Wednesday, December 8, 2010

Lessons on a Vulvodynia Sick Day

Awesome flare! It has me on the couch at home instead of at my desk at work. This has NEVER happened to me before -- not without some exacerbating factor like being on antibiotics, and that only happened once. Today, my crotch ignites every time I move my legs, from rolling around in bed while waking up to shuffling around the apartment trying to get ready for work and making desperate cups of tea in a long-shot cooch-soothing effort.

Now that I'm lying still on the couch, the rage is diminishing. I'm hoping to get out the door in the next hour. It's important that I do, and it just dawned on me why: because no matter how bad the pain gets, even those times spent crying on the toilet (which I've done enough of these past few days, stocked with pillow and blanket in case I could fall asleep) have never been as debilitating as depression and anxiety. Mental instability trumps every kind of pain my cooch has thrown at me.

And as I -- let's phrase it positively -- gain more and more experience dealing with vulvodynia (boost that resume!), I've begun to understand the importance of having a stable mind when one faces chronic pain, serious illness, or any life-altering condition or situation. If you are mentally stable, you have psychological reserves that compensate for your physical or situational shortfalls. If you're not mentally stable, even the stable parts of your life can't save you -- your financial state, say, or your social network, or even the roof over your head. If you're not stable, a challenge like chronic pain will topple you over regardless of the other resources at your disposal.

However, I've noticed that the more time I spend with vulvodynia, the less extremely I react to the pain, even when it's immobilizing. Though I have cried about it over the past few days, I haven't been the sobbing wreck I've been before -- this despite the depression that's been haunting me over the past month or so.

I think what's happening is that the pain doesn't surprise me anymore. It baffles me, but my response has become more awe than surprise -- like this morning, the way every step is searing. What kind of mechanism could possibly set off so much pain?!? But I'm no longer scared of it. The pain still feels like destruction, but I've become convinced (99%) that it's not.

So I want to say to those who aren't there yet: look ahead. As you walk through your pain, you'll approach a point where you, too, are no longer devastated by your condition. It took me four years, and there were so many times I wanted to give up. I never thought I could reach this kind of peace with it; I never imagined it was possible. I wasn't even capable of the concept -- that my pain and I could coexist, that I wouldn't always be dangling over a fire.

As I mentioned in an earlier post, I'm volunteering with AmeriCorps this year, and part of my service involves facilitating "homeless book clubs." Yesterday, I visited a book club our outreach nurse runs, a group of homeless men living in a convalescence home as they recover from serious illness. They are reading The Giver, a book whose underlying argument is that pain informs life. The nurse asked whether the men's struggles have made them deeper people, and the men answered a resounding yes. Underneath their responses, I sensed pride -- they recognize how much more they know, how much deeper they are than if they hadn't struggled as they have.

That's the kind of pride I have now. Or maybe, again, it's awe. Thinking of what I wouldn't know if I didn't have vulvodynia stuns me.

And though I can't fathom what comes after this point, I know for sure there's more to learn.

P.S. I still have some magnets left! Email me at madpeachblog@gmail to get yours!!! They are little flexible used-car-dealer-type magnets, but they are free, and I will write you a nifty card as well. If you've already emailed me, you're on my list and will receive yours shortly.


  1. I am so sorry that you are having such a horrible flare:( I couldn't agree with you more about EVERYTHING that you have said in this post!! The depression and anxiety were way more challenging for me to deal with, and they made the pain nearly impossible to deal with.

  2. I couldn't agree with your more that you need to have your emotional state in order to deal with chronic pain. When I'm an emotional mess, my pain causes me so much anxiety and grief. I'm really proud of you for doing so well.

  3. I have had vulvodynia now for 3 years (this is the first year though that it has been explained to me, the last two I was an unexplained pain that I couldn't stop). Every once in a while, usually during a good flare up, I try to look up some sort of positive outlook or someone else's cure to this crappy chronic pain. It was good to come across your words of encouragement. Especially with so many saying "you might as well go the knife route" and I really just don't want to. Thank you so much.