I never asked to get sick

For so many, Multiple Sclerosis is filled with times of intense struggle followed by periods of calm. During the calm a new normal is found that consists of changing how everyday tasks are done and limiting those things that are not as important. Meds, vitamins, diet, exercise, and working to stay as stress free as possible helps to manage the symptoms and life goes on. Years pass by. Relapses happen and with each relapse a new normal is found and the process continues.

I wish I was one of those people. I wish I could say, like so many do, that I have had MS for 20 years and am still going strong or that it’s been 10 years and my symptoms are still the same, but I have never had a period of time when something wasn’t changing. I’ve never really known a relapse. MS has been fast progressing and aggressive for me. I know I’m part of a smaller population of MSers, but I think it’s important for the world to know that not all MS is the same.

Sure, I am encouraged by the stories of people with MS who advance in their careers, run marathons, and are seen on TV giving a face to MS. What bothers me are the numbers of people that think MS isn’t that bad, after all just look at so-and-so on TV or watch this video I saw of how someone follows a special diet and now lives symptom free.

We have done a fairly good job at informing the world that MS exists, but not so good at explaining that it can be cruel, painful, debilitating, and that a cure has not yet been found. Yes, I agree that not everyone will end up in a wheelchair unable to manage life on their own, but it happens and we have to be sure we are sharing both the good and the bad with the world so they know the truth and not just the positive, brave side we like to portrait. Being positive doesn’t mean denying what is going on in your life and hiding those things from others. It’s acknowledging the ugliness of MS and choosing to push through anyway.

I never asked to get sick, to have to quit my job, to live day by day with struggles. That was never a part of my long term goals in life. I work hard every day to stay positive, encourage others and even encourage myself. But you know, some days I have to talk myself into getting out of bed. It’s true. I have even been known to argue with myself as I work up the strength to get a shower to start my day.

It’s hard. But even in the impossible, I see good things around me. I see people smiling because I said something funny. I see strangers extending a helping hand when I’m struggling to get the door open or needing help to get something from the top shelf. I see love in action and joy in some of the strangest moments.

No matter how difficult your day is, look up from your struggle and take a deep breath. What are some things in life that make you smile, that warm your heart, that bring you joy? Hang on to those things today. It won’t make the day easier but it will make the load lighter. MS is different for everyone, but pain is pain, struggle is struggle, change is change. Today is not a “give up” day…it’s a “get up” day.

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.

104 replies
  1. Joni
    Joni says:

    Wow, I felt your frustration and your bravery in every word. I’m so proud of you. I’m 45yo wife, mom, daughter, etc…that struggles with SPMS symptoms minute by minute too. In 1998 I was diagnosed with a spinal tap +. It started as RRMS that flare every couple years and oral prednisone was helpful but my symptom from the flare never left. Then still RRMS oral steroids didn’t do anything and the dreaded IV solumedrol treatment was no sleep and my skin hurts with my clothes touching me. In 2014 I was diagnosed with SPMS, +JCV assay titre so high that I can’t even take Tysabri for risk of PML. So, 3 and 1/2y later, my Registered Nurse Liscense was taken (it hurt as bad as the day I was told I had MS), use a cane, walker, stair lift and can’t drive. I share that, not for pity, but to let you know I can have empathy for you and your struggles. I will pray for you. I GET IT!
    My ears listen without a word if you are “in a funk”.

  2. Chantelle Robertson
    Chantelle Robertson says:

    “I never asked to get sick, to have to quit my job, to live day by day with struggles. That was never a part of my long term goals in life. I work hard every day to stay positive, encourage others and even encourage myself. But you know, some days I have to talk myself into getting out of bed. It’s true. I have even been known to argue with myself as I work up the strength to get a shower to start my day.” I do not have MS, but this resonated with me. Thank you for your positive attitude and for sharing your struggles as well. I, for one, have a better life just from what you share.

