Okay, so I know there's some pretty weird stuff I've been blogging about lately, related to narcolepsy and not. But this latest suspicion of mine really takes the (GF and soy-free) cake.
So we all grew up knowing two things about ice cream: it's delicious, and it's bad for you. I mean, frozen cream with massive amounts of sugar in it seems to be, according to common sense, bad for you, right? I mean, it's basically sugary fat. Can you get more unhealthy, really? Or so I thought...
For four years or so I was quite underweight, thanks to Xyrem and a complete lack of interest in cooking (a killer when you're on a special diet). My lowest weight was 92 lbs, and though I am a small person, I was around 20 lbs too light. I could feel it. My bones were sticking out and I was cold all the time because I had no fat whatsoever. I felt physically weak. I had a hard time finding small enough bras for awhile, and I was wearing size 0 jeans (which were a little loose). Many people say they'd kill for that, but I felt horrible. I felt so unhealthy. I had no energy, which, when you already have narcolepsy to contend with, basically made life impossible. I felt like one of those skeletons that show up all the time in my dreams, crumpled up on the couch.
Finally I had a falling out with my neurologist because I was sick of being a stick figure, and the Xyrem had mostly stopped getting me sleep anyway. So I stopped taking it and slowly started to recover the weight I needed. I immediately felt better, learned how to cook (what a difference an appetite makes), and started eating a ton of really healthy, homemade food every day. I'm sure the story would have been different if I'd started eating junk food or even GF frozen dinners like I had before, but on all the veggies I gained weight back slowly and flesh started showing up in areas where it was needed. A year later, you couldn't see my hip bones anymore and I actually had curves again. Soon after, I leveled out at around 107 lbs and felt so much healthier and stronger. Even so, I felt cold a lot of the time and like I needed a little bit more meat on my bones. I mean, winter in Iowa really kind of requires extra padding.
Around that time I started noticing how often I was craving cheese. I've always really liked cheese, but I had started putting it on everything. My fiance didn't mind; he loves cheese too, the more the better. Since our diet contains mostly vegetables, fruit and occasionally fish or chicken, I kind of figured I was craving dairy since it's got a lot of protein in it. I didn't worry too much about it and kept piling on the cheese. And then I started craving cheese and ice cream. I hadn't had ice cream in over a year; I tend to avoid sugar products because once you stop eating them, small amounts make you anxious and kind of crazy. But this craving was pretty over the top. So I got a little carton of Haagen-Dazs to see how it went. I like that brand because it's pure ice cream, none of this modified-food-starch-whatever-chemicals nonsense, and you can tell because it tastes insanely good, like real food. Plus a lot of the flavors are gluten-free, and actually gluten-free- no contamination at all. The same goes for soy. Some flavors have it, but only where necessary, and as long as I read to label I haven't had a problem.
So I thought, okay, it's just for a treat this week. But the craving kept up, and suddenly I was gaining weight again. I went from 107 to 113 in a week and the only difference was the ice cream. Alarmed, I stopped buying it. I've heard it's easy to get overweight if you have narcolepsy, so I'm wary. After a week without any in the freezer, I dropped back down to 107, and realized I was suddenly cold all the time again. Okay... was my body telling me that ice cream is good for it? That it needed ice cream to round out my healthy diet? o.O To have enough body heat?
So this turns my idea of health food upside own. I find myself thinking, maybe it isn't that some foods are always bad or always good for you. Maybe being healthy is about paying attention to what your particular body needs, watching how you feel. Maybe it isn't all so clear-cut. The rest of life isn't, so why would food be? Our bodies are amazing, beautifully constructed, and complex. Maybe you can't just rely on other people's advice, even that of the experts. Maybe you have to listen. The more I listen to my body, the more interesting things I discover.
I don't know what's weirder- my body legitimately needing ice cream to maintain the proper weight or the irony of something cold ultimately making me warmer. Now I keep some in the freezer all the time and pay attention to my intuition. If my body says it wants ice cream, I eat some and feel better. If I feel I don't need it then I avoid it. Now that the weather is slowly warming up I've been needing it less. I don't have to think it through. I just have to pay attention.
Showing posts with label xyrem. Show all posts
Showing posts with label xyrem. Show all posts
Friday, March 18, 2011
Monday, December 20, 2010
What's This?? A Social Life or Something?
I hung out with/talked to two non-family people this weekend. Human people! o.O Woah... This may seem to some like a low-key, boring weekend if you're used to partying, or are in college. The thing is, ever since I found out what was making me sick and started having to cope with treatment and my special needs (as opposed to simply shoving through pretending to be normal), I've become more and more of a recluse. In high school I was constantly sick to my stomach and automatic-behavioring my way through everything including hanging out with my friends. Then my first year of college I found out about Celiac's. Explaining my special diet to everyone around me sucked. When you tell people who haven't heard of it before and explain the key points to them, they inevitably say one of about five completely moronic things:
1. Oh my gosh, how terrible!! D: Your life is so hard!! (Like I need to hear that from some schmuck who doesn't know me or my life at all...)
2. Did you say you can't eat meat? (Having misheard "wheat" XD)
3. I can't believe you can actually cut all that out of your diet!! I could never do that!!! (Trust me, if gluten caused you physical pain, you wouldn't have a hard time letting it go.)
4. If you eat a cookie, that means you could die??? (XD It's not an allergy like those people in the news who are killed by traces of peanuts.)
5. Oh! I know what you mean!! I have a minor allergy to -insert random food item here- and can only eat five cups of it before my scalp itches minorly!! I usually just ignore it though. :D (Oh yeah- obviously you know what a life-changing diet is like. XD)
After a couple of years of this, I just plain got tired of explaining it. So I just stopped telling people and stuck to friends who already knew and had lived with me through the changes. It didn't help that by that time, I also knew I had Narcolepsy and was on Xyrem, which has its own life changes that go with it. For those years I had to go to bed at a consistent time every night (otherwise my stomach and alertness were completely messed up the next day and sometimes the day after as well). This meant no surprise staying up, which is really tough on someone college-aged when most serious talking and socializing happens at night. It also caused generalized anxiety in me at the higher dose I was on, which, believe me, doesn't help in social situations. Those combined with culture shock after returning to America from Japan kept me completely isolated for my last year of college.
Luckily, returning to my hometown after graduation meant I had old friends who required no explaining nearby. A lower dose of Xyrem also helped me gain somewhat of a social life back, plus getting on a much-needed antidepressant for the first time in my life. I still kept to myself at art classes and in public and avoided explaining either illness as much as I could. Slowly I developed a better strategy than launching into a detailed explanation at a moment's provocation or avoiding the subject completely- instead I compromised by explaining one symptom at a time on a need-to-know basis. For example, when invited to eat with someone I would make it clear I needed to be the one to choose the restaurant or food choice. When falling asleep in class I would explain to other students that I was tired and needed a nap. So in this way as people came to know me, they came to know my needs and quirks, and slowly understood I wasn't normal.
