Since we moved back into the area, we've been in search of support groups that have trans members. Transsexualism isn't really something you can talk about to just anyone you meet, and even when you can people usually can't relate. First we tried driving an hour to the nearest city, but it was just too inconvenient. Then we realized there's actually a chapter of PFLAG (an LGBT and allies group) just twenty minutes away.
The first meeting we went to (they're monthly) wasn't terribly exciting, but that might have just been because I slept through it. The meetings take place at night, and I forgot to drink caffeine before we left, so by the time announcements were done and it was time to discuss things, I was out in my chair, dozing on my husband's shoulder. I was really annoyed at myself because the people seemed great and the atmosphere safe and friendly. So this time, I went armed with dark chocolate pieces to keep me awake there after drinking the strongest jasmine tea in the house.
It did sort of work, and it was a meeting that was specifically about trans issues with a speaker who had a transman son, so very relevant to us. I mostly didn't zone out, though I ended up pretty whacked out on excess caffeine and sugar. WHY do people meet at night of all times? Thank God the writer's group we go to is in the middle of the day on the weekend...
Well, at least I didn't miss anything this time. I even spoke up at one point because we were talking about the relationship between sexual orientation and gender identity (they are two very distinct and unrelated things, from my point of view) and people were half-convincing themselves that asexuals (who they didn't even know the word for) and androgynous people must be the same. I know multiple asexuals and most of them identify as female so I stood up for them, which everyone, especially this somewhat creepy counselor guy, seemed to be really interested in. It seems weird to me that a roomful of people who deviate from mainstream sexuality/gender wouldn't know that if they exist, surely other variations on the same theme do also. But, I know I have a really different perspective because I know a randomly and accidentally very diverse group of people.
But I thought the best part was as everyone was leaving, because we got to meet and talk to a bunch of people who were really cool and nice and supportive to each other. We met a transman who's in high school who immediately connected with J, J's mom got to talk with another mom for a long time, and I got randomly pounced on by people. The speaker randomly ran over (like, seriously ran) and hugged me for having married a transman because her son had always had a hard time finding a mate. I thought it was sweet, but mystifying, because I honestly can't figure out why I wouldn't be with a transman/J because we're so well-matched emotionally. Then I realized it probably had to do with the fact that I'm not "out" to these people... they don't know about my disability for the most part, and this woman didn't see me asleep last week. Therefore, they don't know that J actually does way more to take care of me than I have to do for him usually. I guess if he was the only "difficult" one lol, it would be harder for most people to stick around. Instead, I probably am harder to live with, through no fault of my own. I'm so grateful to have J that him being trans and all the difficulties that go with it just don't register most of the time.
We also ended up talking to an older transwoman for awhile until J's mom dragged us out because she could see me starting to sway on my feet. We didn't get home until almost 11, and I spent the next 24 hours recovering. I would say I wish the meetings were more frequent, but if they were I would be screwed. Someone should put a meeting during sane hours, just for me.
Showing posts with label narcolepsy. Show all posts
Showing posts with label narcolepsy. Show all posts
Thursday, November 10, 2011
Monday, November 7, 2011
Like a Narcoleptic in a Mattress Store
I may have found the perfect Narcoleptic career: mattress store model! You just fall asleep in the front window, and the people walking by think the mattress you're on will help them sleep. Warning: May Be Mistaken For Mannikin Except for Snoring. XD If only someone would PAY me to sleep...
Well, I was at a mattress store yesterday, and let me tell you, I have never had that much trouble staying vertical in a store before. Just sitting on the cushy new mattresses made me too comfortable to stay awake. My husband was highly amused that he had to continuously poke me every two minutes when it was time to test a different one. It didn't help that it was cloudy outside, approaching sunset, and that I was pretty tired. I'm hoping it's a good sign anyway, that when our new mattress comes I might sleep better on it than I do on our two old-ish twin mattresses on the floor. It may come tonight, which means I could immediately at it to my various sleep experiments of the moment.
I hope it works; I need all the help I can get this time of year...
Well, I was at a mattress store yesterday, and let me tell you, I have never had that much trouble staying vertical in a store before. Just sitting on the cushy new mattresses made me too comfortable to stay awake. My husband was highly amused that he had to continuously poke me every two minutes when it was time to test a different one. It didn't help that it was cloudy outside, approaching sunset, and that I was pretty tired. I'm hoping it's a good sign anyway, that when our new mattress comes I might sleep better on it than I do on our two old-ish twin mattresses on the floor. It may come tonight, which means I could immediately at it to my various sleep experiments of the moment.
I hope it works; I need all the help I can get this time of year...
Thursday, November 3, 2011
Happy 5AM, Everyone!!
I HATE MORNINGS. Especially when I find myself out of bed before the sun rises. I'm fairly certain that this explains why winter is my least favorite season (Coming Soon! Ugh). Not only do I despise the cold, I hate being awake when it's dark out, and in the Midwest that's impossible to avoid for six months out of the year.
Maybe it's because I was afraid of the dark as a child (no wonder, as there were actually monsters in it for me). Or it could have to do with how much harder it is for me to stay awake without natural light helping me. I have my worst nightmares and hallucinations in the dark, and I'm pretty sure natural light is the main reason I can safely nap in the middle of the day. Either way, during the fall I always seem to have a harder time dealing with sleep, and it's that time of year again. I swear over the last week I've had just a couple of hours of non-nightmarish sleep a night while sleeping over 12 hours. So lately I decided I'm shaking this nonsense up. As my latest experiment of many, I tried using caffeine to stay up and my husband as an alarm in the morning in order to shorten my night. So I slept from 10PM (yeah, that's late lol) until around 5:30AM and the condensing did seem to help. I would have been asleep while walking around this morning if I hadn't immediately showered to help me wake up. Aside from being pretty useless for anything other than surfing the internet this morning, it seems to have worked. I only remembered one aggravating dream during my shower and my body feels more rested than usual.
