5 minute read | December 1, 2020
It sneaks up on me, the muggy heat and humidity in tropical destinations. Or extreme fatigue from long days and thousands of steps in the pursuit of exploring a new city. And then I’m slapped with fatigue that makes me feel like I’m melting, drooping slowly from the gravity. My body becomes heavier, and I’m forced to surrender to it. And whenever this happens around a crowd, even familiar faces, I feel a pang of humiliation, an unwelcome reminder of my fragility. It’s taken me 15 years with Multiple Sclerosis to finally come to terms with managing my symptoms responsibly and not ignoring the telling signs of weakness, especially when vacation time is scarce and ticking.
Since I was diagnosed as a teenager, I dealt with emotional growing pains as well as the pains from this disease. If I was asked about it, I’d blatantly blurt out a vague definition of MS by rote and dismissively joke about it. I knew that explanation like a monologue, “I have multiple sclerosis, a disease of the central nervous system that may eventually lead to paralysis. (…) Crazy, right? But I’m totally okay.” I’d recite it once and never mention it again. They’d eventually forget. It’s invisible after all.
Later on when my disease advanced into Secondary Progressive MS (SPMS), if my leg lagged behind me in public, I’d find ways to hide it; like wearing a long skirt or staying seated altogether. If I was tired, I’d push through it instead of allowing myself a rest. Especially during outings in public or vacationing with other people. And I felt so guilty when I rested; to sit while others had fun or even worked around me; or to ask for help when I needed a hand (literally, for help standing); or to shift focus to my disability and unwillingly become the center of attention; or quite simply, FOMO! The Fear of Missing Out is real, and it’s so frustrating–especially as a young girl when all I wanted was to fit in and find my place in my community of kids. They were out and about, and I often stayed home in a bout of exhausted frustration. Or then stayed napping in my hotel room when my group continued traveling and exploring. But most often, instead, I’d force myself out and push through the exhaustion; and then I’d have to endure punishment from my body thereafter in the form of fatigue, pain, or a numbing relapse.
Admitting I needed to scale down expectations for my capabilities was challenging, and I soon realized I needed boundaries for myself. I’ve had to embrace my abilities and forgive my limitations. THIS IS THE KEY. Embrace the functioning, forgive the struggling. In a courageous act of will, I’ve refocused on solution-oriented techniques to redefine my cognitive and mobility issues, focusing on what I can do instead of what I cannot.
Like for example, I’m currently in Quito, Ecuador; I want so bad to see Mt. Cotopaxi and the nature surrounding it, but I’m also heartbreakingly well-aware that I can’t handle that hike up the mountain. So I have to find an alternate way to experience the adventure. Maybe my adventure includes sipping a traditional, warm Canelazo while I gaze at Ecuador’s beautiful Andes mountainscape instead.
I often get lost in imagining scenarios that never happen, or visualizing circumstances I hope will happen a certain way. I get stuck in that perfect daydream and then, of course, I’m disappointed when it doesn’t quite turn out–but it never does, does it? Traveling with MS requires letting go of expectations of what I think my trip will be like; sticking to a rigid itinerary often leaves us exhausted! A flexible schedule of travel plans ensures that midday nap we may need after that museum tour and before a dinner reservation, for example.
I’m getting better at listening to my body, but it’s a constant struggle of will: what my brain wants and what my body wants are often contrasting. Brain wants to play, Body wants to rest; so I have to find a happy medium. I depend on tools to support my journey along the way, and I have rules I follow to keep myself in check. Searching for solutions to accomplish travel goals makes me feel more in control of my body. Call it a handicap, a cushion, a cheat; but I call it an opportunity to take me where I want to go.
These are promises of MS-focused self-care during travel I’ve made to myself after way too many times I went too far, too hard, too much, too fast:
// STOP SAYING YES
That moment I confidently rescheduled a scheduled tour, cancelled an RSVP, and negated an important invitation to put myself first was a moment of sweet relief. There is always a bit of guilt when answering no to an invitation, but choosing to prioritize my wellbeing benefitted me more than going to that museum, that concert and that party. Traveling is exhausting enough without having a chronic condition, and rest is crucial to enjoy the adventure. Make sure to schedule time for rest; otherwise, getting beat by fatigue is guaranteed to ruin your fun.