  3. Della Smalley
    Della Smalley says:

    U r a Amazing and beautiful woman and u always get me to smile.I wish more people would understand that we don’t want to feel this way but we were handed a tough disease with no cure.Weve been poked n used by drug companies with there so called medicine that would help but nothing will work.Ive taken it upon myself to just take Gamipintin n pain meds.We all need to be strong fighters.MS SUCKS

  4. Michelle Price
    Michelle Price says:

    I didn’t ask for it and wouldn’t wish it on anyone . I
    Pushed myself for the last ten years to keep on living and dealing with my ms. My grandkids make me get up and keep going. This disease pisses me off daily with the frustration of not being able to do what I want to. I’ve learnt to live with it but I will never be happy about it. If one more person tells me a diet will cure it I may lose it. If it was that easy do they think we wouldn’t be doing it? I’ll never give up because I have plans for my future

  5. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    I know there are some people out there that have MS but not in the disability way. To me that is not a problem as I was among them in 2011 when I was on the trial for MIS416. I went from a mobility score of 6 to a score of 3 in 3 months. From this I enjoyed 18 months of free walkling and not using any support. It was great feeling but it wasn’t and never made to be final. Now am in a wheelchair and learning to use it properly.
    But I’m still alive and MS has not and will not take my life away. I just hope that it will never take my memories again as this is my life and I don’t want it changed.

  6. Peggy
    Peggy says:

    Thank you Penelope Conway
    I have said that too…people think that its ok look at so&so on TV.
    So glad hear im not alone in that
    ‘No relapses’ club. Or the talking yourself into getting out of bed. I didnt ask for this.

  7. Cindy Davey
    Cindy Davey says:

    You are so not alone in this. And, your posts bring many smiles and/or responses of agreement. Keep hanging in there & keep fighting the MonSter! We are with you❤

  8. Shanna Kinser
    Shanna Kinser says:

    That’s me. My life toppled while I was in graduate school, two semesters left for a three year professional degree. I had a second career path chosen. I was thriving in a highly competitive academic environment. Now I’m fully disabled, unemployed, living on limited income in a “bad neighborhood”. It looks as if I also have Sjogrens. The disease modifiers didn’t work well for me and even though my lesions are very small and confined to my brain, there’s systemic autoimmune disease that just keeps attacking. A good day is having pain and severe fatigue managed to the point that I can get out of the house. This wasn’t what my life was supposed to look like at the age of 54. It wasn’t what my Aunt Helen’s life was supposed to look like either. Who my heart most goes out to are the very young who are attacked aggressively by MS. Once you’re older, you have had the chance to already cross off some things you’ve most wanted to do.

  9. Mary Devereux
    Mary Devereux says:

    I had to leave my job on Friday I lost my driving licence last month I didn’t ask for any of it MS took them I feel a failure when I see all the ms people who can run marathons and climb mountains

  10. Belinda Lewis
    Belinda Lewis says:

    Not to say I’m glad you have these days, but I’m so grateful that I’m not the only one. You, however, give me strength so don’t fail me now!! Lol…thank you for being here with us,you mean the world!!

  11. Karen
    Karen says:

    Hi Penny, Your story really had an impact on me…I’m extremely positive when someone ask me how I’m doing.
    I was diagnosed 2 1/2 years ago with my first big (big to Me!) relapse. Loads of terrible symptoms that over the past 2 years have had considerable healing. I’ve done my part to heal with lifestyle choices. I realize that I’ve been very very
    blessed to have some healing when other people just relapse without any healing!!!! I will do a much better job explaining to people that ask that MS is a terribly debilitating disease that effects everyone differently!
    Thanks for your newsletter I look forward to it! Feeling Blessed, Karen

  12. Joanne Bellamy
    Joanne Bellamy says:

    I was just reminiscing about how excited I was when I left college. I was determined to be the boss in a firm and have an office on the top floor and sit on a big leather chair. I didn’t sign up for a life of struggle I try to keep positive and upbeat but inside I’m caving in.

