By Stacie Prada
Each day, week, weekend, season, and year, I like to think about what my goals are. What will I want to accomplish? When it’s over, will I have a sense of fulfillment for the choices I made and how I spent time?
Each season or time of year has a different set of inherent challenges that aging and multiple sclerosis make more challenging. Spring and autumn consistently trigger fatigue and body malfunctioning for me. I blame the weather changes and obligation surges.
Summer brings nice weather that I look forward to and also dread. Summers spent chasing the sun and building a dark tan no longer appeal to me. Basking in the sun feels suitable for moments and not hours. Staying cool and protecting myself from the sun and heat have become the objective. I look back at photographs from gatherings in 90-degree weather, and I can clearly see how I’m fatigued and not thriving. My smile tries to mask the internal suffering I’m experiencing. When overheating wasn’t an issue for me, I didn’t understand why it was so troublesome for others. Now I get it.
With time and more experience with how MS affects my body, I can anticipate how the heat will trigger symptoms that are pseudo-exacerbations. It helps to recognize them as temporary because anxiety and stress can raise body temperature and worsen the experience. Thankfully, I am now less fearful of the loss of feeling in my limbs and the debilitating fatigue that comes on. I am more interested in being proactive about planning for comfort and enjoyment. While pseudo-exacerbation symptoms are temporary and not disease progression, they still aren’t fun and are worth trying to avoid. Symptoms are uncomfortable, physically and emotionally painful, and frustrating.
Solutions are highly individual. It’s all about setting myself up for success before it gets to be a problem. Planning ahead is crucial because it’s not a gradual process of my internal body temperature getting warmer. It increases exponentially and is often too much before I can gracefully exit social interactions. I can go from feeling slightly uncomfortable to not okay and needing an immediate change in a moment. It’s similar to hot flashes associated with menopause, but for me, it differs in duration and lingering symptoms. Fatigue hits hard and lasts. If I wait until I’m overheating to come up with a plan, it’s often too late. I’m not in my best decision-making mind at that point. Having options and pre-planned backup plans make it less stressful to consider options, accommodating my needs and maintaining a polite demeanor.
Planned events require me to adjust to the environment and navigate social norms. How can I dress, use cooling accessories, influence the location to be in the shade, or limit the time where I’ll be in direct sun? Can I do anything to reduce the potential that I’ll be at the mercy of temperatures that trigger my MS symptoms? Can I anticipate challenges and make sure people know I may need to move locations or leave early? Advance notice can help reduce the potential for surprising or offending people.
Unscheduled days allow me to adjust my plans to my body’s needs and limitations. Do I have the flexibility to design my day to best accommodate my wishes and environmental circumstances? Can I reschedule some activities for another day? Will the weather be different tomorrow, later this week, or next? Can I do things early morning or late evening when it’s naturally cooler? The bonus of choosing non-peak times for activities is there aren’t as many crowds. It can be more peaceful and less chaotic. The potential for sunburn is minimized, and I can rest mid-day without feeling lazy. Knowing I already went outside or will go out later in the day allows me to let go of the feeling that I’m missing out.
I look forward to sunny, warm days, but I’ve come to relish overcast weather, light rain, and breezes. They allow me to enjoy being outside without conscious planning to avoid triggering my MS symptoms. Ideal weather depends on my goals and how my body feels, and it changes from moment to moment, day to day, and year to year. Trying to force my body to behave like it did when I didn’t have MS is futile and frustrating. Aligning my plans and outdoor activities with my body’s needs leads to less stress and more fulfillment. While I have resistance to being a bother, usually someone else will express gratitude when I speak up. My issue may be medical, but the desire for comfort is universal.
This summer, my goals are to design my schedule to align activities I want to do with the weather and my body’s preferences, be kind to myself, advocate for my needs, and enjoy all I can still do.
*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/