RMS Fatigue as a Warning, Not a Challenge By Katy, Wife, Writer, and Yoga Instructor • December 14, 2017
Before life with relapsing MS, there were fewer consequences associated with expending my energy in unwise ways. Staying up too late to hear my favorite bands perform and then squeezing in a full schedule of classes the next day—and maybe even an evening workout—was no big deal. And studying through the night or staying up late to finish an art project were tasks that I was happy to tackle.
I have an insatiable appetite to learn, to do, to try, and to keep showing up. I’ve found that more often than not, I bite off a bit more than I can chew.
If you’re anything like me—even though your character refuses to slow down—you learned the hard way to accept the reality that the diagnosis of relapsing MS makes every action in life take a little bit more energy and time to accomplish.
Learning a valuable lesson
I was 19 and enjoying life as any other college coed would: exhausting myself and embracing the university experience as much as I could.
That was when relapsing MS entered the picture and my aspirations to work and play hard became less important priorities. Dealing with double vision fatigued my eyes and caused a throbbing, aching, nauseating headache. And medications I was given to help manage my discomfort, with the hope of keeping the disease at bay, were making it difficult to focus on much else.
But, after six long months, I got through that first exacerbation, falling to my knees with gratefulness when my vision clicked back into place one afternoon.
Finally, my life was back and I could relax. So of course, I went back full throttle into my familiar habits: studying and working and staying up late with friends. I overcommitted with abandon, and, looking back now, I practically dared my relapsing MS to try and call the shots again.
And eventually, it did.
One year later, the disease took control again. Neuropathic pain in my torso made it uncomfortable to simply breathe. Clothes felt almost poisonous against my skin. My left foot didn’t want to stay in step with my stride. Lifting the blow dryer to style my hair was almost impossible.
At the direction of my neurologist, I switched medications, loaded up with steroids and waited out the intense inflammation. But I still refused to slow down when I began to feel better. Throughout my 20s, the dance continued as I went head-to-head with flare-ups and pushed forward in spite of my circumstances.
With wisdom comes truth
But over the years I have gotten older and, I’m hoping, a little bit wiser. I’ve come to understand that when you have relapsing MS, every single type of fatigue factors into the product of your overall wellness. Lack of sleep, lack of nutrients, and lack of awareness about the need to manage situations that are robbing you of patience or confidence or joy—all of these deficits can play critical roles in your energy and ability to function the way you want to.
When you live with relapsing MS, fatigue in all of its many forms is always lurking around the corner reminding us to refresh ourselves with rest, whether it fits our schedules or not. What I had taken as a challenge in youth, I now take as a warning, and I understand that if we refuse to listen to our bodies, we pay.
I still try to burn the midnight oil and finish the tasks that did not get done at the office on any given day. Even now I am sitting here typing as laundry hums in the background and emails wait in the queue of my professional inbox.
I spent my day in meetings and at my desk, returning phone calls and composing copy. And I rounded out the day with a yoga class, a couple errands, and dinner with my dad and my husband.
Embracing our challenge
I know that I’ve pushed myself, and I’m tired. And that’s okay—it’s 11 p.m. I know it’s time to go to bed and recharge so I can do it all again tomorrow. And I will. There will always be one more load of clothes that I could put in the washer… And a few emails I could tackle to be better prepared for tomorrow… But tonight they can wait.
We all face the same story every day, just with different details. We learn to prioritize. We pick and we choose where to direct our energy. We learn what truly matters. We see the blessings of life’s greatest gifts and we cherish them—our families, our determination, and our commitment to staying strong for one another.
For now, I must say good night, everybody. Let’s go get some rest.
- LIVING WITH RELAPSING MS
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