How to Find Joy When Fighting Chronic Pain on a Daily Basis

At 5:30 a.m., I am finally able to fall asleep. A potent concoction of pills finally knocks me out after five hours of having them in my system. All because it takes forever to shut down my brain, which is constantly battling my pain to the dustiest corners of my mind so I can pretend to be “normal.” The kicker is that the muscle relaxants don’t even help my muscle spasms that I have on a daily basis — and that is without doing anything involving work-worthy movements.

On days I have to drive, my muscles flex for 10 hours afterward, constantly flexing in a painfully unnatural arch that feels as if the muscles are being  twisted out of my body. But this is normal. Nothing new. It has been going on for nearly six years on top of my normal full-body tingling, burning, aching and bruising pain. I often forget that this isn’t what other people live with, too.

My neurosis started a year and a half ago. It happened off and on for the past 10 years in my spine, making me paralyzed in agony for hours on end. That was a rough pain to get used to, but I managed it. I had to. The neurosis spread to my hands and the tops of my feet. My hands have always been the worst part of my body, the first to experience new pain and the last to get used to it. It took me almost a year of that year and a half to get used to it. But I did. And then it spread to my legs, waist-down the sharpest, clearest and purest pain you can imagine. After 12 years of pain, I can easily say that it is the worst pain anyone has to deal with: including waist-down reconstruction where they had to break and twist my leg bones.

But I knew I could and would get used to it, and learn to work around it. I have done it when my pain rises each and every week for the past eight years, and I can still do it now, better even than ever before. The neurosis in my legs took me two days flat to get used to. I confess I have never been so proud of an accomplishment before. Then the neurosis moved to my arms, too.But that was OK, because I had learned how to beat the pain and within a day I had it under control.

For the past two weeks, I have had a cold. Not anything wild — that seems to be how things go once the world starts to shift to winter. But my family recovered from theirs within days. It’s day 15 for me, and I am still coughing like my life depends on it. Yet again, I didn’t bat an eye at this development. I didn’t even realize it was a problem until the third night in a row when my dad had to wake me up to take cough medicine. Today, I could see the concern in my mother’s eyes when she stated how bad my cough sounded. And that is when it hit me: how much chronic pain warriors not only put up with, but how they get used to it. We are often so used to being utterly miserable 24/7 that we forget that it isn’t “normal.” We forget that life isn’t just something we have to survive, but that it should be something we can enjoy and even savor.

I recently learned that despite all my optimism and hope, I will forever deal with pain. 68 more years to go for me if I live to the age of 92 as I always secretly hoped. I don’t want to just live life barely skating by. I don’t want to live counting each movement so I can maybe, hopefully, kind of not have as much pain if I moved a bit less. I don’t want to exist spending all my energy getting ready for the millionth doctor’s appointment later in the day just to have them give me confused expressions and vague “eat better and get more sleep” promises that if I do, I will suddenly have all of my level 10 pain disappear, when my family and I all know it will just get higher the next week.

For heaven’s sake, I whimper in my sleep and wake up in the fetal position with my hands curled up like a skeleton that died a horrible death just because when I sleep, I can’t control the pain. My body naturally curls in on itself in a desperate attempt to ward away the vicious pain. No pain medications will work despite humbling, desperate wishes otherwise.

But I don’t want to think about this each day for the rest of my life. I want to make memories! I want to save up my nonexistent energy and battle through the excruciating pain so I can do fun things once in a blue moon to replay again and again as I lay shuddering and sobbing, hugging myself on the next day my pain arises. I want those memories of small spurts of joy that may only have lasted two hours and left me sleeping for three days after.

I came across a video at the start of this year of a woman who refuses to dye her hair that is turning grey despite being in a career that is particular about looks because she has a condition that will make her die before the age of 70. She knows she will never get to grow old with her beloved husband and watch her kids raise their own children to adulthood. She knows more than anyone else that each moment is precious and should be savored because all too soon it will be gone, snatched away by the unforgiving thief named Time. She cherishes each second. As it should be.

Her heartfelt words struck my hardened soul that despised the life I was given, despised the pain and unfairness of the hurt of living. I know I may never be truly “happy” because I have level 10 pain all the time with the knowledge it will get worse again before each week’s end, but I will find joy.

My Ehlers-Danlos may make it impossible to swallow the first 10 times, causing me to learn how to focus on not throwing up each second after, but I will find joy.

Doctors may not have a clue to help my swallowing issues or my pain or even the savage blisters covering my scalp making it more tender than a  newborn, but I will find joy.

Because I have to. Because as a chronic pain warrior I don’t have a choice. Life must be worth living. I cannot settle for less. I will not settle for less.

Humans do not exist to be miserable. We have been given and created too many wondrous things for that. Humans exist to find joy, to chase happiness until we are content and gray with dopey smiles on our faces. And so I will find joy. Even if it is as simple as my favorite song coming on the radio right when I turned it on. Or because I accomplished the task of brushing my teeth without dropping my toothbrush with my fibromyalgia-ruined hands. I will find joy in the littlest of things. Because who better to cherish those precious little things than a chronic pain warrior?