Some Nights………

“I am blessed, and I am still alive”


Lightning bolts. Lightning bolts shooting through my legs, my arms, taking my breath away and making me sob. I’m so dehydrated from the meds, from my dysautonomia, that I cry without tears. 

These are the nights that I can barely sit still, let alone sleep. These are the nights I sob, wishing there was a magic pill strong enough to make me not care, not feel.

“Courage” my EDS Zebra

These are the nights that I can barely sit still, let alone sleep. These are the nights I sob, wishing there was a magic pill strong enough to make me not care, not feel.

But I feel. I feel everything. When the lightning subsides, it’s a hot knife cutting into my feet, my calves, my legs. The feeling when you go from completely numb to sharp stabbing pins and needles; hard to not think about, but bearable. As long as I don’t touch my face, my face stays at the numb point now.

Nights are the worst. I can usually fake it enough during the day, moving, turning, pretending to be busy or on my phone to breathe through the pain and make the seconds, minutes, of lightning bolts appear not to be happening. By the time I’m home, or night has come, just lying in bed fills me with dread because it’s pain. My head turns wrong and the numbness in my face explodes into my jaw, my eyes, my temples. My legs cramp and burn, making me wish dark thoughts, and pray I was healed. 

I begin to panic when the pain is bearable, because what if this is life, what if this is my new normal? My zebra “Courage” has become my comfort…he is developing wear marks where I almost rip him apart when the pain is severe. I wish I could say this was every now and again, but it’s nightly now, waking me up crying out from a deep sleep. Sleep used to be my escape, but has become my enemy. Sleep eludes me, and then pain levels skyrocket even more. This is not the life I imagined, but it’s the life I live. All I can do is remind myself I am blessed, and I am still alive.