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The Ways a Familial Mediterranean Fever Attack Affects Your Day

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The ache in my hands and legs kept me awake most of the night. When my first alarm starts playing Adele’s, “Hello,” I already know the type of day I’m facing. I silence the alarm and put a pillow in front of my face to block the glare from the smart light that turned on with the alarm.

An hour later, One Republic begins their strings rendition of “Wanted.” I do the math in my head, deciding which to-do items require my attention before work. If I skip the shower, I can lie under the warm comforter for another 30 minutes. If I skip breakfast, I can add another 10 minutes to my blanket burrito.

I imagine the pain will subside in that time, but it never does.

There’s a chill inside my body, a cold that’s impossible to warm. I feel the fever without touching a thermometer. When you have a fever nine days out of 10, verifying it with an instrument is pointless. The numbers on the display don’t change what has to be done.

I put on sweats and a hoodie, pulling the fuzzy hood up over my head. My vision is like looking through a steam-covered window. Grabbing my glasses from the nearby bookshelf doesn’t help. The blur will subside over the next hour.

In a meandering mess, I trudge off to the bathroom. The reflection in the mirror is worthy of a Stephen King novel. Skipping a shower is no longer an option. Mentally, I run down my list again, finding another item to forego.

It’s day one of the fever. Most attacks and their accompanying fevers last 48-72 hours, so the cold inside me isn’t going away today.

I decide to forgo ironing a shirt. I pick a light pullover sweater and make a mental note that I will have to keep it on all day. The blue cabled pattern will conceal the fact that my dress shirt looks like it spent six months in the bottom of my gym bag.

Familial Mediterranean fever causes widespread inflammation. As the inflammation increases, it crushes vital organs. The pain in my abdomen is incessant, but during an attack, it feels like someone wrapped dozens of belts around my midsection and is methodically pulling each one tighter with every breath. I breathe in with all my strength, but my damaged lungs can only take so much.

The hot water in the shower comforts the thousands of goosebumps that came to attention as I removed my sweats. I revel for a moment in the first positive sensation since I crawled out from under the covers. The heat makes me stop shivering, but the chill inside remains, a stubborn tyrant sheltering deep within my bones.

I know the water is too hot and likely damaging the natural oils in my skin, but the temporary relief is worth the devastation. I make another mental note to put on lotion later.

After the shower, I steady myself with one hand on the counter while I dry off. My head spins like I just stepped off a merry-go-round. The counter keeps me upright.

When I’m dried off, the next battle begins. Every inch of my skin is tender like a freshly skinned knee and begs me to skip wearing clothes. If only naked bookkeeping were a thing.

My eyes survey the closet rack, searching for a companion that will cause the least discomfort. I pick a shirt two sizes too big and the khakis with the stretchiest comfort band. I threw out any hopes of being a fashion plate years ago when I lost the ability to sleep through the night.

Even choosing underwear is a matter of some consideration. FMF can cause inflammation to develop in your scrotum. I know, TMI, but if you weren’t aware, you need to know this can happen. The first time it occurred, it terrified me and sent me down dizzying paths of WebMD exploring everything from hernias to testicular cancer. The skin in that area becomes so sensitive that anything touching it is painful.

I toy with the idea of going commando, but I know that will make me even more uncomfortable. At the back of the drawer, I find a stretched-out pair of black boxer briefs. I know I’ll be pulling them up all day, but they won’t add any pressure to my problem area.

It’s a similar battle with socks. I push aside the Gold-Toe dress socks to search for another pair of diabetic socks. Surely I’ve not worn them all since the last laundry day. They’re not stylish, but they won’t cause as much pain as normal socks.

Only five minutes later than I should be, I finally make it out the door.

Sitting at my maroon desk in my office, I scan the piles of paper to pick a project to focus on. My mind is a hazy gray, and the mountains of white and manilla in front of me are greater than my climbing skills. The lack of sleep and pulsating body pain make my brain chowder soup. Like a toddler struggling to put blocks into a box, I concentrate on which column to put my numbers in. The morning hours click away as my body acclimates to the internal pain.

My office is a mile from my house, so I get to go home for lunch. The lunch break is too short, but gives me at least 15 minutes to slip off my shoes and collapse on the bed. I fantasize about telling my boss I’m not coming back — not today, not ever. Then I remember that cardboard and concrete are less comfortable than my bed and push myself upright again.

Most days, I skip eating lunch for two reasons. One, FMF inflammation buildup in my abdomen during an attack makes my gastroparesis worse. Digesting much solid food is nearly impossible. Two, eating steals valuable time I could spend sprawled across my pinch-pleat comforter. There are always bags of pretzel sticks in my desk drawer if I get peckish later in the day.

The afternoon shift consumes all of my remaining energy. My productivity level is lower than I’d like, but I finish everything with a deadline for that day. At 5:00 p.m., I rush back home to the sweet relief of horizontal living.

As I close my front door and flip on the hall light, my mind is already dreaming of the warm cuddle of my memory foam mattress. By this point, hunger is competing against exhaustion. My stomach has patiently waited through most of the day, satisfied with a bottle of coke, a piece of string cheese, a small bag of pretzels, and a handful of butter M&Ms. It’s tempting to ignore it and sink into my waiting haven, but that menu is far from a healthy diet.

I force myself to eat, but then eat too much because my exhausted brain can’t process portion control. My hand moves food to my mouth out of habit, oblivious to any indications of a full stomach.

My plans after dinner should involve 30 minutes on the elliptical and some writing time, but my legs say there’s no walking other than going from the kitchen to the bedroom. Instead, I grab my tablet and head to bed.

Outside, the horizon still reflects the red glow of the sun’s last light as I pick an episode of “Star Trek: The Next Generation” to watch. Nights like these, I pick something I’ve seen before. I know I won’t be awake for the whole thing, anyway.

Not long later, after Picard says, “Engage,” I’m asleep, or at least in a close facsimile. At 8:30 p.m., Google Assistant turns out the lights. The change in lighting stirs me to semiconsciousness, but I quickly drift back to oblivion.

Tomorrow, I will climb this mountain again.

Until next time, keep fighting.

This story originally appeared on Medium.

Getty image by EMS Forster Productions.

Originally published: February 23, 2022
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