Nickie Coby (puppybraille) wrote,
Nickie Coby
puppybraille

Pain Beyond Words

As I wrote yesterday, I've been in a lot of pain, and it's putting a cramp in my blogging style this week. It started with an increase in pain immediately after my last appointment at the pain clinic (it's not my nurse practitioner's fault, she didn't even touch me, and in fact her med changes are helping with nausea issues). So, I figured I'd just wait and see what would happen, since I noticed that the nausea medication says it can sometimes help with pain. But the pain got worse, probably because of a bunch of storms one after the other. I was able to get som writing done earlier in last week, but I've started feeling beaten down by pain.

So I started thinking about how I struggle to give real voice to my pain. I can talk about it's effects. I can try to put it on a scale nine out of ten. But I can't always describe it in ways that can allow others to know what the pain is.

Even as I think about it, I don't know if I want to describe it. The reality is that I find the pain so horrible that I don't want anyone else to know what it's like. I don't want anyone to feel the consuming grip of pain, the desire to sit on the floor rocking and whimpering just to distract myself from, or give an outlet to my pain.

I feel this need to have people understand how real the pain is to me, and the feeling I have that my pain is horribly real enough, and that I want to protect others from it's vivid reality. And thus, it's hard to know when to speak up, or what to say. Do I write about it here? Do I ask for support on the RSD Support forum I belong to? Do I try to find time to call or visit the doctor? And if I did, how could I give voice to myself, to speak of the pain, and what I am feeling? I almost wrote "give voice to my pain", but then I realized that it's not the pain which needs a voice, but rather Nickie/puppybraille who needs the voice to tell the story of how this pain is affecting me. It is I who needs to have the voice to tell others what they need to know, and empower myself. The pain doesn't need any power. The pain doesn't need a voice.

And yet, I also have a sense that I need to listen to my pain. I need to learn what I can from it, learn what I can do to increase comfort. Learn how to care for myself, to increase the comfort, "give voice" to the comfort, and allow the comfort to be the dominating voice/story/narrative of my life.

In all of the struggles I face in trying to use language, narrative and voice; in all of the ways that I've seen pain disrupt my language and my life, I want to balance giving voice to myself who deals with pain, and giving voice to the experiences which bring comfort. I must balance using language to heal, and using language to advocate. I hope that someday, I will feel less of a divide between the two voices.

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Tags: chronic pain, dialogues, disability related, health, hope, my writing, pain management journal, reading illnesses, rsd sucks, stories with a point
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