What does ‘delicate balance’ mean in my life with multiple sclerosis?

The title of my column is “Delicate Balance,” though I didn’t pick that name. I was telling my family about the opportunity to be a patient columnist for this site and mentioned that I needed to name my column. Immediately, my husband said, “The title is ‘Delicate Balance.'”

I thought about his suggestion and agreed that it was perfect. I later asked him why he had suggested it, and he responded, “Because you have horrible balance.” This is true; poor balance is currently my primary symptom associated with multiple sclerosis (MS).

One of my first symptoms of MS was unsteadiness resulting in falls, which has worsened over time. I’ve lost some feeling in my feet, especially my toes. I’m unable to distinguish between my toe being moved up and down. These abnormalities negatively affect my balance.

A physical therapist told me that I rely heavily on my vision to maintain stability. I know this is true, as my balance significantly worsens when I close my eyes or when it’s dark.

If the environment is perfect (i.e., flat, smooth, and plenty of daylight), I can compensate and stay pretty steady. Stairs, hills, darkness, bleachers, and uneven surfaces are my enemies and seriously test my balance. I know my husband was able to come up with the column name so quickly because he’s constantly worried about me falling and injuring myself.

Recommended Reading

March 18, 2024 Columns by Leigh Anne Nelson

My nearly 20-year journey to get my diagnosis of MS

A dual meaning

Yet the phrase “delicate balance” means much more to me. Living with MS requires balancing my daily roles and responsibilities with my illness. This can be a difficult task for many people with MS; it’s one that challenges me often, though others don’t always notice. How I feel each day often fluctuates, and so balancing everything can be difficult and takes lots of practice. I’m not perfect at this task, but I feel like I’ve gotten better over the past few years.

The most important area of my life requiring my focus, time, and effort is my family. When I was diagnosed with MS 10 years ago, my children, then 12 and 8 years old, were very active in school and extracurricular sports such as football, baseball, soccer, swimming, and softball. My goal as a mom was to be present and not miss anything, regardless of how I felt. As a result, I was probably least successful at balancing parenting with my illness.

In general, being a mom can be exhausting, but being a mom with MS brings its own set of challenges. As my children have gotten older and become more independent, managing this area of my life has become significantly easier.

I’m also fortunate to have a wonderful, supportive husband whom I’ve been married to for 25 years and who helps me out immensely. When the kids had conflicting activities, we would divide and conquer. He’d attend activities like baseball games that required one of us to be out in the heat for an extended period, while I’d attend the indoor activity or the outdoor activity with a shorter duration. This helped me manage the fatigue and heat intolerance associated with my MS.

Other important areas of my life that played into the balance equation included my full-time career as a pharmacist in academia, extended family relationships, friendships, social activities, and household responsibilities.

For me, having MS means I can’t give 100% all the time in every area of my life. I am somewhat of a perfectionist, so accepting this about myself wasn’t easy. Over time, I’ve become better at prioritizing activities so that I can do my best and be satisfied with my efforts.

I am pleased that my husband didn’t acknowledge the dual meaning of “delicate balance.” I don’t think MS interfered with my ability to be present and active in my children’s lives, so hopefully the illness didn’t affect them negatively. This leads me to believe that I have actually been successful at balancing my role as a wife and a mom with my illness.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.