I’m usually dragging when I force myself out, and it ends up being no fun dealing with chronic symptoms in public. So instead, I look forward moments of staying in wearing my coziest attire after a long, warm healing bath. Relaxing is what vacation is supposed to feel like. Sometimes, vegging out feels so good, and I’m rejuvenated for a better tomorrow.
// GO PREPARED
Too many times I’ve found myself without the essentials I need to support my body from environmental triggers. I’ve since adopted and developed the bag lady persona: I love to carry tools with me to help carry me in my journeys, especially when traveling. This is what I usually have in my bag:
- A portable fan is perfect for hot days. When hiking, beaching or simply in the warm outdoors, my O2Cool Portable Fan keeps me cool.
- A retractable cane has proven useful sooo many times, even when I thought I wouldn’t need it. Slopes and uneven pavements have caused me often to misstep from imbalance, and having my Switch Stick accessible in my bag helped me get up that mountain.
- A cold water bottle on hand has saved me from a dehydrated slump several times, like in countries where clean water isn’t readily available or in nature where access to a source is a distance away. I love the Yeti Rambler; It’s insulated to stay cool all day long!
- An umbrella will not only shield you on rainy days, but also on overly sunny days. I proudly use my umbrella as a parasol when the sun beams harshly. This one here is waterproof, windproof and protects against UV rays. And it’s super cute.
- Electrolyte packs help keep your energy up when sweat levels are high. You’re bound to sweat in island tropics and blistering desert cities. It’s dehydrating, and water itself isn’t going to cut it. They also help replenish electrolytes when you’ve got the poops from eating in countries whose food is less sterile. Yeah, these energy-packed powder packets help. Trust me.
- ReLeafpack is my go-to is a soft, flexible ice pack that provides weighted cold therapy when I’m aching, tingly and overheated. It perks me up as soon as it touches my forehead, and the organic herbs they use for aromatherapy revive my senses! I got the duo combo that brings a large pack and ReLeafbuddy, a smaller-sized version, to take with me in a cooler if I’m camping or at the beach. It’s vegan with locally-sourced materials, and doesn’t sweat or freeze your skin. Their “World Traveler” pack from their travel collection is my fave, and if you use the code statusgo20 at checkout, you get 20% off; on me! 😉
// PRIORITIZE YOUR FEET
I’ve made this mistake too many times: whether you’re strolling metropolitan streets, hiking steep trails, or walking the mall, good shoes will ensure you can reach greater lengths by foot. Instead of responsibly dressing for practical comfort and safety, I’ve slipped into shoes that were so disastrous for my soles, it hurt my soul. Don’t be like me and go ziplining in sandals or white water rafting in slippery Converse.
- Flats & sneakers are your best friends when you have MS. I’ve officially given up on heels because my ankles give out and my poor balance makes me look like a wobbly drunk. Comfort is beauty.
- Water shoes will save your sweet feet in lakes and rocky ocean floors or when playing in water sports! They’re a must for clumsy toes. These are cute, too.
- Boots are stylish and sturdy. Whether you pair them with an afternoon dress or wear them for outdoor excursions, they’re versatile and ensure happy feet.
- Compression socks are so helpful for preventing swollen legs on long airplane rides and in high-altitude cities. These argyle compression knee-highs are adorable to pair for a preppy look.
A few years ago, I would’ve been ashamed to fashion feel-good tools to keep me cool. I wanted to be the wrong kind of cool, because otherwise everyone else would notice my invisible disability, and I would be outed into having to reveal my most intimate stuff. Because they’ll ask, of course, and I’d have to go into that abrupt script admitting my faults, but if they keep asking I may burst into tears. And no one likes the crying girl at the party. My mind raced with imaginary scenarios that kept me from making healthy decisions for myself.
I’m still learning to not walk the two blocks in the scorching summer, to reject that RSVP when I’m tired, to wear closed-toe shoes, to let someone else handle it. And I’ve tried to acclimate, to make it work, to tolerate my intolerance —but I’m finally letting go of my relentless will to suffer through it to keep up.