Category: MS-Cellaneous

This is Multiple Sclerosis (MS) Awareness Week. I know, I know, it is technically MS Awareness Month. I guess at one point in time it was just one week and was eventually expanded to the full month. MS Awareness and Education (I have been leaving a word out) Month was established by the National Multiple Sclerosis Society in 2003. MS Awareness Week focuses on warriors and their stories. It gives people living with MS an opportunity to discuss their singular experience. If you are unaware, MS affects every single person differently. Often called the snowflake disease. When a warrior shares their story, it allows the world to see all the ways that a person can be effected. Oh and don’t let me start counting the ways.

So here I am, telling my updated MS stories this week. The facts I will be sharing with you aren’t scientifically proven. They are Ebony proven. Which means they are not up for debate. Unless, you walk my walk and live my life, these facts cannot be disproven. And the numbers are also randomly selected by me 🤷🏾‍♀️.

Multiple Sclerosis Fact #147

Carpet is the devil and rugs are its little demons.

I hate carpet and rugs are a close second. I cannot manage to walk on carpet or over a rug without tripping. It is unavoidable. Unfortunately, my walking has gotten worse and I cannot pick my legs up fully to walk. I kind of scrub my feet across the floor. My right is worse than the left. This unflattering and unconventional walking style does not work well on uneven surfaces, things that can catch my feet, and any little area unseen by the human eye. Walking is a concentrated effort. And occasionally I have the nerve to try to walk fast. Never a good idea. Thanking God for all the times I could have hit the floor, but didn’t 😆.

More MS facts to come this week. I will also highlight another MS resource that I hope you will share with any warriors that you may know. I cannot spread the message by myself. I need your help. Stay well and whole. Much Love 🧡 💚

Since this is my final article, I wanted to say thank you – I hope you enjoyed reading the articles as much as I enjoyed writing them! And, thank you again to Ebony for giving me the chance to share my story. Oh, and if you want to connect you can find me on IG @slsalvaggio 🥰

The last MS story has to do with the power of perspective and having gratitude. 

I frequently refer to my MS journey as a rollercoaster ride I didn’t sign up for (but I wouldn’t change it either). The disease has taken my eyesight and the ability to be spontaneous, but it also puts a lot in perspective and reminds me to be grateful, everyday. 

The thing is, chronic disease or not, we all have good days and bad days. If you’re like me, on a bad day perspective goes out the window. Basically, I turn real negative, real quick. “Everything goes wrong. Nothing EVER works out. Of course I messed it up” play on repeat in my head.

Then, all of a sudden my thoughts will be interrupted by MS – part of my face will go numb or my arm will feel wet (but it’s not) or I will trip. And boom, my perspective instantly shifts from being negative to being grateful. Grateful that I can feel my face *most* of the time. Grateful that I have the option to take the stairs, even if I stumble. Etc. Etc. 

I realize quickly that in the whole scheme of things whatever I am being negative about doesn’t really matter. Having gratitude can shift your perspective with anything. Plus, there is ALWAYS something to be grateful for. You just have to find it. You may have to dig a little, but…it’s there.

What are you grateful for at this very moment?

For years after my MS diagnosis, I tried to prioritize physical activity, but having a chronic disease, finishing grad school and planning my wedding made it impossible to maintain an active lifestyle. It all added up and I gained 40 pounds. I was sad and disappointed in myself and the state of my health.

Then came my actual wedding day – I was the heaviest I had ever been in my life. I remember looking at the scale that day and thinking, “Well, everyone tries to look the best ever on their wedding day, and here I am doing the opposite.” After the wedding, I continued to feel terrible physically and mentally.  I just wanted to get back to feeling healthy and happy like how I did prior to gaining weight. 

At the time, a friend had a small fitness studio that held cycling, strength training and yoga classes. I found a class I liked – a calisthenics style strength training class that used your own bodyweight and incorporated exercises I had never seen before. I loved how it challenged my brain in addition to my body. Taking those classes taught me to connect with and love my body in a way I hadn’t before. Over time, I lost the 40 pounds and my mood, sleep, and diet improved too.

The biggest surprise through the entire fitness journey, was experiencing the mental health benefits of being active – I was WAY less stressed and more focused now. I became stronger and more confident in myself, which was beneficial outside of the gym too. 

Now, I am all about finding little ways to add movement to my life. That being said, MS can cause muscle spasms, tremors, numbness, weakness, fatigue, coordination problems, dizziness, depression and more. These problems can occur periodically or be chronic. Between that and life in general, it is challenging to stay active at times. But, there are a few things I have found to be helpful in maintaining an active lifestyle:

It’s not all or nothing. If I sit in front of a computer and work all day and night when I had planned to be more active, I don’t feel guilty or give up completely. I move on and try again the next day. I meet myself where I am that day and adjust accordingly. On the days I have the energy I will park farther away or take the stairs or do a more challenging workout. If I am exhausted, I rest. I’m my own hype girl daily. Sometimes that means I am saying, “YESSSS Sam, feeling good today, let’s do a workout!” Other times it means I am saying, “YESSS Sam, you are doing a great job sitting on the couch and recharging!” Basically, I affirm myself, which helps me feel good with whatever choices I made that day. I’m grateful for whatever I can get. MS DOES affect my life daily. I’ve experienced enough relapses to know the ability to be active can be taken away in an instant. Even if it is a small win like being able to walk to get the mail, I celebrate and am grateful for it! I have fun doing it. If I am going to expend energy on it, it’s going to be fun! I garden, I lift weights, I take walks b/c that’s what works for me. But the options for activities to get moving are literally endless! 

Whether it’s 5 minutes or 50, adding movement to your day may be just the mental break or stress reliever you are looking for. And, now that it is (very slowly) getting warmer out, take it outside and enjoy the sunshine and higher temps. 🙂