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What You Don’t See

What You Don’t See

I enjoy going out and having a good time. I love hanging out with my friends and family and making memories, too. However, when I get a free weekend with absolutely nothing to do, and you invite me to go out, I may not always be up to going. It’s not to be rude or snobby, and it’s not because I don’t want to. The simple truth is, I have MS, and when I get a day to lay around and do nothing and sleep as long as I want to, you better believe I’m going to take it.

Perfectly content at home

I feel like sometimes people must think I’m lame. I’m still young, but I have my priorities, and I’m the type of person that sticks to that. I’m a wife, a mom, I work from home, and I’m a homemaker. I’ve had my days of partying and going out every night. Right now, at this point in my life, I’m perfectly content spending lazy evenings at home with my family and enjoying the weekends relaxing. So, I don’t go out a lot on top of everyday life. It’s not because I don’t love a good time, because believe me I still do, but right now my daily life is exhausting. I wouldn’t trade it for the world, but it does take a lot out of me. And when you add MS to the mix, that makes it that much more difficult to want to get out. So, when you ask me to go out with you this weekend, I’m going to have to politely decline, and here are the many reasons why:

What you don’t see

You see, this weekend is the first weekend this month that I get to myself. This weekend is going to be the weekend that I’m allowed to lay around and do nothing. It’s the time that I get to sleep as much as I want to. It’s the time I get to recover from a long and hard week. I’m not lazy or a party pooper, but you didn’t see how the week’s activities took up every drop of the energy that I had left. What you don’t see every day is how fatigued I am. How no matter how many nights I get eight hours of sleep, I still wake up feeling like I haven’t slept at all. How some days it’s all I can do to keep pushing.

My tired and aching body

In all brutal honesty, some days when I wake up, I can’t wait to get back in bed that evening, because just the thought of everything I have to do that day is overwhelming to my tired and aching body. You didn’t see how my body hurt because I did too much and my muscles decided to spasm. You didn’t see how weak that hot day at the park with my son made my legs. You didn’t see how the heat zapped me and left me needing three full days of sleep, or how the cold made my muscles tense and it took hours to finally relax again. You didn’t see how I just did math with my hands because my mind is too foggy to remember basic algebra. You didn’t see how I struggled to form a sentence because my brain feels like mush.

The way this disease affects my body

What you don’t understand is how I push myself and mentally encourage myself daily just to keep going. You don’t see the time I need to sit on the couch for a minute just to find the strength to get back up. What you don’t see is how hard it is for my brain to keep up with my body, and how my nerves are constantly misfiring. You don’t see the way this disease affects my body. In fact, you probably don’t even see me as having a disease at all, because unless I’ve told you, it’s invisible.

Don’t take it personally

So that, my friend, is why I can’t go out with you tonight. I would love to, but I have to take this time to let my body and mind unwind. Don’t take it personally. I just know when I need to give my body time to play catch up and when I need to rest and recover. I have to do this so I can continue to keep up with my crazy beautiful life. It’s not you, it’s my MS, and it’s all the things you don’t see.

XOXO,

Calie

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • MikeW
    1 week ago

    This article, like so many articles on MS, is all about the person who has it and nothing about the people who live with the person who has it. If one person in the family has MS, everybody has it. As the husband of a woman with MS, there are a million things I would love to do but cannot because my wife has MS. If you are the spouse of someone with MS, you have two choices: Learn to enjoy doing things by yourself, or don’t do them at all.

  • Shelby Comito moderator
    7 days ago

    Hi @mikew, thank you for taking the time to reach out. I think you touch on such an important point. MS takes a huge toll on the entire family – spouses more than anyone else. I want to let you know that we have a special section devoted to caregivers here: https://multiplesclerosis.net/support-for-caregivers/ I hope it offers you some helpful resources and support. Thank you again for reaching out and please feel free to do so anytime. – Shelby, MultipleSclerosis.net Team Member

  • soaggie93
    2 months ago

    Out of all the articles I have read, this one resonates with me the most. “Daily life is exhausting”.

  • Giamia
    4 months ago

    Sooooo me i really dont care what anyone thinks anymore. You will never understand until God gorbid it happens to you tired of everone thinking there is nothing wrong withme unyil i walk into a wall lol

  • Carletta
    4 months ago

    Callie, you hit the mark completely. Thank you.

  • gardenguru
    5 months ago

    Calie,
    Great piece ! It fits for me….I choose not to wear my MS “badge” ( of courage) unless absolutely unavoidable. It’s often hard for those around us to see us upright and functioning,AND truly appreciate what it takes for us .
    Thanks for your insight

  • Ahollmann22
    5 months ago

    Calie, great blog and outstanding articulation of many thoughts of your struggles. I almost feel, as if you were reading my many thoughts and struggles that I face on a daily basis. Take care !

  • SueK
    5 months ago

    I would give the world to be anything but a bump on a log, not going anywhere fast. My journeys take me from bed to the couch, to the bathroom more times than I wish, and back to bed. I am a wife. A mother, although my kids are grown and in their 30’s, my daughter married with a baby of her own living out of state. I see then once ever few months. My husband and son are my caregivers. They keep house, cook, drive me to appointments and take care of my needs. I’d give anything for it to be the other way around.

    I have been disabled for years. My cog fog so severe that writing this has taken much too long. You work? Wow! I used to hate work, but now I miss it greatly. You speak of having a day to lay down and rest? I’d love a day when that’s not what I do almost 24/7.

    I used to be active, and not so long ago. How quickly things can change. Five years ago I lived in CA and was hiking 5 miles a day. We loved sightseeing, going to the beach, walking our pups, working out at the gym. Today I watch travel channel and watch others do it.

    Enjoy your youth, your “good MS days”. If and when you go SPMS, the suffering you face today may someday be the good times of yesteryear. This isn’t to bring anyone down. It is my reality. It is many MSer’s reality. Just listen to us old timers… be grateful if you still function most of the time, but need a weekend to relax and veg out. And to my friends (who are now all virtual) I sure miss our time together. I wish I had pushed just a little harder years ago and not let this monster kibosh our fun. Now I can only look forward to living life through your posts.

    And to my family….thank you. You are my life line. I don’t know what I did to deserve you.

  • Shelby Comito moderator
    5 months ago

    I hear you @suek, and thank you for taking the time to share so openly and honestly. It’s true that it’s so much easier to be thankful in hindsight instead of practicing more gratitude in the present. I’m so glad to hear you have such a supportive family. We are grateful to have you in our community! Best wishes, Shelby, MultipleSclerosis.net Team Member

  • dirt550
    5 months ago

    Interesting read. I don’t have MS. But, I do have nerve damage from spinal stenosis. I was also very active. That all ended 10 years ago. Now, I’m a shell of what I once was. It sucks. And, it takes a toll mentally too. I have a good woman, son, and grandkids who understand, though it’s not easy. I was always independent. Now, I’ve become the dependent. I’m lucky, and thankful for them. I don’t know where I would be without them. I used to be their strength. Now, they’re mine.

  • HMS
    5 months ago

    Great article!!

  • @masbrautigam
    5 months ago

    What a great article:) it’s so true and hard that it’s invisible.

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