Whether or not my head will clear enough to not mess up everything I touch today, lol, remains to be seen. I may even read this post later and be like, wait, what?
Anyway, I apologize for the lack of any update for so long. I would say I've been busy, but really I've just been surviving lately.
Oh, a disability update: all the paperwork is in and I've had a psych evaluation, so now I'm waiting. The evaluation was pretty comical (Now count backwards from 100 by 3's! and repeat these series of numbers backwards after me! do you ever think of dying? do you ever talk to anyone?). Who knows. We will see.
Maybe it's because I was afraid of the dark as a child (no wonder, as there were actually monsters in it for me). Or it could have to do with how much harder it is for me to stay awake without natural light helping me. I have my worst nightmares and hallucinations in the dark, and I'm pretty sure natural light is the main reason I can safely nap in the middle of the day. Either way, during the fall I always seem to have a harder time dealing with sleep, and it's that time of year again. I swear over the last week I've had just a couple of hours of non-nightmarish sleep a night while sleeping over 12 hours. So lately I decided I'm shaking this nonsense up. As my latest experiment of many, I tried using caffeine to stay up and my husband as an alarm in the morning in order to shorten my night. So I slept from 10PM (yeah, that's late lol) until around 5:30AM and the condensing did seem to help. I would have been asleep while walking around this morning if I hadn't immediately showered to help me wake up. Aside from being pretty useless for anything other than surfing the internet this morning, it seems to have worked. I only remembered one aggravating dream during my shower and my body feels more rested than usual.
Whether or not my head will clear enough to not mess up everything I touch today, lol, remains to be seen. I may even read this post later and be like, wait, what?
Anyway, I apologize for the lack of any update for so long. I would say I've been busy, but really I've just been surviving lately.
Oh, a disability update: all the paperwork is in and I've had a psych evaluation, so now I'm waiting. The evaluation was pretty comical (Now count backwards from 100 by 3's! and repeat these series of numbers backwards after me! do you ever think of dying? do you ever talk to anyone?). Who knows. We will see.
Tuesday, August 23, 2011
On Remeron for a Reason
I don't think I've written a whole lot about Remeron (my anti-depressant) on here. The thing goes somewhat unappreciated, maybe because there isn't anything to complain about. It doesn't give me any side effects so I mostly stopped noticing it was there. Or, maybe, my memory is simply bad enough that I've forgotten I'm on any meds anymore. But every time I manage to run out of it, I realize just how much help it is.
A neurologist several years ago put me on it because I was both depressed (had been for years) and needed extra help getting to sleep (as you all understand). I tried the generic first and it worked awesome. I felt like a new person. I was suddenly able to have hope for the future again and became usefully optimistic. I figured out how to smile. But then the side effects started- my muscles started to hurt. At first I thought I'd just pulled something, until I noticed it was happening to a bunch of muscles and would rotate around and change which ones it affected for no apparent reason. I tried staying on it but by the end of a month I was in constant pain. I felt so good otherwise that my doctor put me on the brand name instead and, just like we were hoping, it worked- no muscle pain, but all the good effects were still there.
When I got off of Xyrem a year ago, I stayed on Remeron, and I was glad I did. I didn't know how glad until the first time I ran out. I switched from the mail order system to picking it up from pharmacies because we kept moving, and with my memory you can imagine what would happen literally every month. I would get down to five tablets and start thinking I should refill it. I'd remember every night since I take it before bed, but forget by the morning. I wouldn't write myself a note until I was down to two, then finally make it to a pharmacy in the middle of nowhere, where they would have the generic or nothing at all and have to order it, and this would always happen to fall on a Friday somehow, so then I would have to wait until Monday and not take it for one or two nights.
The first time this happened, I was expecting to feel depressed. Instead, sleeping just got ten times harder. My dreams got more persistent, intense and disturbing. I did notice a drop in my mood but I was more concerned about the lack of sleep. On a good day I'm petty discombobulated, but without Remeron I get even more out of it and confused.
You would think, with such a big difference, I would learn after the first few times, but no. I keep running out. I think I've remembered twice out of the last ten or so times. I finally (now that we're settled again) switched it back to mail order, three months at a time, so it will no longer be up to my extremely efficient brain. But not in time to avoid it happening again this past weekend, of course. The first night I didn't have any, I just stayed up. My husband and I drank lots of caffeine, ate tons of cookies (Uqi's chocolate chip!!) and watched Stargate Atlantis. Between that and playing cards we managed to stay awake until around 2AM. My ploy sort of worked that night. I got up around 8 or 9 as usual so that I mostly skipped the dreaming phase that gets so much worse without Remeron.
I was feeling pretty smug (though more sleep deprived than usual) when I went to pick up my Remeron yesterday, until they told me that it hadn't come in and they couldn't get it until today. Feeling exasperated with myself for getting in this situation to begin with, I didn't try anything fancy last night, just got in bed and really wished that I hadn't.
