My pain flares start in the base of my spine, in the secret spaces where my pelvis, hips, and spine meet. To many joints in one relatively small space I guess.
Then it spreads down my legs, through the muscle tissue there, to my knees, and also up over my mid back to my shoulders and neck.
The next to be taken are my upper arms, wrists, ankles, and feet.
My hands get weak and swell earlier but throb with pain last. My individual fingers and over all skin are usually the last part of my body to join the burning.
A cold heat washes through my muscles in waves, feeling like the jolt of adrenaline you feel when you are scared or embarrassed, only instead of nervous energy, it only brings pain. At first it is only a faint, warm, wave and is one of the first signs of an impending flare beyond my daily pain. It inevitably grows with the flare until is a cold, hot, implacable wave of wet, muddy, fatigue dragging me down into the depths of myself.
Eventually the burning pain and the cold, muddy, fatigue completely consume me, leaving me at best half conscious. Half conscious, incapable of moving, barely capable of thought, trapped in my experience of pain, looping.
In this phase, it feels like the energy is being sucked out of me violently, like holding my cells together will become to much and that I might die from the fatigue. I am a cellphone with 3% battery left, struggling to even keep the screen on.
You can’t die from fatigue can you? I try comforting myself…but it feels like I am dying so it drags on and on.
With the fatigue comes an ever increasing weakness and lack of coordination, first i can’t open jars, and need my cane more often. As my body seems to slowly be transmorgifying to jello or gravy, I get more and more weak. I fall more often, typo more, eventually holding my device for more than a few moments or at all, becomes impossible. My hands are weak, swollen, and floppy, like two half dead fish. I can do nothing, only useing them to push away or possibly, together to flappily leverage things toward me. Mostly I lay impossibly still in the end, even when as conscious as possible during that time, watching tv and marshalling spoons for child care until my nesting partner gets home so that i can lay lost in fatigue, a Herculean effort. Impossible but achieved.
My lungs get more and more reactive and weak right along with the rest of me. My lungs carry a burning, raw, stabbing pain, a thick congested wooly feeling, and a constant slight lack of oxygen. Inhalers, antihistamines, and nebulizers are constantly by my side, as easily accessible as possible.
The crying might be the worst part though, something going on in there changes my brain chemistry, with the flare comes despair, self loathing, disgust, abrupt surprise intense crying jags for “no reason” any time my body recoups enough to be capable of even making tears. In the depths of the flare I am often sobbing or even screaming internally…but entirely unable to move. My heart feels as if it is melting away, depression consumes me.
“Did you have a nice nap?” I’m asked.
“no” I say, “that wasn’t a nap.” to brain fogged and fatigued to even explain what it really was. Relieved that for now at least, I can at least speak and move weakly, communicate with my family.
Knowing full well that it will always be back.