Monday, June 28, 2010

Creepy Nights

I've officially started having nightmares again... I think it's three nights in a row now. At least there has only been one each night so far. I can remember a time when it was every night, all night, and I'm hoping it won't come to that.

I was in one of the upstairs bedrooms of where I'm living now, and the layout was more or less accurate (not a good sign). I couldn't sleep, so I got up and was walking around the room. I started to get scared because the other bedroom (on the other side of the bathroom) was pitch black and I kept hearing creepy noises. Eventually I went in the bathroom to peer in the other room, and saw minotaurs and a werewolf with glowing red eyes, beckoning me. I ran back into our room, totally freaked out. The creatures followed me and stood in the bathroom, staring. I wanted my girlfriend to wake up and reassure me, but she was so asleep that shaking her didn't work.

In another, I was in the same upstairs, only our bedroom was huge- three or four times the size it really is- so that my lamp didn't even begin to reach the corners. Again, I had gotten up to go to the bathroom. I was extremely creeped out because I kept seeing twisted monsters and rotting dead things in the corners, all staring at me. I figured I was hallucinating, so I went into the bathroom (now the one from our college apartment) and started splashing water on my face. It didn't really help- I was still seeing creepy things twitching and moving around every time I passed a patch of darkness. So I hurried back to bed, with my eyelids trying to close the whole way. I sat up in bed and just waited, and turned on the overhead light. After awhile my girlfriend woke up and I talked to her for a minute. Then she got up and started moving around and put on some really creepy music. I asked her to turn it off because it was making me more freaked out, but she didn't seem to hear me. Then our other college roommate was there, talking about how awesome the music was (which is funny, because she hates creepy music ten times more than I do). Eventually they took it downstairs and I tried to go back to sleep, but I could still hear the music a little because the room suddenly had a balcony over the living room.

And then last night it was tornados. For some reason I've always had lots of tornado dreams. This time I was at my grandparents' house, only of course it was suddenly three stories instead of one and had sliding glass doors, because that makes sense, and there were stairs everywhere. I basically spent the entire dream trying to corral our two dogs into a safe downstairs bedroom as multiple tornados came within inches of various parts of the house without actually doing anything. The dogs were constantly getting away from me and ending up in the backyard, or next to windows with a tornado on the other side of them, or dancing circles around me as I got more and more exhausted trying to capture them. Or the room I was taking them would suddenly sprout glass doors or giant windows, and I would get really scared that it wasn't safe, and suddenly there would be three tornados outside coming closer. Meanwhile my grandparents and girlfriend were going on like we weren't all about to be torn to pieces, standing around chatting or making lunch, lol.

Thursday, June 24, 2010

Unfortunately Familiar

And the Xyrem Not Really Working Anymore Saga continues.

Four years ago I got diagnosed with Narcolepsy and put on Xyrem, and it fixed pretty much everything for me. It did what it's supposed to and knocked me out every night, and I got more and more awake as the dose was slowly raised. I felt like I got to experience life again for the first time in six years- colors were brighter, I could see in 3D again, my sense of taste was back. It seemed like a miracle, which it was really. And it continued to work for three years, with the occasional dose changes and eventually adding Remeron. But I guess my body is finally saying no. About a year ago I started a steady drop in energy level that resulted in serious life changes for me. And as that's been happening, once-familiar symptoms are putting in an appearance. My dreams are getting steadily more disturbing. I keep waking up in the night more and more and not being able to go back to sleep, despite feeling extremely drugged from the Xyrem. Random hallucinations have been punctuating my dreams; it was happening maybe a few times a year, and now it's multiple times a month. My mind's eye is getting much busier during the day, distracting me with full-fledged dreams when I'm trying to do something else, like form coherent sentences when talking to people. Meanwhile, my stomach is getting more annoyed with the Xyrem again- I've been nauseated and anxious in the mornings, and that used to just happen on higher doses of Xyrem.

Even so, I've been reluctant to get off of it. I know it's still working a little bit and honestly, I'm afraid. I remember what life was like the summer before I was diagnosed. In a lot of ways my living situation is vastly improved- I have really supportive people who I'm living with who want to help me and respect my desire to be distant from doctors. No one is expecting me to be the next amazing careerperson. I'm sleeping next to someone else now, which also helps- waking up in pure terror with no one there was horrible. But on the other hand, I know what my brain can throw at me, and I'm not sure I'm ready. But maybe I never will be, and at least my blog will get more interesting, lol.

So I've decided it's time to get off of Xyrem. My girlfriend's mom helped me out by finding a sleep neurologist in the area and I've got an appointment for August. She and my girlfriend are planning on coming with me as moral support and backup. So we'll see how it goes. At least, once I'm off of it, I'll be quite a bit less worried about paying for it. So in a way, the timing is nice. And my stomach will be doing a victory dance, I'm sure. We'll see how this plays out, and if I have to get on something else. I'm hoping to at least test life without drugs and see if I can do it. It's time to give my stomach a break.

