A Day in the Life of a Lupus Warrior: Comedy at Its Best

The alarm clock screams. I hit snooze, because, well, lupus. Five minutes later, it screams again. This is a daily gamble. Will today be a "leap out of bed, ready to conquer" day, or a "burrow under the covers and pretend I'm a burrito" day?  Unfortunately, the lupus gods are feeling spicy today. Burrito it is.

Ah, the morning! That magical time when the sun peeks over the horizon and the birds serenade us with their sweet melodies. Not that I hear any of that. Instead, I wake up to the orchestra of sounds of my joints creaking like an old, haunted house. Welcome to life with lupus!

First things first

First things first: negotiating with myself to get out of bed. I go into a whole conversation with myself like the grinch. After an internal pep talk that mostly involves bribery with coffee, I tackle the battle with my bedsheets. I drag myself to the bathroom. My body feels like jelly, and my joints are hosting a pain party that I'm clearly the main attraction. I muster the strength to bend at the knees to sit on the toilet. Arrrrghhh, this feels like I’ll have to conquer Mount Everest to get up.

I finally find my way to the bathroom sink to brush my teeth and wash my face. The toothbrush feels like the heaviest thing as I wrap my claw like joints on fire fingers around it. Every brush and the vibration of the electric toothbrush sets a tingle through my body. I warm up the water and use the warmth to engulf my hands and then refresh my face. Look at that, it’s 6:00 a.m. But for my body, it might as well be 2:00 a.m.

Breakfast of champions

Whew, I’m finally out of bed. However, the weight of my legs are like I’m walking with sandbags. I have to jump up and down to release the stress in them before taking the long walk down my steps. *thump thump* I cautiously walk downstairs and get to the kitchen to start the day.

Next up, it’s time for breakfast. Not just any breakfast, though. I’m ready for my buffet of pills that could be considered a pharmacy. There’s some for inflammation, others to protect my stomach from the medication. And then a few more to stabilize glucose levels and blood pressure. Also let’s not forget the ones just for good measure. I throw them back and then swallow with a glass of water like a beer chugging champ.

I let out a huge sigh and think… “this can’t be my life.”

Following the sigh, I look to make something to eat. Wondering about breakfast is a tightrope walk between food that "keeps me going" and food that "doesn't trigger a flare-up." Basically, toast with the exciting option of maybe some nut butter and banana (if I'm feeling adventurous).

Morning routine

Well breakfast is out of the way. I was able to eat it all with minimal nausea. Yay me! Time to shower and get dressed. Ouch the water feels like it is beating me up. However, the parts that it is soothing mean so much. I hop out the shower. Wait honestly, I kind of slowly crawl out the shower. To the closet, So many leggings and t-shirts to choose from.

Mid-morning hustle, productivity (sort of)

By mid-morning, I’m ready to face the day. Or at least pretend to be. I sit down at my desk, determined to be productive. Start my computer, and it’s a race against time before the fatigue sets in. I answer a few emails, browse social media, and maybe even do some work. But before long, I feel like I’ve been hit by a bus.

Lunchtime and the afternoon slump

Lunch rolls around, and I’m already contemplating a nap. Lunch is a gamble. Salad for the health-conscious warrior, or pizza for the "screw it, I deserve a treat" warrior? The struggle is real! Unfortunately, as soon as I eat, *POW* lupus fatigue hits me like a ton of bricks. Time to rest.

I curl up on the couch with my doggie for a “quick nap.” That nap turns into a two-hour sleep fest. I wake up groggy and disoriented. But at least my pain levels are a little more manageable. Time to get up, stretch, and try to tackle some more work. Feeling a little energized, I even try a little 5-minute march in place to get my blood flowing. The exercise feels good. It’s a slow process, but every little bit counts.

The afternoon dip

3:00 p.m. The infamous lupus afternoon dip. Energy levels plummet faster than a rogue sock in the dryer. “Listen to your body, warrior,” I mumble. Take another break, take some deep breaths. Maybe just stare at a cat video for 20 minutes. Recharging is key. I talk to myself often as I battle issues.

The final countdown

*Cue the song Final Countdown*

As evening approaches, I start to wind down. I make dinner, which is another exercise in simplicity. Cooking anything too complicated is out of the question. I settle for something easy, nutritious, and most importantly, doesn’t require me to do more than my body can handle.

After dinner, it’s time to relax. I watch some TV, read a book, or maybe do some light stretching. The pain is still there, but I’ve learned to live with it. Scratch that, I have learned to manage it. I know laughter is the best medicine. So, I find a funny show to watch and laugh until it hurts (in a good way).

Bedtime, the grand finale

Finally, it’s bedtime. I take my nighttime meds and crawl under the covers, ready to do it all over again tomorrow. Finally, I try to quiet my mind with some deep breaths. During my breathing, I remind myself that I’m a warrior. And on this day, I’m able to drift off to sleep quickly. Lupus may be tough, but I’m tougher.

So there you have it, a not-so-glamorous, but hopefully humorous, look at a day in the life of a lupus warrior.  It's a daily battle, but hey, we fight with humor, heart, and the support of fellow warriors and allies.  Because at the end of the day, even a tired warrior can make a difference. Because that’s what warriors do.