I was looking at star charts like in Stargate SG-1 (which we started rewatching yesterday) when somebody came in with some fried chicken in a plastic bag and told me I was supposed to deliver it to this Buddhist monk. Apparently she lived at the top of this really steep hill even though we were supposedly in my extremely flat hometown. Actually it was more like a small mountain, with these crazy round boulders making it up. So I'm really hungry, climbing this weird mountain, sort of light-headed and trying to determine if a) the chicken is gluten-free and b) if it's okay to eat somebody else's lunch. I poke at the chicken and it seems GF so I try a piece. It's not tasty but it isn't poisonous either, so I keep eating it. I get up to this temple on this mountain and deliver the chicken and this monk lady is asking me all these really philosophical questions about stuff. I'm mostly just confused but sort of happy because the stuff she's talking about is interesting, but in the course of that I forget to deliver the chicken and just keep eating it. Then she sends me on my way and I'm wandering around my aunt's house seeing everything she's recently remodeled. Then a bunch of my cousins are there and we're taking my great aunt to see a newly flooded area of the city. It was clearly a highway before, but now the ocean is there, and a couple of highway bridges are acting like piers. We walk out on them, talking, and I'm telling them the whole city is going to be flooded soon.
So, this dream's not too bad, you're probably thinking. Well, then I feel pain in my mouth on the inside of my bottom lip. I get all annoyed thinking it's probably just something I accidentally bit as I was eating all the GF fried chicken. It's bleeding a lot and the blood tastes metallic like blood does. I start trying to find somewhere to spit it out because it tastes disgusting. It starts welling up more and more and gets all over my hands as I try to hold it inside my mouth. I find a dirty sink in an art class and spit the blood out into it, but it keeps coming and the texture turns really globby and clotted. The texture disgusts me even more and I just keep spitting it out, hoping it will stop. It tastes horrible and I feel nauseous.
It slows down a little, thankfully, but it tastes worse and worse, almost like rotting. In the sink, blood is mixed with old acrylic paint that many students have washed off of brushes. It makes a horrible, bloodstained rainbow.
Needless to say, I got up right away and went for the caffeine. I'm never under-appreciating my antidepressant again (until, you know, I forget about this whole thing in the next five minutes).
A neurologist several years ago put me on it because I was both depressed (had been for years) and needed extra help getting to sleep (as you all understand). I tried the generic first and it worked awesome. I felt like a new person. I was suddenly able to have hope for the future again and became usefully optimistic. I figured out how to smile. But then the side effects started- my muscles started to hurt. At first I thought I'd just pulled something, until I noticed it was happening to a bunch of muscles and would rotate around and change which ones it affected for no apparent reason. I tried staying on it but by the end of a month I was in constant pain. I felt so good otherwise that my doctor put me on the brand name instead and, just like we were hoping, it worked- no muscle pain, but all the good effects were still there.
When I got off of Xyrem a year ago, I stayed on Remeron, and I was glad I did. I didn't know how glad until the first time I ran out. I switched from the mail order system to picking it up from pharmacies because we kept moving, and with my memory you can imagine what would happen literally every month. I would get down to five tablets and start thinking I should refill it. I'd remember every night since I take it before bed, but forget by the morning. I wouldn't write myself a note until I was down to two, then finally make it to a pharmacy in the middle of nowhere, where they would have the generic or nothing at all and have to order it, and this would always happen to fall on a Friday somehow, so then I would have to wait until Monday and not take it for one or two nights.
The first time this happened, I was expecting to feel depressed. Instead, sleeping just got ten times harder. My dreams got more persistent, intense and disturbing. I did notice a drop in my mood but I was more concerned about the lack of sleep. On a good day I'm petty discombobulated, but without Remeron I get even more out of it and confused.
You would think, with such a big difference, I would learn after the first few times, but no. I keep running out. I think I've remembered twice out of the last ten or so times. I finally (now that we're settled again) switched it back to mail order, three months at a time, so it will no longer be up to my extremely efficient brain. But not in time to avoid it happening again this past weekend, of course. The first night I didn't have any, I just stayed up. My husband and I drank lots of caffeine, ate tons of cookies (Uqi's chocolate chip!!) and watched Stargate Atlantis. Between that and playing cards we managed to stay awake until around 2AM. My ploy sort of worked that night. I got up around 8 or 9 as usual so that I mostly skipped the dreaming phase that gets so much worse without Remeron.
I was feeling pretty smug (though more sleep deprived than usual) when I went to pick up my Remeron yesterday, until they told me that it hadn't come in and they couldn't get it until today. Feeling exasperated with myself for getting in this situation to begin with, I didn't try anything fancy last night, just got in bed and really wished that I hadn't.
I was looking at star charts like in Stargate SG-1 (which we started rewatching yesterday) when somebody came in with some fried chicken in a plastic bag and told me I was supposed to deliver it to this Buddhist monk. Apparently she lived at the top of this really steep hill even though we were supposedly in my extremely flat hometown. Actually it was more like a small mountain, with these crazy round boulders making it up. So I'm really hungry, climbing this weird mountain, sort of light-headed and trying to determine if a) the chicken is gluten-free and b) if it's okay to eat somebody else's lunch. I poke at the chicken and it seems GF so I try a piece. It's not tasty but it isn't poisonous either, so I keep eating it. I get up to this temple on this mountain and deliver the chicken and this monk lady is asking me all these really philosophical questions about stuff. I'm mostly just confused but sort of happy because the stuff she's talking about is interesting, but in the course of that I forget to deliver the chicken and just keep eating it. Then she sends me on my way and I'm wandering around my aunt's house seeing everything she's recently remodeled. Then a bunch of my cousins are there and we're taking my great aunt to see a newly flooded area of the city. It was clearly a highway before, but now the ocean is there, and a couple of highway bridges are acting like piers. We walk out on them, talking, and I'm telling them the whole city is going to be flooded soon.
