How Pain Is My Superpower With Chronic Illness
I will be the first one to admit I don’t know what it is like to have a flare suddenly hit you and debilitate you. Or to randomly have insomnia hit you unexpectedly where you can’t stop thinking or the pain is too much.
I don’t remember what any of that is like. Because my chronic pain really is chronic. 24/7, level-10 pain. And when I say level 10, I don’t mean the rubbish one-to-ten scale the doctors use. I am talking level 50, you can’t stop sobbing the pain is so much.
But yet, even then, I still live each day. I still smile at my family and laugh at truly funny things.
I stay up each night until 8 a.m. when all my hardcore sleeping meds that have been in my system for six hours finally make me sleepy enough to blackout for a while. The most I sleep is four hours because pain always wakes me.
I still live my life and search for those good moments so those bad, horrible, scream-worthy moments can be forgotten.
I have blisters on my scalp constantly searing, burning, itching and I cannot swallow. It takes four hours to swallow something, but my chronic fatigue makes me sleep 20 hours a day, so I have to go to sleep and wake up vomiting.
I am a strange mixture of twisting diagnoses including insomnia and chronic fatigue. Muscles freeze up, my hands stop working often, everything pops out of place, but I have discovered the mind can tune out the most basic of pain. If I slam my finger or stub my toe really bad, I feel nothing at all. Paper cuts appear on my fingers because the pain is so inconsequential it doesn’t even register. There are more important things to focus on.
Tuning out so much pain causes me extreme hunger, so I have to stop myself from stuffing myself full. My hands stop working before I am done eating. Always hungry, always bone-deep tired to the point of not having enough energy to take my medicine that would help me. My body tells me sleep is more important.
By far, my lupus is the least predictable of my diagnoses. Rashes, hives, blisters come and go so dramatically it makes me feel like I am “crazy.”
But time will show me the pattern. Soon I will catch on and then be able to prepare for what comes, so it doesn’t knock me down (even though I am usually lying down anyways).
Thirteen years of things getting more and more terrible, and while I do mourn losing my teenage years to surgeries, physical therapy and smiles that hide the severe pain, I know I am a better person than before. I know this life of trouble and struggle has taught me priceless lessons I needed to know. I have been able to help so many friends with my knowledge.
And who wouldn’t want a nemesis that helped you make the world a better place? Pain as a superpower? Definitely yes!
Getty image by Angelina Bambina
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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