Friday, January 13, 2017

Wearing the Pretty Shoes While I Can and Experiencing MS Milestones

I saw a t-shirt once that said, “There will come a day when I cannot do this. Today is not that day.”

It holds true for everyone, but it’s especially poignant when living with a chronic debilitating disease. Disability may be inevitable for me. But it may not.  I can stave off these MS milestones as much as possible, but knowing that I may not be able to do things in the future motivates me to do what I can now.

I hit a frustrating MS milestone this week. I wore the absolutely most beautiful high-heeled shoes I’ve ever owned to a formal event. In hindsight I can see that after three hours of socializing and dancing that my feet cramped, my nerves quit firing correctly, and my MS symptoms took over. Usually the impacts are subtler. This time there was no mistake that MS had caused my ankles to buckle repeatedly. I could tell that my feet weren’t staying put or moving on command any longer. While standing still, one foot started to turn under against my will. I paused, tried to regroup, and took a step.  My right ankle buckled. I took the arm of a friend who supported me. I paused again to regroup and thought I could will my feet to cooperate. I took another step, and my left ankle buckled under me. Again grabbing my friend’s arm, I steadied myself and tried to regain composure. After a moment, I moved forward and both of my feet buckled. Then I realized this was MS. This was my MS, and no amount of will would override my feet not functioning.

Holding my friend’s arm and with her other arm around me, I steadied enough and realized I needed to remove my shoes. My ability to wear them that night was done.  I removed my shoes and walked barefoot to keep up with my friends. It took walking a distance of ten feet or so before I felt my feet would be able to cooperate again. Fortunately, my ankles weren’t giving way anymore. It was another hundred feet before my feet stopped spasming.

Practically speaking I think this tells me that I can wear high heels for walking and standing, but dancing in them may no longer be a good idea for me.

I was slightly embarrassed that people seeing me stumble may think I was drunk. I wasn’t drunk, but it’s a reasonable conclusion given the venue and the party atmosphere. Once I’d moved on to another area of the party, I figured people just assumed my shoes were uncomfortable and I was carrying them because I didn’t want to walk in them anymore.

I realize people may think that it’s not a loss to not be able to wear high heels. It’s true that I can have a wonderful life wearing flats. It’s also true that some people have no interest in wearing unconventional, impractical shoes. But to me there’s a difference between not choosing to wear them and not being able to wear them anymore. Yes, people may judge me as self-sabotaging with this, but I think with all life lessons we do what we can until we can’t anymore.  How we find out we can’t do something anymore varies, and sometimes we require numerous opportunities to learn the lesson before we change our ways.

I will keep wearing the impractical shoes when and where I can. I will also start looking for beautiful lower heeled shoes that still make me feel special. I’m glad I made a conscious effort after I was diagnosed with MS to start wearing shoes that were fancier and less practical. I want to take the opportunity to do things and be who I want for at least portions of my life. I think it’s better to have done it and remember having done it than to regret never trying.

This is bigger for me than the shoes. It’s an indicator of the many things I may lose as I age with MS. I know the risks, and I’m taking the chance even when it triggers symptoms. It’s walking a fine line of doing what’s good for me and doing some things that may be physically difficult but emotionally nurturing. I already feel older than my years given I deal with daily inconveniences that people I know 10-20 years older than I experience. I don’t want to give up things until it’s clear that it’s best for me or the consequences become too great. For me the consequence of triggering a pseudo exacerbation, where symptoms act up but no new disease activity occurs, are acceptable. Reflecting on this experience leads me to believe this was a pseudo exacerbation. I know this because the symptoms were temporary. While my fatigue and stress levels have been elevated for some time, I've been able to keep them manageable with lots of self-care.

Pushing myself to the point of triggering an exacerbation with new lesions is not worth it to me. Knowing when my actions are one or the other is tough to discern, but it gets easier each year.  I pay close attention to my body and how it responds to what I do, eat or think, and I think I’m able to tell the difference now. And throughout this life journey, I’m going to enjoy each step of the way, recognize limits as they emerge, and adjust as I can. But I’m going to make a special effort to do a lot of things now that I may not be able to do someday. So far, today is not that day.

Read Wearing the Pretty Shoes: Part II for more on shoes.


  1. You wear those shoes as often as your feet and ankles will cooperate because sadly your right, there will probably come a day that you can no longer wear them. I've worn my share of heels but those days are over. Then came the days of dressy 1-1&1/2 inch heeled shoes but sadly those days are over. I'm not to the point of the ugly medically suggested shoes, I now wear mostly tennis shoes or cute flat shoes but they have to have like a strap or something over the middle of the top of the foot, just in case my foot doesn't pick up or it drags, my shoe is still with me. I don't know how long you've been Dx'd with this MonSter, but me and the MonSter have been together for 27 years and that creep has taken so much from me. But I've had many blessing along the way also, extra time with my kids, learning to say "no", realizing who my REAL friends are, and becoming a stronger person who can help others by being there when no one else really understands.
    Dance as long as you can, no matter what kind of shoes you have to wear.

    1. Thank you so much for validating my feelings about enjoying them now! It helps to hear from people who've passed these milestones before I have or will. I'm glad you see the blessings along the way, and I truly appreciate your advice!

  2. Hi Stacie, Yes wear any shoe you can that you love for as long as you can, maybe you can stay w/what you're wearing now, you never know. There is always Hope. I was a heeled shoe person also, OMG, beautiful skinny heels for every outfit. My first obstacle was a bad lower back (b/f being dx'd w/MS) and all I could wear were good sneakers, but then I found a brand of sandals that I was shocked I could wear(after dx'd w/MS,25 yrs. w/MS, but dx'd 20 Yrs ago). So excited to be able to get away from the sneakers. Fit Flops( have great support for my back and they have added all kinds of styles that I love and wear, not the elegant high heels, but I love that I came across them. They have great support for both my back and stability for my MS. It's so difficult to have to try so many brands to see what works when you are forced to change what you truly love to wear and every other aspect of our lives w/the MS. I also feel truly Blessed to be able to do what I can, even though it does b/c a challenge almost everyday. I am still very happy w/what I do for that day. Stay as well as you can. God Bless.

    1. You're so right, Leslie! I also feel very thankful for all I can do! That's terrific that you've found an alternative for you that works. I'll definitely look them up. Bless you too, and best wishes for you!

  3. I like your post. It is good to see you verbalize from the heart and clarity on this important subject can be easily observed... best tennis shoes for standing all day