Fibromyalgia: A Queer-Femme Crip Narrative Essay

We mourn (here is where La Llorona comes in) the loss of the "healthy," abled, integrated self, a self we may never have possessed. I can never go back to the way things were before I lost my "health" or home or whatever.¹

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I pull out my old green drawer with the half broken bejeweled butterfly handle. I put the drawer on the bed and get my giant pill box and start. Fibromyalgia nerve medicine: one in the morning, one at night. My new fibro medication is the same as what folks with opioid addiction take to curb their illness. Narcan. One at night—it has to be at night. The pharmacist gives me a judgmental look when I pick it up. She tosses the paper I need to sign into my car and tells me my copay. $30. Not the worst. Not like the time I did the bladder medication for $300. That lasted one month. Acid reflux: one in the morning on an empty stomach. Not going to happen. Hysterectomy: one hormone pill at night. Hot flashes if I am one minute late. Mood disorder with bi-polar tendencies: one little pill in the morning, one big pill at night. Anxiety: one at night and as needed. Pain inflammation: as needed but with food. IBS: one in the morning on an empty stomach; it makes me more sick than well. Fish oil, Evening Primrose Oil, Vitamin D, multivitamins, extra calcium, Glucosamine in the morning with food. Empty stomach, with food, in the morning, at night. How? Why? I throw the drawer to the ground and break the other half of the butterfly.

Naughty girl. Don't break your nice things. Get down on your knees and clean up this mess.

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Sometimes my partner and I do it together—light a nice lavender-scented candle before bed, take a shower, lay down on clean sheets, and begin to … separate my medications into little compartments. Sunday. Monday. Tuesday. Wednesday. Thursday. Friday. Saturday. Seven to twelve pills per compartment. An intimate moment exchanged between kisses and snuggles. I give directions and we count out pills. One, two, three all the way to at least seven each time. These medications have had such an impact on my relationships and my sex life. I'll get it back one day. The desire still lingers, wants fingers, and mouth, caresses and thrusts, but getting to that point is impossible. "Kissing is good for us" says my partner. "Sexy times would be good, too." "Someday soon," I reply. Someday soon.

Needy girl. You need someone to give it to you good.

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Daggers drag my flesh, and stab over and over in the joints. It is raining again, and with rain, the daggers. Fog creeps into my brain swirling through the backs of my eyes, pushing my skull until it almost feels like a pin could relieve the pressure building in my crown. Almost impossible not to just roll over, pull the sheets, prop my head on my medical grade neck pillow, and fall to a restless sleep.

Pain. Somnia.

I roll and prop myself on bended elbow, try to match movement with breath. What were once daggers, are now hooks deep into my lower back, upper back, and pelvis, holding back some of me, while the rest of me rises. The hooks dig deeper; they want all of me to stay. I rip flesh and immediately the hooks in my low back scream. Hunched over, not putting any weight on my right leg, I limp to the bathroom, make it to the toilet, and know that sitting means standing again. It isn't always this bad; it has not always been this bad. Being diagnosed with fibromyalgia. A new diagnosis, but old, old pain.

Nasty girl. Talk dirty to me, nasty girl. Tell me nasty thoughts.

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How would you describe your pain today? Have you tried exercise? How many medications are you taking? Have you tried this medication? How can someone so young have had so many procedures? Have you tried eating gluten free? How can someone...