I was pondering the things in life that so many people take for granted that are just not that simple for someone who lives with migraine disease – managing a job, raising children, finding a doctor who listens, socializing, going to a movie theater, and… travel! There are few more challenging situations than figuring out how to travel when every trigger that you so carefully spend your life avoiding suddenly all merge at once facing many of us with “the perfect storm” for a migraine attack.
Whether your migraine triggers include scents, fluorescent lights, dehydration, pressure changes, time zone changes, sleep schedule interruptions, irregular meals, new foods, noise, or muscle pain, you are guaranteed to face one or more of these if not ALL of them at once. I spent years avoiding travel at all costs – no more flying, no driving long distances, no staying in hotels, no time changes, no strangers who chose to bathe in perfume or cologne, no… well, you get the idea! Basically, just a big fat NO! Then one day I was invited to a patient advocacy conference in a different state that I really wanted to attend, and my stress levels started to go through the roof. Just the thought of walking through an airport let alone sitting on a plane or staying at a hotel where I couldn’t control the environment was causing my heart to pound and panic to build up. It was definitely decision time and for me it was time for change.
One of the common themes we hear in the migraine community is that people feel like they have lost control of their lives. Our bodies don’t function the way we want or need them to. The disease we live with is unpredictable and frequently incapacitating. The challenge of making plans or being exposed to triggers we obsess over avoiding is all too real. But what if, just theoretically, while sacrificing many of the things we love, at times we also make informed and educated decisions to do something that we know will make us sicker? What if WE are the ones who decide to get together with friends, go to a movie, or… travel – knowing that while there will be a cost, the emotional payoff is worth it? Creeping out of isolation for “planned excursions” helps relieve the devastating isolation, helps restore just a tiny bit of a much-needed sense of normality to our lives, and most importantly, gives us back some of that control over our lives that migraine disease has taken away. It’s a benefit versus risk/cost decision, and sometimes, just sometimes, the cost is worth it. For me, being involved in migraine advocacy has transformed my perspective on life and living with chronic intractable migraine, and so I am on a fast-track to learning how to travel into that perfect storm. Part two of this blog will give some tips, so stay tuned!!