I’ve got 5 minutes, tell me about Multiple Sclerosis

I’m always grateful when I meet new people that want to know about this MS I live with every second of every day. A friend once told me “You don’t get it until you get it” which is very true, but that should never stop someone from sharing the challenges, struggles, pains and even joys faced by thousands of people around the world living with MS today.

First of all, you should know that 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 I would be sure to have an uzi, a battle axe and a few hand grenades with me just in case.

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

The nerves in my brain and spine are much like the wires in someone’s house. Imagine that a hungry, never before seen monster, finds those wires nicely tucked away in the walls and decides to have a midnight snack. These monsters starts chewing on the wires for no reason in particular other than the fact that they are there…and apparently really tasty.

As the wires become exposed, frayed and broken, the lights in the living room begin to flicker, the refrigerator stops working altogether and a small fire starts in the laundry room. Then, if that wasn’t enough, the monster invites all his friends over and now there’s an entire herd of crazy wire eating monsters munching away.

Sometimes you find ways, some pretty creative ways at that, of keeping them rounded up and contained. That doesn’t mean they won’t find a way out of your makeshift blockade, but it does give you a chance to enjoy a bit of peace and quiet away from the daily battle. To this day there has yet to be found a trap or poison that will stop their frenzied appetite.

Over time you come to the realization that you are stuck living in a broken-wired home along with the damage those wires cause. And since you only get one house to live in, the damage can easily become overwhelming, not to mention expensive and nearly impossible to duct tape back together. Yet no matter how inconvenient, uncomfortable or faulty your house becomes, you do the best you can with what you have. You learn to adapt. You have no other choice.

It’s not your fault, or anyone’s else’s for that matter, that these monsters found a way into your life. They could find a way into Fort Knox if they wanted to. They are the problem, not you. And until a way is found to rid the world of those terrible, menacing, wire-eating fiends, anyone’s house has the possibility of being attacked.

That’s why I check under my bed and in the closets each night before I go to bed. Last time I found one of those buggers hiding behind the shower curtain.

MS Gets on My NervesMS WarriorMS Superhero  


About the Author
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.

49 replies
  1. Mary Smith says:

    MS FOR 22 YEARS, PEOPLE TELL ME, YOU DO NOT LOOK SICK, I TELL THEM I AM NOT SICK AND THEY WILL ASK WHAT IS WRONG WITH YOU, I TELL THEM TO LIVE IN MY BODY FOR 1 HOUR

  2. Gemma Harris says:

    Hugs to you. Feel your pain at the moment. In the middle of a relapse but just brush over it. No one to really tell. One of the down sides of being single I suppose. Anyway it’s not as tough as other have so just plod on.

  3. Cheryl Marsh says:

    MS is My Sidekick…always with me but doesn’t define ME I like when people tell me I look good! I’d rather people see a smile and positive attitude
    My claim to this:
    “I can do all things through Christ, which strengeneth me.” Philippians 4:13
    My Trust an Strength is in God through Jesus Christ

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

    Great video. You have nailed some of my symptoms well. It’s quite strange that even if we are on the opposite side of the Pacific Ocean we are talking the same ‘language’.

  5. Glenys Jackson says:

    I know how you feel. Some people accept our limitations with no problem, but others don’t understand why we can’t do basics as we used to and we have to explain it over and over!

  6. Neil jenkins
    Neil jenkins says:

    Hey Penelope,
    Perfectly written!
    When someone sees me sat in my chair they have no idea of how hard it was for me to get there. I know they would be completely shocked if they knew. I have a gofundme page & have been told to do a video to show people how I live. I’ve tried but run out of time before I accomplish something worth watching!! Well done again on your fab read.

  7. Mary Devereux says:

    Every day is a struggle and there are times when it feels every day brings bad news another part of your body is failing you and it’s you know it and feel it because you still manage to look well !

  8. Tiffany
    Tiffany says:

    Thank You so much Penelope, you really explain about our disease so clearly 🙂 I can never explain to others especially my loving husband what I exactly go thru on a daily bases. This disease is trying to get the best of me BUT it WILL NOT win I WILL!!!!!!! You seem to know what I’m feeling and you say it so well, THANK YOU :):):) I’m a fighter and a warrior who will WIN!!!

  9. Jill Rios says:

    I love your posts!! Wouldn’t it be nice if we could choose and schedule days for MS to visit? Sorry I need to get groceries, could you come back around 5pm? Lol

  10. Laura Sowa says:

    “I would never have guessed you have MS!” I hear that all the time. Well thank you but you don’t see me when I’m having a migraine, or my legs don’t want to work, or when I’m so fatigued and haven’t even done anything yet. MS is a sneaky disease, and your symptoms may not be mine, but they are there.

  11. Marc Chapman says:

    I am a man with MS I would like to travel around the country and inform people about Ms because it is such a weird disease and I am a minority because your Ms is different than my MS even though we both have MS

  12. Julie Garner says:

    Myelin munchers! I love that, but I don’t like them at all! Looking good and feeling good can be sooooo far apart, and I think it is right that people don’t get it until they get it……your posts are a great way to educate folk though xx

  13. Gail M. Ferguson says:

    I am extremely thankful all of your posts. You not only say it like it is but by doing so you help enlighten those that are clueless to our struggles and try every day all day to hide behind this facade of “I’m fine ” .

  14. Mindee Burke
    Mindee Burke says:

    Great post! The way I explain it is to tell the person to think of an insulated cord as your nerves, remove the insulation in several spots. Then have it send the signals thru it, in those areas where the insulation is gone it causes pain, numbness, tingling, and many other awful things. MS sucks and I hope they find a cure in my lifetime!

  15. Leslie Beaver says:

    Well expressed. Even the seemingly hale and hearty of us is waging a constant struggle. Without fanfare. And it is a struggle that we can never win. But, we will also never lose if we do not surrender. Onward!

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