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?
Getty image via strickke.
I have dealt with pain for 17-almost 18 years already, passing the half-my-life-with-pain mark now being 29. It started with me being born with twisted leg bones followed by discovering this at the age of 13 after pain in my knees from my twisted bones grinding on them. 2 years later I had waist down reconstruction surgery. The left surgery went well. The right surgery did NOT. Epidural didn’t work (later finding out it was because of my Ehlers Danlos Syndrome) and my nerves were rewired from the extreme pain via my bones being broken and twisted to straighten them. I was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS) which was full body-extremely rare. I learned to ignore the pain so I could try and live a normal life, but it got so bad my hands no longer would work from the excruciating pain. I barely made it to graduation, failing my last quarter of school. Luckily my ranking was 4th so I still graduated with extreme pain and with help from others who had to write for me. Pretty quickly I was bed-bound and dreaming of hospitalization so I could have strong medication to ease my molecular deep ache. Severe Plantar Fasciitis kept me avoiding walking at many costs. Flash forward to 3 years later when I was miraculously healed over-night. I thought I was free and worked on gaining back all my muscles that were atrophied. But then my pain came back and began rising ever higher with many more complications taking over every bit of my body. I joined this site for freedom to express my struggle held deep inside for so long with a smile on my face and not even my family knowing what I went through. I never realized how glorious it was to be open and now I refuse to go back. My sense of peace demands to no longer have a fake smile on my face. I am now diagnosed with EDS, AMPS, Fibromyalgia, Hypothyroidism, Severe Insomnia, Asthma, Hypersomnia, Lymphedema, Chronic Fatigue Syndrome, PTSD, Scoliosis, Sciatica, Bone and Shin Splints and recently promised that I will soon cross the line and be diagnosed with Juvenile Arthritis. It is SO freeing to know that the reason for all of my pain is because of my many overlapping diagnoses. I am currently working on filing for disability and have lost my dream of Interior Design to keep me warm. Also dealing with blisters covering my scalp and making it ridiculously tender with serious GERD and acid reflux problems due to the EDS. Constantly focusing on not throwing up each second is my new normal. Swallowing 10 times per first swallow is becoming habit. Psoriasis and Eczema now are hitting me harder than ever. I walk like a 96yr old woman and hurt so much worse. Only recently did my new rheumatologist pinpoint my last pain diagnoses as being Spine Arthritis, Psoriatic Arthritis, and RA. At long last I have found a home health company that save me pain and energy by coming to my house for appointments. It is ingenious and such a blessing! My new PCP is a brilliant and knowledgeable woman who actually cares for her patients! She wants us to live our best lives and works hard for it to be so. Thanks to her I now also have a pain doctor who CARES and is not afraid to help his patients live their most pain-free lives!!! He is SUCH a gem like her! It almost 18 years to find these blessed doctors. The biggest lesson I have learned is that my happiness is vital and if I have a doctor that isn't measuring up, drop them ASAP! Life is too short to suffer at the hands of others-especially when we are paying them to supposedly help us! It isn't worth it but YOU ARE! Finally in a place in my life where the future looks bright and I am excited for the challenges, as I know my health loves to constantly cause more pain and troubles like my Major Depressive Disorder, Psychosis, and Anxiety. I have been given a VERY complicated and Unique body that I choose to have as I know it better than anyone else. It is mine and we will learn to become a team though it may take a lifetime. I will never give up. No matter what I will fight on! Just as I have these long years, savoring each moment and smiling at each thing that lifts my burden a little. Life should be cherished, no matter how pain-filled. And with The Mighty at my ruined and failing finger-tips, I will carefully walk into the world with my shoulders back, face to the sun, and hope in my heart with a wish to lift a few fellow down-trodden. We got this!!!!
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