How I Cope on High Pain Days

You can tell when it's going to be one of those days. It's one of those days where your pain levels if they are normally at a 3 or 4, jump up to an 8 or 9. For me, it always starts with a night of tossing and turning. Sometimes, due to my PTSD, I have horrifying nightmares combined with night sweats. I'll wake up feeling worse than when I went to bed. Today, I woke up with a flare-up of costochondritis. For those who have never experienced this, it basically feels like there is a tight corset binding around your ribs making it difficult to breathe and causing your chest to burn. I stepped into my car and the April sun burned and stung my eyes as I left my house. As the day wore on I began to feel a burning and heat in my knees. When morning became afternoon, a migraine started to set in. I managed to get some work done and load the dishwasher, but by 2pm I'm in my recliner and I know I'm not getting up until I go to bed.

I thought back to my most recent doctor's appointment. I had an appointment with my PCP for Osteopathic Manipulative Treatment (OMT). He walked in and immediately asked, "What hurts today?" The day of my appointment I was having a "normal" pain day, so I told him only my knees and neck bothered me. He let out a chuckle, shook his head, and said, "That is soooo EDS." I must have looked confused because he continued to explain, "I don't mean to make fun of you, but any other patient would be in tears with your pain levels. My EDS patients don't even blink an eye, it's normal to them." As he started to adjust me he began to tut before he told me I have some of the worst hips he's ever seen.  I left that appointment feeling very confused. It's so rare to actually have a doctor acknowledge the pain we feel. It felt reassuring to have someone validate me.

I think many of us spoonies and many of my brothers and sisters who have survived abuse, often feel we aren't enough. We feel that we don't contribute enough to our families. But, we also feel like we are "too much" sometimes. We are too emotional, too needy, too exhausted, or too weak. The first year I stopped working full-time and began to pursue self-employment I felt like the biggest waste of space. My therapist later explained to me that my childhood primed me for needing to feel like I provide. As a child, I had to be useful or I didn't get any attention from my parent. I was often emotionally neglected, and I would do anything to get a brief snippet of affection. And, when I wasn't able to provide as much financially to my marriage it sent me spiraling down into a deep depression. I was convinced my wife would soon leave me because I was no longer able to work full-time due to the amount of pain I suffered daily.

Now, almost two years later, I still struggle to reframe my thinking on high pain days. But, I now try to remember how much I've overcome to get to this point. I've done years of physical therapy to retain the function in my legs. I stay as active as possible taking walks with my dog, doing yoga, and taking spinning classes. Every day I try to get out of bed and do something. Even if it's as simple as making the bed and feeding the pets before my wife goes to work I remind myself how much energy it took me to perform these chores. Yes, maybe those things would be "easy" for someone without a chronic illness. But, living with this type of pain isn't easy at all. If I were to pull a Freaky Friday and switch bodies with a completely healthy person, they'd struggle to continue on with their normal activities too. As time has passed since I first became ill I start to realize more and more that my brain didn't give up on me, my body did. I'm not apathetic, lazy, or a bad person. In fact, I'm the opposite. I have to work ten times harder than anyone else to maintain my body. But, on top of that, I still go to school, write, run my own business, and I'm a kick-ass wife and fur-mom.

When I start thinking about overcoming my high pain days as a strength instead of a weakness I begin to rethink almost everything about myself. I remember that I'm empathetic, kind, helpful, and loving. Now, that's what gets my through my high pain days. No longer do I feel despair. EDS and everything that comes with it is a part of who I am. Pain, while frustrating to live with, is just a fact of my life. But, I'm stronger because of it.