What I learned about navigating travel anxiety with lupus
Living with a chronic condition requires layers of preparation
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Holidays are either the best or the absolute worst time to get out and travel.
Yes, there’s the joy of seeing extended family, sharing gifts, laughing through photo albums, reuniting with old friends over homemade eggnog and caroling, and making new memories.
But then, like clockwork, concerns arise about what could trigger a lupus flare, whose cold is contagious, and what happens if the first hello hug snatches all your “spoons,” or energy. Any of these things can make the holiday season dreadful.
Things I know; things I wish I’d known
Just maneuvering through a normal work day or a busy weekend requires layers of preparation for those of us living with chronic conditions like systemic lupus erythematosus, Sjögren’s disease, or encephalomalacia. But to travel safely, even more measures are needed.
Photo by Candace J. Semien
Candace Semien enjoys a hot cup of tea and a favorite book during her recent long-distance trip on an Amtrak train. (Photo by Candace J. Semien)
There are obvious strategies for traveling with a chronic medical condition: don’t skip medications, don’t begin new treatments just before or during travel, and keep your routines as consistent as possible. Also, remember to review your emergency plan, adjust it based on your location, and pinpoint who would care for you — physicians, urgent care center, or emergency room — and their distance from your destination. Confirm that your insurance policies are accepted, too.
And don’t forget to seek out and introduce yourself to the local lupus support group, in case you need suggestions for care during your stay.
I recently completed a 21-hour Amtrak adventure for the holidays and during the height of the college semester break (an entirely different animal), and I learned a few new travel essentials.
Register for disability assistance with airlines, trains, drivers, and attractions: Do this whether you choose to use it or not. It is better to not need assistance and have it on standby than to need it and have it unavailable. I’ve resisted being identified as a person with a disability and have learned the hard way that silence prevents service. By the end of my Amtrak voyage, I could not manage my luggage on my own. I should have requested disability assistance.
Bring-alongs: Pack a thermos with a mug for hot tea, packets of hand or foot warmers, and heating pads to calm Raynaud’s syndrome and painful joint locking. Also be sure to include peppermints, lemon drops, and ginger cookies to soothe your tummy, as motion sickness may be a trigger. And because lupus bruises are real, coconut oil or cocoa butter that’s cool or cold to the touch can help soothe them and rashes.
Relax, relate, release: Maintain a steady practice of deep breathing and box breathing to help keep anxiety in check when pain creeps in.
Lastly, always remember that during the holidays, people are “peopling,” so mask up. You should absolutely take every precaution that comes to mind before and during travel. It’s worth the extra effort to keep lupus at bay and have a holiday season full of celebration.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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