Wednesday, March 30, 2011

Romantic Bipolar

I messed around with my Neurontin for a while thinking it was the reason I was sleeping so much, but my overall need for sleep seems to be independent of whether I'm taking the Neurontin at night. Yes, if I take it during the day, I'll be sleepier -- especially if I take it overlapping with Benadryl: DON'T DO THIS! -- but taking an extra dose doesn't seem to have a cumulative effect on my sleepiness like I thought it might.

Which took me to the Effexor as the culprit. As you may recall, when I was taking a standard Effexor dose, 150mg, I was in what I called my "Effexor coma." I worked, I slept. I started dating Catfish -- I worked, I saw Catfish, I slept. I drank coffee, I slept. And since I was on Effexor, I didn't care that nothing much was happening in my life.

On a lower dose of Effexor -- about 1/8th my old dose -- I haven't had the sleep issue to the same degree, and I've still had the benefit of reduced anxiety and depression. But as the weeks of Effexor wore on, I started to sleep more, and it got to the point where I didn't have a life again. But I wasn't on enough Effexor not to care.

So I started tapering off. "Side Effexor's" side effects weren't nearly as bad tapering off from such a low dose -- after three days off, I had three days of whirlyhead. As opposed to weeks of it that I had experienced before and that others report. But then, yesterday, I got slammed with anxiety.

Anxiety doesn't always look like anxiety when it starts. Yesterday, it looked like "WOW THE CUBES ARE LOUD TODAY. I WILL GO OUT FOR LUNCH. I CAME BACK FROM LUNCH AND THE CUBES ARE STILL LOUD. I WILL WEAR HEADPHONES. I STILL CAN'T CONCENTRATE. I WILL GO HOME." It also looked like "I have to read this sentence 50 more times because even though I understood it I feel like I didn't understand it." And it looked like "I have to scroll up and down this webpage 50 more times to get the itchy feeling of not having scrolled correctly out of my fingertips."

I can't be sure the lack of Effexor is what triggered my anxiety. It could just be stress, or something else I'm not paying attention to like having been burdened with eating (gluten-free) birthday cake and then sent home with the birthday cake so it's available to eat for breakfast. What I do know is that as I tapered off the Effexor, my fingertips got itchier, my reading got more stilted, and I got stickier as a whole -- sticking to the bed, sticking to the door, stuck in a mindset, etc.

Then today I stuck to everything. The bed, the sink, the bed, the door, the bed, the sink. I put myself together in increments, with coaching: now go to the bathroom; now wash your face; don't think about what is and isn't in the drawer to wear until you get to the drawer. Sit in the bed. Count your breaths to 50. Count again. Now tell me what you are feeling. Tell me without analyzing. What are the first words you come up with? Now open your eyes and write what you just said. Don't curl up -- don't curl up! Maybe it's not time to go off Effexor yet: take a tiny bit to start. Take half an Ativan to get through now, to leave.

At the sink, ready to go, washing a few dishes so I could come home to a clean sink, my cat kept rubbing herself on my ankles, which made me sob. I kept telling her to stop. Stop! Finally I ran away and jumped on the bed so she couldn't rub herself on me anymore. And realized that it wasn't the cat, that it was leaving I was crying about, so I should take another moment, another moment, another moment to self-manage.

What I hate most about being this way, what makes me want to puke, is that you feel the need to defend yourself against judgment over how you are, but your defense ends up being glorification of your illness. The pukiest thing about illness is the glorification. I'm ill, therefore X, Y & Z awesome things -- immunity from judgment, carte blanche behavior, dramatic everyday events, romanticism. I do not want to be this way. No matter how much they say on greeting cards and billboards you shouldn't, I want to be normal. I don't want to have these excuses -- have to use them, have them to use. I want to be at work, not standing on my bed, not not going to work because I'm standing on my bed because it's a legitimate excuse that I find completely illegitimate.

I've tried to bring all of these feelings together to a point of rest. Accept what you are; be what you are; do what you do and don't feel bad about it but don't indulge it either. It hasn't worked. All I end up feeling is guilt.

This is the first day like this I've had in several weeks, despite all the sleep -- the first day sticking to my apartment. I will go back on the Effexor until we figure out another way to make me operational. I don't think I ever hate myself more than in these moments. What a romantic statement.

Monday, March 21, 2011

The Challenges of Having Neurontin as a Personal Hero

Last week I said I thought I was starting the typical week-long pre-period flare. But when I took more Neurontin, the flare went away. Was the flare pre-period or post-sex?

I kept taking Neurontin this whole week whenever I started to flare during the day in addition to a dose before bed, and it kept the flares at bay. It's been awesome pain-wise. Energy-wise? Stay-conscious-wise? Be-able-to-get-behind-the-wheel-legally-wise? A little sketchier.

Today I took two doses (300mg) during the day, about five hours apart, and when I got to the end of the day I felt like I was in a dream. I also felt like I could fall asleep instantly if I closed my eyes -- and that maybe my body would impose sleep on me if I didn't give in. So at the last meeting I grabbed a cappuccino, and now I am both wired and asleep.

It's okay -- I know I will be asleep by 10:00 even with the caffeine. Because ---- Neurontin.

I love the Neurontin. It makes my pain go blank -- like erasing red crayon from white paper. As I wrote in a previous blog post (maybe), sometimes I've felt like my pain is the one thing that keeps me in this universe, that holds me in intersection with it. I don't know if that sentiment is too abstract to relate here, but anyway, with the Neurontin, I feel like I step back into this universe wholly. I can sense with all my body again instead of just my vulva.