  13. Kristen Gad
    Kristen Gad says:

    I love this! It’s so true and people just don’t get it. Thank you for being who you are and helping me! I enjoy reading your page, it helps me get through my day

  14. Jeanine Dukelow
    Jeanine Dukelow says:

    I get frustrated very easily now. Little things like something someone says makes me mad. I some times say a wrong word and they laugh at me even though it’s not the word I was meaning to say. I cry on my own a lot because I don’t want anyone to know I’m not dealing with it. I still force myself to get up and go to work everyday and keep smiling. No one but my fellow MSer’s know what kind of struggle that is! My family understand that I struggle but even they don’t know the full extent of it. I have slight tremors in my hands and face that I try to hide. Thank you for sharing your struggles with us. It helps more than you know.

    • Sandra Lorenson Holthe
      Sandra Lorenson Holthe says:

      Happens to me too .. what I’m thinking and what comes out of my mouth are 2 different things. It’s frustrating when I notice it….and it happens often. But lots of people are happy to correct me, then I feel stupid and they think I’m stupid, no use explaining to them ’cause they wouldn’t believe me. It’s sometimes easier to stay quiet. This is one of those silent symptoms of this unforgiving MS. Thus the crying…I feel for you Jeanine, I totally understand. Keep well.

  15. Gail M. Ferguson
    Gail M. Ferguson says:

    Oh is that ever an accurate description of me. I used to grieve over the loss of my job. I psych myself up each and every day to smile for others and internally for myself,just so I can get myself through each and every minute of every day. I was recently told the reason I am not so bad and do so well is my positive attitude. Because it came from the most ignorant person I know I let it slide. But I seethed on the inside. My friends and immediate family (not extended) know better. Thank you for putting it in an article.

  16. Daniela Robertson
    Daniela Robertson says:

    Am one of the “lucky” ones, 17 years and manage to maintain symptoms, relapses to a minimum. I do argue with myself sometimes in the bathroom mirror of a morning when the legs are tired, fatigue really putting up a fight, nothing wants to work – to get a grip, pull yourself together, remind myself there are others worse off. Then read your latest and a big grin appears. Big hugs to you and fellow warriors.

  17. Peggy Pike
    Peggy Pike says:

    I have to daughters with this ms mess plus to go along with that one of them has another thing even worse that I can’t even spell .She had to give up her R N nursing career which she loved .She will be 61 this month .I live through every day with the things they go through ,although they are both married and I am just here watching what they go through .Think you for post and sharing my concerns for them and all that have this thing MS

  18. Aileen Brown
    Aileen Brown says:

    PPMS does suck and yes we are a small minority so far I have been an even smaller minority i have PPMS have done for about 8 years but been lucky that it has not been overly aggressive and I am thankful for that every day

  19. Luisa Vidal
    Luisa Vidal says:

    October 3rd today is the day I don’t want to get up out of bed my knees are so bad shape my lower back I’m so tired I have so much stress in my life God please help me please

  20. Ethel Himel
    Ethel Himel says:

    Thank u, we all need to hear this. I feel like that too,I never want this kind of life. But now I have to learn to live the best way I can with PPMS

  21. Maureen Meyer Hauswald
    Maureen Meyer Hauswald says:

    Indeed. There are now two of me…the physical me who jokes about getting a slow moving vehicle sign for her back and the mental me that says things like, “We’re going to eat breakfast, take a shower, brush our teeth…” They do what they can to work as a team…

  22. Meeya
    Meeya says:

    OMG – I really SO love your posts, and cannot express how much I admire you and what you’re doing!
    Thank you again and again and again for being you!! 😗

      • John Aman
        John Aman says:

        That sounds a bit defeatist, John, and I am sure there are days when you just can’t, but I think it’s important to do as much as you can do, because one day you won’t be able to it anymore. I think that’s what was being communicated here.

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