You are not alone

A life with Multiple Sclerosis can be a physically challenging, emotionally draining, round-the-clock exhausting and lonely job. Everything we do takes an extraordinary amount of effort to complete and some things become nearly impossible to do causing us to get really creative in finding an alternative to our otherwise normal way of doing things.

I want you to know that no matter what you are facing today or how difficult things become tomorrow…you are not alone! There’s an army of us warriors standing shoulder to shoulder, together in this fight.

If you cried in the shower this morning because you were so unbelievably overwhelmed with the load you have to carry and feel as if the whole world has flipped upside down, inside-out and turned up on its end…you are not alone. Somebody else cried, too.

If you find yourself staring at piles of laundry, a sink full of dishes, shoes tossed in the hallway, unmade beds, dirty toilets and are fighting the guilt of the day coming to an end with everything still in the same place it was when you woke up…and then you find yourself wondering “what did I do today?”…you are not alone. Somebody else wondered, too.

If you miss running with your kids, attending graduation parties and baby showers, standing in long lines waiting for tickets to the best show on earth, and joining in on all the fun everyone else seems to be enjoying…you are not alone. Somebody else misses it, too.

If you woke up exhausted after a full night of rest and are trudging through your day longing to go back to bed so you can sleep just a little bit longer…you are not alone. Somebody else did, too.

If you wished you could still be part of the buzz around an office, the business of deadlines and bad morning coffee, cranky bosses, nosey employees and water cooler gossip…you are not alone. Somebody else wished, too.

Maybe not every person’s experiences with MS are the same and the difficulties you face are different from mine, but I am convinced there is someone, somewhere in the world who is going through the same overwhelming moments as you. Just because you don’t hear about them or know them personally, doesn’t mean they don’t exist.

Keep hanging on. It’s okay to feel like you’re falling apart because in many ways you are…well, your nerves are so I guess that’s the same thing since they are a part of you. Eventually things will get better and you will find ways of coping with all the changes. I can guarantee you that.

Right now the days may seem long and the pain may outweigh the joys. It’s tough…I get it, but it’s not impossible. Let’s carry this burden together. Let’s offer a listening ear, a gentle hug or a nod of understanding to those beside us. We need each other. That’s how our strength grows.

MS Gets on My NervesMS WarriorMS Superhero  

97 replies
  1. Wendy
    Wendy says:

    I carried out a couple of small tasks in the yard today which took a lot of effort. I remotely thought about sharing my accomplishments with my supportive husband, I didn’t as they seemed “so insignificant”. After reading this article though, I realized you would have to have MS to understand how momentous these small acts really are! Thanks for letting me know that there are others in the same boat.

  2. Mandyrose
    Mandyrose says:

    Your writing is a blessing for us, Penelope. The talent you have to express and give meaning to what we go through is very helpful. I don’t have support from friends anymore. Many are long gone over these 21 yrs. To anyone who got divorced because of MS, I feel your pain. I have discovered strength I never knew I had. God bless us all. Focus on everything you still have. It helps to be positive.

  3. Maxine Beale
    Maxine Beale says:

    This is so true, my husband has progressive ms and ms related dementia, last week was the 1st time he did not know who our daughter was, it is also a disease that has a very hard impact on the family unit, as supportive as I was when he was at home there were days that were so hard to be with him, he is in care now, it took a long time and therapy for me to accept that putting him in care was the right thing to do. My prayer is that there will be a cure one day.

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

    I have been helped by the Florence Nightingale Group for my shower and getting dressed that has helped me and is good to me and Janice. This is the only help we have and that may be good for us, but I’m not holding my breath.

