The “Steps” of My MS Progression

I “skipped” right through the first 6 years after my diagnosis with hardly any relapses or even symptoms. My then yearly neurologist’s visits were just “jumping through a hoop”, something I was supposed to do. It didn’t feel necessary, “What am I getting from this?” He would always ask, “What reminds you every day that you have MS?” Ummm, I give myself a shot every morning?! He told me there is no such thing as mild MS, but that I had mild MS. I felt lucky.

Well, eventually MS came up & kicked me in the backside…I started to have some symptoms & I began to realize that other issues that I did not believe were MS related, actually were due to the disease. So my luck was “running” out.

Speaking of running…prior to my diagnosis I had always struggled with my weight. Well, that year I was in probably the best shape I’d been in since my 20’s (I was about to turn 40). I was walking a 5k several days/week and even began to add some running. A friend convinced me to sign up for a local charity 5k race & I did. I had never run an entire 5k but there was something about the competitive spirit, the adrenaline, people cheering for you – before I knew it I had run the whole way! I wanted to do more running – this was fun!

My running career never really got “off” the ground. Why not? Because soon after that 5k I started to have trouble keeping my right foot from dragging ON the ground. This was a tough one. The hardest part was admitting it. My best friend who I’d been walking with for over 10 years had noticed my stumbling & tripping on our routine walks but she didn’t know what to say. Finally one day I almost fell on my face and really dragged my foot on the last leg of the walk. I knew I had to tell her that I had drop foot & that I could no longer walk the 3.2 mile loop that had been our routine for so long. It was so hard to say that I did it in a tearful phone call. She was very understanding & supportive, suggesting that we simply shorten our walks.

Fast forward to today. I don’t go for walks very often anymore. One reason is the spasticity in my right leg makes my knee feel like it’s about to give out & that kind of freaks me out. The first time it happened I was pretty far from home with only my dog for company & I was afraid I might not make it back. I just started to cry as I kept pushing my left foot forward & throwing my right leg out, hoping this combination of awkward movements would get me at least back in my neighborhood. Maybe then I could flag down a neighbor driving by & get a ride back to my house which at that moment seemed so many steps away. When I finally made it home I just cried even harder & then began researching this new symptom of spasticity.

Of course there’s also fatigue that keeps me from going for walks too. Everyone has their excuses for not exercising, right? I’m too tired. No, I’m TOO tired. If I walk first thing in the morning I’m pretty much done for the next several hours. And to be honest I’m afraid to go out & walk. What if my leg really does stop working mid-walk? It hasn’t happened yet but it could. The few times I’ve ventured out recently I’ve stayed close to home & brought my cell phone. Just writing this has brought me to the realization that my days of walking for exercise may really be over & that is something I will really miss. I already miss it. Must adjust, must adapt.

Adjusting & adapting unfortunately also applies to shoes. I like to look nice when I go out socially & sometimes that involves getting dressed up. As of last year that also involved high heels; 4 & 1/2 inch sexy designer heels that I wore to a wedding last summer. By the end of the night I was apparently walking so poorly that friends were talking about me to my best friend, who called my husband the next day out of concern. To say that I didn’t take this well is a gross understatement. The following month was another wedding with the same friends, but not the same 4 & 1/2” heels. I shopped far & wide for a low wedge heel that would be dressy enough but comfortable to walk and dance in. I found some by the same designer as my sexy heels but these didn’t look or feel sexy to me. I felt defeated. (No pun intended!) When I expressed my disappointment about the “practical” shoes, my husband helped lift my spirits saying “I’m not looking at your feet!”

Two more weddings this summer…even the low wedge heels are too risky. It’s flats for this girl. Foot hugging, elastic-strappy, no slip, no slide flats thank you very much. I’ll stop short of saying I don’t care what they look like because I do. It is possible to find pretty & comfortable flats -it might not be easy but it is possible! So when you find some, get them in every color!

The steps of my progression can be counted in the gradual decline of the function of my leg, the gradual decline in my walking routine, or the gradual decline in the height of my heels. Mostly these days the steps I’m counting are the ones between my parking spot & the store entrance where I can grab onto a shopping cart!

Theresa Calabrese 8/10/15

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Comments

View Comments (4)
  • to9scu
    4 years ago

    thank you for posting this – I am going through this right now and am trying to find a physical therapist that could assist with getting some strength back into my legs. I used to walk 1.5 miles to work and back each day but now I can barely make 1/2 mile without feeling like my legs are going to give out on me. I am down to wearing sneakers every day as shoes just do not work for me. It is so upsetting and it bothers me that I cannot do like I used to. I am only 48 years old and am considering going out on disability….

  • Theresa author
    3 years ago

    It makes me glad & sad at the same time that others can relate to my story. Of course I don’t want anyone to suffer the difficulties I am experiencing, but it is helpful knowing you’re not alone. I hope the physical therapist is able to help. I’ve been trying to incorporate yoga into my routine to build some strength & I really like it. There’s even videos on You Tube that are “Yoga for MS” if you want to give it a try. The shoes continue to be an issue for me…I wore the same Crocks sandals all summer & now that the weather is changing I’m not sure what to put on my feet! I’ll be glad when it’s cold enough to wear my tall boots which are comfortable to walk in AND stylish. I just turned 49 and I get how you feel – it’s frustrating to not be able to do the things we used to be able to do. All we can do is stay positive & focus on all of the things we still CAN do. If you must go out on disability there’s no shame in that. Find what makes you happy.

  • JULIE SAVENE
    4 years ago

    Thanks for the great perspective! I too am declining. I can relate to the shoes-I got an AFO( ankle foot orthotic) 5 years ago for my foot drop and I had to give up my cute sandals for tennis shoes. I also gave up hiking & backpacking(Boy Scouts) even bike riding because my right leg couldn’t make it back to the parking lot.
    I have declined so much in the last 3 years that I have even gone from nothing-cane-walker to sometimes a wheelchair, but it has not stopped me! I still go to work greeting people with a smile (no matter how I am feeling that day) and I am told I inspire others just by going to church every week with my husband. So keep smiling ! Keep moving ! Keep dancing !

  • Theresa author
    4 years ago

    Thanks for your comment! I love your attitude! Adjusting to the changes in mobility can be depressing and it is ok to grieve the “loss”. We know that we must go on, so why not do it with possitive attitude?! People don’t want to be around a grump! I too just smile through the pain, & do what I can to keep being socially active. I shared the link to my story on my Facebook timeline and was surprised that many friends didn’t know I had MS, and the ones that did made comments about my positive attitude. Relating to peers like you is something that helps keep me going! Thank you Julie!

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