So, this dream's not too bad, you're probably thinking. Well, then I feel pain in my mouth on the inside of my bottom lip. I get all annoyed thinking it's probably just something I accidentally bit as I was eating all the GF fried chicken. It's bleeding a lot and the blood tastes metallic like blood does. I start trying to find somewhere to spit it out because it tastes disgusting. It starts welling up more and more and gets all over my hands as I try to hold it inside my mouth. I find a dirty sink in an art class and spit the blood out into it, but it keeps coming and the texture turns really globby and clotted. The texture disgusts me even more and I just keep spitting it out, hoping it will stop. It tastes horrible and I feel nauseous.
It slows down a little, thankfully, but it tastes worse and worse, almost like rotting. In the sink, blood is mixed with old acrylic paint that many students have washed off of brushes. It makes a horrible, bloodstained rainbow.
Needless to say, I got up right away and went for the caffeine. I'm never under-appreciating my antidepressant again (until, you know, I forget about this whole thing in the next five minutes).
Wednesday, August 3, 2011
Confusing the Heck Out of Normal People
Well, our wedding went great, lots of people showed up and it was generally awesome. (Apparently the disasters stayed in the planning and once we got to Omaha, it was all fine.) Then, for our honeymoon we drove down to visit my hometown and then back up, slowly. All in all, it was a good break from real life, except for all the people thinking my husband is my wife because we hadn't told them about the whole trans thing yet. But we survived and even had a good time, talking or just being for all those hours of driving.
Some time on the last day, as we were heading up Illinois for five hours, we started tallying up everything we have to change our names on. The list ended up somewhat overwhelming. I had changed my last name and J had changed his first and middle via the marriage, and between us, all sorts of IDs, insurance things, and bank accounts were now outdated. So, as soon as we got home and minorly settled (as in, boxes piled everywhere in the downstairs of my in-laws' house instead of in the car and basement) we set out to start the process.
Our first stop was the DMV to update J's drivers' license and get me a non-driver ID to replace mine. The first person we managed to confuse was the information desk guy. We explained how we had changed our names due to marriage and needed new licenses in this state since we had moved. He was like, sure, and then we handed him our shiny marriage certificate. He blinked at it multiple times to make sure he was reading it right. Then he looked at J and back down at the proof that my husband has changed his name from a very feminine name to a male name. He asked us again just to make sure, then shrugged it off and got it set up.
Then desk guy explained that I need proof of residency in the state to get my new license, and I asked if it was the same for a non-driver ID. He said it was and then said quickly, "...but then you won't be able to drive!" And I was like, "yeah." And he was like, "You know you can't keep the license from the previous state if you do that, and you'll give up the right to drive." He went from skeptical to really confused when I said lightly, "yeah, I know." I didn't explain to him that I hadn't driven in two years and if I did, that it would be really dangerous and not worth the energy required anyhow. I mean, I look perfectly normal and I'm only 25.
So with that desk guy, we started our official Body Count, aka how many government officials we had confused so far: Me: 1, J: 1. We decided to keep score because really, how is it not hilarious? Plus, we're interested in who can raise the most eyebrows: the 25-year-old disabled girl or the guy getting a sex change. Who will win??
Next it was getting J's new photo, which I sadly missed because I was in the bathroom, but apparently it was really funny. The guy doing the photos for people was this really outgoing, chatty fellow who looked like somebody's friendly grandfather. Apparently he was super awkward trying to figure out how to address J, who hasn't yet started testosterone (next week!) and has a feminine-looking face, but dresses, talks and acts very male. So I missed that, and didn't get a shot at confusing that guy since I have to wait on my ID until I bring in proof of my address. That made the Body Count J: 2.
We sat and waited until we got called to finish the process, which was done by a strict-sounding and annoyed woman who decided to be suspicious at first rather than confused. She triple-checked that J wanted his whole name changed and was pretty short with us, but it was most likely just the long line. Then we were just waiting on it to get printed out, now with the score as J: 3, Me: 1. Finally, photo dude waves us over to avoid calling out J's new name which obviously weirds him out, lol. Sniggering, we left.
Our other stop of the day was the closest social security office. This time, we only spoke to one person who did both of ours. He was younger than the DMV people, or maybe just less easily ruffled, because when he saw J's old and new names, he only paused for slightly longer than normal in between sentences. We decided that didn't count, though, because it didn't even make him awkward. I got my second score of the day, however, when he asked me for my social security number and it took me ten minutes of close-eyed concentration to come up with this number I know very well and use pretty often. It probably didn't help that I was swaying off balance and speaking really vaguely since I had forgotten to bring a snack and was looking and feeling light-headed. He looked really worried about me and surprised, even after I came up with the number and managed to actually remember my mom's maiden name, etc, without missing a beat. So after those two stops, the score stands as Me: 2, J: 3. I'm optimistic, though, since I haven't gotten a chance at two of the three DMV counter people yet, that I may win. It's not every day a perfectly ordinary-looking young person trades in their right to drive, after all. But who knows. The sex change may win in the end. XD
Some time on the last day, as we were heading up Illinois for five hours, we started tallying up everything we have to change our names on. The list ended up somewhat overwhelming. I had changed my last name and J had changed his first and middle via the marriage, and between us, all sorts of IDs, insurance things, and bank accounts were now outdated. So, as soon as we got home and minorly settled (as in, boxes piled everywhere in the downstairs of my in-laws' house instead of in the car and basement) we set out to start the process.
