I will not be defeated

So, what’s it like living with Multiple Sclerosis? That’s a question I am asked from time to time and one that’s not all that easy to answer. Trying to describe the physical and mental difficulties and limitations that we experience because of MS is often met with some interesting responses from others.

I’ve been told to “take Tylenol” for the pain in my body, to “eat more potassium” for the cramps in my legs and hands, and to “take B12 and energy pills” for the exhaustion. When I explain that those things simply don’t work for me, they look at me like I’m a one-eyed purple polka dotted crazy person. After all, it works for them so it should for me too.

Some people just don’t seem to understand that those of us living with MS are not like them. We have a damaged Central Nervous System. Some of the damaged areas have healed well over time but some haven’t. And new damage appears all the time.

The pain we experience is not because we are in real pain like someone stepping on our foot. We are in pain because our nerves are misfiring and sending pain signals to our brain when there is no real existing pain in the first place. To stop the pain you have to stop the communication process, not the actual pain. There are some medications that help to disrupt this broken communication, but I haven’t found one yet that works for me.

The numbness in our body is not something that goes away by uncrossing our legs like someone does when their foot falls asleep. Parts of our body are numb, experience that “pins and needles” feeling, and cause pain to shoot through our body every minute of the day. No amount of rest or exercise will wake them up.

The exhaustion we experience isn’t because we didn’t sleep well the night before or because we aren’t eating nutritionally. It’s a debilitating symptom of the disease that is not remedied by natural herbs and better sleep. Although those things can help, it’s not a “fix”. Making it through one day without having to take a nap is a good day.

Many of us also deal with vision problems that can’t be corrected with glasses, dizziness, muscle weakness, bladder and bowel dysfunction, breathing difficulties, and of all things, heat makes it all go into supersonic chaos.

That hot shower most people enjoy, we can’t take because our muscles will seize up. That hot tub soak, an impossibility. That day at the beach, even in the shade our symptoms can be hard to deal with. That trip to the mall, within thirty minutes many of us are done. Just making our way across the parking lot of the grocery store presents a challenge that some days we don’t want to face.

But through it all, I have learned to look this disease of MS square in the eyes and say, “I am not defeated because of you and regardless of what happens in life I am thankful for each new day I am given.”

We will never understand all the “why’s” in life. Why MS? Why now? Why me?

Stop questioning why you are going through the storm you are currently facing and determine to be thankful as you go through. You can be thankful even in the most horrible of circumstances, but it’s a choice; and you can make that choice today. You can stand up (even if only on the inside) and say, “I refuse to be defeated by MS.”

I have learned that strength isn’t measured by the amount of things I can do or by how big my muscles are, it’s determined by the attitude that I have while going through the difficult times in life. You are stronger than you think. Square your shoulders back and hold your head up high today because you are STRONG even though your body is weak!

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.

28 replies
  1. Marlene Adams
    Marlene Adams says:

    I’ve had this poem in my brain for a while about life with my MS and finally decided to write it down. I wanted to share it with you as I find you so inspiring. Here goes :

    That Girl

    I’m That Girl
    that you see
    hobbling across the street
    you’re wishing I would hurry
    That Girl.

    I’m That Girl
    that can’t see
    that squints and struggles
    wishes glasses would fix it.
    That Girl.

    I’m That Girl
    who forgets a name a face a memory
    and wishes a note would help.
    That Girl.

    I’m That Girl
    that sways and teeters
    you think is drunk or clumsy
    that just wants to be stable.
    That Girl.

    I’m That Girl
    who winces and cries in pain
    that swears under her breath for it to stop
    that you think isn’t tough.
    That Girl.

    I’m That Girl
    who needs to rest
    but just can’t sleep
    that you think is lazy.
    That Girl.

    I’m That Girl
    that just wants to know
    who just wants a turn
    to feel like she felt
    That Girl.

    I’m That Girl
    that walks that climbs
    that runs that laughs
    that works that learns
    that supports that loves
    that hopes that dreams
    THAT FIGHTS because I can
    I’m That Girl.


