Multiple Sclerosis makes life hard

Lately it’s been extremely difficult getting my body going in the morning. Now mind you, I’ve never been a morning person, but this kind of slow going is different.

For instance, take this morning…I woke up and lay in the bed a good hour just contemplating getting up. I didn’t throw the covers back immediately as if ready to conquer the day like I have done countless times before. It felt more like the day had already conquered me, and I hadn’t even gotten out of bed yet.

The energy it takes for me to move my legs, let alone use them, seems non existent. I can usually take about 5 steps before needing a break, but even one step seems impossible today. I can’t even talk them into moving across the mattress on their own.

My hands aren’t cooperating either. I’ve punched myself in the face twice already just pulling on my blanket. Then there’s my uncontrollable right hand which has a mind of its own as it shakes and jitters about.

As I lay here in bed, in my mind I have already canceled all of the plans I have for the day.

That trip to the store, it can wait until tomorrow. That dirty bathroom, it will just have to clean itself. Laundry? That’s a nope. My morning get together with friends, it will have to go on without me. Even getting my morning cup of coffee has been put on hold.

I am not a quitter but I have to admit, sometimes my body wins the argument before the argument has even begun. Sometimes my inability to do certain things is not a mind over matter concept but more of a what’s-really-important kind of thing.

I have simplified my life and my surroundings all because of multiple sclerosis. It kind of has this way of weeding out the unnecessary in life…whether that be things or people. But you know, that’s not really a bad thing. As least I know that the people in my life today are genuine and real.

MS may get me down, and at times keep me down longer than I would like, but it still hasn’t won. I am going to keep pushing through the struggles I find myself facing, and if need be I will pause for awhile to catch my breath, but I won’t quit.

MS makes life hard, makes everything hard, but don’t ever let it cause you to give up. You are too valuable, too important, too needed, to quit. Pause, take a breather, nap if you must, but never, ever, ever give up.

Today for me may already be cancelled, but it’s not over. There is still a lot of time to do the impossible. The same goes for you. You can’t give up now.

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.

43 replies
  1. Nicole Lessane
    Nicole Lessane says:

    Thank you Penelope you always have a way to pinpoint everything I am feeling into your posts. I get so fed up with people not understanding how I feel. Tired of living with people who don’t in or care. I read your post and I always feel revived, weirdest thing lol. Better than my Tecfidera.

  2. carly
    carly says:

    this resonates so much with me. i’m so lucky to have a supportive and loving husband who brings me my coffee every morning so i can try and face the world each day. As I lay in bed now, I wonder if I will actually make it to yoga, the grocery store, or the pharmacy to pick up a prescription that has been there for days. The answer is “maybe.” We just keep on truckin’…

  3. Peggy
    Peggy says:

    This described me! So glaf someone can put this into words to describe me! I take mt sisters in the movie …Just keep swimming….

  4. Christine Sutton Placido
    Christine Sutton Placido says:

    This morning I was putting my deodorant on while sitting in my walker when I turned to put it back on the counter I slid off my walker landing on my tailbone really hurt! It took me 3 hours to get off the ground to sit back on my walker and made my way to my wheelchair! The taxing on my strength and frustration can just be over the top!

  5. Wendy Temple
    Wendy Temple says:

    Today as usual I got up, dressed and went off to work. I’ve had no feeling in my left thighs (totally numb) for a while now but the last few days it feels like 1000 acupuncture needles are stuck in it and the pain…well you all know about that. I put on my smile for my students and just kept going. Have just arrived home, made coffee and collapsed on my fav chair. Reading your post and other comments reminds me I’m not alone in this and I just want to say thankyou, thankyou, thankyou.

  6. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Well put Penelope that is like me sometimes. Like the last few days I have come down something like a cold/flu thing and I had to go to bed early last night as it really played up. And this morning I couldn’t move or even wake up properly. My helper came a 8:30 am and I couldn’t even help her to put my compression socks on. I finally got out of bed around 10;30 am as I was getting hungry. A very odd day for me!

  7. Glenys Jackson
    Glenys Jackson says:

    Thinking of you and praying for you. It’s hard to keep pushing when you wake up feeling that way, but we all know how important it is to keep going. Thank the Lord for our stubbornness – and do what you have to in order to keep safe. You’re important to many of us! ❤️

  8. Tara Tucker
    Tara Tucker says:

    The way I see it, not getting out of bed is not quitting… because you haven’t even started yet, so there is nothing to quit. At least, that’s my excuse.

    I truly do see each day as a new start… because some days I know will be a “failure” and I need to just listen to my body and stop. So, I start over the next day. It’s another day to fight.

    As for you, just writing is not giving up. For me, if I’m stuck in bed, just calling for my girls to climb in bed with me and talk a few minutes is not giving up. Any action we take to keep sane, so make other’s smile, to make ourselves smile, any such action is not giving up.

  9. Kim Diamond
    Kim Diamond says:

    You are not alone. Nobody really understands. It can be lonely. There is a lot of us you know. We should develop a phone chain and call each other just to say hello.

  10. Annie Pankow
    Annie Pankow says:

    Sending love and support. I want to tell you encouraging words, as you do to us, but sometimes I can only nod and sigh. This is a crappy disease. Overwhelmed by it today too. To better days …

  11. Kelly Behrens
    Kelly Behrens says:

    People that don’t have MS don’t understand. They look at me as if I should be well because I don’t have any growth growing on my face or my back or my legs. They don’t understand it is from the inside. I hate to admit it but even my mom does not realize I cannot do things sometimes. I wish for one day all people to have this blasted disease just for a little while so they can see what it is like for us.

  12. Pammy
    Pammy says:

    I really wish that I could make my husband understand what it is really like , why I simply can’t do something in the house today or make or keep most plans. and why is he scowling at me
    Why is it so hard to make people see that I would dearly love to do but just sometimes cannot

    • Lisa
      Lisa says:

      I TOTALLY get what your saying! I personally think that guys just can’t stand seeing someone they care about struggling to do basic things. My bf of 12 years is doing the faces and comments now. Diagnosed 22 years ago and have GREAT days then total SH** days. Like others, just can’t believe how I can be so different day to day. Hang tough!

    • Julie
      Julie says:

      My husband does the same thing. Makes faces, gets mad, tells me it a mind over matter thing. It gets so frustrating! I have been limited for the last few days and I can see the disappointment in his face. He thinks I am just lazy. I wish for just one day he could walk in my shoes, then maybe he would understand.

  13. David
    David says:

    I’m “lucky” getting dx at 49. Physically I look normal, but cognitively I’m a wreck. I taught high school over 25 years, now I need my phone for directions to places just around the corner. I know I will never get back what I lost, still I keep active (yes, that includes frequent restroom breaks!).
    The real problem is I can’t tell if it’s my MS or no longer being young (I know age is relative).
    Walking to classical music helps immensely! I was in a wheelchair for a summer, to a walker to occasional cane now.
    I just don’t know what the future holds…
    It scares the heck out of me.

  14. Leslie Beaver
    Leslie Beaver says:

    We can never win in a battle against our own bodies. Try of course. But also be willing to heed the message coming from your own body. “No, not today” must be acknowledged. Humbling but unavoidable.

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