Sunday, 8:09 AM. My eyes strike open wide. My alarm is set for 9:00 AM, but alarms don’t determine when or how I wake up. My body does, now. Beads of sweat form on my forehead. No, no, no, no. Please, no. My pelvic bones light on fire- burning, screaming. The internal organs between feel as though they are twisting, turning, and being pushed/pulled in every which direction. The muscles surrounding spasm into concrete. I feel punched, stabbed, brutally mutilated from the inside out. It’s okay, comes with inspiration. Everything is okay, flows with expiration. I match my breath to my beliefs, that, to be truthful, I don’t always quite believe. Over and over. It’s okay, everything is okay. It’s okay, everything is okay. It’s okay, everything is okay. I curl my way out of bed, heat my sack of rice with lavender undertones for an unbearable three minutes, and lay lifeless on the couch until the wave passes. High tide lasts anywhere from 15 minutes to 45 minutes. It’s all relative in the world of pain.
Tuesday 10:41 AM. One new voicemail. I listen, I leap. Great news found it’s way. I feel so happy, so excited, slightly nervous. Everyday feelings manifest different in a body at war, though. My excitement turns to internal anguish. Why. Why do you have to do this to me. I’m happy. I’m excited. You don’t need to turn everything to physical pain. The good, the bad, the ugly- you make it all ugly. My mind fights my body. I’m angry now. The pain turns to nausea. I spend the next 40 minutes in fetal position. My body won. Until my mind settles, my body will continue to win. I return the call with no hint of the turmoil that just took place, apologizing for the delay in response.
Friday, 4:46 PM. Exercise is my serenity. My home away from home. Where I can submerge myself into all of myself. 5:00 PM means kickboxing. 5:00 PM is my outlet. I overhear the coach talking to a student. The student talks about a position the coach often makes them hold for long periods of time and how quickly the burn comes on. The coach says something that resonates with me so deeply. “When I’m taking the class, I feel the pain right away. But when I’m coaching, it takes so much longer to feel it. I think it’s because my focus is elsewhere.” When I wake at 1:02 AM that night in the midst of my body throwing spears at my mind and vise versa, I know I have to be the coach. My focus has to shift. I tell my heart rate to slow, my muscles to relax. Pain is the first response your body has to alerting you that something is wrong. I am listening. Please know, I am listening. The pain lessens, and I drift back to sleep. My mind won.
Wednesday, 2:57AM. For a PICU nurse 3:00 AM with two babies means a head start on morning pokes for lab draws and morning assessments before X-ray makes their way. One baby is crying, another one is throwing up. And I can relate to both on the deepest level. My insides twist and turn. But I take care of others, and so there is no time to take care of myself in this moment. An hour passes by, I get the babies to sleep. All is calm. I sneak off to the break room and slip into the restroom. And for a moment, I just sit on the floor. The floor filled undoubtedly with blood and bodily fluids from other nurses and physicians shoes. The germaphobe in me goes away. Everything goes away-everything except the pain. I take three minutes to breathe on the disease ridden floor. I wash my hands, I look myself in the eye. I tell myself it’s cool, everything’s cool. The shift continues.
In nursing school you are taught chronic pain vs. acute pain. Reading the description it always felt as though acute pain was severe and chronic pain was the lesser of the evils. In reality, chronic pain is just an extensive version of acute pain. It presents different in every person, every disease process- but there is no lesser of the evils. There is only one evil.
I try to fill my life with an annoying amount of optimism. I eat fruits and vegetables. I drink water. I exercise 5 times a week. I don’t do drugs, I don’t drink alcohol. I go to work. I sleep. I practice yoga and express gratitude through meditation. I use essential oils and I read good books. I see the doctor and keep up with specialists in 8 different directions. I even give my cats baths and brush their teeth. I do everything “right” according to a healthy living textbook. And yet I feel so defective.
When your body attacks itself, there is no warning. It does not matter what day it is or what time it is. It does not matter if you are sleeping, if you are celebrating, or if you are taking care of babies. IT DOES NOT CARE. It is defeating and it is exhausting. And sometimes, it is very hard to love yourself. I am pro self-health and self-appreciation. When your body fights that memo, though, it is hard to remain resilient. Remaining resilient is not easy. Breathing and believing takes will power, and I am tired for hours after my mind wins. Letting my guard down is not easy. Pain and anger reveal and take over, and I am tired for hours after my body wins.
This is an invisible battle. Nobody wants to feel defective, nobody wants to feel defeated. And certainly, nobody wants to express that they are either to the world around them. And so the days and nights go on. The conversations continue. The laughs peak through the pain. The workouts get worked out. The babies get rocked to sleep and cleaned up. Nothing is wrong, nobody knows. But invisible battles are lonely. You feel alone in your body. Trapped. It is you and your mind and your body. Truly, nobody can take it away. You must fight your own battle. Alone.
I am at war with my body, but the reality is that I am not alone. I am surrounded every day by others that are fighting their invisible battles too. Not only that, but I am in a profoundly intimate relationship with my own being. I am learning mind/body connection. I have learned to love the art of distraction. Sometimes I am strong and sometimes I am weak. But I am never alone. Even if it is only me and my breath until the sun rises, I am never alone. And neither are you.
March is autoimmune awareness month. Lets externalize our invisible battles. Be visible. You are not alone.
Light & love.