  2. Catherine Roberts
    Catherine Roberts says:

    My MS started many years ago with a Vertigo attack. I never dreamed I would end up in a wheelchair. I went from cane, to wheely walker to wheelchair. It has been so long, I have forgotten what it is like to be able to walk unassisted.

  3. Aliie Harpham
    Aliie Harpham says:

    “The pain we experience is not because we are in real pain like someone stepping on our foot. We are in pain because our nerves are misfiring and sending pain signals to our brain when there is no real existing pain in the first place. To stop the pain you have to stop the communication process, not the actual pain. There are some medications that help to disrupt this broken communication, but I haven’t found one yet that works for me.” SPOT ON!!!! I go crazy trying to explain this to people hahaha

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

    I feel even now we (all people) haven’t got the technology or information to ‘fix’ this MS problem. Certainly there are aides to help us but it doesn ‘t take the MS away. I was just talking to a fellow at mainly music and it came to me he really didn’t know what it’s like to have lost control of part of your body. I told him my right leg has failed me but I can still feel when things touch etc.. So it (leg) is still looking healthy but the control has gone (somewhere)
    But it is never going to stop me or change who I am. I am still the same person I was before this mess. Ok I can’t do what I used to but then as we get older then that is the same, just on different degrees.

  5. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    Thank you Penelope. It is always a treat to have a visit with you. MS is not fair, polite, soothing, understanding, does not say please and thank you. convenient . The why’s and how come me, do not have answers that we will ever get. Right now it is “mine”. Like it or not I have to do the best I can. I have to pick my daily battles and trudge on. Take your moments and enjoy. Be well.

  6. Della Smalley
    Della Smalley says:

    Live this everyday and I’ve even been told to go with all veggies,but that doesn’t work either believe me if it did I’d shout it out to all my MS people.Why don’t they understand that there is no cure for it.??

    • Sandra M
      Sandra M says:

      Della, I think it is because they have no ‘real’ experience of it directly or indirectly. I have been told, when still at work, ‘oh I get tired by Wednesday’, really! I’m tired not long after I get out of bed on many days.

  7. Tara Tucker
    Tara Tucker says:

    If you really want to get better stop drinking anything with sweetener. That’s what causes MS.

    It amazes me that people think so many people would choose to be on that much pain or to be wheelchair bound rather than simply not consuming Splenda.

    If only it were that simple.

    I honestly could write a book with all the things that I’ve been told to do to simply make MS go away.

    But what you do, your blogs/posts. It does not make my MS go away but it does help, inspire, and provides comfort. Not just for me, but for so many others. Thank you for all you do.

  8. Amber
    Amber says:

    I’ve gotten to the point of someone looks at me differently because of my MS that’s a reflection on them and that’s their problem. I’ve had ms for over 13 years. Yes I’m not in a wheelchair, a walker etc. but I do nap everyday and wake up exhausted. People in my life try to understand. But sometimes they don’t or can’t even. I’m in pain 24/7. But I make myself get up and do what I need to do daily. I don’t get everything done all the time. I have the attitude of “Never give up” I’m going to school right now part time. And people just don’t understand why I’ll spend that much $ on something that I won’t even get a job with. It’s not about that to me. It’s for my cognitive issues and to get me out of the house daily and be happy doing something.

  9. Chris W
    Chris W says:

    Thank you Penelope! You are gifted and I appreciate your honesty and positive attitude! May your day be filled with energy and JOY!

  10. Fara
    Fara says:

    It’s a full time job, living with MS ! A very difficult long arduous round the clock with no breaks job. 😖

  11. Dave N JJ Sharon
    Dave N JJ Sharon says:

    Someone mentioned to me about a friend of theirs that has MS and he had bee sting therapy, it’s helped him and he swears by it. I replied kindly……I’m glad it worked for him but….it doesn’t mean it will work the same for others. Again, your post has been in perfect timing. Thanks for sharing your gift of writing and being vulnerable about what most of us go through on our MS journey.

  12. Leslie Beaver
    Leslie Beaver says:

    An interesting question. And one that I am never asked and do not ask myself. Because it is honestly like any other time in my life. I do the best that I can with what I have. Impose on others as little as possible. Be grateful for kindnesses. Try not to let personal weakness frustrate. And repeat.

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