Dear Karen -

I'm writing as a follow up to the post I put up earlier this afternoon, because I know that it's possible that the information I provided could be more unsettling than not.

But, it's been my experience that confusion and mixed messages in the end just fan the flames of fear. And the most terrifying aspect of any experience - including RSD/CRPS - is that we are too often flooded with a thousand things at once.

That's where it's most helpful to take things in bite-sized pieces, separate out the strands so to speak. Use the resources of sites like the RSDSA http://www.rsds.org/index2.html and American RSDHope http://www.rsdhope.org/ to more fully understand what's going on with the disease, while at the same time not losing touch with the non-RSD parts of our bodies or how - in the exact moment it's happening - pain stimulus impacts us emotionally. To the point that if the emotional experience is simply overwhelming, we break it down some more, until we can be aware of each "primary emotion" (fear, sadness, anger etc.) and ultimately get the the point that we can acknowledge and experience each without the need for resistance or guarding on our part and it's no longer a big deal.

It's also important to literally take a few deep breaths and focus on the fact that with each exhale, you experience rest in your body, along with everything else that's going on. You can also look behind your closed eyes and see either primarily light, darkness or a mottled mixture of the two, and then rest for a while in whatever is most comfortable. And then be aware that your experience includes physical rest as much as it does physical or emotional pain. And that rest in your body is ALWAYS available as a place of refuge.

Then, as with physical pain, and in time, we can acknowledge each sensation as it arises. After 10 years of this stuff, I think of it as standing securely on a ledge, under a gigantic waterfall. We may get very wet from the spray, but at the same time, we're not being pulled into the vortex below.



Mike

PS That said, we all slip off the wagon from time to time, even for weeks at a time. But it's no big deal, we just catch ourselves and get back on again.

PPS Another trick along the same lines is learning that we don't have to define ourselves in terms of what we have always wanted to be. It's like at just a little distance, we can see how hard we were always trying to identify ourselves in terms of some preexisting notion or model. And since that was ultimately a matter of individual choice - societal expectations were there of course - we are free to redesign the template at any time, as circumstances dictate: or not use one at all. (To this day, I can relate my own epiphany, 18 months or so into this thing, in exacting detail.)