On the other hand, I just can't take the Neurontin at this frequency. My vulva feels awesome, but even after coffee and yerba mate and a cappuccino, I am loopy. I thought I'd snap out of it, but I still haven't. Still haven't. Still haven't. Still awake, though.

I think what happens is that the Neurontin has a cumulative effect on my, let's say, wakefulness. So maybe the whole nervous system, but what I notice most is that if I take multiple doses for several days, I'm sleepier and sleepier during the day, to the point of today's delirium. I went off the Neurontin a couple days last week to see if it was the reason why I was so sleepy, and I woke up. This weekend, I took three over the course of Saturday, and though I may have been more tired than usual, I did not get helium for a brain until today, after multiple days at multiple doses.

So I'll have to put up with the pain some of the time if I want to stay functional. I've conceded on the caffeine thing -- if I find a med combo that works but that requires the balance of a little caffeine, I'm cool. If I can't balance the med combo regardless of caffeine intake, I have to back off on the dose -- in this case, the Neurontin, and accept sometimes-pain.

The good thing is that the week before my period (which will arrive tomorrow, please?) is the worst week of my month. I shouldn't need this much Neurontin at other times, and once I get a cushion for work (haha, how long have I been meaning to order one? Six months), I'll have even more protection.

As an aside, I know coffee and tea are often bad for vulvodynia. In my case, coffee doesn't really do much. It may make me burn a little more once in a while, but today, on the Neurontin, I didn't notice at all. If anything, it's worst for my stomach (blech!) (and breath -- blech!!).

For me, TEA is my ENEMY. I've searched for a caffeinated tea that doesn't bother me, but I don't think there's one out there. Even yerba mate doesn't leave me alone. Tea gives me pain in my lower abdomen, makes me bloat, and often makes my urethra and/or clit feel like they are harboring a marble-sized ball of super-elevated nerves.

So I'm sticking with coffee. I usually drink only a half-cup anyway, and it's a compromise that allows me to feel better physically and keep up with (and awake for) my life.

Here's a song for you to sing along to, one of my favorites to belt out to my cat:

Monday, March 14, 2011

Calisthenics, Fishtanks, and Pu-Pu Avoidance

I think about this blog a lot (I think about you a lot, reader), but I'm not up to writing right now. It's that whole talking-about-your-vulva-is-depressing thing. When I was actually depressed about my vulva, it was great to write about how depressing my vulva was. Now that I've demoted the vulva to lesser offender and stripped it of some of its depressive power, I don't want to go writing a blog post and stirring up the cooch onus (huh huh huh).

I do want to say things, though. Like, I've figured out how to take Neurontin (300mg at a time) to ease my pain. If I take one every night, I will be in a pretty good place. If I make sure I take one right after sex and then take another one the next day if I start to flare (and again if I start to flare again, and continue with the nightly doses), I won't have a two-week-long post-sex flare.

Right now, the last week before my period, I am creeping into ugly burny stage, and I've taken two Neurontin today to quell it. It's worked, but Neurontin has a short half-life (fades quickly), and I've been sitting, and I'm in the kind of place where your underwear moving back and forth over your clit as you walk is enough to make you dance. I've always flared before my period. When my period hits, the flare subsides. I think hormonal flares are pretty common for vulvodynia, but I still think it's strange that my coo-coo would rather be bleeding than anticipating blood.

The thing about the Neurontin is, I had several days of pretty low pain, and now that I'm a little flarier I am remembering how much this SUCKS!!!!!!!!!!!!! This sucks, did you know?!?!? And it's not that I didn't appreciate the low pain. I would have moments of --- ahhhhhh?!?!? What's going on here?!?!? and then do a hallelujah. But the memory of pain is not the same as walking through Joann Fabrics thinking you might pee down your nylons because your urethra is an evil flower.

I still haven't sent that survey to that specialist. I just have to wrap it up, but like the blog, it's too much for me right now. And there are these questions on it about well-being, how does your pain inhibit your life, and of course I answered, it doesn't! It used to, but I'm over it! YOU ARE NOT OVER IT IF YOU HAVE TAKEN THREE MONTHS TO FILL OUT A SURVEY ABOUT IT. You are in a post-acceptance denial.

I want a fishtank. With creepy faceless things, because I have issues with fish dying after I killed thousands in my childhood. I also accidentally killed my three favorites, the longest livers (live-ers) -- Squish, Squash, and Squirt, orange guys with sword tails -- by knocking my hand into the heater dial. I'm still getting over it twenty years later. So if I get a fishtank, it will be home to the faceless only.

Funny how I accuse myself of denial and immediately write about fishtanks. I think I will keep that in there.

No catfish in the tank either. I still have one in my life, FY subtle I, and anyway, I killed one of those back in the day too.

Maybe someday I'll be up to blogging more frequently. For now, I'll just say that I'm working hard at learning to take care of myself in that way that everyone says you should take care of yourself even though they don't do it even if they're professional life-coach bullies. I'm in love with calisthenics because I have a great uncle who is 89 who does (or did until recently...we should ask) his army calisthenics each morning. A few years ago, he was at our house eager to eat chips, and to get them off the coffee table while holding his little plate, he knelt down on one knee, scooped some up, and stood back up. I am in love with that motion. I practice that motion for 55 years from now. And then I read that the longest-living World War I (US) veteran, Frank Buckles, did his calisthenics throughout his life too. So far I'm up to TWO pull-ups.

So that's me right now. Calisthenics, fishtanks, and pu-pu avoidance. Yay, a title for the post. Oh, the fishtank inhabitants also have to be slow-moving so my cat doesn't sense them and pour them onto the floor.