This post is written by Sherri Odell who has recently been diagnosed with myasthenia gravis.
I recently returned from a 30-day trip to the Canadian Rockies and Alaska, where I had to not only navigate unfamiliar roads and territory, but a recent diagnosis of Myasthenia Gravis, as well. My husband and I had begun the planning of our adventure over a year ago – with plans for not only long hikes through various national parks, but several strenuous kayak rides on fog-enveloped glacier lakes….Those plans came to a screeching halt when, after several weeks of testing, I heard the words, “Don’t be alarmed – but you have Myasthenia Gravis,” spoke to me by a neurologist in mid-March. The fact that I was feeling like I was carrying 10-pound bowling balls in each arm, and could barely muster more than a mile or so of walking at any given time – was a wake-up call that I needed to revisit those plans, and learn how to travel – successfully – with this new reality.
What follows is what I did, and how I did it, that helped me to have one of the most amazing, memory-filled vacations of a lifetime. I wasn’t going to let MG stop me – but I knew I had to be smart – so that my physical being, as well as my emotional and mental well-being, didn’t become overwhelmed on the trip.
1. The first thing I did was revisit our planned excursions for each day – and honestly evaluating whether I would be up for it, physically. This meant that those long hikes through the forests became more manageable 1-mile hikes, at the very most. Kayaking? Forget it. Even on a good day now, that is not happening…I knew my arms would not be up to the challenge, and so I contented myself with enjoying the beautiful views alongside the lakes’ shorelines. Lots of planned hikes, tours, excursions, etc had to be modified to accommodate my new reality.
2. Speaking of hiking – my “old” (pre-MG diagnosis) hiking shoes were heavy…I realized that I would fatigue fast & furious if I took those along…so after much research, I found a pair of very lightweight waterproof hiking boots that were comfortable, and didn’t tire me out with unnecessary weight. Those shoes were awesome, and felt like I was walking on a cloud.
3. I packed a collapsible cane in my backpack – it went everywhere I did, and came in handy when I needed it for either stability issues, or when I became fatigued. I named my cane, “Sugar,” (as in Sugar Cane??!!), and Sugar was a much appreciated lifeline.
4. My husband was gracious enough to carry a collapsible stool in HIS backpack – and if any prolonged standing was on the agenda (guided tours, etc), it was quick and easy to whip that stool out so I can sit, rather than be on my feet.
5. I took frequent breaks – if we weren’t actively touring or hiking, I would take advantage of the “down” time to literally lie down – on a sofa, bed, or back seat of the car – didn’t matter. I needed these breaks to recoup and gather my strength back.
6. As much as it pained me, I was careful with what I was eating – as well as drinking. Previously, I would use the excuse of being on vacation as a way of indulging in all the foods, and all the drinks. Not this time. Knowing that because of my MG, I often begin the day with my “gas tank” only half-full to start with – I was careful of the quality of “gas” I was putting back in my tank. I didn’t overindulge in fatty, or high-sugar foods or drinks; I tried to stick to my healthy diet as much as possible, knowing this would help my body, both physically and emotionally.
7. Speaking of emotions – I tried to have the point of view of being in the moment during our adventures – and not stressing about things I could not control. Weather? Can’t control it – can’t do anything about it – so I rolled with the changes without worrying about it. Stress takes energy, and I told myself I wanted to save my energy for things under my control.
8. I made sure I had plenty of medication before the trip, and I made sure that it was packed ALWAYS with me – which meant in my backpack. I couldn’t risk being separated from my suitcase and not having access to a much-needed pill – so my meds were treated as importantly as my passport and money.
9. After each day’s adventures, I would be tired – and so I knew that sleep would be extremely important to refresh my batteries each day. I packed whatever tools I thought I might need to make sure that sleep was not an issue. In Alaska – during the summer – constant daylight can cause sleep problems…knowing this, I packed an eye mask to black out the light during the evenings. I downloaded a “white noise” app on my phone, which came in handy in loud or noisy hotel rooms. And a nice, long hot bath or shower was the perfect precursor to going to bed each night.
10. Finally, I packed a medical card that explained not only that I have Myasthenia Gravis, but what MG is – and isn’t. This was a “just in case” item – but it actually came in handy during a visit to an Urgent Care center in the middle of Canada (not MG-related, but a gastrointestinal issue. I’m fine, now!)
We had an amazing trip, and although we definitely had to modify things to accommodate me and my new reality, it all turned out well. Having good attitudes, and being willing to be flexible and face reality when needed, definitely helped us each day along the way.
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