Is It Really Invisible?

I’ll never forget I have MS; it’s a part of me always, but I have my good days where it’s tucked away so well that for a moment, I feel completely normal. Then there are the days where it feels so obvious to me that I think everyone else must see it, too. If you want to know what it’s like to live with an invisible illness, feel free to read those last few sentences one more time; that describes it pretty well.

Forgetting to slow down

My disease has been stable for a while now. I still have symptoms, but they aren’t as severe or debilitating at the moment. It’s easy for me to forget that I need to slow down and I need to take breaks. It’s easy to forget that sometimes I need to set limits.

It’s easy to end up couch bound

For example, when I start cleaning, I go crazy. I have ADHD when it comes to cleaning. I begin my cleaning slowly, telling myself I will work my way around to everything I have to do, but somehow in the middle, I remember everything else that needs to be done, so I’ll go ahead and do that, too. Needless to say, cleaning the bathroom may turn into cleaning the bathroom plus reorganizing my closet, cleaning the blinds, and scrubbing the tile grout. When I get started, I go into a cleaning frenzy. I feel great once its all done, but I also feel exhausted and know I’ve done too much. It’s easy to start doing something with good intentions and then end up couch bound for the rest of the evening and maybe even part of the next day because I overdid it.

Fatigue only MS can cause

Just like it may be easy to forget to slow down and set limits, it’s just as easy for me to begin doing something and be slapped in the face with the notion that I, indeed have MS. Vacuuming would be an excellent example for this one. Vacuuming to anyone else is an everyday task. It’s not challenging. For me, however, vacuuming is daunting. After I have vacuumed, I feel like I have run a marathon. The exhaustion that comes isn’t from being out of shape or lazy. It’s the type of fatigue only MS can cause. It hurts my body, and it leaves me feeling weak and spent. Afterward, my back will hurt for several hours. It leaves me with the realization that my body isn’t like everyone else’s and that some things are harder on me than on others. When it’s all said and done it leaves me saying, “Yep, I definitely have MS.”

One extreme to the next

Ok, I know I used a lot of cleaning examples in this one, but cleaning is one activity where I feel my MS the most. I wish I were saying this to be funny, but I do get sore from the chores. My MS is tricky. Invisible illness is tricky. It goes from one extreme to the next. One moment you feel like you can conquer the world, and the next you’re too far gone before you even realize it. And then there are the moments the reality of it all makes you screech to a halt. It may seem invisible to others, and even to you on rare occasions, but it’s most definitely always there. To the outside looking in, my MS is invisible, but to me, it’s anything but.

Thanks for reading!

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

View Comments (2)
  • Lielie
    3 weeks ago

    This sounds so familiar. We seem to be cleaning and MS twins.

  • potter
    3 weeks ago

    I also had a hard time slowing down when I felt (normal) but I learned my lesson last year. I had a relapse a couple of days before Christmas, my first one in 10 years. I had been taking care of my elderly mother in-law who had been in and out of the hospital since October. I woke up to the right side of my body being numb, I couldn’t feel my bladder or bowel either. The rest of the family stepped in and started taking care of her. I realized I wasn’t the right person to be taking care of someone who could barely walk when I wasn’t so good at it myself. My mother in-law has been ill again for the last several months. I have only taken her some chili and picked up a few groceries this round. Grocery shopping, vacuuming and mopping really wear me out. My husband who just retired helps me with those chores. I have also learned to live with a dirtier house. Potter

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