And so nowadays I find it much easier to meet new people and talk to them. It also helps to have my girlfriend's support- I feel more protected, less exposed, in social situations. This weekend we had one of her coworkers over for lunch (we cooked, so there wasn't a problem there) and chatted for about four hours. It was great. We all had pretty good funny stories to share, and I even got to nap for half an hour in the middle without having to kick her out first. :) We also had a long, in-depth conversation on the phone with a chaplain who might officiate our wedding this summer. That was exhausting for me, because he wanted to get to know us and make sure that we really are ready to be married, and so asked pretty in-depth questions. He was really nice, though, and didn't pry for details about my illnesses. I know two new people (with one over the phone rather than in person XD) aren't most people's idea of a social life, but it was a pretty big leap for us since we just moved here and haven't had much opportunity to make local friends. So that is exciting. Maybe by the summer we'll have three friends or something, lol. 8D
1. Oh my gosh, how terrible!! D: Your life is so hard!! (Like I need to hear that from some schmuck who doesn't know me or my life at all...)
2. Did you say you can't eat meat? (Having misheard "wheat" XD)
3. I can't believe you can actually cut all that out of your diet!! I could never do that!!! (Trust me, if gluten caused you physical pain, you wouldn't have a hard time letting it go.)
4. If you eat a cookie, that means you could die??? (XD It's not an allergy like those people in the news who are killed by traces of peanuts.)
5. Oh! I know what you mean!! I have a minor allergy to -insert random food item here- and can only eat five cups of it before my scalp itches minorly!! I usually just ignore it though. :D (Oh yeah- obviously you know what a life-changing diet is like. XD)
After a couple of years of this, I just plain got tired of explaining it. So I just stopped telling people and stuck to friends who already knew and had lived with me through the changes. It didn't help that by that time, I also knew I had Narcolepsy and was on Xyrem, which has its own life changes that go with it. For those years I had to go to bed at a consistent time every night (otherwise my stomach and alertness were completely messed up the next day and sometimes the day after as well). This meant no surprise staying up, which is really tough on someone college-aged when most serious talking and socializing happens at night. It also caused generalized anxiety in me at the higher dose I was on, which, believe me, doesn't help in social situations. Those combined with culture shock after returning to America from Japan kept me completely isolated for my last year of college.
Luckily, returning to my hometown after graduation meant I had old friends who required no explaining nearby. A lower dose of Xyrem also helped me gain somewhat of a social life back, plus getting on a much-needed antidepressant for the first time in my life. I still kept to myself at art classes and in public and avoided explaining either illness as much as I could. Slowly I developed a better strategy than launching into a detailed explanation at a moment's provocation or avoiding the subject completely- instead I compromised by explaining one symptom at a time on a need-to-know basis. For example, when invited to eat with someone I would make it clear I needed to be the one to choose the restaurant or food choice. When falling asleep in class I would explain to other students that I was tired and needed a nap. So in this way as people came to know me, they came to know my needs and quirks, and slowly understood I wasn't normal.
And so nowadays I find it much easier to meet new people and talk to them. It also helps to have my girlfriend's support- I feel more protected, less exposed, in social situations. This weekend we had one of her coworkers over for lunch (we cooked, so there wasn't a problem there) and chatted for about four hours. It was great. We all had pretty good funny stories to share, and I even got to nap for half an hour in the middle without having to kick her out first. :) We also had a long, in-depth conversation on the phone with a chaplain who might officiate our wedding this summer. That was exhausting for me, because he wanted to get to know us and make sure that we really are ready to be married, and so asked pretty in-depth questions. He was really nice, though, and didn't pry for details about my illnesses. I know two new people (with one over the phone rather than in person XD) aren't most people's idea of a social life, but it was a pretty big leap for us since we just moved here and haven't had much opportunity to make local friends. So that is exciting. Maybe by the summer we'll have three friends or something, lol. 8D
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.
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.
Thursday, January 21, 2010
No More Nuvigil
I had planned to keep taking a half pill of Nuvigil every morning until I was running out of samples, and then report to my doctor. Well, that's been my plan three times now, and I keep running into stomach problems and stopping it after a few days. Last time it was nausea that got me. To be fair, it might have gone away after awhile. I know the headaches and the drugged wonkiness would have, so it wasn't those that I was worried about. It was just that after three days I had absolutey no appetite and literally couldn't stomach eating anything.
This time I wasn't nauseated, but the lack of appetite was still there. It came on faster than last time, and I've had stomach cramps, especially at night. Besides that, yesterday was pretty crazy- I was either so awake I was restless and antsy or so sleepy I couldn't keep my eyes open, and the two states would transition pretty suddenly. I'm guessing that would probably have settled out over time though. The past two nights have been similarly nuts- I'd find myself suddenly awake in some random part of the night, then get pulled straight into vivid dreams again, maybe sleep soundly for awhile and then be wide awake for a minute or two again. Which also may have settled out eventually. But it's the lack of appetite that convinced me that Nuvigil isn't a good idea for my stomach. I spent over a year with no appetite on a higher dose of Xyrem and I refuse to deal with that long term again. I have no urge to be back under a hundred pounds because I hate all food and have to force myself to eat. Not healthy.
I'm not sure what my doctor is going to say about this. He keeps suggesting meds to help keep me awake, which of course I need, but every time something gives me a side effect and I stop taking it he gets a little frustrated. He wants me to try things for long enough to make sure the side effect won't go away, or that it won't be worth dealing with to have the benefits of the medication. Which is perfectly reasonable. But I'm kind of through putting the experiment ahead of my present well-being, if that makes sense. In other words, I suppose I would rather feel okay now than go through a lot of feeling crappy in order to feel slightly better- or maybe just the same or worse- later. Who knows, maybe it's just a phase. Or maybe it's my own way of growing up.
This time I wasn't nauseated, but the lack of appetite was still there. It came on faster than last time, and I've had stomach cramps, especially at night. Besides that, yesterday was pretty crazy- I was either so awake I was restless and antsy or so sleepy I couldn't keep my eyes open, and the two states would transition pretty suddenly. I'm guessing that would probably have settled out over time though. The past two nights have been similarly nuts- I'd find myself suddenly awake in some random part of the night, then get pulled straight into vivid dreams again, maybe sleep soundly for awhile and then be wide awake for a minute or two again. Which also may have settled out eventually. But it's the lack of appetite that convinced me that Nuvigil isn't a good idea for my stomach. I spent over a year with no appetite on a higher dose of Xyrem and I refuse to deal with that long term again. I have no urge to be back under a hundred pounds because I hate all food and have to force myself to eat. Not healthy.
I'm not sure what my doctor is going to say about this. He keeps suggesting meds to help keep me awake, which of course I need, but every time something gives me a side effect and I stop taking it he gets a little frustrated. He wants me to try things for long enough to make sure the side effect won't go away, or that it won't be worth dealing with to have the benefits of the medication. Which is perfectly reasonable. But I'm kind of through putting the experiment ahead of my present well-being, if that makes sense. In other words, I suppose I would rather feel okay now than go through a lot of feeling crappy in order to feel slightly better- or maybe just the same or worse- later. Who knows, maybe it's just a phase. Or maybe it's my own way of growing up.
