Just One of Those MS Days
Last updated: August 2022
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.
A bad MS day: 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.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: