My Journey Towards Finding Peace in Life With Chronic Pain
For all of my life, I have been known as the one who always saw the bright side. The one who always had hope it would all work out and be OK in the end. The one who not only would find the smallest things to smile about, but find ways to make others smile as well.
For 24 years this was the case. And then my years of pain turned to 12.
12 years with ever-increasing pain. I went from a swollen, aching, sharp pain in my knees to so full-body that I can feel when everyone is in my house just on the vibrations caused. I am so sensitive to even sound that I almost always wear earplugs and have even found my favorite style.
I haven’t actually hugged anyone in just about eight years and I plan on keeping that record. I hate being touched because of the pain that comes. I avoid it at all costs and lurch away fast when it occurs. In shows I watch to distract myself from my pain, I always catch myself cringing for the characters as someone high-fives them or even goes to shake their hand. Even on the strongest of sleeping medications with a fancy concoction of muscle relaxants, the most consecutive sleep I get is only three hours before the pain is too much and it wakes me. I try to take naps but they last seemingly not at all because inevitably, my pain of course worsens and I wake up.
I even have pain in my sleep. The pain has spread so that I now have limited mobility with walking, using my hands, and I even struggle to brush my teeth for longer than 10 seconds. The disability in my body also leaches into my dreams. Even as I walk in the dream world, I can’t walk for long and can’t use my hands hardly at all. With each action in my dreamstate causing currents of pain to surround me even more, until I wake into the real world with pain as my shadow.
Up until now, I have dejectedly been OK with it all and just hanging on for the ride. But then for the first time in my life, I had a suicidal episode. Within three months I had had 10 and they seemed to be getting worse. All I could think about was a plea that I would die. Life was not worth it. Just existing was too much and the pain too stabbing and sharp.
Through lots of work on myself and how I order my thoughts I have been changing my outlook, choosing the life I lead instead of just settling for it.
Instead of settling for my broken and “defective” body, I choose hands that don’t work how they used to and I choose to love all of my stretch marks that cover my torso, legs and arms.
I would love to say that this outlook change cured me and now I never wish to die, even when it hurts so bad I can’t stop sobbing, despite family being near and my pride at stake. I would love to say that this mental change has made my limbs work again and I can cook just as often as I used to — but I can’t.
My outside is unchanged. But my inside, where it counts, has. In moments where my pain rises to a new definition of level 10 pain, I still wish I could be released from this weight. But I am OK if I stay here. I have found peace and regained a semblance of control in the loss of control.
I know my body is not mine to completely rule. I know that fate and destiny have other plans. But come what may, I choose it. I choose it all. The good and the bad. Because it is mine and I am proud of who I have become and who I am fighting to become. Because of all pain, strife and the ocean of tears I have been able to help others. I have been awake when others are asleep, causing me to be there for those who are up struggling. I have felt what others can only imagine, and the ones who have actually felt it can find company in me, a fellow mighty. I have turned my existence into learning as much as I can and finding positive things to share, focus on and tape to my walls, so that not only can I keep myself going, but others as well.
To others I know my life might seem superficial. But that is OK. Because they don’t even have the barest clue what mountains I have charged and what storms I have weathered. The ones that matter will understand. Or work to understand the effort it takes just living millisecond by millisecond.
There are so many who need me to be there, even if it is just the knowing I am there still pushing through beside them. We are all only human after all. As a wise man said, “We may not be able to alter the journey, but we can make sure no one walks it alone” (Jeffrey R. Holland). So I will walk it with my friends and family. And just maybe, together, we can find that peace and make it stay a little bit longer than before.
Getty image by Jungsukhyun
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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