Our first stop was the DMV to update J's drivers' license and get me a non-driver ID to replace mine. The first person we managed to confuse was the information desk guy. We explained how we had changed our names due to marriage and needed new licenses in this state since we had moved. He was like, sure, and then we handed him our shiny marriage certificate. He blinked at it multiple times to make sure he was reading it right. Then he looked at J and back down at the proof that my husband has changed his name from a very feminine name to a male name. He asked us again just to make sure, then shrugged it off and got it set up.
Then desk guy explained that I need proof of residency in the state to get my new license, and I asked if it was the same for a non-driver ID. He said it was and then said quickly, "...but then you won't be able to drive!" And I was like, "yeah." And he was like, "You know you can't keep the license from the previous state if you do that, and you'll give up the right to drive." He went from skeptical to really confused when I said lightly, "yeah, I know." I didn't explain to him that I hadn't driven in two years and if I did, that it would be really dangerous and not worth the energy required anyhow. I mean, I look perfectly normal and I'm only 25.
So with that desk guy, we started our official Body Count, aka how many government officials we had confused so far: Me: 1, J: 1. We decided to keep score because really, how is it not hilarious? Plus, we're interested in who can raise the most eyebrows: the 25-year-old disabled girl or the guy getting a sex change. Who will win??
Next it was getting J's new photo, which I sadly missed because I was in the bathroom, but apparently it was really funny. The guy doing the photos for people was this really outgoing, chatty fellow who looked like somebody's friendly grandfather. Apparently he was super awkward trying to figure out how to address J, who hasn't yet started testosterone (next week!) and has a feminine-looking face, but dresses, talks and acts very male. So I missed that, and didn't get a shot at confusing that guy since I have to wait on my ID until I bring in proof of my address. That made the Body Count J: 2.
We sat and waited until we got called to finish the process, which was done by a strict-sounding and annoyed woman who decided to be suspicious at first rather than confused. She triple-checked that J wanted his whole name changed and was pretty short with us, but it was most likely just the long line. Then we were just waiting on it to get printed out, now with the score as J: 3, Me: 1. Finally, photo dude waves us over to avoid calling out J's new name which obviously weirds him out, lol. Sniggering, we left.
Our other stop of the day was the closest social security office. This time, we only spoke to one person who did both of ours. He was younger than the DMV people, or maybe just less easily ruffled, because when he saw J's old and new names, he only paused for slightly longer than normal in between sentences. We decided that didn't count, though, because it didn't even make him awkward. I got my second score of the day, however, when he asked me for my social security number and it took me ten minutes of close-eyed concentration to come up with this number I know very well and use pretty often. It probably didn't help that I was swaying off balance and speaking really vaguely since I had forgotten to bring a snack and was looking and feeling light-headed. He looked really worried about me and surprised, even after I came up with the number and managed to actually remember my mom's maiden name, etc, without missing a beat. So after those two stops, the score stands as Me: 2, J: 3. I'm optimistic, though, since I haven't gotten a chance at two of the three DMV counter people yet, that I may win. It's not every day a perfectly ordinary-looking young person trades in their right to drive, after all. But who knows. The sex change may win in the end. XD
Friday, May 6, 2011
Disability Daily Activities Worksheet- My Answers
As mentioned in my last post, I've decided to take the long road of applying for disability in order to get insurance and hopefully a small amount of income. I'm still researching the process with my mom's help, so don't have a lot to tell you about it yet, but we found a worksheet that I've filled out explaining my condition. The form itself is copywritten, so I'm just going to copy and paste my answers to the questions to avoid getting in trouble.
So, here's more about my inability to work due to my severe narcolepsy... hopefully it helps someone to relate or understand. If you want the actual form, it's from http://www.disabilityfacts.com .
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1. TYPICAL MONTH. Please state how many good, fair, and bad days you have each month. (Consider a month to be 30 continuous days.)
a. Good Days -- days when you do well and complete all living and home care activities.
Total good days a month: 1 or 2
b. Fair Days -- days when you function with serious difficulty and fail to complete some living and home care activities. Total fair days in a month: about 21
c. Bad Days -- days when you function very poorly and fail to complete most living and home care activities. Total bad days a month: 4 or 5
d. In your own words please describe how the bad days and fair days are worse than the good ones.
On a good day, I can be mentally focused on productive activities for much of the day as long as I spend a lot of the day lying down. I will need to take a nap in the middle of the day for ten or twenty minutes and caffeinated tea might be required to keep me going. On fair days, that is, most of the time, I can do maybe one hour of activity before I need to lie down and take a break, and by the afternoon I have to stop all activity for the rest of the day as I’ve run out of energy. On a bad day, walking to another room exhausts me and I can’t do anything besides rest. If I try to push past and do things anyway, I end up bungling them up and needing to spend the entirety of the next day recovering.
e. Are there days when you don't go out because of your health? If yes, how many days a month does your health keep you in?