Sunday, December 27, 2009
Who the Heck Knows
So tomorrow will be interesting. I'm going back to my neurologist after a couple of months of lack of communication. I'm not sure that he'll be happy to hear about how I'm doing at this point. Mainly I have even less energy than the last time I talked to him, but over the past month I've also been getting steadily more anxious and even a little depressed again. This makes me annoyed (and will probably also annoy my doctor) because I haven't changed anything. Okay, so I tried raising the Xyrem by the smallest possible increment briefly about a month ago when I was desperate for a couple of nights of sleep, but it didn't work- the side effects came back and I lowered it right back down to where it's been for probably the last six months. My Remeron is the same. I never experimented with Ritalin again (like he wanted me to) because it made me depressed that one day I tried it and I don't mess around with depression. My life has improved drastically since the last time I saw him now that I'm not stressed out trying to take four hour classes all the time, plus of course no longer being single and lonely helps. But I'm still more exhausted than ever, dreaming more than I had since I started Xyrem and on top of that have mood issues coming back for no apparent reason. Story of my life.
I'm not sure what he'll want my to do this time, if anything, because I've tried most things at this point. I suppose I could try harder at the stimulants. We'll see. It's just frustrating to be the bearer of bad news.
I'm not sure what he'll want my to do this time, if anything, because I've tried most things at this point. I suppose I could try harder at the stimulants. We'll see. It's just frustrating to be the bearer of bad news.
Tuesday, September 1, 2009
More Like Me
Well, it's been about three weeks since I lowered my dose down slightly. As expected it's been quite the rollercoaster, and I've had many lows the past few weeks that left me feeling really discouraged. I've had the occasional day where I was glued to the couch because I was too tired and spacey to do anything, and some days where I was anxious. Plus several strings of nights of really bad sleep- full of nightmares or just lots of tossing and turning. But the last few days I've actually been feeling pretty good, for me at least. The high dose side effects are gone- I'm not anxious and my appetite is back in full force- and I've actually had the energy required to accomplish things when I want to. But I think the best thing about how I'm feelng right now is that I feel much more like myself again. On the higher dose I was stiff, awkward, nervous. And I had more energy but had trouble relaxing or even enjoying things without being too stressed out. Then during my lows the past few weeks I've been too tired to do anything and unable to focus. The past few days have felt so good because I can relax when I want to and focus if I need to, and I feel much more in control of my life again.
It's funny because the higher dose had me more mentally grounded in reality- I spent more brain power on my senses and practical thinking and less on imagining things and making stuff up. But I really think my natural state is when I'm off on some crazy mental tangent, imagining up creatures and worlds or bending this one around for fun. I think I feel more like myself again because my mind is back at its occasional vivid wandering, and my imagination has been much more active. And I'm glad, because my imagination is by far my favorite trait- plus I think that's what is going to get me a job someday, if anything can.
But I'm not going to worry about that for now because I'm in the middle of a lot of really fun projects for classes. And I'm somehow managing to get it all done and to do a good job, and even enjoy it. So I'm definitely happy about where I am right now. Here's to hoping the feeling stays around.
It's funny because the higher dose had me more mentally grounded in reality- I spent more brain power on my senses and practical thinking and less on imagining things and making stuff up. But I really think my natural state is when I'm off on some crazy mental tangent, imagining up creatures and worlds or bending this one around for fun. I think I feel more like myself again because my mind is back at its occasional vivid wandering, and my imagination has been much more active. And I'm glad, because my imagination is by far my favorite trait- plus I think that's what is going to get me a job someday, if anything can.
But I'm not going to worry about that for now because I'm in the middle of a lot of really fun projects for classes. And I'm somehow managing to get it all done and to do a good job, and even enjoy it. So I'm definitely happy about where I am right now. Here's to hoping the feeling stays around.
Thursday, August 13, 2009
Knocked Out
Apparently our next door neighbors' air conditioner was malfunctioning very loudly last night, right outside my window. It kept my parents (two floors up) awake for most of the night. Luckily for me, I had my nightly date-rape drug to knock me out. Seriously, I didn't hear a damn thing. I didn't even know anything had happened until my dad asked me about it this afternoon. If I did hear it between doses, which I really might have, I don't have any memory of it at all. Similar things have happened to me before. I've slept through my mom setting off the burglar alarm on accident by getting home late, police being called and coming to our house to stop people from trespassing on our property (and my room is right across from the front door, lol), lots of parental noise including opening and shutting of our loud garage door (my room also shares a wall with the garage), delivery of large furniture which was apparently carried up multiple floors to loud banging and scraping that I didn't even hear, and last but not least a category 3 hurricane.
On the one hand I think the fact that I sleep (read: am knocked out) through just about everything is hilarious. I also like it as a welcome change from my non-medicated REM!Awake!REM! cycle from before, at which anything could and would wake me up and/or trigger paralyzed hallucinating, etc. On the other hand it kind of scares me, because I seriously wonder if I would even hear the fire alarm if it went off. At least I'm right next to an exit? It's also scary because people can come right into my room and I don't have a clue- my dad has borrowed my car keys before without me even turning over. You know it's messed up when you can hallucinate people in your bedroom, but if anyone actually comes in then you don't even know.
As eerie as it is sometimes, I've found being knocked out to be an advantage more often than not. I need all the sleep I can get after all. So keep it up, loud obnoxious noises of the world. I WIN.
On the one hand I think the fact that I sleep (read: am knocked out) through just about everything is hilarious. I also like it as a welcome change from my non-medicated REM!Awake!REM! cycle from before, at which anything could and would wake me up and/or trigger paralyzed hallucinating, etc. On the other hand it kind of scares me, because I seriously wonder if I would even hear the fire alarm if it went off. At least I'm right next to an exit? It's also scary because people can come right into my room and I don't have a clue- my dad has borrowed my car keys before without me even turning over. You know it's messed up when you can hallucinate people in your bedroom, but if anyone actually comes in then you don't even know.
As eerie as it is sometimes, I've found being knocked out to be an advantage more often than not. I need all the sleep I can get after all. So keep it up, loud obnoxious noises of the world. I WIN.
Monday, August 10, 2009
Dose-Changing Blues
My doctor raised my Xyrem dose almost a month ago because we were hoping I would gain a little more energy and wakefulness. Since then I've been dealing with a lot of bouncing around between extremes with the occasional nightmares and hallucinations on one side and anxiety, nausea and awakeness on the other. I finally feel like it's settled out this past week, but in addition to being more awake I'm back to my old unpleasant side effects of nausea, lack of appetite and anxiety. I decided over the weekend when I was really anxious that I was going to call my doctor today, but then yesterday I felt a lot better and was vascillating.
This morning I woke up really nauseated and anxious and decided to just call and see what my doctor wants me to do. I figured he would raise my Remeron or lower my Xyrem, and he chose the latter. I think it's the right thing to do but I have to admit that I'm a little annoyed. I've spent the last month dealing with extra junk because of the raised dose and part of me feels like everything I went through was in vain if we're just going to change it straight back. But I know that it had to happen this way because there's no way to know how I'm going to do on a dose without trying it, and sometimes it just doesn't work out.
Another reason I'm miffed is that now I get to deal with the dose-changing extra junk again as a lower it. I could technically wait a few days, but I'm tired of being anxious so I'm just going to go ahead with it tonight. Nothing like medication-induced anxiety to get the ball rolling, so to speak.
I'm also kind of relieved, to be honest. I don't want to be on the highest Xyrem dose, particularly. I do worry about its effect on my digestive system, which was more than dysfunctional before I started dumping salt in it three times a night. Also, I can't quite shake the feeling that I was doing better energy-wise before I raised it in the first place. It's difficult to know for sure about these things when your memory is crap and your brain is a little mushy on its good days, so I could be making this up, but I do wonder. And apparently I will find out in the next couple of weeks. If I can remember to wonder about it, that is. Haha.
