The holiday season is now over, and for many of us suffering from multiple sclerosis, that’s a reason for celebration. This time of year can present a number of issues for us, from a hectic and exhausting schedule to loud noises at seasonal events. The biggest issue for me, however, is that of traveling to see loved ones. In the past couple of years, taking a trip, even for something that should be pleasurable, has become a nightmare.
Traveling was once something that I loved. I’ve had the pleasure of living on both coasts and exploring everywhere in between. I’m happy to say that I’ve been to many of the states in the US. There is a lot to experience out there, and when I was younger, I wanted to see it all. I’m glad I had many of those experiences because lately, a simple one hour car ride can wreck me for days. It’s gotten to the point where the very thought of sitting in a car can cause such a tremendous amount of anxiety that I can barely function.
So what is it like for me? Well, the first thought that comes to mind is how painful a trip can be. Pain is a pretty common MS symptom for me, particularly in my legs. Typically this pain is a sharp, burning sensation, like my legs are on fire from the inside out. Other times it can manifest itself as a dull, aching type of discomfort. Still other times, my legs will just start spasming and I have no control over it. While I deal with these sensations throughout any given day, they very much come to the forefront when my legs are confined (as happens when you sit in a car or plane). I have trouble getting comfortable in the confines of my own home, let alone in a vehicle. No matter where I am at, I typically shift from sitting to lying to even standing. Sometimes that helps, sometimes it doesn’t, but I at least feel like I am doing something to battle it.
In addition to the pain issues, I am no stranger to one of MS’s worst and most common symptoms: fatigue. You wouldn’t think sitting in a car for an hour or more would have a profound effect on someone but I assure you it does. While fatigue is an issue that I battle nearly every day, it is magnified if I’ve been traveling. I may have some excitement when I arrive at my destination that will keep me going for a few hours, but not long after that the fatigue will start to set in. The day after traveling somewhere can be especially hard. MS fatigue is not a sleepiness (no amount of sleep will help it), your whole body feels weighed down and moving anything becomes exceptionally hard and even more exhausting. It’s very much like fighting through quicksand or trying to escape a giant vat of molasses, and that’s just to even accomplish the simplest of tasks. Just raising your arm to take a drink of water can seem so incredibly difficult. Compounding all that, when you travel, you are normally there to be active (and in this case, “active” can be be as simple as meeting with friends or family), adding more pressure, which only exacerbates the issue.
I’m not sure why I have a worsening of symptoms while traveling. The motion? Vibration? Cramped space? Stress? I’ve spoken to others with the disease via the various support groups I frequent and realize that I am not the only one. Travel seems to take a heavy toll on many of us.
This year, the pain and fatigue I’ve been experiencing when trying to travel have really impacted my life. It’s gotten to the point that, lately, I have been avoiding traveling more than thirty minutes. This has led to missing out on some vital Tysabri infusions, Christmas with my family, and countless good times with friends. That’s how bad it’s become for me, that I’d rather miss Christmas then drive in a car for two hours. When I take a step back and think about it, it seems insane that I’ve driven across the country several times but now such a short drive seems unthinkable.
As always, I do have hope. As I mentioned, I’ve missed infusions because of the drive, but I’ve now found a much closer place to get them. A consistent infusion schedule gives me optimism. I’ve also found a good rehab facility nearby that I plan on working with on a more regular basis. I’m always looking to our great MS community for tips though. I’m hoping this sparks some discussion, do you have trouble traveling with MS? Do you take any special measures?