Because...
- I don't know what the hell NIH's Vulvodynia Awareness Campaign is going to do for vulvodynia. They're offering a career reward for doctors who study it; hey. Other than that, how are they actually raising awareness? I am too angry to read things thoroughly right now, but I don't see any plan on their page that is actually going to make people (doctors) more aware. What, are they all going to magically land on the webpage and individually ask for the information packet?! Are they all going to tune in for the press conference? I don't get it. If NIH were Pfizer, Viagra would be a typo!
- I am so tired of my diet. I hate eating in the first place; it's always been a hassle. But now having to commit all this thought and effort to it? And to eat so carefully and still get glutened anyway? And to eat so carefully and still be in pain? And to have the food affect not just my crotch, but my body and my mood? To have it throw me off of my game entirely? I am exhausted. I've got no one in this with me. I live alone and I know no one facing the same challenges. Which brings me to...
- People absolutely suck at providing empathy and support for others. I have no tolerance for it anymore. I can't count how many times I've felt ignored or forgotten because people didn't ask about it or changed the subject or talked about other, competing things (sex, Diva Cups, etc.) without remembering what I'm going through. And yes, I don't expect people to be asking about it all the time! I would hate that! But I also can't ask for sympathy all the time, and wow, wouldn't it be nice if I didn't have to? What a novel thought.
- My crotch hurts. It still hurts. I don't know when or if it will stop hurting. I feel trapped inside my body. It's driving me crazy. The thought of having this pain for the rest of my life makes me wonder what living is. I feel like I spend 24 hours a day working around it, like everything I do I do with a 100 pound weight strapped to my chest.
Quinn over at Life with Vulvodynia suggested in
a recent blog post that we make a list of what distracts us from our pain. Seeing as I'm feeling desperate and crazy right now, I'm going to focus on mine. These are the things I posted in response:
- doing music (listening to it is too frustrating; doing it requires me to focus outside my body)
- hiking and taking photographs (not going to happen today)
- playing The Sims 2 (my butt hurts too much for much of this one; maybe I'll try a different chair)
- dancing (not feelin' it)
- cleaning (not up to it)
All of those seem pretty overwhelming. All I want to do is sleep, but I'm too agitated. Oprah's on in an hour. Maybe she'll distract me.
To manage vulvodynia, you have to treat your whole body. That includes your mind. Living with chronic pain takes a MAJOR psychological toll.
ReplyDeleteMy pelvic pain specialist prescribes antidepressants and anxiety medication.
I completely understand the feeling of being trapped in your body and going crazy.
I'm not a fan of taking hard-core pain medication. I find, at times, that an anxiety medication is far better.
Have you considered a psychological approach to vulvodynia? It's made life a little easier for me.
I can relate to you and share many of your thoughts. I know when I try to bring up how I am feeling people either don't respond or change the subject. Sometimes all I want is to be acknowledged, but I get nothing. I wish I could take a vacation from my body. I wish I could have my life back and not hurt everyday. Sex is the least of my worries- I just want to be able to sit and not hurt, to walk and not hurt and stand and not hurt. I live everyday in fear of what my V is going to do to me. It has made my life a living hell. I am 30 years old, married with 2 kids and I pray that the pain gets better or goes away. Suffering is not easy and I wish my life were different.
ReplyDeleteThank you both for replying. It helps to remember I'm not alone.
ReplyDeleteQuinn -- I have bipolar disorder and am currently between psychiatrists. I almost have an appointment! Their appointment scheduler is on vacation (lol). But once I get in, I'll be addressing all this with my new doctor, including determining whether any of the psych meds work for my pain. Thanks for endorsing the psychological aspect; it keeps me open to treating it.
anonymous -- thank you for replying. I'm so sorry you are in pain and feeling lost because of it. I think one of the hardest parts is not knowing anyone in real life who is going through it. I hope the online community provides you with some comfort and support. I hope that your pain does go away someday so that you can live your life without suffering.