This was originally posted on the blog “Steepings” on December 27, 2017. I was three months post-op from my adrenalectomy surgery to remove the tumor causing Cushing’s Syndrome. I had recently been diagnosed with mono as well (Epstein-Barr virus.) Living with chronic illness was challenging and often disheartening. I am currently writing all of this in a memoir about Cushing’s.
The Crap Theory
There have been many attempts to describe to “regular folk” the challenges of living with chronic illness.
The Spoon Theory is a good one. The Matchstick Theory is a little more apt to my circumstances. But I’ll attempt my own called, the Crap Theory. This is less about choices of energy and just…about what it’s like to always feel like crap.
You wake up feeling like crap. You slept crappy. There have been days when you don’t get out of bed, but over the years you realize it doesn’t make you feel less crappy physically, and mentally it makes it worse, so you get up. It’s slow.
You move your body. It hurts. It’s frustrating. But you do it anyway because overtime the crappiness will increase if you don’t.
You meditate. You still feel like crap, but you’re ok with it. Mostly. Not really. But you want to be ok with it. You also want to be a superhero.
It’s time to get ready for the day and interact with people who love you. You want to tell them all the ways you feel like crap, but they already know this. They know it so very well, that you decide to spare them the details and talk about other things instead: the upcoming cold snap, car coordination, we need more eggs, and you reluctantly watch a “really short!” video with your kid. You laugh. For a moment you forget about feeling crappy. Or maybe the caffeine is kicking in.
When your body tells you it’s time for rest because you feel like crap, but seriously, you just got up, so you push yourself. You have realized over the years that mentally it’s better for you to do things even if you feel like crap. So you do things. It’s slow.
You rest. There are no questions about this. There are no other options.
Eventually, you get yourself moving again with whatever works. You may feel like crap, but you make a damn good cup of tea.
The Day Continues.
You interact with people. Feeling like crap lowers patience and consistency. The energy to deal with pain leaves little energy for others. Over the years people distanced themselves from you. You understand, but it still hurts. Then a friend sends you a Loki gif and the crappiness is alleviated by his glorious purpose. Some people have had crappy times and understand. Others are just compassionate blobs of love. You are grateful.
Today you can eat. Sometimes the crappiness keeps you from this, but not today. This makes it a good day.
Today music sounds right (sometimes it doesn’t), and it doesn’t hurt your head (sometimes it does) so you play some while cooking. You move a little. To anyone else, this is not dancing, but in your mind, you are a dancing queen.
Time to rest. You are annoyed. Did I mention you feel like crap? You look at your to-do list and cross out things, not because you got them done but because they never will. Someone else cleans up after you as you watch guiltily from the couch.
Fiction is a good distraction. Depending on how crappy you feel, the format changes. Today, it’s a book. Seriously, the girl should pick the 600-year-old ghoul over the wishy-washy werewolf. You come back to yourself and the remembrance of your body and crappiness tangles up your thoughts and emotions until you can’t remember anything else but despair.
The Crap Never Ends.
No matter how much younger others are around, you are the first to get ready for bed. You stand by the bed and stare at your pillow and the litany of exactly how crappy you feel and how this may be FOREVER starts to unravel your soul. But there is a spark inside of you that crap can’t touch. It never has and it never will. The remembrance of that spark knits you back together again. That meditation breathing comes in handy.
Getting into bed, you tell God you feel like crap because if you have to live with it every day, then He can hear about it every day too. He tightens the strings on your soul. You pray for other people and feel perspective. The person you love comes in and kisses you goodnight. You cry a little. You remember the good parts of the day, close your eyes, and hope for the best.
You open them again remembering something important you forgot. Again. Crap.
Rise Untethered. Move with Intention. Be grand.