When I called my doctor's office today to leave a message I forgot my message halfway through reciting it to the secretary, which was hilarious. I apologized and suggested that maybe they were used to that at a neurologist's office, to which she replied that they get that a lot. At the very least this stuff does give me some pretty good stories.
This morning I woke up really nauseated and anxious and decided to just call and see what my doctor wants me to do. I figured he would raise my Remeron or lower my Xyrem, and he chose the latter. I think it's the right thing to do but I have to admit that I'm a little annoyed. I've spent the last month dealing with extra junk because of the raised dose and part of me feels like everything I went through was in vain if we're just going to change it straight back. But I know that it had to happen this way because there's no way to know how I'm going to do on a dose without trying it, and sometimes it just doesn't work out.
Another reason I'm miffed is that now I get to deal with the dose-changing extra junk again as a lower it. I could technically wait a few days, but I'm tired of being anxious so I'm just going to go ahead with it tonight. Nothing like medication-induced anxiety to get the ball rolling, so to speak.
I'm also kind of relieved, to be honest. I don't want to be on the highest Xyrem dose, particularly. I do worry about its effect on my digestive system, which was more than dysfunctional before I started dumping salt in it three times a night. Also, I can't quite shake the feeling that I was doing better energy-wise before I raised it in the first place. It's difficult to know for sure about these things when your memory is crap and your brain is a little mushy on its good days, so I could be making this up, but I do wonder. And apparently I will find out in the next couple of weeks. If I can remember to wonder about it, that is. Haha.
When I called my doctor's office today to leave a message I forgot my message halfway through reciting it to the secretary, which was hilarious. I apologized and suggested that maybe they were used to that at a neurologist's office, to which she replied that they get that a lot. At the very least this stuff does give me some pretty good stories.
Saturday, August 8, 2009
Back to Reality
Today wasn't much, but it was a heck of a lot better than yesterday. I didn't sleep any better, though I do vaguely remember having interesting dreams even if I didn't remember what they were about when I woke up this morning.
I started off the day totally out of it but less nauseated at least. My dad and I went to get sushi for lunch, which is our weekly father-daughter tradition at the moment, and then took my car to get it inspected and the oil changed. We ended up sitting at the dealership for several hours waiting on it, during which time I took multiple unintentional naps, which actually turned out to be good for me. Dad had a book and I entertained myself on my iphone when I wasn't accidentally napping. On the one hand it was really boring, but it was also tiring. I was pretty relaxed, but sitting up gets difficult after awhile when your default position is completely horizontal.
Eventually we did get out of there, and my car smells all clean and nice and is running better now. It's so shiny- they must have waxed it or something.
When we got home I was feeling much better: more relaxed, but also very here and awake. The outside world felt so immediate and real today. I took my dog out and sat in the yard for awhile even though it was really hot just because I wanted to feel like a part of the world. I've always felt more real when I'm outside.
I didn't do any homework today, but I really needed a break. Sometimes you just need a day or two to chill. I'm not worried about next week anyway, as I should have plenty of time to finish everything.
Maybe this dose isn't so bad after all. I'm keeping my fingers crossed for less side effects again tomorrow.
I started off the day totally out of it but less nauseated at least. My dad and I went to get sushi for lunch, which is our weekly father-daughter tradition at the moment, and then took my car to get it inspected and the oil changed. We ended up sitting at the dealership for several hours waiting on it, during which time I took multiple unintentional naps, which actually turned out to be good for me. Dad had a book and I entertained myself on my iphone when I wasn't accidentally napping. On the one hand it was really boring, but it was also tiring. I was pretty relaxed, but sitting up gets difficult after awhile when your default position is completely horizontal.
Eventually we did get out of there, and my car smells all clean and nice and is running better now. It's so shiny- they must have waxed it or something.
When we got home I was feeling much better: more relaxed, but also very here and awake. The outside world felt so immediate and real today. I took my dog out and sat in the yard for awhile even though it was really hot just because I wanted to feel like a part of the world. I've always felt more real when I'm outside.
I didn't do any homework today, but I really needed a break. Sometimes you just need a day or two to chill. I'm not worried about next week anyway, as I should have plenty of time to finish everything.
Maybe this dose isn't so bad after all. I'm keeping my fingers crossed for less side effects again tomorrow.
Friday, August 7, 2009
La-la Land
Well, obviously the new dose is working. Good news, right? Well, I am more awake (which is, admittedly, pretty nice), but my former bad side effects are also putting in an appearance. I can't call my doctor until Monday, at which point I may end up on more Remeron. But for the weekend at least I'm stuck with no appetite, nausea in the morning until past lunch, and perhaps the most fun of all, anxiety. I hate being anxious for no reason. It's just annoying and makes life difficult in ways that life shouldn't be. I end up constantly tense and very shy and nervous, which sucks. But maybe my least favorite thing about anxiety is the effect it has on my sleep.
You would think that, having Narcolepsy, the last thing I would be worried about would be my ability to fall asleep. But Xyrem-induced anxiety actually makes it very difficult for me to fall asleep at night, and for the last four nights or so I've actually ended up staying awake thinking and being nauseated for most of the first of my three doses. The result is that I start losing even more sleep, so I end up more exhausted every day (even more than usual, that is) and totally zonked out. As a result, class has been especially challenging the past two afternoons. On Thursday I failed to eat enough lunch because I was nauseated and all food looked disgusting. I managed to force-feed myself half or so of a lunch, but then when I got to class I was shaky and unable to concentrate. I ended up leaving the room multiple times during the afternoon in order to force down enough rice crackers to avoid becoming completely non-functional. Even so, I only had an attention span for about one hour of four. I tried to focus on working on my project, but was about to fall over by the time I left. I turned up my music on the way home because I was worried about zoning out. Then it was straight to the couch, and I didn't even take my dog on a walk because I was too dead. And then of course I couldn't fall asleep again last night, so when I woke up this morning I knew I was pretty much screwed.
I had another four hour class today, and was only really there for an hour of it. After that it was a constant mental fight to pay attention. I seriously only got a little bit of the material into my head, and when I was supposed to be practicing in class I wound up staring blankly at my computer for minutes at a time. One of my fellow students kept asking me for help with things, and it took all of my mental effort to focus enough to formulate responses that vaguely made sense. By the end of class I was so glad to be out of there. Driving was difficult but I got an icee on my way home which helped a lot.
I'm hoping my doctor will get back with me early next week so I can do something about this. I'm not looking forward to my classes next week otherwise. This weekend's homework will be hard enough.
You would think that, having Narcolepsy, the last thing I would be worried about would be my ability to fall asleep. But Xyrem-induced anxiety actually makes it very difficult for me to fall asleep at night, and for the last four nights or so I've actually ended up staying awake thinking and being nauseated for most of the first of my three doses. The result is that I start losing even more sleep, so I end up more exhausted every day (even more than usual, that is) and totally zonked out. As a result, class has been especially challenging the past two afternoons. On Thursday I failed to eat enough lunch because I was nauseated and all food looked disgusting. I managed to force-feed myself half or so of a lunch, but then when I got to class I was shaky and unable to concentrate. I ended up leaving the room multiple times during the afternoon in order to force down enough rice crackers to avoid becoming completely non-functional. Even so, I only had an attention span for about one hour of four. I tried to focus on working on my project, but was about to fall over by the time I left. I turned up my music on the way home because I was worried about zoning out. Then it was straight to the couch, and I didn't even take my dog on a walk because I was too dead. And then of course I couldn't fall asleep again last night, so when I woke up this morning I knew I was pretty much screwed.
