As I type this my hands hurt, each finger joint sends dull pain into my wrist, which ricochets into my elbow, then my shoulder, to my neck. I fight the urge to tell myself it isn’t real, to invalidate the experience and write it off as in my head. I fight this feeling often, wishing something were causing genuine pain rather than my nerves pointlessly telling me something is wrong when nothing is truly there. I realize wishing for different problems isn’t productive, but I can’t help but wishing my diagnosis of exclusion was instead a diagnosis a lab could identify, or would show up on a X-ray. I hear doctors saying my labs are fine, imaging is normal, and I hear the voice in my head translating their words into mockery and accusations of embellishment. The doctors say research is minimal and I feel the brunt of this lack of research in the dwindling options of medications and alternative treatments.

I lay in my bed at night, body idle and I feel the ache in my joints, I toss and turn to find a position that eases the pain. When I walk any distance, when I climb or descend stairs, and when I attempt to exercise I feel the Active pain, I feel it in my hip popping in and out, frustrated by seemingly normal repetitive movements. Most nights the Idle pain keeps me awake, and the ripple effect of impacted sleep causes the following day to be filled with the exhausted full-body tiredness I can’t fight. This cycle is destroying my quality of life, and leaving little room for the hope of finishing school and holding any job, let alone one within my career field. I picture my old age in a wheelchair and realize I am not so old in this image, I can’t always see past the idea of feeling old before being old.

Every day I experience both the Idle and Active, an endless cycle of meaningless rest and hopeless movement. I find solace in games I play, knitting, and caring for reptiles. I do these things until I can’t take the feeling in my hands anymore. I bike to school and sometimes cannot bike home, so I rely on my mother’s offer of rescue. I envy the independence those around me have, the ability to bike or drive wherever, whenever. I am loosing that independence for myself and at times taking it from those around me as a result. I long for the ability to push myself without loosing the week ahead to idle pain and constant need for rest.

It is dull and depressing to write about the thing keeping me from enjoying life to the fullest. My glass is more than half empty, my spoons are all dirty in the dishwasher, and I have two forks to choose from; the rusty fork of forced productivity, or the slightly bent fork of doing what is best for my longterm health at the detriment of my future. I miss the optimism I had for life before this flare. I wish the cycle could be predicted, and I wonder when this part will end and respite will award me.