And what the freaking heck was the horrible pain that wrapped around my body?

After multiple doctor visits and two MRIs, I was told, “Your test results are consistent with multiple sclerosis.” Lovely. They booked me for five days of IV solumedrol, with the last day being the day before we flew to Florida.

When the solumedrol days were over, I still had the pain, the numbness, the tingling, the difficulty walking — but now I was jacked up on massive amounts of prednisone and blown up like a balloon.

But back to Disney World! After issues with walking at the airport (and a subsequent wheelchair trip to the gate), we settled into the plane. By the time we got off, I was feeling much worse. When we got to the hotel, we were pretty much convinced that there was no way I could handle the trip since I couldn’t walk. We got on the phone and started calling places that rented wheelchairs and scooters.

This ended up making the trip one that will go down in history.

When you can’t stand or walk, Disney lets you skip the line and go in through the exit. You wait there to board the ride at the next available time. Because of this, we were able to ride far more rides than we would have otherwise! A few ride operators would even ask us if we wanted to stay seated and ride again! (Hello, Big Thunder Mountain Railroad and the Aerosmith Rock’n’Roller Coaster!)

Only once did my rental scooter cause me any grief: I was making my way through the after-parade crowds while Lynette and Q ran ahead to scope out the next ride, when suddenly one wheel of the scooter got caught in a Main St. streetcar track. I was stuck; I couldn’t stand well enough to pull it up out of the track, and my people were nowhere near me. I had to ask a stranger to come to my aid. Luckily, he was generous and took pity on me, and my faith in humankind was upheld.

The trip ended up being fabulous. I learned to get in buses with wheelchair ramps; I got to go through rides quickly and often. (Quinland got the extra added bonus of being able to hitchhike on the scooter with me when his feet hurt or he got tired! It’s any kid’s amusement park dream!)

BikeMS – #AtoZChallenge

Let’s start with a disclaimer: I’ve never done BikeMS. But I think this will be the year that changes!

While WalkMS is an event that takes place during a morning in springtime, BikeMS is a summer weekend extravaganza. Cyclists and their teams convene at Western Oregon University in Monmouth, then camp there for the weekend, going for a bike ride each day. You choose rides ranging from 15 to 105 miles, depending on your ability and fitness, then come back to the campsite each night. It sounds so fun!

I don’t know if I can ride a bike very far; the sole of my foot is really hypersensitive, and I’m not sure I can push a pedal repeatedly. But I’m going to find out! I’ll do some training rides beforehand and try to build up my endurance. (Even in my youth, the longest ride I’ve ever done was 50 miles.)

I’ll keep you posted as I learn more!