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A Day in My Life With Myalgic Encephalomyelitis

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My alarm goes off but I make no movements.

My head feels like it’s weighed down by cement bricks and my body feels like I’ve had the flu for three years. In essence, that’s exactly what it is.

I manage to drag myself from bed and I can feel every pound that makes up my body’s weight as I try to push myself to my feet. Will this be the day my spine crumples like an accordion? My joints crack and pop as I make my way over to my sink to wash my face, debating whether or not a shower will be worth the heat intolerance and presyncope first thing in the morning.

Wait, it isn’t even morning anymore? After a night of tossing and turning, unable to get comfortable or stay asleep longer than two hours, I laid in bed awake for hours after my alarm went off, willing myself to either go back to sleep or get up.

I splash water on my face, and quickly brush my teeth, probably not very efficiently, rushing so I can get off my feet. I sat down on my couch, my watch telling me that my heart rate had hit 120. I need to lay down and prop my feet up but the dog needs to go outside and I need to feed the pets and also myself.

Do I have anything quick to eat?

The dog whines, stomping his feet as he looks up at me from his place on the carpet in front of the couch. Sighing, I take a few deep breaths and count to three in my head before forcing myself to stand again and trying to navigate vertigo as I grab his leash and my cane to take him outside. The sun is high in the sky and there’s little shade or clouds to give me cover from the rays.

My watch buzzes again: heart rate 130.

The world goes dark for a split second and thankfully the dog is done using the bathroom. I rush back inside, out of breath, my lungs aching. I sit at the dining room table, resting my head on the cool wooden table top, my dog laying down next to me, his harness and leash still on, but he doesn’t seem to mind.

I don’t have the energy to stand long enough to prepare breakfast for myself. I manage to pour out food for the animals before grabbing a breakfast shake out of the fridge and dragging myself to my couch. Every step feels heavy. This is as far as these legs will take me for now.

It feels like my entire life force has been stolen from me. I’m a shell of a person nestled on the couch trying to hide from the sunlight peeking through the curtains as light sensitivity sets in.

This is where I lay for several hours until the sun has nearly set and I manage to drag myself to my feet to finally throw something together to eat.

Getty image by westend61

Originally published: August 15, 2022
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