I didn’t choose this life with MS

I woke up this morning yet again to the reality of Multiple Sclerosis. Sometimes it feels like I’m stuck in the movie Groundhog Day. Do you remember that movie? Every morning the alarm clock would go off and the same day would begin…over and over and over.

I really wish MS would take a vacation, or better yet, pack up and move out, but instead I’m stuck in some endless loop of difficulties, chaos, foggy brain and pain. This isn’t the life I chose. I didn’t wake up one morning and decide “Hey, I want to live with a chronic illness so I can quit the career I love, struggle financially, endure rude comments and stares from strangers, and live in a state of constant struggle for the rest of my life.”

No, just like everyone else, I dreamed of a wonderful life where my passions were being fulfilled surrounded by loved ones and friends. But life doesn’t seem to work like we want it to, does it? And sometimes that really stinks…some days worse than others.

Many of those dreams are now untouchable and those friends have disappeared, but that doesn’t mean I can’t still dream. My dreams are just different now.   And those people that walked away, well, they weren’t really friends to begin with. Friends don’t leave when times get tough. The real ones stick around.

On days when you wake up and every muscle, bone and cell aches in your body, know that you aren’t alone. When you long for the days of yesterday at a time when life was good and although it had its heartaches and pains, it was easy compared to a life with MS, know that there are others who feel the same way. When you find yourself alone with no one to talk to and no one to care, know that good people do still exist and my hope is that you find those people in your life.

Your body may have failed you, but you are not a failure. You are a remarkably strong person filled with tremendous wisdom and greatness who just so happens to have this ugly MS hanging around. Don’t let MS steal your day today. Shake off those defeating thoughts, hold your head up, take a deep breath and seize the day.

You didn’t choose this life with MS, but today…choose to live. You got this!

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.

51 replies
  1. marydevereux
    marydevereux says:

    Thank you you describe it to a T so much so it brings tears because its so true.

    • Joy
      Joy says:

      I did the same thing just now, the tears are falling.. I really enjoy being able to come back to reread what you have wrote I see something new each time.
      Friends and family-is her with all of you now.. It’s been a very long and no one to help and still is but at least I know I’m not the only one. Much love and prayers to all
      Joy

  2. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    I know what that ‘foggy brain’ is about. After getting my full memory back I must have lived in a dream world and now waking up to a nightmare and it’s nothing to do with MS. We had an insurance agent covering my tax payments from my income protection payments and something happened and I don’y know what but after losing that payment I got a bill for $1600 for unpaid tax and I haven’t had an income for 18 months.So I had to question that andwas told thetI had been told and this is the final biy. So I still don’t recall what I did and still don’t know what went on. And it feels odd.

  3. Angela M. Kirby
    Angela M. Kirby says:

    A friend who deserts is no friend, especially if they desert when your life as changed for the worse and not theirs!

  4. Catherine Donohue says:

    Thanks for sharing this. People try to understand what one with MS goes through but no one can unless MS is something they deal with day after day. I feel your pain and hope we all will have more better days then less and know were not alone. Thank you again

  5. Sheri
    Sheri says:

    Penelope thank you ! You have created another heart felt truth telling article to encourage us.

  6. Kris Hall says:

    I am glad when i hear you talk about things like this. My best friend, that has MS, has also used that “Groundhog Day” analogy. She, also, has lost a Lot of friends along the way. Frequently, they’ve not even given any kind of explanation. They just dropped completely out of touch. Does that happen to a lot of people with MS? Is it that others just don’t know how to deal with the disease?

  7. Suzanne Williams
    Suzanne Williams says:

    I take about two hours to feel better in the mornings. I take my melds, consume two cups of coffee and a banana, feed my dog and bird. Then I try to do something productive. (I find my worth in what I hav accomplished) Lately, I fix lunch, go back to bed, and nap the afternoon away! When I get up I don’t feel any better, and I just watch TV til it’s time for bed. I’m so tired all the time! And lonely. My husband is here, but I need friends,too! There’s no way to build friendships when you’re too tired. I used to be an accomplished professional! I liked the other me better!

    • Roxanne
      Roxanne says:

      I totally relate. I often say ” I miss the old me “. I find it very challenging to find the new me living alone, unable to drive, very isolated and friends that left me now that I am physically so weak.

  8. Kat Doiron
    Kat Doiron says:

    I’m usually the one who turns everything into humour, but it’s been tough lately. The change in what I can and can’t do since last September has me extremely doubtful that I can work the eight more years necessary to receive retirement income. I’m trying to remind myself not to worry about the past or the future, but it’s a challenge. “Groundhog’s Day”… perfect description. Same roller coaster…different day…. my circus…. my monkeys.

