You Got the Sand? – My Bad Fibromyalgia Day

Everything is numb. The same kind of numb I used to get when I sat on my leg for a few hours. Blood rushing to the appendages, every pulsing heartbeat an ache screaming inside of me. Only, it’s my whole body and I just woke up from sleeping for 3 hours.


9:30….crap, I overslept again! 3 alarms, 4 emails, 2 phone calls, 2 voicemails, and a partridge in a pear tree. It hurts to sit up; I do it anyway. Shake the dizziness off and push the pain back down. I always have to push it back down.


You can’t tell it’s there; it’s always there. Me and it are one person now, you see. Everyday the pain wants to show itself to others; I isolate it to shaking hands and dropping things. 37 and some days I can’t cook myself something to eat. Some days it’s all I can do to keep from sobbing. I fear those days.


So I hobble, bent at an awkward angle, stiffly trying to move my stubborn body and bend it to my will. Each step is a testicle crushing, joint popping, shout stifling coin toss if I’m going to fall forward onto my face or not.


My hips ache. My head hurts. I feel weak like the onset of gastroenteritis. My feet and hands and ankles and wrists are swollen. I can’t stand up straight. I can’t sit upright. My body wants my mouth to scream uncontrollably, that high pitched nasally fearing for your life scream that puts chills in your body and raises the hairs on your arms.


How am I gonna pick up my little girl? How am I gonna get groceries? How am I gonna eat? Or walk? Or drive? Get a job? Function? Keep all those little shouts to “just kill yourself, get it over with already” at bay? I can feel my will wearing thin.


Everyone tells me I should just work out more. Lose my belly, “Just go for a run, get a better diet, quit eating so much.” I can’t think of the word taco. I snap my fingers grasping for what I was trying to do, standing in the bathroom with the shower turned on. I can feel my intestines wound up in my stomach and they hurt like they’re being squeezed. I sit on the toilet for hours and still can’t poop. I’m always hot.


Carol helps me up most of the time. Up from the bathtub, up from sitting on the couch, up from the floor when I fall. She carries the heavy things, and by heavy I mean anything more than 10 pounds. And thank whomever made stair railings! I don’t walk up stairs so much as I pull myself up them, stopping every 5 or so to catch my breath and quell the rising pain in my testicles.


Did I tell you yet about the testicle pain? Well then, let me now go ahead and tell you about that. It’s constant and not quite crushing, but a good firm squeezing all around both of them, the kind of squeezing that let’s you know “these things are sensitive, and they’re here, and they don’t like being walked around.” Ya, so, that’s always a good time.


I wish I could tell you I have hope for the future. I wish I could tell you my good days outweigh the bad ones but you seem like a good person and I don’t want to lie to you. I scratch the hours, days, months off like a convict counting down his sentence.


I’ve cut out dairy. I drink almost nothing but water. I stopped eating so much white bread and pasta and enriched carbohydrates. I’ve had to change who I am and completely redefine “exercise”. It’s like throwing a glass of water on a brick wall; nothing ever takes it away, it only delays or minimizes it.


Some people ask me what’s it like? What are they like? The bad days, I mean. “A little slice of that,” I say.





One thought on “You Got the Sand? – My Bad Fibromyalgia Day

  1. Thank you for writing this, Joey. The only thing that I can’t really relate with is the testicular pain, but I do have pelvic pain.
    Keep writing and keep up your sense of humor, without that we’re totally screwed.

    Liked by 1 person

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