When My Brain Takes a Break 'Normalizing' My Chronic Pain


Every day, I push. Every day, I fight. Every day, I stand strong. Every day, I am brave. Every day, I refuse to give up.

Imagine you wake up and you have complex regional pain syndrome. Your pain is normal. Get dressed. Eat breakfast. Take the dog out. Brush teeth. Work out with the dog. Get online. Help others feel less alone. Help others train their dogs. Work with your own dog. Play with your dog. Eat lunch. Move. Push through the searing pain. Claw through the brain fog. Fold laundry. Wash dishes. Exercise the dog again. Play with the dog again. Make dinner. Be the best damn fiancé you can possibly be. Shower. Take meds. Push through fatigue, pain, and alluring effects of medication to once more stand up, change into pajamas, brush teeth, and get into bed. Beg for sleep to come.

This is my life. Every day, I wake up and I push through ridiculous pain levels in order to find a way to live my life. My normal is existing at an eight out of 10 on the universal pain scale. Every day, I accept my fate, accept my disabled identity, and accept the changes that surround me. Everything but the pain, I love. I love my beautiful service dog. I love my supportive fiancé. I love my friends, I love helping others with this condition, and I love my life.

Every few months, I reach my breaking point. I can go along just fine for several months, and then one day I wake up and the fight is just…Gone. It’s not the same as depression. It’d be easier to call it that, because depression is common in people with chronic pain. It’s expected. I am not depressed, though. This is different.

Imagine that it’s Friday. You’ve had the worst possible week at work. Nothing went right. Your boss yelled at you. Your co-workers annoyed you. Clients seemed impossible. It’s Friday night and all you want to do is fall apart. You want to order a pizza, have some wine, and shut out the world. You want to spend the whole weekend in bed or on the couch, watching happy movies, because they are the only thing that makes any sense to you. Watching your favorite movies will let you escape from your crappy week, and by Monday, you’ll groan, but you’ll be ready to take on the world again. You can shrug off the past failures, hold your head up high, and you know it’s gonna be OK.

My dark days are like your Fridays after a terrible week at work. My life with chronic pain is like your crappy week. Every day, my pain screams at me to listen to it. Every day, my muscle spasms and tremors tease me with leg and arm weakness, taunting me until I fall or can’t hold a spoon. Every day, my body begs me to give up, to rest, to lay down and take the beatings from my condition. And every day, every single day, my brain roars the loudest of them all. It roars at me to hold onto to who I am. It roars at me to fight back. It roars at me to work towards my goals and my dreams, because it wants so desperately to believe that anything can still be possible. It roars about how it remembers everything that I used to be able to do and everything I used to be. It roars at me to not give into the pain. It roars at me to accept the pain as “normal,” and to go about life as if nothing was wrong.

It’s not surprising then that every few months, my brain needs a few days off from all that roaring. Dark days, bad days, just-can’t-give-a-damn days…It doesn’t matter what I call them. On those days, I wake up and the fight isn’t there. My brain takes a vacation from telling me that the pain is normal. I need those days. I deserve them, after all the hard work that I do every other single day.

You can take the weekend to drink some wine and scream into a pillow. There are no weekends for me. My job of living with the severest form of chronic pain is a full-time, 24/7, no-days-off-ever kind of job. It’s not surprising then that every few months, I collapse. I fall apart for a few days. I stay in bed, watch happy movies, shut out the world, and let the tears fall down my face.

I cry because I am 25 and disabled. I cry because there is no cure, and because I will be in pain for the rest of my life. I cry because I can’t be the person I want to be. I can do my best, but I worry still that my best isn’t enough sometimes. I cry because I have people in my life who doubt my pain, the validity of my need for my service dog, and who never ask what my pain level is on any given day. On my dark days, nothing anyone can say will make it better. I don’t reach out to people when I have a dark day. I don’t reach out because I don’t want to be told to keep fighting, that this feeling will pass, that I need to be more positive or more grateful. All I need is silence, my dog nestled against my legs, and if anything, for someone to tell me that’s OK to fall apart.

I can’t handle much on these days. I can’t laugh off insensitive comments. I can’t wear my mask. I can’t take the time to try and explain this terrible feeling of defeat to you and be prepared to fend off judgmental or ignorant queries of depression or worse, “Yeah, I get sad sometimes too.”

Let me be. Let me be sad for a few days. Let me fall apart. I know it will be OK again. I know the fight is still there. I push myself every day. I push myself to my very limits and beyond, every single day. It’s OK to let my brain rest. It’s OK for me to have a rare few days where I let myself say, “Actually, no. Pain isn’t normal. This is bull.” The dark days enable me to fight long, furiously, and with the passion that drives me to achieve goals, love those around me, and love life. I will be OK.

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