Don’t Let Your MS Bully You!

Don’t Let Your MS Bully You!


Even before my 2010 Primary Progressive MS diagnosis, I was influenced by my inner voice. Way too many times I’ve given into my insecurities and visions of all the terrible scenarios that could occur.

Everyone has that little voice. The one that will whisper, “you can’t do that,” or, “why bother? Too much effort is needed. Stay home.”

Over the weekend, we had our annual family camping trip. I love to be with my family more than anything. Being with my husband, three little grandkids, my three grown children, and my daughters-in-laws really can lift my spirits!

Upon planning the trip with my daughter this year, my first Inner Thought was: “taking my MS show on the road, I don’t think so.” But my feelings for my family and being together overruled that voice.

My self talk became, “I have to go, I want to go.” I began to think of all the ways I could adapt this camping experience to make it work for me: distance from the campsite to the lake, distance to and what type of bathroom there will be, what is the terrain, what assistance device will I need?

Sleeping at night, a cot would be best, I decided — no getting up and down from an air mattress. I’ll make sure to take something to put my feet up when needed, and plenty of my homeopathic leg cramp pills, water, and ibuprofen.

All set, I thought, then the weather forecast came in — HEATWAVE! We were going camping during a HEATWAVE!

As most of you know, MS and heat do not mix well.

Heat can send my legs into a full-blown episode of pain and immobility. It can take every last nerve I have, and turn my personality to that of the Incredible Hulk!

So, enter my inner voice, “There is no way you can go camping in a heatwave.”

“So true,” I thought, but then I heard a faint murmur: “I have to go, I want to go.”

My camping plans changed from me not going at all to choosing to go for one day in a three-day trip. My objective was to pick the day that I could spend the most time with my family.

I went on Saturday. Before I left, my husband massaged my legs and I took ibuprofen. I would take my wheelchair since my legs would be weaker due to the heat.

The temperature creeped to 95°. The high humidity was already affecting my legs, so I took my leg cramp pills. My daughter saved the day by having a storage tub filled with cold water and putting my feet in it. My Grandkids gave me water balloons that I put on the back of my neck and face.

All in all, it was a great day!

Yes, I had pain and I was exhausted for the two days following, but it was worth it all! I shared a special memory with my family!

I know sometimes I won’t be able to push past the inner voice. I know some days my MS will bully me way too much and keep me down.

Still, there will be lots of times I will say, “I have to go, I want to go,” and I know by doing that I will have many future victories against MS!

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


  1. Phil Longford says:

    Sounds very familiar. MS controls the holidays. But, once you acknowledge your limitations, holidays are still enjoyable.

  2. Chris says:

    Reading your story I found a lot of resemblances with my own experience. Planing a family trip or an activity with a group is ever a challenge, but if we decide to renonce, we let MS extend his field. So I like and admire your tenacity, it is the right way to maintain your autonomy. We certainly have also the advantage to have the help of our family. I can imagine that it would be more dificult if we would be alone.

  3. Judy says:

    Very inspiring! I admire the way you persisted in looking for solutions, and also the spontaneous ones like the tub of water and the water balloons. Your grandchildren will be more empathetic people…better and kinder people…for having you in their lives.

  4. Kyla Mathers says:

    You rock Debi! Giving your MS a kick in the bum is worth it sometimes! You planned beautifully so you had a good time! Well done ????

  5. Lesli says:

    Thank you for your awesome inspiring story!!!! I always tell myself that yes, I have MS but MS does not control my life!

  6. Bill Winter says:

    Your story is so familiar with my life. My granddaughter in particular is always doing things to help me at 6 years old! Thanks for your story, it lifts my spirits!

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