Last night I went on a trip to Canada with the same roommate from the last entry and a couple of other people our age who we didn't really know- I guess it was an organized group thing. The flight was pretty long, but we were only there for a weekend or so. We were staying at this house where I could make my own food (definitely a requirement in real life travel for me) next to a lake. I remember swimming a lot, and that I was trying to film stuff but waves kept crashing over my head. Apparently the camera was waterproof, as I wasn't worried about that, but it did interrupt my attempts to interview people, lol. The scenery was beautiful, with snowcapped mountains surrounding the inexplicably warm lake. I was sad to leave, but also glad, because I was running out of food. I was hungry on the flight home because I didn't have enough crackers left- also something I stress out about during travel.
Today has been interesting. On the one hand, I'm definitely still sick- my sinuses are still gunky, my throat is sore and I'm still tired. But on the other, I think my latest increase in Xyrem has finally started to settle in. I was very awake- way more than before, and I have this vague sense of actually existing in my surroundings. The latter is a difficult thing to explain, and if you haven't experienced it for yourself you may not understand what I'm talking about.
Usually I have a sense of my surroundings- hazier than most peoples' perception, and occasionally less accurate. Then I have a sense of me, or rather my mental self, which seems to be floating in my surroundings and doesn't have a location that I can physically pin down. Then, apart from that, I have a sense of my physical body which is similarly disconnected from my sense of me and my sense of my surroundings and that I also can't exactly tell where it is. All three senses have a vague location, and I mostly use my conscious brain to make it more accurate- like I know consciously that I'm sitting in one corner of my bedroom right now, so it's not like I don't know exactly where I'm located, it's just that it's a thought. I don't actually feel it. My shoulder hurts, and I know vaguely where my shoulder is, but not exactly without looking and then I'm still sometimes a little off- like if I reach up to touch my shoulder while I'm looking at it, when my eyes estimate I'm going to feel my hand isn't always when I do actually. Like my eyes can think I'm touching something when I'm not, and my hands can feel something but it's hard to see if I'm touching it yet. I'm not sure if that makes much sense, but then again it is pretty bizarre, so maybe that's okay.
So occasionally when I raise my dose of Xyrem, for the first few days that it settles out I can actually physically feel grounded in my surroundings. It's very weird to me because I'm so used to not having that sensation, and the first time it ever happened in my waking life it really freaked me out. It's so much easier to do everything, like to avoid tripping on things all the time, or to be able to drive without being nervous because you do know exactly where your car is in the environment. I got that feeling this morning when I was sitting on the front porch watching my dog while we both enjoyed being outside. It's such a strong feeling of hereness after years of feeling disconnected that it's rather striking.
I wish it wasn't the case, but it never lasts more than a couple of days, if even that long. Every time I raise my dose I go back downhill a little after the initial settling out. Life still ends up an improvement from the dose before, but still not the best I can feel.
Interestingly, in my dreams I do have the sense of hereness that I don't in real life. I think that's part of why I enjoy the good ones so much, and part of why all of my dreams seemed so much more real than my waking life pre-medication.
On a mostly unrelated note, I think my dreams lately are trying to tell me to go swimming. Hmmm. Maybe I should.
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Did you know that people without Narcolepsy don't dream like we do? Rarely the detail, almost never can they remember, usually not even in color...
ReplyDeleteI feel bad for them ;-)
As a PWN who rarely remembers his dreams, I feel bad for me (sort of). Seriously, though, I loved your description of what it feels like to have narcolepsy. That vague sense of disconnect at three levels definitely made sense to me. I hope that the full dosage of Xyrem does allow you to keep that "awareness" for more than a few days. As for the swimming, you might want to wait until your sinuses clear...
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