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Wednesday, August 12, 2015

Life With Chronic Illness and Other Wanderings of the Mind

Living every day with pain changes how you view the world.

After so many years of being thwarted by your own body you stop seeing the body as You. There is ME, the brain, and The Body which is the thing that gets ME around, but also the thing that stop ME from doing fun things like climb mountains or sleep through the night without pain. One of my friends refers to her body as THE MEATCAGE. It's an accurate description.

When you have a chronic illness you are trapped inside a corpse. True, it is an animated corpse that sometimes can do things, but with a chronic degenerative condition you know the body is rotting around you. Things will never get better. You will never recover. You will never be cured.

Someone once compared chronic illness and chronic pain to cancer. They were wrong. You can escape cancer. Your body can be healthy and whole again. With a chronic illness that isn't an option.

At 19 I started feeling the first painful affects of Ehlers-Danlos Syndrome. The loose ligaments and hyperflexible joints had been a bonus in my younger years, but at nineteen my spine jostled loose for the first time and pinched a nerve. It feels like what I imagine a knife in the back feels like. I couldn't breath properly. I could barely move. At 19, a sophomore in college, I was having all the symptoms of a heart attack including pain in my arm and chest.

The first episode didn't last long and I dismissed it. At 22 I had an episode that lasted three days and I finally went to the doctor. Prescription strength anti-inflammatories took the edge off, but didn't stop the pain. I was diagnosed with early onset arthritis while I was there. All I could think of was how lucky I was it wasn't in my hands yet.

My twenties were filled with slow healing injuries, occasional flare ups, but mostly good days. I was one of the lucky ones. I didn't need tape to hold my shoulders in joint, just regular exercise and good muscle tone. I didn't need finger braces or a cane. I wasn't hospitalized. I was almost normal, but I lived with the growing dread of the future.

At 22, with a diagnosis of early onset arthritis and EDS, I knew I was at my peak. This was as healthy as I was ever going to be. Every day from thereon out I would lose something more. The repeated dislocations would lead to scarring. The pain was only going to become more frequent and more intense.

I'm 33 on Sunday. I'm still one of the lucky ones. I have worn a brace on my ankle since last October because of an injury. There are days I struggle to walk and cry as I drive because the pain in my leg is so bad. I've had to readjust my personal pain scale. Now a #2 on the pain scale is natural childbirth, a #5 is an untreated cluster migraine, and #8 is my hip when it slips out of joint aggravating the swollen bursa next to the bone. It's excruciating.

My knuckles started swelling a year ago with the first signs of arthritis. I can handle it. But in a decade or two I'll have to find either a cure for arthritis or a reliable speech-to-text program if I want to continue writing.

The fact is, I have the body of a 90-year-old woman, or at least the joints of one.

It's funny sometimes. I joke about a cyborg body. Sometimes I price out how much a new hip would cost, one that would stay in place. Or I wonder how it would feel to roll over at night and not dislocate my shoulder. Making the dental hygienist scream because my jaw dislocated as she cleaned my teeth was hilarious... at least for me. It's been popping out since I was 12. She was less amused by my snake impression.

And still there are the bad days.

The crippling pain hits without warning.

I breath wrong and my spine twists out of alignment. Tears of pain well up as I struggle to breath. My muscles tighten in response to the pain and I can feel my shoulders and jaw squeezing in unnatural ways.

There's no way to feel like it isn't my body attacking ME. I feel surrounded by the enemy, and the enemy is the body every inspirational post on Tumblr urges me to love.

So I dive into a book, or a movie, and I remind myself I am one of the lucky ones. I could be so much worse. I may never be able to run and play like the heroes in my books. I might never drive without pain again, or climb another mountain, but in a book I can have that freedom for just a little bit. And sometimes that's all the escape I need. A chance to run away from The Meatcage and be healthy. To feel like tomorrow won't be a burden. To imagine a life where the future isn't so dim. To hope that tomorrow there will be a cure, not just for me but for all of us who are struggling day to day to survive these chronic diseases.

That's what I'm doing tonight, going to read, and hope a heating pad will ease some of the pain, because today is one of the bad days.


  1. I cannot imagine what this would be like, or how much courage each day would require. You have my prayers, friend.