I stay in most of the time as my partner works and I can’t drive (I choose not to drive a car because I know I’m not awake enough to be a safe driver). In a typical month, I may have the energy to take my dogs on a short walk maybe 5 of the days if I’m lucky. Otherwise I only leave with my partner to run errands, during which I have trouble holding conversations without falling asleep and often leave the thinking and shopping up to J. Without my spouse, I would not feel safe leaving the house due to lack of alertness.
f. Compared with a year ago, are you functioning: Better? Worse? About the same?
I’ve been steadily getting worse for the past four years, after medication stopped working for me, even though I remained on it until a year ago when the side effects made it impossible for me to keep taking it.
2A. Do you have serious difficulty taking care of any personal needs, including the following, due to your medical condition?
Bathing, Shaving, Hair care, Dressing, Eating, Using the toilet, Getting to the toilet
I can manage these fine as long as I pace myself and only do one thing at a time.
Using stairs
Stairs have always been exhausting for me and I’ve learned to avoid them as much as possible. Going up or down just one flight makes me too tired to stand or walk much when I get to the other side. If I am forced to live in a house with stairs (which happens when visiting relatives for short or long term) I end up trapped on one floor, mustering the energy to go up or down only when in dire need (like when I get really hungry or need to go to bed).
Holding onto objects
I can do this fine when feeling my most awake, but the more tired or sleepy I am, the more I drop things that I pick up or knock things over while trying to reach for something. My hand-eye coordination is terrible.
Understanding/following instructions
I have a hard time with this; I usually have to ask for repeats, and sometimes I still forget before I can accomplish the task. Conversations of any kind are frustrating, exhausting and nerve-wracking for me, especially with people who I don’t know well or who don’t know I have narcolepsy.
Making decisions
When given several days or weeks, I’m excellent at making decisions, but any faster than that I panic because my mind works too slowly. I also easily overlook important factors in the decision and usually need to be reminded of them repeatedly. Even seemingly small or unimportant decisions are hard for me to make quickly; they still jamb my brain.
Doing things on time
Having deadlines is difficult for me because I never know when I’m going to have a bad day, so despite my best efforts, when I was in school I would often need extensions on projects. I have had enough trouble completing the work and keeping up on assignments that I have had to drop classes before, and this is one reason I don’t take any classes anymore.
Finishing things
I always finish what I start. The only thing is that it may take twice as long as someone else, sometimes months or years, because I have to pace myself and do a little bit at a time.
Using the telephone
I hate using the phone and my spouse does all of my “business” calls for me. I tend to fall asleep and have trouble keeping up with whomever I’m talking to, or I forget why I was calling in the first place, or I don’t remember a key piece of information. I remember visual information way better than audio, which tends to go in one ear and out the other, even when I’m concentrating. I only make casual phone calls, because my friends and family know about my condition and I don’t feel ashamed or embarrassed because they understand why I fall asleep or stop making sense while talking to them.
Personal business/finance
I can do any of this that doesn’t involve talking to people as long as I choose my more alert moments to do things like pay bills or check online accounts. Something that takes longer, like taxes, really takes my energy and I have to hand it over to my spouse when I get too tired to continue.
Caring for others
My spouse and I have four pets who I care for, though I often need help from J in order to get all of the chores done, and on bad days, he has to do everything and I can only provide companionship for them.
Visiting people, Shopping
During these activities I almost always end up napping (no matter how short an errand), whether leaning on a shopping cart or on my spouse on a friend’s couch. Whenever we shop, we get in and out quickly in order to get me back to where I can lie down. I don’t enjoy shopping with other people because I get tired from standing up and it loses its fun long before my friends get tired. When visiting people, I prefer sitting and talking informally or watching a movie because walking around is too taxing to do for fun.
Getting places
As stated earlier, I don’t drive or feel comfortable leaving my house without my spouse’s assistance. If I lived near a train or subway system I think I could handle that, especially if accompanied, but I don’t currently.
Recreation, Hobbies
I draw cartoons and make nature-themed crafts, but this is another activity that I can do for an hour at the most before I need to lie down and not move for awhile. Otherwise I find myself falling asleep on my sketchbook and making simple mistakes in everything I attempt. Because of this and the other chores I need to do every day, I only get to draw a couple of times a week and often don’t do crafts more than two or three times a month. Even reading a book requires me to be awake enough to resist falling asleep while I’m trying to absorb information and I have to limit my time doing that as well.
Group activities, like church or clubs
I avoid groups because it is hard for me to keep track of one or two people talking, much less more people than that. I have no intention of trying to meet people in this way.
Other activities? Describe:
Driving
I used to drive despite my condition because at first, I didn’t understand how much harder it is for me than others, and then later it was the only option for me before I moved in with my spouse. I can and will drive in an emergency for a short distance, but I don’t feel comfortable in any traffic and am terrified of highways because I can’t make the split-second decisions necessary to stay safe. I lack depth perception because of my constantly sleepy state and therefore find it incredibly difficult to tell distance between myself and other cars. This makes parking nearly impossible because I can’t tell how much space is between parked cars or if I have room to turn into. I don’t feel safe driving at speeds over 25 mph. Additionally, driving takes so much concentration for me to avoid a collision that when I reach my destination I immediately fall asleep and am too exhausted to accomplish what I needed to get there to do.
2B. Do you prepare or serve meals? If so, what meals do you do?
I have Celiac disease and soy intolerance in addition to narcolepsy, and therefore must prepare all of my meals myself or have them prepared by someone who knows how to avoid ingredients that make me ill.
