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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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Mar. 28th, 2008 04:36 am (UTC)
I have been and will continue to pray for you and send good thoughts. I hope that the pain can ease up. I know it must be hard for you to get to the doctor, but you normally seem to not suffer quite this much, so it worries me.
Mar. 29th, 2008 07:25 pm (UTC)
Thank you for praying. It worries me, too. I'm thinking now of calling the doctor on Monday, explaining that getting there would be very challenging and asking if they have any suggestions. I also see my physical therapist Monday, and plan to ask what she thinks I should do.
Mar. 28th, 2008 08:16 am (UTC)
Just wanted you to know that you are not alone with the pain lately. My head has been hurting intensely for most of the past four weeks, and it is beginning to become obvious to people that I am not well. [gentle hugs] I'm here if you need someone to sit with you.
Mar. 29th, 2008 07:26 pm (UTC)
Re: pain
I'm sorry you're dealing with it too. And thank you for the support.
(Deleted comment)
Mar. 29th, 2008 11:49 pm (UTC)
Re: Chronic Pain.
Thank you for your support. I am looking forward to hearing more about how you deal with your pain. It is often helpful for people to understand how we cope with our pain.
Mar. 28th, 2008 09:00 pm (UTC)
Voice my pain
I have my own RSD\Fibromyalgia\Arthritis pain description and use it with all of my doctors. On a scale of one-to-ten; my extreme level goes up to fifteen. It's as real as it gets. When I get to pain-level 14 - it's time for an injection in my left shoulder. It's serious when the doc says that I look "sick" - when at home, I sit on the floor and try to rock myself for a little bit of comfort.
Mar. 29th, 2008 11:51 pm (UTC)
Re: Voice my pain
Yeah, with RSD, the pain really does go up to 15. Unfortunately, a lot of people don't understand when I say that. As a college student, I find that the skepticism is pretty high. I personally think that the standard pain scale doesn't communicate RSD pain very well. I like yours better.
Mar. 30th, 2008 06:00 pm (UTC)
Re: Voice my pain
My docs know that I'm dead-on serious when I say my pain is an eleven or twelve. That's when I get the proper medication for this break-through pain that no one says exists.

The combination of all the pain syndromes from which you and I suffer, allows us to make "some" of the rules. I own them and can do as I please - no matter what anyone else says. "If they don't like my peaches - then don't shake my tree!!!"

*** soft hugs***
Apr. 2nd, 2008 02:32 am (UTC)
Re: Voice my pain
I hope it didn't feel like I was criticizing your scale. I like it, I wish we didn't have to live with it, but I didn't want it to seem like I had something against it. And I'm glad that you have doctors who can understand how you describe your pain, and get that it's that painful and more. Mine are pretty great, when I am smart enough to call them.
Apr. 2nd, 2008 06:39 pm (UTC)
Re: Voice my pain
I'm sorry if my tone appeared critical, Nickie! From time-to-time, RSD makes me brain-stupid. I woke up with a pain-level #12 this morning. My left knee is in a high-flare mode right now. If my doctor heard my 'rating-beyond-ten' on my non-rsd side; she'd know the true depth and scope of my pain.

I "rate" - therefore I am!

***soft hugs***
Mar. 29th, 2008 12:23 am (UTC)
**Sits and rocks with you holding your hand**

**lets you lean on my shoulder**

**cries with you**

Mar. 29th, 2008 11:52 pm (UTC)
Thank you.
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