Finding Courage on Dark Days in My Life With Arthritis
I ache for myself. The pain courses through every vein. Self-pity becomes even darker when nothing can be done to fix the problem. I feel opportunities and moments slipping through my hands. All the wonderful moments and chances I could have had disappear like wisps of breath on a cold night. And the hardest thing is that nothing can stop it coming. I struggle thinking about my future of being in a wheelchair, some unknown person by my side being paid to help me with everything I used to be able to do with ease and a sense of panache.
I have always treasured each movement my body allowed me to do. But it wasn’t enough. Those small amounts of moments are not enough in my lifetime that is stretched out before me, tinted with darkness and the sound of tears hitting my pillow. I beg, scream and sob for more time, for just a few more moments or hours of mobility and spurts of joy, but nothing comes to save me. Nothing answers my call. My family are near but I still feel alone.
Naturally optimistic, my positive smile can no longer lift me up. Sinking slowly and agonizingly fast at the same time, I try to quickly accept my new lot in life, but the weight is so much harder than I ever would have thought. Not being understood even by those who wish to automatically cracks a quick divide between us, widening with each new daily task I no longer can do. My body refuses to accomplish the simple movements I ask of it. Rivers of tears easily turn to oceans at the blink of an eye.
My simple dreams for my future seem further away than they have ever been, with no light for me to reach towards a brighter life. All I wanted was my own little house. I even have a replica of my dream house, made when I was in pain but still fresh enough to it to handle it with gusto, pushing it to the back of my mind as an unpleasant thought. The beautiful three-story house collects dust up in my closet, still waiting to be brought to life.
However, I still hold onto a sliver of hope. I have had my aspirations and anticipations cruelly dashed over and over too many times to count. So I hold that sliver of hope close to my chest, never letting it show in fear the universe will see it and conspire against me once more. There it stays, tucked in close, keeping me warm from my pain-filled, tortured soul. “Never give up hope,” my bright burning dream-life warns through the fog of despair. “You might just get that happily-ever-after in the end.” Even if it is only a piece of joy instead of the buffet of happiness I crave, I know I will savor every little bit that someone with different trials might not.
I hold fast to that speck of courage. Because hope is just courage. Courage to fight another day. Courage to smile in the face of your struggles. Courage to reach out even as arthritis overtakes you. Courage to not settle even when everything else, even your own body is telling you to quit.
But no real hero gives up.
And if I am going to be known for one thing, it is that I am a hero. Just call me Courage.
Getty image by PinkOmelet.
I have dealt with pain for 16 years already, passing the half-my-life-with-pain mark now being 28. 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. 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. 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, Chronic Fatigue, and recently diagnosed with Lupus as well with a promise 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. My pain jumps higher and higher and no doctor has had the gumption to stick with me and my severely deteriorating health. I walk like a 96yr old woman and hurt so much worse. Technically Miserable but still I will fight on, 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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