  9. Mary Lou Everhart says:

    I really wish that there was a summer camp for those with Multiple Sclerosis! Where I could go and sleep in a breezy cabin and eat food already cooked for me. Nothing fancy just good wholesome food, like grandma use to make. Go to activities like crafts, book club and learning about wild plants. Then at night sitting around the camp fire and roasting marshmallows for s’mores and sing camp song or camp skits. We all need that sooo much!!

    • Jill Wardle
      Jill Wardle says:

      Just received this e mail and am reading some of the comments. I have RRMS, reasonably able bodied person a 57 year old female. What a wonderful idea. Maybe you could present that idea to the Multiple S Society.. I have heard that they have M.S. cruises, but to me the fear of dizzy and vertigo on a boat scares me and being and living alone. I don’t want to travel alone too, it only makes me ‘feel’ more alone and sad and empty. Lovely thoughts. Tks for your post.. Jill from Oshawa. That camp would ‘have to be’ full of air-conditioning in order to survive.

      • Sandra voitka
        Sandra voitka says:

        Hi Jill,
        I agreed with your post. I saw that you are from Oshawa. I live in Uxbridge and work in Oshawa. I am turning 54 just diagnosed with Primary progressive….hate these labels. Only my immediate family knows, still working and in need of someone other than my family to talk to. Sounds like you are in good condition. I am starting to see the signals. Just reaching out in case you want to chat.

        Take care of yourself.

        Sandra

  10. Kellie Kenniston
    Kellie Kenniston says:

    I read this to my brother today, he’s 53 with MS and he can’t read any more – He wiped away a tear. He’s pretty stuck in the MS SUCKS phase right now, but this describes his life perfectly – Groundhog Day – wow. this is powerful powerful stuff and you are a great writer. How I wish you could visit my brother. Thank you. I thank God I found your blog.

  11. Kate Aquilino
    Kate Aquilino says:

    Penelope and others,

    I highly recommend Dr Coimbra’s High Vitamin D Protocol. This is my third week. I walked 1-1/2 miles this morning! Haven’t been able to do that in years. This IS the cure for which I was waiting.

    Have a great weekend
    Kate

    Wake up a new person

  12. Liz Whyte says:

    Thanks Penelope for writing what goes on in my life that I can’t explain to others. They think because you smile and you dress up and front up that you are exaggerating if you dare to express how your really feel. xxx

  13. Sherry Turner says:

    Thankful I can get out of bed & do the thing s I need to do . Hope I get those weeds sprayed & car vacumed out & my suddenly salad made , time will tell

  14. Nancy
    Nancy says:

    Penelope, thank you for your kind words the other day. I am feeling better, had an MRI so will find out soon if I am progressing or not. I do so hope that you follow your own words of encouragement in your posts, we all love you! At least I do!!
    xoxo

  15. Maddy
    Maddy says:

    Reading your post is an inspiration. I wake up every morning and pray that today is not going to be the day that my legs fail me and I eat the floor at work. I have at to explain wait lie several times as why I am walking funny “is something sore” yes something is sore but I will be fine. One day at a time is what we all must do. Live in the moment as sucky as that is. One day I will run again.

  16. Barbara
    Barbara says:

    Hi Penelope, thank you for this post. It describe how I have been feeling especially as of recent. I try but have to accept my limitations. I work but realize that it is difficult and want to give up. I do not give up but take longer than others. As to friends, I guess the ‘elephant in the room’ situation is true. Those friends were really not friends. I try to keep my head up high and inspire others who may need a little motivation, (I work at a high school). The students see their life as so hard and I smile at them and think ‘if they only knew.’ I can go on with different situations in my life where this disease has been a real inconvenience but I am sure you as others with a chronic illness can write about an endless amount of situations. At times I become so frustrated Iaugh at my situation and then I cry. Like the movie Ground Hog Day, I wake up and the disease is still there😕. I dream of the day that like the movie, I will wake up and I will feel ‘normal’ again. Thank you again for reminding me that I am not alone😊. God bless you.

  17. Rhona
    Rhona says:

    Every time I read one of your posts I wonder how you know exactly what I needed to hear. Thank you so much for showing me that I’m not alone.

  18. Roland Clarke
    Roland Clarke says:

    Inspired to live today and all tomorrows without my SPMS dictating the agenda. Thanks 🙂

  19. Toniann Scarpa
    Toniann Scarpa says:

    I feel like you live inside my head. I love your posts, articles, pictures, etc…,
    Thank you!!!!!!

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