Message for Hope's Sake

If she's reading, that is.

You know, Hope, my husband (henceforth called "Husband," because I'm lazy and that's easier, though this way I have to hit the "shift" key) urges me to post here more often. I think he hopes or expects that writing will help me freak out less often. (A side effect of that would be less bitchy behavior, including assuming he is being a jerk when he is not, thereby hurting his feelings.) But he also seems to understand better that anyone who write about this from a personal perspective has the potential to offer a new idea to another person afflicted with this crap - or a new doctor - or even just someone to read/talk with who gets it. I often intend to write here more often for all those reasons, but it's damn hard to sit down and write when even the sitting is painful, and focusing on the experience in order to write about it makes me more aware of the pain. It makes me sad to write about it, it makes me angry to write about it - both of those things, I think, because it draws my focused attention to it in a way I try not to allow at other times. Therapy sessions (my own, not the ones where I am the therapist) are some of the most physically painful times for me for that reason - I shut up and focus inward, and the pain comes roaring out at me with all its teeth and multifaceted characteristics. Here's SHARP, and STABBING, and ACHING, and SHOOTING, and CONSTANT, (I can't forget OH FUCK LIGHTNING KEEPS STRIKING MY CLITORIS!) in all their vibrant, flashing colors!

Yay, awareness!

A few days ago, I felt a bit horny and wanted to capitalize on it, because Horny doesn't show up very often anymore (something else that makes me angry and sad, and feel deeply bad for Husband). So I thought about it purposely in the early evening, conspired to convince Husband that it would be a good idea to try intercourse (I specify because I think the word "sex" has all sorts of possible meanings), and had a glass of wine. I don't drink alcohol very often - never was a big drinker, as even before the constant flow of narcotic pain meds through my system, alcohol in any amount made me sleepy. Now, with the medications, there's no point in trying to remain conscious after a few sips of wine or whatever.

That reminds me. I haven't taken the damn noon oxy. Sigh.

Back to the I Want To Have Sex With Husband plan. (He reads my blog, so now he'll know what I was up to.) The last time we attempted was three or four months after my surgery. Pay attention now: surgery was April of 2009. We haven't attempted since then because even helping him feel good, with no touching of my formerly fun bits at all, increases my pain significantly, usually for at least two days. Those parts of me are fucking ruined for me AND for him. (For now. I have to keep reminding myself that it may not be permanent. Shit.)

The problem, and the reason Husband never found out about this plan, is that by the time I had been thinking about this for a few hours, I was in significantly more pain just from the anticipation. I wasn't super wound up - just mentally keyed up a bit, and that was enough. I thought I could change my expectation and offer to help him feel good, but by then I was approaching my 8.5 on the pain scale and had taken another break-through pain pill, and concluded I had to give up on my plan. I don't know that Husband would have gone for it, anyway, but after failing even to approach him because there was too much pain, it hardly matters. What would feel better from his perspective? Trying to have sex and having to stop because it hurt his wife too much (and then knowing it hurt more than average for some time after the attempt)? Succeeding and then watching me be in lots more than my average pain for who knows how long? Being asked, and feeling like he had to turn me down in order to avoid either of those things? That one's really enjoyable for both of us.

Damn it, now I am really angry. Someone needs to find a sure-fire fix for this. And no, colostomy bags and adult diapers are not an acceptable "side effect" of a permanent fix. Think of something else, docs.

Okay. This post was for Hope, wasn't it? Not an uplifting one; I'm sorry. But it's a post, and often, that's what matters. I am sorry you have been suffering this bullshit for so long. I can't remember anymore if it is my fourth or fifth anniversary of the sudden onset of severe pain that is coming up in two weeks, but I know either is plenty more than long enough. I love Husband, and I miss being sexy with him. Lots.