An Inside Look at a Day in My Life With Chronic Pain

I woke up and stretched. My joints clicked and hurt. My body felt achy, and I did not feel well rested enough to warrant the fact that I’d had a full night’s sleep. My skin tore and bled in the shower, and I found three new bruises that I couldn’t remember how I’d gotten.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I used a different moisturizer, because the one I’ve been using for the last year has started causing some kind of allergic reaction and my skin no longer agrees with it. I looked down – my legs were mottled and purple, black, red, any shade other than the shade they should be. They were ice cold and then scalding hot.

I put on my glasses that I wear because of an astigmatism. I ate breakfast. I pulled a knee brace onto a different leg than it usually goes onto, and I cut a new chunk of tube bandage for my wrist. I got to leave my sling in the box of braces I keep beside my bed.

I went to go and do my daily stretches. My knee hyperextended, my wrist clicked, my shoulder popped and my hip made a hollow sound that made my mother flinch.

I went out for the walk I do every day. I manage a long one – several hours if I want to – and I’m glad I can move. I’m glad that daily physiotherapy and a good stubborn attitude have kept me able to do so.

My wrist clicked again. I used my other hand to ease it back into place and stopped when I heard a second pop. I bumped my hand on the countertop. My finger joint relocated a week and a half later by itself.

My back hurt because I have scoliosis, and it’s all swollen on one side. My ear hurt because I have an infection due to a compromised immune system. My joints hurt because I had rolled my ankles, popped my shoulders and done a ton of other things because I have Ehlers-Danlos syndrome. I felt too full because I am still recovering from anorexia. I felt afraid because I know I will have my liver enzymes checked again soon and I don’t yet know what the results will entail. I hurt because my body overreacts to sensory stimuli and turns it all into pain; plus I have reflex sympathetic dystrophy.

Not every day is hard. I like my life. I smile, and I laugh. I make the most of opportunities. I have a mother who has been by my bedside on my hardest days, and who now is my biggest cheerleader as the hardest days aren’t the only thing my life is centered around.

I am chronically ill. That is OK. Sometimes, this is what my day looks like. That is OK, because in between the snaps, crackles and pops I told jokes, I wrote something I was really proud of, my favorite show was on TV and Ed Sheeran released a new song I already knew all of the words to. In between the color changes, I read Harry Potter for what was probably around the 22nd time.

My life is not perfect, or easy, or normal, or predictable. No one’s is. But I am living.

Thinkstock photo via ruddy_ok.