I had another four hour class today, and was only really there for an hour of it. After that it was a constant mental fight to pay attention. I seriously only got a little bit of the material into my head, and when I was supposed to be practicing in class I wound up staring blankly at my computer for minutes at a time. One of my fellow students kept asking me for help with things, and it took all of my mental effort to focus enough to formulate responses that vaguely made sense. By the end of class I was so glad to be out of there. Driving was difficult but I got an icee on my way home which helped a lot.
I'm hoping my doctor will get back with me early next week so I can do something about this. I'm not looking forward to my classes next week otherwise. This weekend's homework will be hard enough.
Monday, August 3, 2009
Three-Dimensional Day
Today was very interesting to look at, thanks to Xyrem and a little caffeine. The highlight was when I ran an errand and was amazed by the 3Dness of a parking lot. And yes, I would describe myself as easily amused, lol.
For I don't even know how long- possibly more than ten years- my visual world has been pretty flat. It took me awhile, but eventually I figured out that my senses are actually pretty dulled compared to most people. Even though I'm a visual person and my eyes work just fine with a little help from contacts, my brain really doesn't sort the information out very well. The funny thing is that until I first started Xyrem, I didn't have any idea. As a result, I thought it was stupidity causing me to run smack into things all the time. My friends never let me live it down after I ran straight into a pole at school once- then turned right around and hit another one, haha. What's really funny, though, is what came out in drawing classes.
Drawing from life has always been really easy for me, probably because my unusually flat vision translates well onto 2D paper. The bane of my drawing life for a long time, though, was perspective drawing. I could never get it right. I would eyeball the angles, they would look right compared to the hallway or building corner or whatever it was I was looking at, but the finished drawing would have so much depth that I was convinced it was wrong. I would erase and redraw everything to be the right amount of depth, but then the angles were all off and I would get hopelessly frustrated. To make it even more confusing, my too-deep drawings would get the better grades and when I asked teachers for help, that's the direction they would steer me. The whole thing drove me crazy because when I got it right it would look really wrong compared to what I was actually seeing.
Six drawing classes worth of confusing perspective drawings later, I started on Xyrem. I remember very clearly the first time I was awake enough to see something in a 3D fashion- I sat up in bed and looked at my door, which was open. It was jutting out at me really freaking far. I was shocked. I looked around and for the first time in god knows how long actually saw the space between objects. I started wandering around the house, staring at things from different angles. It was a whole new world.
Every time I've raised my dose, I've been struck with a better sense of three dimensions. It's like there are endless levels of it and I keep moving up- and each time it surprises and delights me. My parents are now used to me wandering around staring at stuff and walking in circles around furniture. It really amuses all of us.
By far my favorite thing to look at when getting an upgrade are trees. They completely astound me with how complicatedly 3D they are. In the opposite way clouds are cool because they're subtle enough that I can very rarely see the space around them, but when I do it's amazing.
So today I went to get some bubble tea and came out of the store into a strikingly 3D parking lot with really 3D cars and people in it. It had been noticable on my way in, but the caffeine gave me just enough more awakeness to bump it up a notch. I looked around and smiled at people, doing my best not to look too much like being in a parking lot was the highlight of my day, lol. When driving home I was good and only stared at trees when stopped at lights. Walking my dog was also fun. The sidewalk seemed to go on forever in front of us.
I'm about to hit the highest dose of Xyrem, so the days of amazement will most likely end for now. I will get used to this level and stop noticing so much. But it's definitely something I will never take for granted.
For I don't even know how long- possibly more than ten years- my visual world has been pretty flat. It took me awhile, but eventually I figured out that my senses are actually pretty dulled compared to most people. Even though I'm a visual person and my eyes work just fine with a little help from contacts, my brain really doesn't sort the information out very well. The funny thing is that until I first started Xyrem, I didn't have any idea. As a result, I thought it was stupidity causing me to run smack into things all the time. My friends never let me live it down after I ran straight into a pole at school once- then turned right around and hit another one, haha. What's really funny, though, is what came out in drawing classes.
Drawing from life has always been really easy for me, probably because my unusually flat vision translates well onto 2D paper. The bane of my drawing life for a long time, though, was perspective drawing. I could never get it right. I would eyeball the angles, they would look right compared to the hallway or building corner or whatever it was I was looking at, but the finished drawing would have so much depth that I was convinced it was wrong. I would erase and redraw everything to be the right amount of depth, but then the angles were all off and I would get hopelessly frustrated. To make it even more confusing, my too-deep drawings would get the better grades and when I asked teachers for help, that's the direction they would steer me. The whole thing drove me crazy because when I got it right it would look really wrong compared to what I was actually seeing.
Six drawing classes worth of confusing perspective drawings later, I started on Xyrem. I remember very clearly the first time I was awake enough to see something in a 3D fashion- I sat up in bed and looked at my door, which was open. It was jutting out at me really freaking far. I was shocked. I looked around and for the first time in god knows how long actually saw the space between objects. I started wandering around the house, staring at things from different angles. It was a whole new world.
Every time I've raised my dose, I've been struck with a better sense of three dimensions. It's like there are endless levels of it and I keep moving up- and each time it surprises and delights me. My parents are now used to me wandering around staring at stuff and walking in circles around furniture. It really amuses all of us.
By far my favorite thing to look at when getting an upgrade are trees. They completely astound me with how complicatedly 3D they are. In the opposite way clouds are cool because they're subtle enough that I can very rarely see the space around them, but when I do it's amazing.
So today I went to get some bubble tea and came out of the store into a strikingly 3D parking lot with really 3D cars and people in it. It had been noticable on my way in, but the caffeine gave me just enough more awakeness to bump it up a notch. I looked around and smiled at people, doing my best not to look too much like being in a parking lot was the highlight of my day, lol. When driving home I was good and only stared at trees when stopped at lights. Walking my dog was also fun. The sidewalk seemed to go on forever in front of us.
I'm about to hit the highest dose of Xyrem, so the days of amazement will most likely end for now. I will get used to this level and stop noticing so much. But it's definitely something I will never take for granted.
Friday, July 31, 2009
More Swimming
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.
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.
Saturday, July 25, 2009
Sleep vs. Eat
I'm still very sinus-infectionafied, hence the lack of blogging yesterday. The good news is that I somehow managed to turn in some homework and am now pretty much on track again, if I can get this week's work done on time. Which I think I can, thankfully. If I survived my first college experience, I can deal with this easily.
For one thing, my medication situation is vastly improved nowadays. When I was tackling my senior year at Carleton, I was faced with a very interesting dilemma. It's one of those ironic twists that's so unfortunate that it was actually really funny to me, even at the time. My dilemma was one of Sleep or Eat.
