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Three hands sitting on a couch. One making a fist like a rock, one laying flat like paper, and the last one is making a scissor shape. Rock, Paper, Scissors.

Just One of Those MS Days

The house is a mess. Too tired to clean. Cell phone sitting in my lap. Half charged. Just like me.

The sofa is the only place I’ve been today. The couch cushions are starting to feel like a permanent part of my body.

Medical bills litter my living room floor. And each day new invoices slide through the mail slot, adding to the growing stack of past-due notices. Making bankruptcy look more like a viable option.

Too fatigued to care

The television is broadcasting various talking heads. Screaming at each other about what the President tweeted. But I’m too fatigued to even care.

I glance down and see a magazine open on my coffee table. An advertisement for (1-800-273-TALK) is staring at me. My eyes become waterfalls. But I’m not in emotional distress. Besides, I love myself like Kanye loves Kanye. I’m just feeling weak. I’m just having one of those MS days.

Wanting to go back to bed

This morning I could hear my neighbors leave for work. While they started their day, I laid in bed waiting for my husband to help me get into my wheelchair. Following the transfer, I slowly rolled to the bathroom. After struggling to brush my teeth and wash my face, I wanted to climb back into bed. But instead, I convinced myself it would be better if I sat on the couch. And that’s where I’ve been for 6 hours. Doing nothing but sitting and gazing mindlessly at the TV.

Hard to be productive

It’s hard to be productive when most of my energy is being used to keep myself from collapsing on the floor. Everything in my life gets neglected. Dinner has to wait because I’m too exhausted to prepare the food. I can’t answer emails because my vision is blurry. The laundry will have to stay dirty one more day because vertigo has me dizzy.

MS moved to the forefront

For years, my diagnosis was just an annoyance. Something I could ignore. But recently, all that background noise has moved to the forefront. Spasm days. Restless nights. Confused moments. Chopped up sentences and half thought out ideas are norms for me.

Crying all afternoon. Waiting for the bear to get off my back so I can at least take a shower. It’s been two days and no shower. And I feel nasty.

There are pins and needles all over my body. Crawling on my skin. Living inside of me. What the hell is going on?

Like playing rock, paper, scissors

My vision is getting worse and I’ve been sleepy all day. I feel like I’m caught at the bottom of a pyramid scheme. Like I’m playing some twisted version of a child’s game. Rock, paper, scissors count of three. You lose again. Here’s some fatigue.

And all the drama has me feeling fragile. Not fragile like a flower. Fragile like a bomb, ready to explode at any time. Silently screaming at the Lord. What did I do wrong?

Reaching for my coping strategies

So as my soul hollers, I reach for coping strategies. I close my eyes to get some comfort. And I focus on the sound of my mother’s voice telling me, “Fight the bad urges and concentrate on pleasant thoughts”.

Therefore, today I’m thinking about others. And I hope someone will read this and feel a little more understood. Feel just a little less vulnerable. Not so sad. Not so helpless. Not so alone. And realize we all have those MS days.

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

  • Toddlius
    4 weeks ago

    @Nicole Lemelle – Lately, every time I’ve gotten out of bed, I just wish I could stay in bed. It’s a real struggle to get anything accomplished. Great article!

  • JUJUBEE6318
    4 weeks ago

    Nicole…This post that you shared was so accurate! I began reading and couldn’t stop because my feelings and experience with this disease has been exactly like this! I have had MS for 24 years with relapses on and off. However, this last year and a half the MS ‘stuff’ has been relentless! A lot of couch time, confusion, stress, emotional fluctuations, visual problems, sleeping issues, bladder issues, pain, spasticity and extreme fatigue. I am now using a power wheelchair with less and less stamina and ability. I am so grateful to know that I am not alone in this. I know that I am not crazy! Thank you for sharing this very important and intimate part of your life with us all.

  • MommaMia520
    4 weeks ago

    Thank you thank you for your excellent description of what a day in the life of Mia looks like! Not everyday, but on any given day… I do have really good days when I’m not holding space on the couch, I really really love those little things ❤️
    I’m going to send this to everyone who knows me!!

  • zeus73
    4 weeks ago

    Yep. I sure do get it. I’ve learned from this forum that I’m not the only one living…or should I say “fighting” because though I am alive, there are periods that don’t feel like living. At least not the way I used to define living. I try not to count my losses but instead embrace my gifts. Sometimes my balancing skills are as off intellectually as they are physically. I push or pull and surrender in between.

  • messeeone
    1 month ago

    Thank you, Nicole. The fear of the sofa becoming a part of my body is real! Your words are “right on” and, as the others said, now we feel less alone. I also want to express my sorrow for the worsening of your MS and I admire your perseverance and desire to help others. You have succeeded in helping me today.

  • Gruitz
    1 month ago

    Nicole,

    Thank you for your article, I’m an MS patient that was diagnosed about 17 years ago. I’ve been relatively stable over the course and have bounced back time and time again, up until very recently. I can acutely relate to the paragraph “MS Moved to the Forefront” as that’s what my past 6 months or so have been.

    It’s helpful to know that there are others out there that can relate to what I’m experiencing, your article was very helpful for me today and got me pretty emotional. Anyway, I appreciate your words and bravery.

  • Janus Galante moderator
    1 month ago

    Nicole,
    this article spoke to many of us. I had to read it a few times in order to “absorb” it today.
    Thank you that in spite of everything you’ve gone through and described to us, that when it came right down to it, you would end up encouraging the rest of us!
    Thanks so much Nicole
    xxxx’s Janus

  • Dimitri
    1 month ago

    Great post.

    The nothingness in our lives is the most painful. Every day is the same. Just waiting for something to change. It really is insane.

  • Janus Galante moderator
    1 month ago

    Hi Dimitri,
    I hear you,
    it really does feel like nothingness sometimes, especially when the days all run in to each other waiting for something positive to happen….!

  • MsStella
    1 month ago

    Thank You, so much for posting this; at first i thought it was uncanny how you completely described how my days are! then i realize how important it is that you shared this. Now i know that others are going through exactly the same things that i am going through. it just helps to know that i’m not alone going through it, and that tens of thousands of others are doing the same.

  • Janus Galante moderator
    1 month ago

    MsStella,
    Yes, one thing we know for sure is that we definitely aren’t alone in all of this.
    Thank you for posting! Janus

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