Multiple Sclerosis sucks…that’s my reality

Can I be real for a moment? No pretense. No hiding behind broken smiles or covering up the reality of what life is like for a person with multiple sclerosis. No complaining. No whining. Just the open and honest truth.

MS sucks. There are times when it’s not quite so “sucky”, but it still sucks. I have lost friendships, jobs, feeling in multiple parts of my body, vision clarity, my independence, and even my mind at times. There isn’t any part of my life MS hasn’t touched. I have to admit, it’s quite thorough in messing around in all aspects of my life.

Telling the truth about what is going on isn’t me not being positive enough. Denying the reality of what is happening isn’t the solution either. Sure, it may make someone looking in on my life feel better but I am not here to make someone feel better about my reality. I’m tired of covering up my pain just so someone else can feel better about themselves.

My reality is just that…it’s real. Just this morning I have already had a shower. Not because I needed one to start my day but because I didn’t get to the bathroom quick enough and ended up making a mess in my pants. I only get a few seconds notice that I need to make my way to the bathroom and this morning, well, I needed a few more seconds to be able to transfer myself onto the toilet.

Messes happen a lot with MS. When I’m not having bathroom mishaps, I’m fairly adept at dropping anything I get my hands on. That means that I leave a trail of messes all around the house. I think I’m worse than a toddler in being able to create messes that no one thought possible. I even use a bib when I eat so I don’t drop food on my shirt.

Those brochures of the person with MS smiling and energetic as they walk around the country…fake. If they were to put real people in them, sure we may be smiling, but we would be doing so with the aid of walking canes, walkers, wheelchairs, ice vests, and leg braces. Why hide those things from the world? I just don’t get it.

I won’t pretend that life is great when it’s not. I won’t hide my truth. What I will do is hang onto hope that there is still purpose and meaning in my life even with MS. What I will do is talk about my struggle so others won’t feel so alone and so they will be able to gather the strength they need to push through the pain they are facing in their day. What I will do is share a smile to brighten another person’s life. What I will do is not give up even when waving the white flag of surrender would be so much easier to manage.

What I will do is tell you just how amazing I think you are. You have come through the impossible…stronger, more resilient and braver than you ever thought possible.

It takes courage to face a day filled with uncertainty, pain, muscle spasms and weakness. It takes courage to lift yourself up after you fall. It takes courage to live with multiple sclerosis…and do you know what? You are doing it!

14 replies
  1. Peggy
    Peggy says:

    Thanks for keeping it Real! I will tell YOU just how amazing I think YOU are. YOU have come through the impossible…stronger, more resilient and braver than YOU ever thought possible.
    Feel the same about those commercials as i explain to family and friends that drug is advertising not reality

  2. Roland R Clarke
    Roland R Clarke says:

    Blessings for those encouraging words – much needed on a day that sucked big time. I’m struggling with a horde of step-great-grandkids that don’t understand about MS, of course – they just scream, yell and stomp louder.

  3. Kim
    Kim says:

    Thanks for keeping it real. I too had an “incident ” this week. Definitely sucks. Also as I was reading your article I realized tonight I had taken my shirt off and tucked a dish towel into my bra as a bib before I ate supper. I never even thought this is because I have ms I just wanted to not stain a nice shirt I had on. Good thing too. Definitely not something I did before MS. Yes MS sucks, but I smiled as I read about the bib realizing I had bibbed myself .

  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope I have been through that mess but guess what? We are still here and still alive so the rest of them can get over it and learn to get a life. We are not the only ones making a mess but at least we admit it. And of course it sucks and it’s not our fault. But we are all amazing living with this horrible disease and keeping going. Let them try it and try to be ‘normal’.

  5. Jana Morgan
    Jana Morgan says:

    Fantastic and great timing as always as feeling sorry for myself today. Thanks for putting it in place again! Onward!

  6. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    Good morning Penelope. I been having “I do not want to be me” days. Someone without MS would be nice. Back to reality. My pom poms are tattered and my I do not give a damn meter is on high. My visits with you are always like a Hug. All good things now and always. Be well.

  7. Brigitte
    Brigitte says:

    Thank you for the encouragement and yes I do believe that remaining positive is definitely definitely the key to be able to continue to move forward in life with this disease.

  8. Carole K.
    Carole K. says:

    Yes, it takes alot of courage to get up. We can all wallow in self pity, and if that is what you want to do with your life, then so be it. But not me. Like you, I will fight until I can no longer, and I will do what ever it takes to get through it. I do take pity on my self at times, but I eventually get over it and manage TO GO ON. Thank you, Penelope, for bringing awareness, clarity, and the truth about ms. Together, we are STRONGER!

    • Brigitte
      Brigitte says:

      Thank you for the encouragement and yes I do believe that remaining positive is definitely definitely the key to be able to continue to move forward in life with this disease.

  9. KT
    KT says:

    I am thankful for you being real about it. Your site let’s me know that I am not crazy. I even had Drs telling me in the beginning “that doesn’t happen in MS” really??? Yet everything I was experiencing was actually from MS. Even professionals often times don’t get it. Maybe that’s why the brochures are so off:). The world needs more awareness. I often wonder why this is not happening. XOXO


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