At the time I was on Xyrem (only Xyrem) for my narcolepsy, and it was very helpful for getting me sleep. It also took away my appetite completely and gave me anxiety problems. This was really bad for me because I was already borderline underweight from having Celiac disease for years, and my diet is so strict that I have to cook most of my own food- and I'm a pretty boring cook to start with. I'm also exhausted most of the time, and cooking is not something that I enjoy. So the result of all this was that I had to force-feed myself, because I had no appetite, and so I didn't eat near enough food every day because of the Xyrem side effects.
Because of all this, sleep and eat became pretty much mutually exclusive. I could take enough Xyrem to get some sleep, but that would leave me in a state of barely eating anything. Or I could take less Xyrem and have more nightmares and go back to living in a constant haze, but actually want food and be able to eat. I really did think it was pretty hilarious at the time. I mean, you can't make this shit up.
For most of a year I chose sleep, simply for survival reasons. I was determined to graduate and that was, I knew, the only way to do it. The result was that I lost weight dangerously- I was 95 pounds at my lowest weight, and for my body type I should be 110 at least. It was really scary, actually, because I could see bones where I really shouldn't. You could see my ribs without me sucking in my breath or anything, and my hip bone had way less padding than it was supposed to. As soon as I graduated I went back home and saw my neurologist, who immediately lowered my Xyrem while we figured things out. And then I had to opposite problem- I had my appetite back, but was so exhausted all the time that I couldn't really appreciate it. I was eating better but still not gaining weight. My neurologist wanted to put me on Provigil, because then I wouldn't need as much Xyrem (therefore lessening all the side effects) and could still be awake during the day. This sounded like the best plan ever, until I found out that Provigil isn't gluten-free.
Go figure. And it's not even the for sure kind of gluten-containing. It's the stupid, let's fill it with whatever is cheapest at the time kind- so a given pill is gluten-free or not, but there's no way to actually tell. My neurologist wanted me to just try it anyway, but my days of taking chances with gluten have long been over, and I convinced him that no, steadily worsening depression and exhaustion and pain issues were not "worth a try".
Then we started trying antidepressants, and once we found the right one (after some months of bad experimenting, including an allergic reaction- that was fun) life got much better, and I was finally allowed to both sleep and eat. As a bonus, I started gaining weight back, and still am. I'm now proudly in the triple digits once again at 103 pounds. Woohoo! And I've filled out nicely, if I do say so myself. My appetite is huge again, and this makes the need to constantly cook infinitely easier to deal with. I have a feeling I have a few more pounds in my future.
At least, with all that I've had to deal with, I'll never take this stuff for granted.
For one thing, my medication situation is vastly improved nowadays. When I was tackling my senior year at Carleton, I was faced with a very interesting dilemma. It's one of those ironic twists that's so unfortunate that it was actually really funny to me, even at the time. My dilemma was one of Sleep or Eat.
At the time I was on Xyrem (only Xyrem) for my narcolepsy, and it was very helpful for getting me sleep. It also took away my appetite completely and gave me anxiety problems. This was really bad for me because I was already borderline underweight from having Celiac disease for years, and my diet is so strict that I have to cook most of my own food- and I'm a pretty boring cook to start with. I'm also exhausted most of the time, and cooking is not something that I enjoy. So the result of all this was that I had to force-feed myself, because I had no appetite, and so I didn't eat near enough food every day because of the Xyrem side effects.
Because of all this, sleep and eat became pretty much mutually exclusive. I could take enough Xyrem to get some sleep, but that would leave me in a state of barely eating anything. Or I could take less Xyrem and have more nightmares and go back to living in a constant haze, but actually want food and be able to eat. I really did think it was pretty hilarious at the time. I mean, you can't make this shit up.
For most of a year I chose sleep, simply for survival reasons. I was determined to graduate and that was, I knew, the only way to do it. The result was that I lost weight dangerously- I was 95 pounds at my lowest weight, and for my body type I should be 110 at least. It was really scary, actually, because I could see bones where I really shouldn't. You could see my ribs without me sucking in my breath or anything, and my hip bone had way less padding than it was supposed to. As soon as I graduated I went back home and saw my neurologist, who immediately lowered my Xyrem while we figured things out. And then I had to opposite problem- I had my appetite back, but was so exhausted all the time that I couldn't really appreciate it. I was eating better but still not gaining weight. My neurologist wanted to put me on Provigil, because then I wouldn't need as much Xyrem (therefore lessening all the side effects) and could still be awake during the day. This sounded like the best plan ever, until I found out that Provigil isn't gluten-free.
Go figure. And it's not even the for sure kind of gluten-containing. It's the stupid, let's fill it with whatever is cheapest at the time kind- so a given pill is gluten-free or not, but there's no way to actually tell. My neurologist wanted me to just try it anyway, but my days of taking chances with gluten have long been over, and I convinced him that no, steadily worsening depression and exhaustion and pain issues were not "worth a try".
Then we started trying antidepressants, and once we found the right one (after some months of bad experimenting, including an allergic reaction- that was fun) life got much better, and I was finally allowed to both sleep and eat. As a bonus, I started gaining weight back, and still am. I'm now proudly in the triple digits once again at 103 pounds. Woohoo! And I've filled out nicely, if I do say so myself. My appetite is huge again, and this makes the need to constantly cook infinitely easier to deal with. I have a feeling I have a few more pounds in my future.
At least, with all that I've had to deal with, I'll never take this stuff for granted.
Friday, July 17, 2009
Running Out
Today I'm just completely beat. I had a late night. The first part was my fault- I stayed up past my usual bedtime chatting, and then when I did drug myself and try to sleep my brain was still way too active and started derailing into total creepiness. I ended up lying in the dark with my eyes open, feeling like bony hands were reaching toward me from all directions and remembering too many details from the only horror movie I have ever been dumb enough to be talked into seeing. And finally I turned on my lamp and drugged-dialed the friend who I had stayed up talking to in the first place. Which turned out to effectively distract me while my brain slowed down, and did eventually help me sleep, though I seriously don't remember what we were talking about. But as a result I ended up finally going to sleep an hour and a half into my first dose, which I took later than usual to begin with. So I woke up exhausted and nauseated this morning, and just way down on energy. And today has just been really hard. I had class which didn't help, and took the stairs on the way down which you would think wouldn't totally screw me over, but it kind of did. My dog got a really short walk tonight and I had serious trouble mobilizing myself just to clean up after dinner. Now I need to take a shower, which I got distracted and skipped last night, but I'm daunted by the idea of standing up for the few minutes it would take. You could say I'm pretty much out of spoons.
I really really hope I can sleep tonight and wake up tomorrow feeling at least better than today. My cousin is coming to visit me and I really want to have the energy to go shopping with her and catch up. But we'll see. If it's anything like today we'll just have to visit sitting down at my house.
And to top it off I now have some time-consuming homework due next week. Usually this wouldn't stress me out, as I have a whole week to accomplish it. But when showering is stressful, you know you're in trouble.
I really really hope I can sleep tonight and wake up tomorrow feeling at least better than today. My cousin is coming to visit me and I really want to have the energy to go shopping with her and catch up. But we'll see. If it's anything like today we'll just have to visit sitting down at my house.
And to top it off I now have some time-consuming homework due next week. Usually this wouldn't stress me out, as I have a whole week to accomplish it. But when showering is stressful, you know you're in trouble.
Friday, July 10, 2009
Typing While Drugged
Okay, so technically I should be writing this tomorrow. But I'm not asleep yet, and have another good story today, so I can't help myself haha.
