Traveling with Lupus

This week we’re out on a huge road trip to the Red Centre of Australia. Over the course of 6 days we’ll be traveling over 2,000 km by bus, camping out under the stars in swags most nights, and doing a lot of hiking and exploring during the day when we aren’t on the road. I thought that this would be a good opportunity to talk a little bit about what it is like to travel as someone with Lupus.

If you don’t know me in real life, you probably don’t know that I have Lupus, an autoimmune disease where my immune system has a glitch. It mistakes my own cells, tissues, and organs for foreign germs and attacks them. I’ve been in remission for 13 years now, thanks to some aggressive medical treatments in my 20’s, and a hell of a lot of stubborness and joie de vivre on my part. But even in remission, those of us with Lupus can be prone to flares. Usually, my flares are caused by letting myself get run down, pushing myself too hard, or if I have an injury or fall. Long car rides and plane trips, or anything else that leaves me stuck sitting for long periods of time, can be another thing that runs me down and brings on a flare.

At this point you are probably wondering to yourself how crazy was I to take on this trip because that sort of stuff happens to us all the time on the road. But the fact is that I love traveling and all the stress and challenges that come with it, from learning my way around new places on a regular basis to navigating cultural differences and language barriers. For me, chosen stress is never as hard on my body as the kind of stress that I don’t get to choose. So the mental stress of traveling is much easier on me than work stress has been in the past.

It’s the hardships of being on the road, from being stuck in a car, train, bus, or airplane for long periods of time, to uncomfortable hostel beds, to running myself down having adventures that really gets to me and brings on a flare. So we try to manage those hurdles in lots of ways. What do we do? Well, we do lots of things:

• We travel with a tennis ball and a list of stretches and exercises for stiffness and muscle aches
• We get regular exercise. On the road we do a LOT of walking and hiking. But we also do strength training when we have the time and there has been a lot of swimming lately as well.
• We eat well, regularly, and mostly healthy foods that we prepare ourselves.
• We stay hydrated. This is always a sticking point for me. I’m prone to dehydration and easily forget to drink enough water. Kyle is awesome about reminding me.
• We try to get a good night’s sleep every night and maintain a regular sleep schedule while on the road. A good travel pillow, sleep mask, and ear plugs are also essentials that you can’t live in hostels without.
• We also schedule in downtime. Whether it’s a hike to break up a long road trip or scheduling out larger blocks of downtime where we just chill out in our hostel for a day or two, we make sure there is always a time for rest, napping, and time to catch up and soak up everything we’ve experienced.

As you can see, most of these are easy things to do and they make a huge difference for me.

Our road trip around New Zealand was amazing, but it was also fairly demanding, both physically and mentally. Even though we were lucky enough to travel much slower than most (we took 2 months where most people only take a month), we often felt like we were racing through it. So we scheduled two weeks in a rental apartment in Christchurch at the end of our road trip. This gave us the time to recuperate from 56 days on the road. And what better place to recover from our mad dash around New Zealand, than in a city undergoing its own recovery?

I’ve been lucky. We’re celebrating 8 months on the road this week and I haven’t had a single flare.

More on our time in Christchurch, a city still recovering from the earthquakes of 2011, coming soon.