Sunday, June 13, 2010

Accidental Buddhist

It might have been coming to terms with Narcolepsy that did it, or maybe moving to the country. It might have been partly a result of living in Tokyo for ten months during a time when I was feeling very vulnerable and looking for a new direction. It might have been various books I read out of my girlfriend's library when I was trying to figure out how to deal with life away from my parents making me plan everything. But one thing is certain: it snuck up on me.

I started out stressed out about the future. Like, really stressed out-- how was I going to make it in the real world, being so tired I can't see straight? How was I going to afford health insurance and my medication? Was I ever going to move out of my parents' house? During that time, part of me was annoyed at how stressed out I was. I would yell at my dog and feel terrible, but if I didn't yell it got pent up. I was also an anxious mess in a lot of ways, because there were no easy answers to my questions. I was more or less trapped. I didn't know what to do with myself. Then I found that my parents leaving for two weeks allowed me to relax a bit, and it felt right. I tried to carry it over to when they returned, but it was impossible. The tv was always blaring; someone was always complaining about work. The city outside was so loud that being in our tiny yard wasn't restful. Everything was too fast-paced for me and so even running errands was something that was supposed to be rushed. Only then, I would be back home again, still with nowhere to escape the tension.

I did find one place I could go to relax: I would take my dog to the park. The main areas were usually crowded and I'd end up having to talk to people, but there was a Japanese garden that had quiet benches where my dog and I could sit and soak up the trees and grass and sunshine. It was heavenly, but I had to drive there, so by the time we got home again I was a tense mess. There was nowhere like that within walking distance of my house.

Then I had an incredibly huge stroke of luck and found out that my best friend was, in fact, in love with me, too. So I left that place and came here, to the middle of nowhere, to live with my girlfriend and her parents. This place is not perfect, of course. It gets very cold here and there are stairs between me and the dogs and the outside world. But it was this place that taught me how to be still and quiet and relaxed. Here, I can step outside and come across no one who I don't know well- no pressure. The background noise is the sound of birds, ground squirrels, and horses, plus very distant traffic. Here you can really listen. It's the perfect place for meditating- though it took me awhile to figure out that's what I was doing.

Living here, life is determined by what the animals need- our dogs, cats, horses and donkey have various chores attached to them that happen throughout the day. Animals live firmly in the present and it rubs off on you as you care for them. It certainly rubbed off on me. So I ended up not planning my day out. Instead, I wait and see how I feel and what needs to be done, and then I do what feels right. I went from the "tomorrow at 2 PM" mentality to the "maybe we'll do it on Thursday" mentality, if that makes sense. And as I became more firmly rooted in the present, the past and future began to bother me less. I started to recognize their importance without attaching so much fear to them. I started to think calmly about what needed to happen that specific day instead of freaking out about how I'm going to be feeling in ten years. I'm still slowly thinking over what I'm going to do about health insurance when I'm no longer covered by my parents, but it's far enough away that I'm not afraid when I think about it- I'm just calm and thoughtful and able to think clearly.

And this is how I ended up accidentally a Buddhist.

Wednesday, June 2, 2010

Japanese Deli Angel Wings Movie Date

Last night I had a pretty vivid but mixed-up dream. It started out that I was in some kind of deli that was part of a college and I was sitting at a table by myself, waiting for my mom to come back with her food (I wasn't eating there). As I was sitting there, I was observing the other people interacting at the other tables. It was like a scene from my hometown because of the diversity- I was one of the only white people there. One little girl saw me eavesdropping and grinned at me, and I grinned back. Then there was a lot of bustle right next to my table- several families were passing it to get to the counter- and I overheard them speaking in Japanese even though most of them weren't Japanese. When one of them bumped me on accident I said "excuse me" to them in polite Japanese without thinking. One of the women started asking me something and we had a brief conversation about how I could speak it. After that, they moved away, and I spotted someone I knew in elementary school who I hadn't spoken to in a long time, so I went over and sat down at her table.

She told me at length about what she was doing on her computer and complained about how her professors kept trying to get her to turn it into a career when she was pretty sure she didn't want to do whatever it was for a living, and we had a good heart-to-heart about life. After that, I think she took me to a lab to show me what she was working on, and she turned into a different friend I had in high school, and her project turned out to be this incredibly cool angel costume that had mechanical wings you could actually use. It was really really cool. It had chain mail and armor that you used to secure it to yourself. After that I think we went to see a movie (now with the elementary friend again), and the movie got a little jumbled up with the rest of the dream. Who I was kept switching around and sometimes I was in it and sometimes commenting on it. The movie was about a girl (A) falling in love with another girl (B). When A tells B, B freaks out and runs away and gets engaged to a guy who happens to ask her at that exact time, and it ends with A hoping B will change her mind. The me who was watching it was pretty disappointed in the ending because it seemed like it was going to work out and be happy and then it turned depressing. At the same time, though, I was happy about the way the movie portrayed A, as a completely normal girl who happened to not be straight.

That was about when I woke up, feeling confused and tired and wondering what on earth it all means.