So last night in the middle of the night I woke up really confused and dizzy and groggy. I looked down at my clock, and realized it was like an hour after my second dose. Well, that makes sense, I thought. So I picked up this book and got distracted trying to read it. It was a really easy book, but I was having a lot of trouble because my vision was all weird and blurry and foggy from being drugged. Still, I persisted for awhile. Finally I realized I was awake because I really needed to go to the bathroom. So I got up and started trying to walk in that direction, but my vision was all foggy and I couldn't stand up very well and kept losing my balance and almost falling over. Occasionally I would reach out to steady myself on the nearest furniture only to realize I was still standing next to my bed. Finally I did fall over, smacking into my bed and-
I jerked awake. Flat on my back in bed, three hours later than I had thought it was. And yeah, I still had to go to the bathroom. This time the real one. One disorienting experience.
I had a nice long phone conversation today in which I totally creeped out my friend with the teeth thing. Muahahahaha. XD
And now I need to go to bed before I end up with real Xyrem druggedness as opposed to the hallucinated kind.
So last night in the middle of the night I woke up really confused and dizzy and groggy. I looked down at my clock, and realized it was like an hour after my second dose. Well, that makes sense, I thought. So I picked up this book and got distracted trying to read it. It was a really easy book, but I was having a lot of trouble because my vision was all weird and blurry and foggy from being drugged. Still, I persisted for awhile. Finally I realized I was awake because I really needed to go to the bathroom. So I got up and started trying to walk in that direction, but my vision was all foggy and I couldn't stand up very well and kept losing my balance and almost falling over. Occasionally I would reach out to steady myself on the nearest furniture only to realize I was still standing next to my bed. Finally I did fall over, smacking into my bed and-
I jerked awake. Flat on my back in bed, three hours later than I had thought it was. And yeah, I still had to go to the bathroom. This time the real one. One disorienting experience.
I had a nice long phone conversation today in which I totally creeped out my friend with the teeth thing. Muahahahaha. XD
And now I need to go to bed before I end up with real Xyrem druggedness as opposed to the hallucinated kind.
Thursday, July 9, 2009
Mind Mud
Today is way better. Thank goodness. I was digging myself into a pessimistic hole yesterday, but then woke up to a much more functional state of being. I know the shifting around isn't quite done yet, but that's okay. I'm just really glad I feel safe driving today- I was running out of food. Oops. ^^; I also went to Petco to get more dogfood. It's literally three blocks from my house, so I usually take my dog at the end of one of our daily walks whenever I need to stock up on something (like frequently, treats- haha). Lately though I haven't been taking my wallet on walks because I'm starting to grow out of my jeans (which is a really good thing, as I've been underweight for ages) and it doesn't fit in my pocket very well anymore. So when I left home, in the back of my mind was the idea I should take my wallet today, only I couldn't remember why, so of course I disregarded it. Only to get to Petco's checkout line and realize my wallet was at my house. XD So we got to go there twice.
The dumb little things that don't occur to me or that I somehow forget or that I say without thinking have been with me for a long time. I used to get made fun of for it, and nowadays I do the making fun. Because most of the time it is pretty funny when you go upstairs to get something, get sidetracked and go to the bathroom only to remember later when you're back downstairs again that you actually went up there to do something else. Or you write a list and forget to bring it, or get out to your car without the car keys, etc. Basically I think it's pretty amusing that my mind is made of mush. Especially since now I know it isn't my fault.
I think the one thing that does actually bother me about the situation is how jumbled up my real memories, past dreams and random imaginings are. They're basically indistinguishable from each other as far as clarity (basically, all hazy) and sense of reality. Before medication, my dreams were all more real than real memories, and either completely horrible, tragic and terrifying or amazingly awesome and beautiful. So I could tell the mundane reality stuff apart pretty easily. Now though my dreams are more the mundane but disturbing type. And now that I have some time distance from the stronger dreams, I have trouble telling them apart from the actual memories of the time or memories from yesterday or last night's dream because it's basically all just brain soup at this point. I also feel weirdly distanced from my memories of my real life as if I'm remembering someone else's autobiography that I read or something. Only I know it's my life because there's the occasional detail that only I could possibly know. And then there's the fact that I daydream pretty uncontrollably, sometimes about a book that I'm reading, or a story I'm writing, but usually about all the things that could go wrong. If I'm driving a corner of my mind is watching me crash. If I'm walking my dog, it's about him getting run over. If I'm sitting at home it's about people breaking into the house. The list goes on and on. And these things get added to the soup of what's real and what happened or didn't happen or was in a dream last night or a daydream five minutes ago. And people wonder why I'm so insecure sometimes. Life is confusing when your brain is mush.
The dumb little things that don't occur to me or that I somehow forget or that I say without thinking have been with me for a long time. I used to get made fun of for it, and nowadays I do the making fun. Because most of the time it is pretty funny when you go upstairs to get something, get sidetracked and go to the bathroom only to remember later when you're back downstairs again that you actually went up there to do something else. Or you write a list and forget to bring it, or get out to your car without the car keys, etc. Basically I think it's pretty amusing that my mind is made of mush. Especially since now I know it isn't my fault.
I think the one thing that does actually bother me about the situation is how jumbled up my real memories, past dreams and random imaginings are. They're basically indistinguishable from each other as far as clarity (basically, all hazy) and sense of reality. Before medication, my dreams were all more real than real memories, and either completely horrible, tragic and terrifying or amazingly awesome and beautiful. So I could tell the mundane reality stuff apart pretty easily. Now though my dreams are more the mundane but disturbing type. And now that I have some time distance from the stronger dreams, I have trouble telling them apart from the actual memories of the time or memories from yesterday or last night's dream because it's basically all just brain soup at this point. I also feel weirdly distanced from my memories of my real life as if I'm remembering someone else's autobiography that I read or something. Only I know it's my life because there's the occasional detail that only I could possibly know. And then there's the fact that I daydream pretty uncontrollably, sometimes about a book that I'm reading, or a story I'm writing, but usually about all the things that could go wrong. If I'm driving a corner of my mind is watching me crash. If I'm walking my dog, it's about him getting run over. If I'm sitting at home it's about people breaking into the house. The list goes on and on. And these things get added to the soup of what's real and what happened or didn't happen or was in a dream last night or a daydream five minutes ago. And people wonder why I'm so insecure sometimes. Life is confusing when your brain is mush.
Tuesday, July 7, 2009
Not So Bad
I woke up this morning and thought, hey, that wasn't bad! And then remembered the gorey and slightly disturbing dream I had in which I was a really macho buff guy with lots of tattoos (which is funny because that's like the exact opposite of how I look) who was trying to pretend to be harmless while sneaking past oppressive intelligent dinosaurs who he was supposed to assassinate without getting caught in this weird multi-planet world with Stargates. And this dude/I had a team of people who looked oddly like characters from Ouran High School Host Club. It was frustrating and weird and disturbingly bloody. o.O Well, at least I got to miss the hallucinating. But that probably will happen at some point. I vaguely remember having another dream in there somewhere about figuring out I was in a dream and thinking it was going to get scary, but it never really did. But I was in my old room which is always a bad sign. (Digression time!)
