I woke up Saturday around noon feeling like I’d been hit by a truck. Most of us sickies know the feeling: sore muscles even if you didn’t work out, fatigue pushing you back into the mattress, dull pain slicing through the fogginess in your head.
Oh. It’s one of those days.
Luckily, Saturday is my day off, reserved for relaxing, taking the babies to the dog park, and cooking and cleaning I didn’t get to during the week. No swiping eyeshadow onto droopy eyes, stuffing my purse with cans of espresso, and dragging myself to work when I can barely walk straight.
During my first two years with lupus, every day brought some new symptom ranging from the merely annoying to the outright terrifying. I never knew if I would throw up my oatmeal or make it to school with something in my stomach. Would the brain fog and confusion result in me losing my keys five times in one hour or getting lost on the mile drive to school? Fatigue and nausea lingered like obnoxious houseguests for the first two years, returning to visit for days or weeks ever since. I remember waking up one morning with with arms so weak I couldn’t hold them over my head, then staring blankly at the coffee machine because I couldn’t lift a cup of water to fill it. I would stumble into class with hair that looked like a nest for small woodland creatures because I couldn’t lift my hairbrush.
As I adapted to having an illness and started to listen to my body, the number of crises dwindled to once or twice a week. I learned to increase or decrease my dose of steroids without having to call my doctor every five minutes. Light weight lifting with a trainer strengthened my arm muscles so that intermittent attacks of muscle weakness barely affected me. Allowing my body to rest, even if it meant I spent half the day sleeping, broke the fatigue’s hold over me.
But even with all the precautions, medication adjustments, and resting, crises still happen. Even during the best of times, I still wake up exhausted some days and don’t know why. I still feel dizzy or am sensitive to lights and sounds for no reason. Even when life seems sunny, fatigue still lingers like a shadow.
I spent years hoping for the day when living with lupus would no longer be a struggle. Several months ago, I was driving home from work on one of those perfect days when the sun shines but doesn’t burn and the spring breeze carries the faintest echo of winter chill. My thoughts danced from one subject to another, free of the cloud of exhaustion. After a period of severe illness when nothing seems to go right, you celebrate the days when you feel well, the sun warms your shoulders like a cozy sweater, and your hair has finally decided not to stick up like a haystack.
I wondered if tomorrow would be as idyllic as today- then suddenly realized I couldn’t possibly predict that. Like the weather, lupus conditions are temperamental and always changing.
Over time, I’ve learned not to be fazed by extreme weather conditions. As a kid growing up in Houston, I didn’t have a choice. Tornado warning? Sure, I’ll wait twenty minutes before walking the dog. 40 degrees today and in the high 80’s tomorrow? Like they say: If you don’t like the weather in Texas, wait around a day or two. And who can forget our biannual week off from school/mandatory evacuation courtesy of hurricane season?
What if I thought of my disease the way I think of the weather? There will always be floods, tornadoes, mosquitos, droughts, and heatwaves hot enough to fry an egg on the sidewalk. To expect cool breezes and sunshine every day isn’t realistic. The best I can do is take the good with the bad.
Appreciate the perfect Fall day while it’s here. Rest inside with a good book during the storms.