(a) Breakfast. Describe what you do. How many days a month? Every day
I heat up leftovers or make gluten-free toast; if I’m feeling good that day, I might scramble some eggs. I usually try to keep breakfast easy as I’m not fully awake until after I’ve eaten and had caffeinated tea.
(b) Lunch. Describe what you do. How many days a month? Every day
I usually cook a fresh meal for lunch, as that’s my main meal, but on bad days I heat up a safe frozen dinner because I don’t have the energy to stand at the stove for long enough to cook. When I do cook, I usually make something with pasta or rice and vegetables. I’m careful to eat as much fresh food as I can because otherwise I end up feeling even more run down than I would anyway.
(c) Dinner. Describe what you do. How many days a month? Every day
I usually eat leftovers, snack food or something easy and frozen for dinner because I’m not usually hungry enough to cook anything and by the evening I’m almost always out of energy.
(d) Does anyone help with meals?
My spouse helps me cook (or rather, cooks for me) if I’m having a bad day and he is home. He also helps by mostly feeding himself so that I don’t need to worry about always cooking for him.
3. CARING FOR THE PLACE WHERE YOU LIVE.
a. Describe the home care activities you do regularly.
I vacuum, do laundry, wash dishes, keep the house organized, clean the litterbox for the cats and clean up stains and animal messes. I also keep our animals (two dogs and two cats) fed, watered and groomed. I spread these chores out pretty evenly over a week or two in order to get to them all (except feeding the animals, of course!).
b. Describe the home care activities which other people do around the place you live.
My spouse carries laundry for me, especially when stairs are involved, takes the dogs outside for their bathroom breaks, takes care of the yard, fixes things around the house and does anything that takes more energy than I have at the moment it needs to get done. He often picks up the slack when I’m too tired to clean something, feed the dogs or do other chores.
c. Describe any home care activities which need to be done, but do not get done because of your health.
I rarely get around to sweeping the floors or cleaning up after the dogs outside. I used to dust all the time but I never have the energy anymore. Laundry or dishes often build up quite a bit before I get to them.
d. Did you do things in the past that you don't do now due to your health?
I used to walk the dogs at least once a day myself, sometimes twice, but now I rarely am able to even take them around the block and leave their exercise to my spouse. Also, I used to be the only one in charge of feeding them twice a day; now I split that duty with my spouse or turn it over to him entirely.
D. WORK RELATED ACTIVITIES.
Do you have serious difficulty doing any of the following on a sustained basis?
Sitting, Standing, Walking, Crawling
I have trouble remaining awake while sitting and holding my upper body upright for more than maybe ten to fifteen minutes. When standing, I need to lean on something and even then I can only stand comfortably for a few minutes before I need to either move around or sit down. I have fallen asleep standing up, leaning my weight on the nearest wall before. Walking slowly, I can keep going for about ten minutes before I need to sit down. The longest I can stay on my feet at one time is probably half an hour, and that is with significant discomfort and concentrated effort. Crawling, as it requires my whole body, is more exhausting- I even avoid crawling across my bed if I can help it.
Lifting, Carrying, Crouching/squatting, Pushing/pulling with hands/legs, Reaching up, out, down
I can’t physically lift more than a couple of pounds with each hand. Using both arms, I can barely carry my 15 pound dachshund for a few minutes, and that makes me exhausted. I can’t lift much of anything above my head and am easily thrown off balance. I can crouch with one or both hands propping me up, but without them I fall forward. As for pushing and pulling, heavy doors require my full body to open. I have considerable force if I push with both legs. Reaching with my arms, especially down, often unbalances me and causes me to feel like I’m about to fall.
Working productively all day, every day, year round
This has never been possible for me, though I have tried to work part-time. All five of my attempts either ended at a set time, thus saving me from being fired, or I had to quit because I felt I couldn’t complete the tasks assigned me. Even something as simple as making photocopies was extremely stressful for me and I got taken off of that duty because I kept messing things up and getting confused. I tried to tutor English once, but I had to quit before I had been at it very long because I kept falling asleep in the middle of sessions and it was a struggle to keep my clients from realizing this. When sitting, I fall asleep; when standing, I get too fatigued to function after a short period of time. I’m a mess on the phone because of my memory problems and it’s difficult for me to keep track of anything in general. I enjoy cleaning, but it’s so physically demanding that I can’t do it for more than ten minutes at a time, and then it takes me an hour to recover. I can’t focus or concentrate in a reliable way and communicating with other people is frightening and stressful for me. I’ve looked into dog training, working from home and creating art to sell, but I can’t escape the fact that I simply don’t have the energy to sustain any activity long enough to make money doing it or meet any kind of schedule or deadline.
Functioning in bad environments (for example, risky places; environments of heat, cold, or humidity; those with pollutants, fumes, drafts, or irritants like noise or vibration)
I can’t function in these environments because I easily become ill, any distractions to my already limited concentration are disastrous (including any feelings of physical discomfort such as heat and cold), and I’m not alert enough to effectively deal with danger.
Other limitations? Describe:
Because of my gluten and soy intolerance, I find travel difficult as it is hard to find food I can safely eat that is made by anyone other than myself. I must carry safe food with me at all times if I don’t have a kitchen easily available, or locate one of three safe restaurants.
E. Anything else?
Because of all of the above mentioned limitations, I suffer from considerable anxiety when confronted with new situations or new people.
So, here's more about my inability to work due to my severe narcolepsy... hopefully it helps someone to relate or understand. If you want the actual form, it's from http://www.disabilityfacts.com .
