How do you live with Multiple Sclerosis?

When people ask me how I do it, how I get through my day living with multiple sclerosis? I’m not really sure how to respond. The best answer I have been able to come up with is, “I just do it.” I know that’s not a deeply profound response and Nike already has rights to the saying, but the question is not really something that can be answered.

MS invaded my life without my permission. It simply moved in and took over. It’s not something I can simply choose to no longer have around. If only it were that simple. To just say to MS, “Get lost.” Wouldn’t that be incredible? Only I would use some rather different words that might offend some people and would be sure to have an uzi, a battle axe and a few hand grenades along with me too.

Since I can’t force MS out of my life, I have to learn to live with it. There’s no other choice. I can try ignoring it, but ignoring something screaming in my ear and chiseling away at my insides isn’t possible.

From the outside my invisible struggle doesn’t seem so bad to people. It actually looks quite easy. But if you could look inside my body and truly see what I am dealing with every day…Oh, my, what a different story you would have to tell.

If there was a picture window into my life, people would see that my Central Nervous System (CNS) looks much like the chaos after a storm has blown through town tearing up everything in sight. Some areas in my CNS have been damaged, others completely destroyed. The foundation is still there, but the pipes have burst and the electricity is out.

After a storm people work tirelessly to patch things up as best they can to try and get their house back working, but it will never be the same. There will always be remnants of the storm that came through and never a guarantee that another one won’t blow through again.

Today, I live in a pieced together body with duct taped wires, glued together pipes and heavily caulked walls. Things still leak, wires still get crossed and new storms still show up, but I “just do it.”

Elizabeth Taylor, who struggled daily due to lifelong chronic back pain, said it oh so well…“You just do it. You force yourself to get up. You force yourself to put one foot before the other, and [gosh darn it], you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That’s how I’ve done it. There’s no other way.”

MS Gets on My NervesMS WarriorMS Superhero  

About the Author

Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

74 replies
  1. Adriann Giovanni
    Adriann Giovanni says:

    Most days I can take deep breathes and keep going , some days it’s impossible to just keep going .. Life is unpredictable but with MS we musltply that by 10 .. <3

  2. Tammy Denham
    Tammy Denham says:

    I get that question too, my answer is the same as when someone asks me about how I mange with twins. I always say, I just do, because no one can do it for me.

  3. Kelly Cowman Davis
    Kelly Cowman Davis says:

    I’ve always had the attitude to grab the bull by the horns and make it work. I was diagnosed with MS in 2005, and have grabbed that bull by the horns every day since. I have MS; but, MS doesn’t have me. ❤️

  4. Jenna Driscoll
    Jenna Driscoll says:

    I just get on with it. I push myself until I literally can not stand anymore. My legs ache but I keep pushing on. I’m determined to get the most out of my days…ms is not going to win

  5. Kathy Hamilton
    Kathy Hamilton says:

    Moment by moment….. with a little (lots) help from my friends…. by the skin of my teeth…. and the list goes on. I also like Angela Smith’s answer. 🙂

  6. Fiona Easton
    Fiona Easton says:

    The picture of the bird in the storm just protecting himself from the elements / nerve damage and just getting through the storms is apt
    Much respect to everyone silently struggling with MS
    Jen M – ❤️❤️

  7. Leslie Beaver
    Leslie Beaver says:

    We have always dealt with our reality almost without thinking. All of us. Whether young and strong. Or older and slowing down. Or disabled. The cards that we have been dealt are the cards that we have been dealt. But how we play them is up to us.

  8. Jo Sandeman
    Jo Sandeman says:

    I tell these people I just get on with it, there’s no heroics involved you just have to get on with it because there is no alternative as far as im concerned, these are the crappy cards I’ve been dealt and I’ll be damned if ms is going to crush my spirit. Of course l tell them that there are days when I just want to book a flight to Switzerland and never​ come back, but I look at the people around me who love me and Need me. It’s important to acknowledge the down days, because we’re allowed to be down, but mustn’t dwell on them because then the ms has won. Keep getting on with it everyone, keep fighting and keep on being fabulous! ❤

  9. Geraldine Lowrey
    Geraldine Lowrey says:

    You get up and find a way to get through that day. Next day may be different so you adjust your plan and repeat. It’s like the shampoo bottle says,”Rinse and repeat” only it’s ” find a way and repeat”.

  10. Laura Burns
    Laura Burns says:

    difficult when you are so tired i do the bare minimum! iv’e started to think about myself a bit more now as i never used to. i soldier on on and do what i can!

  11. Karen Bison Hooper
    Karen Bison Hooper says:

    Exactly. What other option is there? I take my meds as prescribed even though I hate what they do to me and that I have to rely on them. And I do what I can each day.

  12. Bonnie McCrane
    Bonnie McCrane says:

    Responses like “I’m sorry” or “How do you handle it” or worse the Pity stare (which I deplore) are usually what I get. I just say “you do what you gotta do and there aren’t a lot of variables here.” It sounds flippant but since I had to retire in 2008 my patience isn’t what is used to be. And then there are the days where my pain level is higher than normal and then I don’t care to even speak to anyone…UGH!

  13. Deedee Alexander
    Deedee Alexander says:

    I know people mean well, but it makes me angry when they say these things. Would they have me die instead of getting on with things? It’s not as though there’s a choice there.

  14. Chris
    Chris says:

    Thank you for “just doing it” and sharing your journey with us! You are an inspiration! Thank you!

  15. Mike Cummings
    Mike Cummings says:

    I completely agree. I’m uncomfortable when people tell me in brave. I don’t know, maybe. Mostly, I’m just trying to live as well as I can. Maybe we deserve some credit for not just giving up, but I think it’s just a matter of playing the hand you’re dealt. The only real choice, ultimately, is to try or give up. And that looks different for different people, some MS is so…”personalized.”

    • Rodger Ashton-Smith
      Rodger Ashton-Smith says:

      Good words Mike. We are brave in what we are going through and making a life for ourselves. I have had a fight with MS and won some and my doctor has helped me come right. If I gave in I would be a proper mess and not well at all.

    • Rodger Ashton-Smith
      Rodger Ashton-Smith says:

      Well Penelope now know what a cathartic feels like. I have one for a few days to sort a problem out and it feels funny and odd, but I guess it takes that to get to the ‘bottom’ of a problem.

  16. Carla Mountain
    Carla Mountain says:

    Well said. I was blessed with twins 22 years ago along with a 4 years old when they came along. I learned how to JUST DO IT. A few months later the ms devil arrived and again I had to learn JUST DO IT. every day I thank the good Lord for another day to fight and try and just do it again.

  17. Nadia Diolintzi
    Nadia Diolintzi says:

    Ευχαριστώντας για την κάθε νέα μέρα που αναπνέω, χαμογελώντας κ προσπαθώντας να μην εγκαταλείπω τον εαυτό μου!

  18. Carie Lynn
    Carie Lynn says:

    I was asked that yesterday…I was in day 2 of steroids for optic neuritis…I replied, “what is my other option? To give up? I have a 4 yr old and a 2 yr old at home. I work full time as a children’s mental health counselor. I have obligations, so I do my best.”

  19. Kim Black-McKinley
    Kim Black-McKinley says:

    Isn’t this the truth… We just do it.. And usually with a smile… Doesn’t mean it’s not there… Thank you for sharing , just wish everyone could read and understand this .. ❤️

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