two friends

Life goes on

Today is one of those days I am forcing myself to get out of bed and get dressed because I simply have no other option. It’s an “I have to get up” kind of day. There are things to do that simply won’t wait for Multiple Sclerosis to behave or for someone else to do them.

Trust me, if I had a choice I would stay in bed. My weakness today is beyond weak…it’s weaker than weak…it’s “I just ran an uphill marathon while pushing a boulder for two days with no sleep” kind of weak. I can’t just start my body moving in hopes that the rest of me will catch up. Oh, if only that were the case, but MS doesn’t seem to work that way.

Those of us living with MS do a lot of things that our bodies don’t like. Many times we drag it along kicking and screaming the entire time we are up and about because, well, life goes on…even with MS. It’s not like we can call a time-out or ask for a day off. Wouldn’t that be nice?!!

Most people can’t see the things we endure as we head in to work every day exhausted or the weakness and pain we go through as we run a few simple errands begging for the day to be over. We drag MS around with us everywhere we go because we have no other choice. It won’t get out of our way, and there’s no way around it. In order to do anything we have to drag it with us along our journey.

We push ourselves and make ourselves keep going because deep down we know that there will come a day when we will no longer be able to keep going. A day when this “thing” we’ve been dragging around everywhere gets too heavy and we can no longer drag it along any more.

That’s the reason we fight. That’s why we get up each day, exhausted and struggling. It’s not because we want to pretend to feel great and plaster on a smile for the world to see. It’s because we want to take advantage of every moment we can, while we can. We want to live life to its fullest creating lasting memories and beautiful moments.

Today belongs to you, even if MS keeps trying to steal all the attention and may have already tried tripping you up. I won’t deny the difficult journey. But regardless of the challenge today, I want you to know that you are not alone in this fight. There are lots of us, thousands, who understand how hard it is to function in an able-bodies world. We not only fight along side you, but we stand with you.

Together, hand in hand, we set out on this journey called today. And together we are going to make it.

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.

43 replies
  1. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    That is encouraging Penelope. I have been stuck at home for over 6 months now. Just going out to the doctors or mainly music is the only outings I get and for a gregarious person this is hell for me. My wife has a form of PTSD (Past-Traumatic System Disorder) and is not in favour of going out, and I can’t drive at this time so I’m stuck here. This is not only MS so I can’t fully blame it.
    But I still get around and make breakfast and other little things I can accomplish.

  2. Rachel Smith says:

    This has been me today and yesterday… Fatigue, head pains, staggering and tripping… It’s so hard to cope. Off sick from the ward I work on, it’s so demanding physically and emotionally. MS – you are a git!!

  3. JoAnn Vonada-Callinan says:

    I can sleep all day….all day everyday! When I force my self up I’m so weak I need to sit after little excursion. I’m very concerned. I take oxytocin, oxycodone, gabapentin daily for my pain. Could my meds be causing this? But if I try to skip a oxycodone I feel the effect. I don’t even want to go out and do the things I love. I hate this…………

  4. Gemma Harris says:

    Well done for getting up. Such an achievement on those days. You are an inspiration. I hope you soon get the chance to rest. Huge massive hugs. Fatigue is just the worst and when it hits it’s totally invisible to everyone. Xxxx

  5. Debbie Owens
    Debbie Owens says:

    I read this blog with tears streaming down my cheeks. You eloquently described the exhaustion that is virtually impossible to articulate and even more difficult for anyone not living it to understand. I recently stumbled across your blog and what a blessing it has been. With this illness I tend to feel that I’m imagining things, not being strong enough, and even losing my mind. Your blog has shown me that I’m not alone and these things are happening to others. Our friends and families love us but they don’t “get it”. So many well meaning comments cut deep…”You need to get out and shake some of the dust off…If you put your mind to it, you can do it…You look fantastic, you must be healing…I’m sure the MS meds will clear up your symptoms…”. I understand the intent comes from a place of love. It’s so incredibly hard for anyone to grasp our reality. Thank you for committing your precious time and energy into this blog. You help many more people than you could possibly imagine. Have the best day possible and know others are cheering you on, channeling positivity, and lifting you up in prayer.

    Warmest Regards,

  6. Kellie
    Kellie says:

    I wish I could get my brother to think this positively -He is very depressed lately and it is so hard to watch. Thank you for the encouraging words.
    I will continue to read them to him. (MS had taken his vision)

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