Let me start by saying, in some ways MS has changed my life for the better. It has taught me to slow down, to savor every moment I spend with my smiling children, enjoy every spin class I attend, and relish long dinners with my husband. But I can’t deny that MS has also taken away part of my spirit.
I always feel a bit guilty sitting in my neuro’s office complaining about my symptoms when I keep being told my MS is not that bad. People around me say, “Well, you look great.” Or, “It could be worse.” And my favorite, “At least you won’t die from it.” Sometimes I feel like everyone, including me, is so busy trying to be positive, they lose track of how they really feel.
In my house we don’t call MS multiple sclerosis; we call it mostly sucks. ‘Cause you know what? It does SUCK — and it’s absolutely freaking okay to admit that! While I know I could have much more disability with MS, having constant, consistent pain while raising two kids and running a household is not easy. It’s not driving me to be a better person nor is it teaching me to like pain (trust me, leg spasms in the middle of the night are not fun). It’s not making me love every minute of my life or enjoy the fact that most days my arms burn, my feet tingle, and my brain forgets. Reality is: MS mostly sucks.
So there you have it, people. I am not that person who will stand up and scream from the rooftops, “Yay for freaking MS! Thank you for changing my life!”
There is a popular song by Sara Bareilles on the radio that’s chorus is, “Say what you wanna say/ and let the words fall out/ honestly I wanna see you be brave.” It’s a beautiful, inspiring song that hit home with me because I continuously back down on what I say about MS. I don’t always express my thoughts about it or how I physically feel because I may not be as “bad” as other MSers or I haven’t been sick for as long.
I have never been a person to walk on eggshells in life, but for some reason I have a hard time talking about my MS. Maybe because not too many people understand it or they make assumptions about it. If you do not feel well, and you know you’re not feeling normal for you, don’t hold that in. That will not make you feel better, not even a little.
Bottom line: Say the things you want to say about the disease and how you honestly feel, not what you think you should feel. It’s okay to feel bad some days. It’s okay to be sad. It’s okay to be annoyed by feeling like you have to explain everything about MS and why one minute you feel great and the next minute you feel awful. It’s okay to wish you never had to deal with this disease at all! AND DO NOT LET ANYONE TELL YOU OTHERWISE. Being honest with yourself is good for the soul!
Okay, sermon over. 🙂brave, MS, ms symptoms, multiple sclerosis, music, sara bareilles