Fatigue: 1, Me: 0
For as long as I can remember, I have experienced fatigue in a way that seemed so ...abnormal. I wasn’t just tired after an exceptionally long day or vigorous activity; I was tired minutes after waking up in the morning. Honestly, if it hadn’t been for school or my job, I likely would have stayed in my bed all day. It was a neverending, full-body, all-consuming tiredness. People often would ask how I am and I would respond with, "I'm good, just tired," and I often heard back, "you're always tired." And they weren’t wrong. But it felt so dismissive.
My fatigue felt abnormal
I knew the way I was feeling was not normal, but there were not ways to explain this kind of profound fatigue to anyone and have them understand. I constantly felt judged and was even called lazy, which I knew was not the case. It is like my body was constantly being zapped of every ounce of energy it was making- it just evaporated and left me feeling sluggish, slow, and dissociated. I felt like I had cement blocks on my feet and sometimes without the energy to take another step, I would find a place to sleep any chance I got.
Unable to cope with fatigue
As a nursing student, working full-time, it wasn’t always easy to find time to recharge. I would often go to my car on my break at work and set an alarm for however long I had, even just 20 minutes, and try to close my eyes. After my classes, I would come straight home and make a b-line for my bed, sometimes sleeping hours and missing dinner or study sessions with my classmates. I would pull over and park in the grocery store parking lot to close my eyes for a quick nap when I felt like I couldn’t drive a second longer, even if home was only 10 minutes away. Thankfully, I was still able to earn good grades and a paycheck, but looking back to that time, I truly don’t know how I did it.
Being a mother with lupus
As I write this, I’m sitting here watching my 2 children play and wondering if they’re going to cooperate with nap time today. I desperately need a nap even though I only woke up a few hours ago, but whether I nap or not is fully dependent on my very strong-willed and energetic 3-year-old. I constantly find myself sitting here and watching them play, wondering where all of their energy comes from. Looking back into my childhood I can remember always falling asleep in places while others my age were playing. You could frequently find me curled up on a chair, on the floor under the kitchen table, on top of the hard-wooded toybox, and covered with a dish towel, just snoozing. There isn’t a car ride I remember where I didn’t fall asleep 2 minutes in and wake up at our destination.
Lupus and the war inside of me
Reflecting back on these days I often wonder how long lupus has been creating a little war inside my body. Did it start when I was that young? Did it not happen until I reached my 20s? I am really not sure. All I know is that my life has been impacted, every single day, by this feeling of fatigue that I just can’t seem to overcome. Some days it’s less than others. I can wake up and I feel less pull to go back to bed immediately. I can have a productive day and still find some energy left afterward to spend time with friends. On those days, I feel so "normal." I feel like this is what it must feel like for those without autoimmune disease all the time. Sometimes this makes me feel sad or angry, but most of the time I try to tell myself there is some reason I have been given this struggle. While I don’t know the reason for it yet, I do know that despite it feeling like a big heavy blanket has been thrown over much of my life, I am handling it the best I can.
Finding lupus support
Through interacting with other lupus patients, one of the most common symptoms I see them talk about is fatigue. I remember finding a few support groups online shortly after my diagnosis and I felt some sort of comfort reading about how fatigue has been so awful for them, too. It’s like I had found people who finally understood and this feeling, it wasn’t just me being "lazy."
I came to understand the reason for this feeling was because our bodies fight against themselves constantly and how could I expect my body to not feel unexplainably tired after having to fight itself day in and day out? I am so fortunate that this is currently my worst symptom of the disease. When comparing this to the other symptoms I could be having, I feel guilty in a way.
So many lupus patients have it so much worse, and here I am complaining about feeling tired. This disease is so strange in that it affects everyone it touches differently. Today I’m going to choose to be thankful that this is the worst it has been for me so far and just resign myself to the fact that it will always be Fatigue: 1, Me: 0. I hope anyone else suffering from this symptom of lupus, or any other autoimmune disease knows how incredibly strong and resilient they are.
Have you ever had to change holiday plans because of lupus?