Pain Never Sleeps

It is a strange thing to find yourself with tears flowing but not quite realizing why; for me, this has been my experience with the chronic pain of myositis 1 min


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I wake as tears begin to flow,

I cry before I even know what brought them on,

And then,

Realization . . .

The pain that never ends, it seems has found its way into my dreams.

The words came to me one evening as I was walking through my pain as I try to do; I was so tired that entire day because pain had once again kept sleep away the night before. As I continued walking I started to feel the familiar frustration and anger at the pain, the disease, my situation in general...and the first couple lines came to me. Poetry hasn’t come to me like that in many years, so I thought I should pay attention and jot the words down to maybe expand and finish another time. After adding the last lines I was stuck but then a few days later as I reread it, I realized the poetry already expressed all I needed it to express and left it alone. 

It is a strange thing to find yourself with tears flowing but not quite realizing why; for me, this has been my experience with the chronic pain of myositis, it is so deep and vast at times I can’t fully process the magnitude of it. I don’t mean that as drama-queen-ish as that sounds it is just a new fact of my life and many myo patients’ lives). 

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Linda Rabinowitz

I'm a mom of 4 kids, diagnosed with Antisynthetase Syndrome/Dermatomyositis in 2016. My kids are all adults now (or so the law says lol!!), but my youngest who is 18 has autism and, while he continues to make incredible strides in independence, there is still a lot he needs compared to most 18yos. I was a stay at home mom for over 20 years until getting divorced. I returned to work in very early 2015, then had to stop in July 2016 as my job was very physically demanding and, being that my wrists would collapse when trying to hold even one shoebox (I worked at New Balance), it was time to stop. Now I'm just trying to find my way in this new world of chronic illness I've been thrown into.

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