Shift happens

Multiple Sclerosis has taught me a lot about myself. It has taught me how to adapt to change and shift, many times on a daily basis, to the unexpected. No one likes to have their life disrupted by the unexpected. It makes our daily life hard to manage and plan out, but with MS you learn that it’s okay to change plans; that it’s okay to call up a friend to let them know you have to cancel today because your legs aren’t working or the fatigue has gotten too intense to handle; that it’s okay to acknowledge the struggle.

If you don’t learn to go with the flow, the flow will swallow you up in the process. I have had to learn to be okay with not being able to do it all myself. Ms. Independent and Ms. I-Can-Do-It-Myself have become Ms. Disabled and Ms. In-Need.

Did I like the lesson? Absolutely not! Was it easy to swallow my pride and allow others in so they could help? Absolutely not! But it was a lesson well learned and one that I’m still learning to this day.

I can remember the first time I started using a cane to help me walk. I was at the neurologist’s office for an appointment knowing full well I was struggling with my balance—holding onto walls just to make it down the hallway without falling down—when the news became a reality. She said, “You need to get a cane.”

My first thought was, “No way, I will not give in to MS. And besides, that would be so embarrassing. I don’t want to draw attention to myself.”

Then, as if she could read my thoughts, she said, “It will be much easier for you to use a cane than to have to deal with a broken bone due to a fall.”

I thought to myself…broken bone or broken pride…hmm! I chose to break the pride. That day I bought a cane. Over the months ahead I learned to adapt to its use. Some of those changes were easy, some were hard, but all in all they were great lessons to learn. I finally conquered my pride…or so I thought.

Six months after I started using a cane regularly, I was back in the neurologist’s office due to more falls and instability. I remember that day just as vividly. She said to me, “You really need to consider using a walker. It will help you by giving the added support you need.”

I was devastated hearing that. I knew she was right, but in my mind all I could think about was how I was letting MS win. Yet again, the neurologist was right and I learned an even bigger lesson. I learned that I still had pride in me that I was holding onto.

I wrestled with the same thing transitioning to a wheelchair. It seems like each new life-changing moment has hit me pretty hard, yet with each bruise, with each fall, with each shift, I have learned something new about myself and about life. Lessons that someone can only learn by going through the struggle.

I could fumble and stumble my way through life denying the battle I’m in or simply adapt with the changes when they come. It doesn’t mean I’m giving in or that MS is winning, it simply means I’m strong enough to know when I need help and that I’m not too prideful to receive it. That makes me the real winner.

The journey ahead will have its rough places. There will be cracks in the road, speed bumps, dips, terrible sinkholes, and mud puddles but I can tell you from experience that no matter what comes your way, you will be able to handle it. You are strong enough and brave enough.

The biggest lesson I have learned through it all—the biggest thing MS has taught me—is that shift happens.

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. Connie Ray
    Connie Ray says:

    Penelope, you have written some of the greatest articles I’ve seen on MS and how to deal with the daily changes it can bring. I have a friend, new to MS, who refuses to use a cane. My advice to her was to get rid of the pride and pull that cane out of the closet. You guessed it, her pride won. I’ve told her many times, you’re drawing more attention to yourself by not using a cane. People around you are afraid you will fall, and aren’t sure how you would react to their assistance. Everything I say to try to help, falls on deaf ears. Any ideas or suggestions? Thank you, Penelope, for continuing to help us manage the storm.

    • Penelope Conway
      Penelope Conway says:

      That’s a tough one. Sadly, I think some people have to get there the hard way. Maybe that type of decision will get easier for them over time as changes continue to happen. I wish I had better advise that would help. xoxo

  2. Jana Morgan
    Jana Morgan says:

    I started using a cane and then a walker. I now use a scooter when I have to walk further than I can walker and it is fine. Wasn’t in the beginning and I fought myself like crazy but I think the sensible part of me won! Whatever works for me and tough for what people who I don’t even know think about me!

    • Stephanie Beck
      Stephanie Beck says:

      I seem to go through that “grieving process” every time there’s a change, big or small, seen and unseen. To me, I feel like my body is screaming telling everyone around me about the new change or worsening of a symptom but I know it’s just me feeling like everyone can see and knows that change. I was diagnosed when I was 18 years old and am now 46. I also have rheumatoid arthritis and several other health issues. The past 8-9 years my health has slowly, but now it’s much quicker, declined and I find that I grieve much more often. I feel like I have no purpose or meaning to my life especially since I was forced by my MS to stop working. My husband tries to remind me that I have a huge purpose and meaning in my life to our two sons and to him. He says, “How would we function without you?”. My reply, “Much easier because you wouldn’t have to always make plans around what kind of day I’m having or how much energy I have.”. I’ve told him many times that all of them would have a much easier life if they didn’t have to worry about me on a daily basis. Yes, shift happens and seems to happen more and more frequently the older I get.

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    It is all interesting that changes of similarity happen so differently to all of us. I started using an elbow crutch when I first got diagnosed. I was on them for 16 years then I had an accident that put my right arm through a window and badly damaged my right arm needing emergency surgery. They gave me a walker because the bandage was too big for the crutch. That was ok then I had visit from a hospital resource group that measured me up for a wheelchair. This came along and it felt safer for me than anything else. So I’m still dealing with changes that can help me.
    I think we do have to accept many changes until we get it right.

  4. Roland Clarke
    Roland Clarke says:

    This brought the past adaptions or shifts that I went through. I was an equestrian journalist covering events in fields. At first, the cane was an annoyance but I accepted it in order to keep working. Then came the crutches and the walker, and they added another level of improvisation trying to take notes and stand up. It was about this time that I had to get deadline extensions. When I was forced to use a scooter, I had to accept that covering shows was not the future so I retired. I’m now in a power wheelchair and housebound for most of the time – but becoming a novelist has added a positive shift in my life.

  5. Linda OCONNELL
    Linda OCONNELL says:

    Penelope you are such an inspiration to me. My problem is that I am scared. I don’t know how I will handle things when I get to that point. How do you handle the feelings that come from knowing you will be losing your independence when you are so used to doing so many things? I luv u❤

    • Penelope Conway
      Penelope Conway says:

      It’s not easy. I’m so stubborn that I still try to do everything myself. But I have learned over time that it’s in my best interest to ask for help when I need it. That has always been the hardest thing for me. Over time, it gets easier.

  6. Jo Maxwell
    Jo Maxwell says:

    I love your comments “It doesn’t mean I’m giving in or that MS is winning, it simply means I’m strong enough to know when I need help and that I’m not too prideful to receive it. That makes me the real winner.” Thank you so much for sharing!!

  7. Leah
    Leah says:

    I too, had a “real struggle” accepting to use a cane, then AFO, then special crutches, then a walker and now a travel wheelchair when I’m out and about. You’re totally right about the “pride” thing. I was embarrassed to be seen using these things, thinking that everyone would see me getting worse with my balance and all, and pity me. Through time, I’ve been able to conquer most of my “pride” issues but it’s not been easy. Thank you for writing about this:)

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