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

A writer explains the dual meaning behind her column title

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by Leigh Anne Nelson |

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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.

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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.

Comments

Fig avatar

Fig

I was diagnosed with relapsing remmiting m.s in 2009, in the last 2 years my health has declined quite quickly.
I have balance issues, I trip and fall a lot, my memory has been affected, my fatigue has escalated a lot, I have cluster migraines, severe pins and needles in my feet also throbbing and a burning sensation, my restless leg syndrome has worsened ten fold. I find everyday is a constant struggle, mood swings, anxiety, depression. I have a lot more bad days than good and I find this very hard for my family as I know how much they worry but would never show it. They suffer just as much as me if not more I think.

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Bess Coleman avatar

Bess Coleman

I have PPMS, use a walker, but lately have fallen more frequently. I am reminded, when you speakof using ny vision, that l noticed some time ago that l almost freeze in complete darkness. A very strange feeling, l can't move! It seems more than fear. Can anyone explain tgis?

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Michelle avatar

Michelle

I have PPMS. I am in scooter/wheel chair.
When I was on rollator I wld get frozen if I cld not see something to grab onto, even if it is a wall. Very scary. I often tell people if they put me in middle of football field. I wld sit down
Some don't understand. Did same thing when we moved into new home that was empty.

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DIANA PULLOS avatar

DIANA PULLOS

I went straight to the meaning of balancing our day to day lives. I've had MS (now SPMS) for 42 years, diagnosed at 23
after the birth of my second child (i have 5). I use a luggie scooter. Standing balance sucks but the day to day balance is 'delicate'. I''m still no nearer to getting it right as everytime i have a bad day i think 'this is it, i'm going downhill!" :) but the following day is always better. I think i did well with the children as my youngest daughter when 12 (when we as parents embarrass them the most) took me to school for a presentation on MS, as in 'here is one i prepared previously' :) I'm looking forward to reading your articles. Please give advice on how to not get too down fearing the worst on our bad days.

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Barbara avatar

Barbara

I loved the title because a delicate balance perfectly describes my life still at 84 years of age.

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Leanne Broughton avatar

Leanne Broughton

I love the name 'delicate balance'. That is where I am and have been. My goal with MS was to raise my children with as little interference from MS. I was diagnosed when they were 6 and 9 yrs. They are now 32 and 35 yrs . I am now at SPMS, 26 yrs in and progressing quickly. But I achieved my goal, I attended all extracurricular activities. I was still working earlier. Not only has MS affected my balance but I have been on high doses of antiepileptics due trigeminal neuralgia (severe facial pain). I have fallen many times while on these drugs. New goal - get off all of these drugs. I hate any form of sedation.

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Nancy avatar

Nancy

I would strongly suggest a walking or hiking pole for people with some walking & falling issues. Leki makes a few single adjustable walking poles for under $130.00. They are slim, can be stored easily with a knapsack, in the car, or even a plane and used when you need one. My very first walking aides were my pair of hiking poles which I used for about 3 years. Legs and walking have been one of my main issues, and ataxia - I have to see my feet - need good lighting to walk with my devices - canes, crutches, or rollator. hiking poles are still kept in my car as emergency aides.

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