I am an #EverydayWarrior.
Every day I wake up and face a battle. Not because I am courageous or brave. No, I face a battle every day because I have to.
My name is Caylee Shea and I have debilitating, chronic illness.
After receiving the Gardasil Vaccine when I was 19 years old, my life changed overnight… literally. I woke up one morning to a nightmare. While I can only recall flashes of that day and the following months, those brief moments are still so vivid in my mind… I awoke to a beautiful, sunny day. My eyes fluttered open and I could feel the sun peering through the window and warming my skin- yet, I could feel something was wrong. I began to sit up, but my body did not move. I tried to call out, but only garbled, alien sounds escaped my lips. I was imprisoned in my own body. My memory from that point is only flashes of random events throughout the following weeks- Me sitting in the bathroom and not being able to understand how to use a toothbrush. Me feeling excruciating pain course throughout my body and an extreme pressure in my skull. Me attempting to communicate but the message never coming out. Me hearing doctors tell my parents that I was making this all up. It seemed the only one of my five senses that would work anymore was my hearing. So I was able to listen to my world crumble around me.
I recall one night, when my symptoms seemed to cease ever so slightly… I am lying in bed and I stare at the dried fruit and chips next to me. I have eaten this snack food for days now! I can’t recall the last the time I had a real meal. The days and weeks just blend into the next when you are stuck in bed for so long. In and out of consciousness, I realize I have counted every tile and studied every inch of this bedroom from my bed. There is only so many times I can watch the shadow of the leaves dance across my wall. That is it! No matter what the consequences I am using this rare moment of my body slightly working and I am getting myself a real meal!
I began to work my crippled body out of the tangled sheets. With one big heave I was on my feet and leaning over my walker. Success! Time to show myself what I can do. I began my bambi-hobble to the kitchen. I thought fondly of nickname my sister gave my new gait- I did look like a newborn deer, teetering and wobbling just stand. The nerve connection to my muscles appeared to be shorting out. As I pressed on toward the kitchen, my muscles jumped, spasm and collapsed. Over and over my muscles did their dance as I fought to stay on top of my walker. I finally reach the kitchen and collapse onto the first chair I reach. I am sweating and panting. I can’t believe this! I recall a girl who was on the Dean’s list, riding mustangs and playing volleyball. Nothing used to wear me out. And here I find myself about to black out from a 15 foot walk. But I refuse to give up now. So after resting for 20 minutes I am ready to push forward… Two hours pass by as I am attempting to put together a meal of rice and fish. I keep collapsing on my chair and taking breaks. The fish looks awful and the rice is burnt, but I am so proud of this meal I made. I balance on my chair looking at my dinner and then back towards my room… I know my body is near full collapse, so I must get to my bed before it does. I have ended up stuck and sleeping on the floor of my bathroom and hallway too many times. Not tonight. I want one normal meal and I want to sleep in my bed after. I want to feel normal for at least one day.
I scoop up my plate and cradle it to my chest. My hands do not provide much help as they are now just claws. I can’t use my walker, as I need my whole arms to do everything they can to just hold this plate. Rice is sticking to my shirt from the plate becomes more mashed against me even more as my body lurches and teeters toward the bedroom. My legs are near useless now! My nerves are hardly sending any message at all. I could really give all of those zombie actors a real lesson right now- I am using the few active muscles left in my body to fling myself forward. One more heave and I am in the bedroom. I have made it to my bed! Oh I am ecstatic and so proud of myself. I begin to set the plate down when my nerves jolt a message throughout my upper body. I spasm uncontrollably and my plate is flung to the floor… I just stare at the massacre of my dinner. I pause and feel bewildered. And without out any warning to my conscious brain- I scream. I SCREAM! My body has had enough and I collapse on the floor, squishing the dinner into the floor and all over my legs. I scream at the food for falling off my plate, I scream at my illness, at somebody not making me food, at my body for not being better. After two hours in the kitchen, endless pain and so much pent-up frustration, I scream and cry until no more tears will come.
I have now been diagnosed with Systemic Lupus, Multiple Sclerosis, Lyme disease, Sjogren ’s syndrome, etc, etc. The list is endless! I have fought my way through being completely paralyzed, being unable to communicate, amnesia and even peeing myself! The only thing that is longer than my list of diagnoses, is my list of symptoms. I spend more days than not stuck in bed. And I use a walker, wheelchair and seat-cane nearly every single day. I wake up each morning not knowing which symptoms my day will hold. Will I have paralysis in my arms or legs today? Will I have bouts of pain? Will I be so fatigued that my body will shut down? Will I have a bout of cataplexy that will leave me entrapped in my head? Waking up into my nightmare has taken away my freedom, causes me pain and I have lost loved ones and friends.
The strange thing is… I am now happier then I have ever been. I find myself incredibly thankful to my illness for teaching me to appreciate the little things, for showing me that I am strong and I appreciate my illness for making me who I am today.
The truth is- We do have a choice. We can either; lay down and let our illness consume us or we can fight each day and make the best of our lives. Every day I wake up to “I can do this!” Though each day that may mean something different… Somedays, it means I can show the world just how awesome I am and I won’t let this illness stop me from living! And somedays it means I can be strong enough to let myself rest and focus on fighting my illness.
Living with Chronic Illness is not easy. Even more challenging is living with a Hidden Illness, where you are not only fighting for your health but you also face the ignorance of society each day. No matter our struggles, big or small, they are our struggles. And we should not have to feel embarrassed or feel any less of a person for them. Slowly, but surely, I will raise awareness for chronic illness. No matter what, be proud of who you are and don’t be ashamed.
Caylee Shea faces Chronic Illness on a daily basis due to adverse reactions from the Gardasil Vaccine. She now has been diagnosed with Multiple Sclerosis, Systemic Lupus, Sjogrens Syndrome and many other diagnoses. With her company Chronic Insight, she makes the daily trials of Chronic Illness more accessible through entertaining videos and posts to encourage more understanding. Her vision is to reach equality, understanding and kindness for everyone- no matter our differences or obstacles in life.
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