What A Multiple Sclerosis warrior looks like

Multiple Sclerosis is weird. You can wake up one morning feeling okay and the next wishing you didn’t wake up at all. It messes with your body, your emotions, your relationships, and your job. It has this way of touching every part your life.

MS is definitely not a disease you can keep to yourself. We try though…don’t we? I know I do. I try hard to keep it neatly contained in its own little space but it doesn’t seem to stay where I want it to.

If only people could see inside my life for a day and experience not just the physical symptoms of MS, but the emotional, relational, and financial challenges it brings along with it. Oh, my…they’d be running for the hills to hide away.

MS is something I wouldn’t wish on my worst enemy, but it is something I wish everyone could experience for a day so they would have a bit more understanding, compassion and patience with me. This way, when I’m having a bad day, I don’t have to work so hard trying to explain myself and having to convince people that my pain and struggles are real.

Today I woke up and my hands wouldn’t cooperate. The tremors were a bit more intense than I have experienced in times past. As a matter of fact, my entire body feels like an earthquake has exploded in 10 different directions. Nothing is working as it should. But I peck out my thoughts and send my heartfelt message of encouragement to you because I don’t want anyone to feel defeated, alone or hopeless. I don’t want anyone to give up.

If I can do it, you can do it. We got this.

We didn’t ask for this fight. I don’t know anyone who picked MS out of a lineup and said “I want that disease for the remainder of my life.” We didn’t cause it nor can we end it. The only thing we have left to do is to fight or give up, and giving up is not an option.

You see, MS warriors are made in the struggle. You are my hero because you fight battles every day that no one will ever see or know about. You wield your sword and fight gallantly even when your knees buckle under you and it’s hard to hold your head up. Never doubt, not for a moment, your strength because even on your weakest days you are strong.

Fight on, oh mighty warrior. Fight on!

MS Gets on My NervesMS WarriorMS Superhero

 





22 replies
  1. Robyn Barrett
    Robyn Barrett says:

    Penelope, thanks for an excellent article.

    I guess I consider myself lucky, in a way. I’m a writer (nowadays) and love to do research. When I was diagnosed in 1997, I knew absolutely nothing about MS…so I went out into the early net and library. One of the first articles I found was about how some of the cases of ‘MS’ turned out not to be after all. (those of us from that era and before know how it sometimes took years to get a ‘clinically definite’ diagnosis of MS.) I was particularly disturbed by how many cases of ALS were misdiagnosed as MS. Unfortunately, ALS is the absolute worst diagnosis – a 3-5 year death sentence, where in most cases they slowly drown in their own saliva because they stop being able to swallow. How totally horrible would that be?? After reading about ALS, I knew that I could look at my diagnosis and say ‘there are lots of worse things you can have.’

    Yes, there are some forms of cancer now that have a very high survival rate…IF they are caught early enough. But there are many that are still in the infancy of treatments, and if you get diagnosed too late, EVERY form of cancer will kill you. So there are upsides to having MS that I try and hang onto when my pain ratchets up into the stratosphere or I fall down repeatedly. Things are not perfect, and could definitely be better…but they could also be much, much worse.

    Wishing everyone love and happiness. Really, what else is important?

    Reply
  2. Linda
    Linda says:

    I just found this site and I love it. I was diagnosed in 1982 with RRMS, and have been in SPMS for several years now. No, it is not fun, none of it! It is unpredictable, weird, strange, an alien force that takes over my body, that even I don’t understand, on some days. But, I have no choice but to learn to live with it. And to laugh at it, because ignoring it didn’t work. I have great, supportive Doctors, who have no answers, but keep trying, friends who don’t understand, but support me anyway, and my fur babies
    who love me even if I do fall over them, or step on a tail occasionally. Yes, there are bad days, bad weeks, but I am an expert on many things at the ripe old age of 70. I can handle it. I am an expert on MS.

    Reply
  3. Rhona Kingett
    Rhona Kingett says:

    I’ve had a bad couple of days and an infection in my leg, probably due to me being in a wheelchair for long periods of time. I was beginning to let it all get on top of me. I needed to see this. It is worth me holding my head up high and continuing to fight. Thank you so much.

    Reply
  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope for another great message. MS is a weird thing, and we do have some bad days. But we have some good ones and I cherish them and try not to forget them. I have found I learn from them and try to use them to work out better ways to live with this mess.

    Reply
  5. Jan
    Jan says:

    Thank you Penelope. You keep me going when I want to give up. I just had a brain & cervical MRI for the 12th time. These 1 1/2-2 hour tests are a challenge in itself to keep still so long. Ugh!! Also dealing with Crohn’s disease and fight on every day without anyone knowing what I’m battling with on the inside. I push on when I want to give up. I look forward to reading your encouragements. God Bless you, Penelope!! You’re a true warrior!! 🙏😇 Jan

    Reply
    • Linda
      Linda says:

      I’m right there beside you, Jan. MS for 38+ years, Crohn’s for nearly that long, but we do what we want to do most. For me, that is live my best life! Some days, that may be a nap with my cat and my dog, on other days, it may be digging up a new section of the yard to plant more flowers! I am so grateful to be alive!

