What it feels like to have MS

What follows is my answer to the question above that I found on Quora

The feelings of multiple sclerosis are described by the name of the disease. Just as there are multiple scars there are numerous feelings those create. This moment as I’m sitting here typing this, if I tune into my body I start to feel the numb sensations around the back of my neck, the numbness reaches around. I’m reminded of the imagery of a hand because I can feel it’s fingers and the tingles lightly brush my lips and the skin around my mouth, my cheek. Going further down I notice that thankfully my chest and ribs are calm today. No MS hug, a symptom that often squeezes my ribs and causes pains in the webbing over the muscles of my chest. Scanning down the arms the numbness increases, or rather the feeling decreases, rounding the elbow, sandy feelings in my hands and fingertips as I press the letters on the screen.
Further down- my spasticity in my legs has really improved the last couple of weeks so my leg muscles are relaxed. When they are spastic it feels like I’m flexing my muscles to do a squat, or another kind of exercise. However, I can’t release. The tension remains. Sometimes it causes spasms. Sometimes it’s painful, like a Charlie horse. Sometimes it’s the left thigh, sometimes the right, calves, sometimes it’s all the muscles together. Oh I forgot the numb tingles, the sandy feelings start a little above the knee, and sandier and sandier as I progress to the toes. I know how much it feels like sand because when I go to the ocean and wriggle my toes into the warm sand- all I feel is sand outside my body. I don’t notice the inner sand because the contact against those real grains signal to my body- “this is normal. You really are in sand.”

That’s a picture of right now. But that doesn’t cover eye pain, shaky, blurring vision, slowed gait and the feeling that your body is made of quickening concrete. Your body getting so tired that it says, “you pushed me too far, so I’m going to shut down. I need to go into power save mode and you just lay there on the floor till I reboot.” Maybe there enough energy to crawl to the sofa. Maybe not. The feeling that you are lost in an inner fog. The feeling when you go out with friends and all the sudden the multiple conversations get to be too much and you feel your self and identity retreat, inside the back of your inner cave, looking out at the shadows on the wall that are your friends. The awkwardness to have to be explain this; to say goodbye unexpectedly and have your support person help you get home. Or maybe you sit there for a while, hiding inside yourself, smile and nod. There no conversations, just inaudible noise you can’t make sense of.
Now there is the feelings of my arms fatiguing. I typed too much. My eyes are tired and long to close. Goodnight. I’m going to dream of a body free of these things. Tomorrow I will wake up- to enjoy the life I have, filtered through these many feelings.

2 thoughts on “What it feels like to have MS

Add yours

  1. Strong warrior, your words are like poetry. You have a way to keep beauty in the experience. I found myself thinking me 2 as I read your words. I’m comforted and thankful to have another ‘know’ what it can feel like.

    Liked by 1 person

    1. Thank you so much! Your comment is beautiful to me. It comes to me right when I am in need of this! Thank you! 🥰🧡🙏🏼


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