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What Waking Up With Chronic Fatigue Syndrome Feels Like

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There is a blissful moment when you wake up of complete peace. You’re not fully awake yet, just barely still under the pull of sleep, and your body feels completely at rest. The bed is at just the right snuggly, warm temperature, your body is in the most natural position, and you feel like you could stay this way forever. For a split second you have anxiety, no pain, no ailments of any kind that are filling your head with constant nagging.

I am free, for this tiny space in time.

Then the pain hits, the exhaustion, the realization that my night of rest really wasn’t rest at all but instead a battle that I fought and lost. I realize that my sheets are damp from the pain sweats, even though my room is the temperature of an ice box. My legs scream to be released from their cramped position and my eyes beg to stay closed for just a few minutes longer. My head pounds from the lack of sleep and my back feels like it’s been locked in the same position for too long.

To start my day I first have to sit up, which takes the most amount of effort. I have to unlock and stretch each cramped muscle and stuck joint, and even that isn’t enough to shake the pain. I fumble for my pill case (which is very loud) with stiff and inflamed fingers, and throw back a handful of my medicines.

Moving slowly, I work my legs out of the covers so I can shuffle over to the fridge for one more pill and some chocolate milk. I inch my way back to bed, shaking hard from not only the cold, but from my exhausted body.

By now I have about 20 minutes until I need to get ready for class. During this time I nibble on some breakfast and scroll through social media. I give myself a little bit of time to actually start functioning. My brain needs to wake up, which really means it needs to go from 100 percent foggy to about 70 to 80 percent foggy, and my medicines need time to get back into my system.

After my little break I have to face the challenge of getting ready. I have my drawers organized so I can sit on the floor and pick out undergarments, leggings, a shirt, a sweater, and shoes, all while not moving. I pick the most efficient outfit possible; actually I tend to grab whatever is on top.

Slowly, I pull myself up and get dressed. I remind myself not to sit down again because I’m pretty sure I won’t get back up. I take a look in the mirror. Do I need makeup today? That’s hilarious, nope. How long has it been since I washed my hair? Two days? A little dry shampoo and a braid will fix that in a heartbeat.

By now I’m moving at a semi-normal pace. I’ve had time to take medicine and eat, I’m ready for class, and I’m probably running late. I am always running late.

I throw on my backpack and move “quickly” down the front staircase of my sorority house. By quickly I mean I drag my feet and pray to God no one sees me gripping the railing for dear life. I stop by the kitchen to fill up my water bottle, and attempt to hustle out the front doors.

This is a good morning for me. Bad days include not being able to walk around my room at Delta Gamma, special shots in my leg for pain, and a pretty mismatched outfit. My worst days I can’t get out of bed at all. These are the days when I cry in pain and email my professor letting them know I won’t be at lecture. Even on my worst days I still try to make it to at least one class, even if it takes me two hours to get ready to be there.

Getting up with ME is basically an Olympic sport, and if I make it to class I consider that a gold medal. It’s like waking up at the very end of having a virus where you’re still sick but not enough to stay home, so you have to deal with the bodily hangover of your immune system. So if you happen to see me with mismatched socks and no makeup on, please just give me a high five for getting out of bed that day.

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Originally published: November 10, 2016
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