      Reply
  6. Peggy
    Peggy says:

    Yes THANKS FOR PUSHING THROUGH AND POSTING. I needed this message. Love the thoughts for today especially “That, my friends, is called surviving. Not healing. We never become whole again … we are survivors. If you are here today… you are a survivor. But those of us who have made it thru hell and are still standing? We bare a different name: warriors. ― Lori Goodwin” Peggy

    Reply
  7. Wendy
    Wendy says:

    This was me sunday…woke up wishing I hadn’t…I felt gross..I was spazzy and nauseous …feverish and cold …headache and achey…it wasn’t the flu because the next day I was better…I hate MS

    Reply
  8. Lesley Rayner
    Lesley Rayner says:

    So sorry you feel like this today, but please remember that your words help many people and though I don’t know you and am many many miles away you help me feel less alone on this journey that we didn’t choose. Thanks 💐

    Reply
  9. Holly
    Holly says:

    thank you for struggling through sending your daily message to us 🙂
    choked up as typing with numb hands— not because my hands are numb LOL because of your message.
    my gosh you hit the nail on the head!
    just for 1 day, if people could live in our bodies to feel everything we do (physical, mental and emotional).
    invisible symptoms stink!! and are near impossible to convey.
    but… we all are warriors that continue to push through each day and try our best to live it to the fullest, or at least get through each minute 🙂
    wishing all my fellow MS warriors a new year filled with many blessings!!

    Reply
  10. Katie
    Katie says:

    I concur with all of your words! I avoid telling people as they have no idea what MS actually is! Why should they? I don’t blame them plus it’s so difficult to explain I really haven’t got the mental cognition to go over the last 16 years of my ms journey !!The people closest to me who I care about understand and that’s what matters xxx

    Reply
    • Chantel chansa
      Chantel chansa says:

      I too agree with this message. Two days ago I had a small relapse and me living alone in a different state it was and us hard to explain to my new community what this is and does. I’d rather just tell them I’m not feeling well. My family of course understands but they are very far away but it doesn’t change the fact of anything. I know I still have support from many and the new friends who are close to me.

      Reply
  11. Mari
    Mari says:

    Hello!
    I have MS, diagnosen in 2014. I live in Sweden, Stockholm.
    I read you’re post everytime i recieve one on my email. You’re words to me are so hopeful and it brings me through the days good and bad ones.
    Where do you get you’re inspiration from?
    Last but not least, Thank you so much for you’re inspirationel words 💐💐
    Best regards
    /Mari 🤓

    Reply
  12. Faith
    Faith says:

    Wonderfully said I couldn’t have explained it any better myself. I too which I could switch places for a day with people that don’t understand. One day at a time trying to stay positive and strong. It isn’t easy but we all do it.

    Reply
  13. Angela Moore
    Angela Moore says:

    I had a psych eval a while back and she told me to tell her one thing about MS that nobody could tell her. I thought for a minute and with many tears I said, ” I would rather have been diagnosed with cancer”. Of course she looked at me and exclaimed, ” THAT’S CRAZY!!!!”. But here is my way of thinking. I have dealt with cancer, and yes, I have seen the devastation it can cause. But cancer is treatable, often almost curable. The treatments are hard and punishing at times but they work in so many cases. I am 39 years old and I have to live with the realization that I am going to wake up every day, for the rest of my life………getting worse. Our treatments won’t cure us, so far there is no hope of that. They will only “keep us comfortable” at best. We live a semi-normal life because we choose to push forward and do so and not give up. I am crazy? Maybe so……after all, this is all in my head haha!!!!! But until I can come up with a better explanation I’ll just keep running around like a mad woman, trying to keep my ducks in a row…..all while at least one of them little suckers runs off.

    Reply
    • Holly
      Holly says:

      oh honey my heart aches for you. totally get it. i definitely don’t want cancer 👎🏻 but maybe a broken arm. at least it’s something tangible that people can see.
      or bronchitis that people can hear 👂🏼 the congestion.

      i love 💗 the ducks 🦆 in a row till one strays.
      PERFECT way to describe my life and i’m sure many of our fellow warriors.

      sending you a huge bear 🐻 hug 🤗

      Reply
    • Irina
      Irina says:

      My dad died a gruesome death of pancreatic cancer at 39. I think if he had had a choice, he would have chosen to live with MS.

      Reply
  14. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    Onward we go thru the muck and the mire. Questions with no answers. Feelings with no reasons. The “Why Me?”. And we fight on. Be well my fellow warrior.

    Reply

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