For most of my life, from when I was like 7 to when I was 22, my parents (and me until I went away for college) lived in the same little old house. When I was little I did sometimes have really vivid and awful nightmares, but it got really bad around 12 or 13. I wasn't diagnosed with Narcolepsy until I was- 20? Yes. So my bedroom, for 7ish years, was this place of terror. I had countless terrifying dreams in which I would "wake up" in my bedroom, and then there would be someone moving around in my bathroom or people looking in through my windows or something moving in the shadows. Or there would be cockroaches all over my bed or I would get up and look into the living room and this creepy water would be slowly rising, or I would find skeletons in my closet (that saying has never amused me, thank you very much), or there would be gunmen outside all the windows and if they saw me they would shoot. Or someone would come in and I would have to find a way to hide or sneak away or else I knew they were going to kill me. It almost always started in my room, with me waking up in my bed (because then I would think it was all real- thanks brain -.-) and then eventually I would get so afraid I would suddenly jerk awake, but be paralyzed and hallucinate. So then I would really be seeing my bedroom, but instead of just my room I would see shadow people doing things or looking in or touching me, and I would hear sounds like keys jangling and scratching sounds, creaking, or whispering. And I could feel people touching me, sometimes gently and sometimes violently. This kind of hallucination is called hypnopompic. I've also had the hypnogogic kind, on going to sleep, but those weren't usually as bad for me.
So you can see why being in my old bedroom was potentially a bad sign. The Xyrem usually keeps those things away, which is why I'm not going to give it up if I can possibly avoid it, even though it gives me stomach issues and makes my diet more annoying. Which is yet another long story.
I do seem to be more awake today though. I've decided (since I'm not going back to my doctor for three months) that I might as well take my dose to a halfway point before raising it the rest of the way, just to make it easier on myself. So it'll take a little longer to know what the effects of the maximum dose are, but in the meantime it might screw me up less.
For most of my life, from when I was like 7 to when I was 22, my parents (and me until I went away for college) lived in the same little old house. When I was little I did sometimes have really vivid and awful nightmares, but it got really bad around 12 or 13. I wasn't diagnosed with Narcolepsy until I was- 20? Yes. So my bedroom, for 7ish years, was this place of terror. I had countless terrifying dreams in which I would "wake up" in my bedroom, and then there would be someone moving around in my bathroom or people looking in through my windows or something moving in the shadows. Or there would be cockroaches all over my bed or I would get up and look into the living room and this creepy water would be slowly rising, or I would find skeletons in my closet (that saying has never amused me, thank you very much), or there would be gunmen outside all the windows and if they saw me they would shoot. Or someone would come in and I would have to find a way to hide or sneak away or else I knew they were going to kill me. It almost always started in my room, with me waking up in my bed (because then I would think it was all real- thanks brain -.-) and then eventually I would get so afraid I would suddenly jerk awake, but be paralyzed and hallucinate. So then I would really be seeing my bedroom, but instead of just my room I would see shadow people doing things or looking in or touching me, and I would hear sounds like keys jangling and scratching sounds, creaking, or whispering. And I could feel people touching me, sometimes gently and sometimes violently. This kind of hallucination is called hypnopompic. I've also had the hypnogogic kind, on going to sleep, but those weren't usually as bad for me.
So you can see why being in my old bedroom was potentially a bad sign. The Xyrem usually keeps those things away, which is why I'm not going to give it up if I can possibly avoid it, even though it gives me stomach issues and makes my diet more annoying. Which is yet another long story.
I do seem to be more awake today though. I've decided (since I'm not going back to my doctor for three months) that I might as well take my dose to a halfway point before raising it the rest of the way, just to make it easier on myself. So it'll take a little longer to know what the effects of the maximum dose are, but in the meantime it might screw me up less.
Monday, July 6, 2009
The Inevitable
So I've been toying with the idea of blogging for awhile now. I'm definitely self-centered enough (no offense intended to other bloggers- I'm only speaking for myself here) and have many issues that I need to work out. Plus I like writing, freaking people out and joking about stuff that technically isn't funny. What stopped me from doing it before (except for one long trip, which I knew people would be interested in reading about) was the fact that my life is basically a. sleeping, b. complaining, and c. cooking even though I hate cooking. And I was like, no one wants to read about me struggling through life because my immune system has an attitude problem. But then while searching around online I came across other people blogging about similar things, really got into reading them, and it ocurred to me that maybe there is, in fact, an audience for this. Even if it is just me, haha.
As you might have guessed, I have a huge backstory. Which I'm totally not interested in typing up in one post or even several. So I've basically decided to just drop bits of backstory whenever I feel like. Otherwise the first posts would be way too much work and require too much energy to accomplish, which, if you know much about either of my illnesses, I do not have much of a supply of. By the way that was the worst sentence ever. But whatever. It's late for me (9 pm) therefore I do not promise coherence. To drop a vague summary on you- kid with awesome life hits puberty, gets totally screwed for 7 years, gets diagnosed for awhile, gets medicated, and then eventually (three years-ish later) realizes that she is still screwed and may in fact always be screwed. And here I am now.
I've spent the last three years adjusting my meds around and adding or subtracting them. At this point I'm about to get up to the highest dosage I can of the only combination that even vaguely works. I'm raising my Xyrem again tonight, which for me will mean almost a month of general sleep cycle madness before I settle out and get to see if I can come out of this with enough energy to have a life- or don't, in which case I need to do some serious life plan rethinking. But I'm not going to cross that bridge till I come to it. For anyone who for some reason decides to read this, the next few weeks means you get to hear about whatever nasty dreams, hallucinations while paralyzed, upset stomach nonsense and fun medication-caused anxiety I get to to experience. I'm pretty used to the routine by now- raise the dose, go crazy for two or three weeks, settle out and feel quite a bit better. There is a good reason I take this medication despite the crap that happens when I change doses- it does vastly improve life. But that's a story for another day, when I'm not getting rambly because it's almost my bedtime.
As you might have guessed, I have a huge backstory. Which I'm totally not interested in typing up in one post or even several. So I've basically decided to just drop bits of backstory whenever I feel like. Otherwise the first posts would be way too much work and require too much energy to accomplish, which, if you know much about either of my illnesses, I do not have much of a supply of. By the way that was the worst sentence ever. But whatever. It's late for me (9 pm) therefore I do not promise coherence. To drop a vague summary on you- kid with awesome life hits puberty, gets totally screwed for 7 years, gets diagnosed for awhile, gets medicated, and then eventually (three years-ish later) realizes that she is still screwed and may in fact always be screwed. And here I am now.
I've spent the last three years adjusting my meds around and adding or subtracting them. At this point I'm about to get up to the highest dosage I can of the only combination that even vaguely works. I'm raising my Xyrem again tonight, which for me will mean almost a month of general sleep cycle madness before I settle out and get to see if I can come out of this with enough energy to have a life- or don't, in which case I need to do some serious life plan rethinking. But I'm not going to cross that bridge till I come to it. For anyone who for some reason decides to read this, the next few weeks means you get to hear about whatever nasty dreams, hallucinations while paralyzed, upset stomach nonsense and fun medication-caused anxiety I get to to experience. I'm pretty used to the routine by now- raise the dose, go crazy for two or three weeks, settle out and feel quite a bit better. There is a good reason I take this medication despite the crap that happens when I change doses- it does vastly improve life. But that's a story for another day, when I'm not getting rambly because it's almost my bedtime.
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