In 2014, I visited France for the first time. I went to Sainte-Chapelle at the recommendation of a neighbor who raved I needed to go when I visited Paris. It was incredible. The gothic architecture of the building relies on a web of supporting arcs that creates a pattern like no other I’d seen before in real life. It was awe-inspiring. I’d been told the main floor was beautiful and the upper floor exponentially more incredible.
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| Upper Floor Sainte-Chappell, Paris |
At the time I recall there was construction and signage indicating only one way to access the upper floor. As I climbed the tightly curved, narrow and steep stairway, I experienced a visceral moment that had me choking back a sudden sob. My thoughts flashed to friends with mobility issues that would not be able to navigate this route. I realized that this is something that someday I will not be able to experience. In that moment I felt profound grief for what I haven’t yet lost - the ability and freedom to go anywhere without my body limiting me.
In that moment, I told myself to pull it together and let my sorrow sit for another time. My neighbor was right. The upstairs chapel was breathtaking. I was there, and I was fortunate to be there.
It hit me hard that I should think realistically about the things I want to do in my life that I may not be able to do someday as my Multiple Sclerosis is likely to progress. It motivates me to figure out what discourages me from doing things now and what I can do to accommodate my desire to travel and spend time with faraway friends.
If it’s money, I look at if there’s a way to do it that would cost less. If it’s time, I look at ways to adjust my schedule and streamline my commitments.
For my MS symptoms, I look for ways to make travel easier and less disruptive to my good health habits. I pay attention to what takes effort. I anticipate what would be difficult as my limbs lose strength, agility and endurance. I notice what causes me stress, because being anxious takes a lot of energy that I don’t have to spare. Trying to remember what needs to be done or if I did something can get exhausting. MS Fatigue sometimes discourages me from even attempting things that are a change of routine.
I tackle the challenges of my invisible MS symptoms from a lot of different angles. Lists help me immensely to eliminate wasted effort on tasks I need to do every time I go somewhere or do a specific activity. I streamline my self-care routines so that I’m able to do them when away from home. Simplifying what it takes to pack and leave my home vacant lessens the stress and effort it takes to get away. I pay attention to air travel restrictions, schedule travel to minimize disruption of healthy habits, and bring snacks that don’t sabotage my dietary preferences.
Create Reusable Lists: Minimize the decisions needed to pack and get out the door. Make sure the lists are easily accessible and add to them each time they’re used:
- Packing lists for clothing, medications, toiletries, and makeup so that I won’t forget important things that would be difficult or time intensive to replace away from home. Look at the list when I come home, add what I needed and didn’t have, and subtract what I brought and didn’t need.
- Leaving home list: What needs to be done to close up my house and be gone? Mine includes fill up the car’s gas tank, take out garbage/recycling, change sheets, do laundry, close windows, tell neighbors, confirm toilet isn’t running, turn down thermostat, turn off Wi-Fi, water plants, and have food in the pantry and freezer ready to cook quickly and eat.
- Coming Home list: My list includes turn on router/Wi-Fi, pull food from freezer, tell neighbors I’m home, check the thermostat and unpack.
- Activity lists for hiking, swimming, biking, jogs/walks: I have some dedicated bags with everything I use for a specific activity. For swimming, I have a bag with a towel, goggles, swim cap, ear plugs. For quick hikes I have a backpack with pepper spray, multitool pocket knife, wet wipes, and a ready to fill water bag. I have a hiking list to help me pack my backpack quickly and not worry about forgetting anything when I decide on an impromptu hike.
Streamline my home life and self-care routines so that how I live at home easily adapts to being away.
- Keep makeup and toiletries minimal and store them in cases that I grab and go.
- Use online banking and stay current with bills so that I don’t have a huge amount of work to do before I can leave.
- Organize medications and supplements in single serve packaging that’s ready to take with me.
- Create a daily fitness practice that includes stretching and strength movements that can be done anywhere and don’t rely on equipment, location or good weather.
- Have snacks on hand that meet my dietary preferences and I can bring with me.
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| Medications and Supplements - one week's worth |
Know the rules for flying and getting through TSA. For a long trip, my injectable medications can take up the entire allotment for carryon liquids. When I took a 3.5-week trip to France, my daily injections took up the entire quart bag a person can carry on a flight. It can’t be put in checked luggage, because it needs to be kept between 59 to 86 degrees Fahrenheit. I also can’t risk having my luggage lost and doing without my medication. I planned ahead and put all of the rest of my toiletries in my checked baggage. Guess what? My luggage was lost and traveled to two extra cities. I had to make do without my luggage for three days. During that time in the middle of summer, I’m sure my luggage endured temperatures outside the acceptable range. I also had no guarantee that my luggage would meet up with me again. Because my medication was in my carry-on bag, I at least didn’t need to worry about doing without and thousands of dollars’ worth of medication going to waste. Luckily, I was with my sister who loaned me clothes and toiletries until my luggage was delivered to me.
My supplements and pills are put in small baggies labeled AM and PM. I really don’t like pill boxes since they’re bulky, and they usually only hold enough for one week. With single serve baggies, I can easily take one to breakfast and take them with food. It’s much more convenient and discreet than bringing a large pill container in my purse. Because I worry about TSA not liking that my medications aren’t labeled, I pull the labels from my prescriptions and put them on an index card to include with them.
Scheduling: To make sure I don’t skimp on sleep, I’ll schedule full travel days instead of taking the red eye. No longer will I get up super early in order to avoid “wasting” a vacation day. It works best for me if I schedule a day off at home to prepare for the trip before I leave and another the day after I get home to recover and readjust to home life before going back to work. It feels indulgent, but it makes for a trip that won’t overtax my energy and is less likely to trigger an exacerbation. It’s also allowed for breathing room when my flight was delayed a day due to weather. The cushion day allowed me the luxury of not disrupting or missing work obligations. Even more importantly, it eased what could have been an extremely stressful experience that makes my MS symptoms act up.
Being responsible for my health takes a lot of effort. When I’m experiencing MS symptoms and feeling like things could take too much effort, a streamlined and organized life will help me be less likely to say no. I need to be strategic about what I do, how I do it, when I do it and how fast I do it. I won’t have the energy to muscle through things and recover afterward without consequences.
I’d love to be low maintenance, but I’ve found my health does better when I pay attention, plan ahead, budget my energy, and build in rest and recovery. All of that requires an embarrassing amount of attention and planning. I get irritated with myself that I’m so high maintenance, but I didn’t cause my disease. It takes what it takes to stay healthy and participate in life. All of this effort eases my stress level and makes it possible for me to change my plans when opportunities present themselves.
P.S. I’ve since learned that since the renovation efforts, the upper floor of the Sainte-Chappelle is accessible for people with disabilities via an adjacent building with an elevator and ramp. I’m glad for the efforts of many to make historical places accessible to and enjoyable by all people, whether it’s accommodating mobility, hearing or visual impairments.
