I have a to-don’t list to help me manage my multiple sclerosis life

Have you ever had a time when you had full intentions of getting something done before the day was over, but it didn’t happen? It seems I’m a pro at it. I can have something at the top of my to-do list and even have an alert on my phone to keep me reminded to get it done, but then I become so exhausted lacking any energy to lift my arms and sometimes even my head that whatever I had on my list just isn’t going to get done.

That happened to me yesterday. I had great plans of cleaning the bathroom and taking out the trash. Both seem simple enough, right? And they are, until fatigue decided to pay me a visit.

Once fatigue shows up, you can forget me being able to get anything done. I can tell you this, it is one of THE MOST unwelcome guests in my life, multiple sclerosis being the ultimate first. Fatigue can happen early in the morning sometimes as early as me opening my eyes with the morning sun, after my morning shower, part way through the day, or even in the middle of doing an important task. Its schedule is random and it seems to have no plans of sharing the itinerary with me.

I have had to learn to go with the flow on a daily basis. That’s not always an easy thing to do either, but it is necessary if I plan on making it through the chaos that surrounds me. One thing MS has done for me…it has taught me to value life way more than I ever did in the past and to not take things like being able to work for granted. Work was my passion, but now that my career is a thing of the past, living has become my new passion.

MS changed things. It made life more difficult in some ways but it also gave me a different perspective on life itself. I see how precious each day is, how special caring people are and how short life can actually be.

I woke up this morning to a new day. My phone reminders are ready with a few things I need to get done but I’m okay if I have to shift things around or if I fall asleep in the process and miss out on getting anything done at all. Life is too short to get caught up in the land of to-dos.

I have instead made a to-don’t list which for me makes my MS life so much easier to manage.

  1. Don’t hide your struggle.
  2. Don’t try to conquer everything all at once.
  3. Don’t think about what could have, should have, would have been.
  4. Don’t let stupid things get to you.
  5. Don’t hold onto hate.
  6. Don’t place irrational conditions on your day.
  7. Don’t neglect the people in your life who have stuck around.
  8. Don’t cry over spilled milk.
  9. Don’t forget to find reasons to smile.
  10. Don’t compare your journey with others.
  11. Don’t take anything for granted.
  12. Don’t lose your sense of humor.
  13. Don’t worry so much.
  14. Don’t wait for the perfect timing.
  15. Don’t give up.

MS Gets on My NervesMS WarriorMS Superhero


6 replies
  1. Judith Norris
    Judith Norris says:

    It amazes me that a site called “Positive Living with MS” allows a negative post where all the articles start with ‘Don’t. I could make all the statements positive by deleting don’t and adding something more like Positive Living.

    • Marcos
      Marcos says:

      Hola, lo podriamos tomar como vos decis y hasta creo que una parte de mi lo cree. Pero otra parte tambien me dicen que son cosas que pasan tal y cual dice el articulo asi que me parece que a veces leer algo asi nos permite caer en una realidad para algunos mas rapidamente. Un saludos, espeor no ofenderte. Buena vida.

    • Vicky
      Vicky says:

      MS comes with a lot of “don’t”s. Penelope helps us deal with that by putting a humorous spin on it. Thats what makes it Positive Living.

      Read #12 on the list

  2. Meeya
    Meeya says:

    I absolutely LOVE your to-don’t list – the printout is going straight to my office wall as a daily reminder. Thanks a mill, dear Penelope!!🙂

  3. Vicki. Bowland
    Vicki. Bowland says:

    Since my,doctor told me (7 years ago, about July) Rebif will never work for you; some people cannot take interferon based drugs; I started understanding more completely that every MSer is completely different; even twins respond differently to the same drugs. All MS WARRIORS walk, hobble, scoot, roll along in our own way.

  4. Peggy Wills
    Peggy Wills says:

    Good one! I have the same problems! I started a ” List of things i have gotten done” to help me see that i have actually accomplished something!


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