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How Pain Is My Superpower With Chronic Illness

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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

Originally published: February 6, 2021
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