Traveling with Sjogren’s

I am home, unpacked and freshly showered after a six day vacation. I have plenty of stories and photographs to share. I haven’t written since before I left six days ago either for my blog or for one of my various other projects. My plan was to wait until I was more rested but I miss the writing. I caught up over the past two days with Facebook and the blogs I regularly follow. There was a post on the Sjogren’s Syndrome Foundation Facebook page by a woman asking for tips on how to travel with Sjogren’s Syndrome. I am by no means an expert, but over the past year and especially this past week, I have discovered a few helpful hints to make traveling just a bit easier for those of us who struggle with this crazy autoimmune disorder.

Anyone who follows my blog regularly or knows me personally is well aware that I have become an advocate of flying by the seat of my pants when it comes to traveling and life in general lately. No hotel reservations, unplanned road trips, the list goes on and on. This actually works better for me than my old way of planning because most of the time, I never know from day to day how I am going to feel.  However the ONE area I plan whether I am going away for one night or for six is in the traveling/vacationing department so I can make sure I have everything I need to manage my illness. These are tips that I have personally found to be useful:

* Make a list so you don’t forget anything.

* Bring an extra supply of important medications such as inhalers and steroids. You never know when you are going to get stuck somewhere and that way you can avoid the hassle of transferring prescriptions and calling doctors while on vacation.

* Make sure to have a written copy of your medications on you in case of emergency. Don’t rely on memory, especially since you may not be with the program enough to recite them back if god forbid you are in an emergency room or ambulance. Or if you have brain fog like I sometimes do.

* Whether it is by air or by land, traveling is exhausting. Sjogren’s sufferers need rest and lots of it, even when they are in their normal routine. It is very easy to get caught up in the excitement and the on-the-go momentum of a trip or vacation. Try to break up your days with rest periods and keep to your usual sleep habits. Reality is if you don’t get the rest you need, you are going to have a flare and/or burn out before the end of your trip

* Try to keep a routine on your trip when it comes to your medical needs. I have a very specific morning and bedtime routine at home and I try very hard to keep this the same when I am on the road. Examples of this are taking my medications on schedule, eating at my regular meal times, using warm packs/massage for my salivary glands. I do this because if one thing is missed, it can be a catalyst for a flare.

* Be aware of your environment. One of the biggest enemies is dryness and it is found everywhere. From airplanes to dry climates to hotel air conditioning, oftentimes our surroundings when we are on the road are less than ideal. Bring moisturizers for everything-your eyes, nose, lips, skin, mouth, etc. Remember that you are not always on control of your climate like you may be at home.

* Protect yourself from the sun. I am not sure how many Sjogren’s sufferers out there have issues with the sun like I do but it is significant enough for me to mention it. I have very fair skin to begin with and have always had to be more cautious in the sun than the average person. However since my Sjogren’s symptoms started, my sun sensitivity has increased ten-fold, at least. I can get a rash and/or sunburn with just five minutes of sun exposure and no sunblock in July. So protect yourself. Frequent sunblock is a good start but if you are like me, it is not enough. Just being in direct sun for too long causes symptom flare up so plan activities accordingly. Seek shade whenever possible. Hats, sunglasses, and bathing suit cover ups are a necessity. Try to avoid the sun from 11am-3pm which are peak exposure times.

* Water is your friend. Drink lots of it. One of the reasons I prefer road trips to flying is because I can leave a case of bottled water in the trunk (cheaper too) and stay hydrated. Once my body doesn’t get enough to drink, joint pain, difficulty breathing and the like are right around the corner. Invest in a travel cooler. I found a soft lightweight medium sized one with a shoulder strap that holds about twelve sixteen ounce bottles plus ice. It goes with me anytime I am away from home for more than one day.

* Bring a humidifier, even though it may be a pain to transport. I use a humidifier every night at home and I have tried to travel without it with poor results. Hotel rooms are notorious for being dry and changes in weather/climate can make dryness symptoms even worse. There are travel size humidifiers on the market but I had a disastrous experience with one last year and have found it easier to bring my one from home which I am in love with anyways.

* Keep a Sjogren’s kit of essentials for your purse, overnight bag, backpack, etc. I have found that it makes it easier when traveling to have a small kit that can be moved from place to place easily. My essential items include a single square pill holder big enough for several Motrin and emergency pain medication. It also holds a bottle of eye drops, lip balm, sugar-free lemon drops, gum, small tube of saline nasal gel, tissues, travel size bottle of sunblock, a rescue inhaler, and hand sanitizer.

I am very interested in hearing reader’s tips for traveling with Sjogren’s Syndrome or any other chronic illness. Please post any suggestions on the comment section below!

Photo: Courtesy of Chuck Myers

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