  5. Jesus Ramirez
    Jesus Ramirez says:

    This is my husband’s FB page I too have Ms I just take it day by that’s all we can do I delt with this for years and all of us just need to be strong cuz it’s not going away God bless all of be us I always tell myself this is not going to get the best of me have Ms and seizure disorder I always look it at this way we could have something way worse God bless to you all day by day that’s all we can do

  6. James M. Dorn
    James M. Dorn says:

    Then get out of the shower and hide all the pain, the best we can from every living soul. I did the hiding for years, the cost was extremely high. I would never hid it, if I had to do it over.

  7. Sue Allen
    Sue Allen says:

    I cry most mornings in the shower. I have M,S. for the rest of my life, even though i have plenty of friends who have M.S. & some who hav’nt i feel so very alone. My husband is so supportive as is my daughter so why do i feel like this?

  8. Mary
    Mary says:

    Thank you for the encouragement. Really need it. Need to really get down to getting things done around here…an unsure future, just never know. Thanks Penelope and you all.

  9. Karen Dean
    Karen Dean says:

    Yes true words and I do my crying in the shower all the time as I hate my husband seeing me crying. MS is hard word to work with normal days or nights. Hope all ok much as you can be.

  10. Gail M. Ferguson
    Gail M. Ferguson says:

    Today I am feeling exceptionally fortunate. I have pain that is so intense and diffuse that every movement is a challenge. I was stripping the sheets off of the two twin beds in mine and my husband’s room when my son came in said “mama! Stop! You should not be doing this,I will take care of it! You will wear yourself out before you start your day and I can see your pain in your eyes.”
    It doesn’t get any better than that. He is a treasure for sure. I am loved and respected and grateful for all of my family who take wonderful care of me.

  11. Meg Spinella
    Meg Spinella says:

    My husband became ill last night and I had to step up (with my walker) and do dog care, supper clean-up, and locking up the house. Also had to keep an eye on his condition (dizziness and vomiting.) I was able to do what was necessary but felt so vulnerable.

  12. Beth Genicola
    Beth Genicola says:

    Sometimes I need to see these posts as a reminder to myself but I don’t always have to be strong I am allowed to have moments where I break down and that’s okay I’m not alone in this

    • Michael
      Michael says:

      Absolutely! Crying, feeling overwhelmed, even hopeless, etc are normal human emotions. Your positive artitude remains part of your personality. It is therapudic to go through these emotions and not have them build up, which can be stressful and exacerbate your symptoms. At least that’s what I believe. You are indeed not alone.

  13. Meghan Roussell
    Meghan Roussell says:

    life sentence..yes Fran Chisholm I agree…
    I was diagnosed in 2016, 6 months after a car accident in 2015 & I was only 22. it’s hard not to think of it any other way! i love reading things like this, because it reminds me I’m young but, i’m not alone and other people feel the same way.. all we can do is be there for eachother for a shoulder to lean on ❤❤

    • Meg Spinella
      Meg Spinella says:

      I have some ideas on this. My shoes must have tread, a cover or strap over them, be lightweight, and have significant support. I’ve had MS for 34 years. Often I’ll find a great sandal or shoe and it’ll be discontinued. SAS is my go to sandal that meets all 4 criteria, and some are stylish. Me Too has this new sandal-I ordered 2 pair- Adam Tucker by Me Too. None of the brands I buy are cheap but footwear is my most important investment in QOL.

    • Rachel Wilson
      Rachel Wilson says:

      Don’t forget it’s ok to cry. Sometimes it’s all you need to recognize this is hard and won’t go away. Cry your heart out wipe that last tear away, now that you have shed that turmoil ❤ get ready to fight again

    • Odette van Straalen
      Odette van Straalen says:

      Rachel Wilson crying has become a huge relief for me. I try not to do it in public, that’s embarrassing for everyone, but letting it out instead of always trying to hold it in helps me get over it much more quickly. A good cry does wonders.

  14. Stephen
    Stephen says:

    Beautiful. I am blessed to have a partner who take exceptionally good care of me and our home. But if I had the ability to cry (I’m working on it!) I’d be crying in the shower with you. (Figuratively speaking.)


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