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1. TYPICAL MONTH. Please state how many good, fair, and bad days you have each month. (Consider a month to be 30 continuous days.)
a. Good Days -- days when you do well and complete all living and home care activities.
Total good days a month: 1 or 2
b. Fair Days -- days when you function with serious difficulty and fail to complete some living and home care activities. Total fair days in a month: about 21
c. Bad Days -- days when you function very poorly and fail to complete most living and home care activities. Total bad days a month: 4 or 5
d. In your own words please describe how the bad days and fair days are worse than the good ones.
On a good day, I can be mentally focused on productive activities for much of the day as long as I spend a lot of the day lying down. I will need to take a nap in the middle of the day for ten or twenty minutes and caffeinated tea might be required to keep me going. On fair days, that is, most of the time, I can do maybe one hour of activity before I need to lie down and take a break, and by the afternoon I have to stop all activity for the rest of the day as I’ve run out of energy. On a bad day, walking to another room exhausts me and I can’t do anything besides rest. If I try to push past and do things anyway, I end up bungling them up and needing to spend the entirety of the next day recovering.
e. Are there days when you don't go out because of your health? If yes, how many days a month does your health keep you in?
I stay in most of the time as my partner works and I can’t drive (I choose not to drive a car because I know I’m not awake enough to be a safe driver). In a typical month, I may have the energy to take my dogs on a short walk maybe 5 of the days if I’m lucky. Otherwise I only leave with my partner to run errands, during which I have trouble holding conversations without falling asleep and often leave the thinking and shopping up to J. Without my spouse, I would not feel safe leaving the house due to lack of alertness.
f. Compared with a year ago, are you functioning: Better? Worse? About the same?
I’ve been steadily getting worse for the past four years, after medication stopped working for me, even though I remained on it until a year ago when the side effects made it impossible for me to keep taking it.
2A. Do you have serious difficulty taking care of any personal needs, including the following, due to your medical condition?
Bathing, Shaving, Hair care, Dressing, Eating, Using the toilet, Getting to the toilet
I can manage these fine as long as I pace myself and only do one thing at a time.
Using stairs
Stairs have always been exhausting for me and I’ve learned to avoid them as much as possible. Going up or down just one flight makes me too tired to stand or walk much when I get to the other side. If I am forced to live in a house with stairs (which happens when visiting relatives for short or long term) I end up trapped on one floor, mustering the energy to go up or down only when in dire need (like when I get really hungry or need to go to bed).
Holding onto objects
I can do this fine when feeling my most awake, but the more tired or sleepy I am, the more I drop things that I pick up or knock things over while trying to reach for something. My hand-eye coordination is terrible.
Understanding/following instructions
I have a hard time with this; I usually have to ask for repeats, and sometimes I still forget before I can accomplish the task. Conversations of any kind are frustrating, exhausting and nerve-wracking for me, especially with people who I don’t know well or who don’t know I have narcolepsy.
Making decisions
When given several days or weeks, I’m excellent at making decisions, but any faster than that I panic because my mind works too slowly. I also easily overlook important factors in the decision and usually need to be reminded of them repeatedly. Even seemingly small or unimportant decisions are hard for me to make quickly; they still jamb my brain.
Doing things on time
Having deadlines is difficult for me because I never know when I’m going to have a bad day, so despite my best efforts, when I was in school I would often need extensions on projects. I have had enough trouble completing the work and keeping up on assignments that I have had to drop classes before, and this is one reason I don’t take any classes anymore.
Finishing things
I always finish what I start. The only thing is that it may take twice as long as someone else, sometimes months or years, because I have to pace myself and do a little bit at a time.
Using the telephone
I hate using the phone and my spouse does all of my “business” calls for me. I tend to fall asleep and have trouble keeping up with whomever I’m talking to, or I forget why I was calling in the first place, or I don’t remember a key piece of information. I remember visual information way better than audio, which tends to go in one ear and out the other, even when I’m concentrating. I only make casual phone calls, because my friends and family know about my condition and I don’t feel ashamed or embarrassed because they understand why I fall asleep or stop making sense while talking to them.
Personal business/finance
I can do any of this that doesn’t involve talking to people as long as I choose my more alert moments to do things like pay bills or check online accounts. Something that takes longer, like taxes, really takes my energy and I have to hand it over to my spouse when I get too tired to continue.
Caring for others
My spouse and I have four pets who I care for, though I often need help from J in order to get all of the chores done, and on bad days, he has to do everything and I can only provide companionship for them.
Visiting people, Shopping
During these activities I almost always end up napping (no matter how short an errand), whether leaning on a shopping cart or on my spouse on a friend’s couch. Whenever we shop, we get in and out quickly in order to get me back to where I can lie down. I don’t enjoy shopping with other people because I get tired from standing up and it loses its fun long before my friends get tired. When visiting people, I prefer sitting and talking informally or watching a movie because walking around is too taxing to do for fun.
Getting places
As stated earlier, I don’t drive or feel comfortable leaving my house without my spouse’s assistance. If I lived near a train or subway system I think I could handle that, especially if accompanied, but I don’t currently.
Recreation, Hobbies
I draw cartoons and make nature-themed crafts, but this is another activity that I can do for an hour at the most before I need to lie down and not move for awhile. Otherwise I find myself falling asleep on my sketchbook and making simple mistakes in everything I attempt. Because of this and the other chores I need to do every day, I only get to draw a couple of times a week and often don’t do crafts more than two or three times a month. Even reading a book requires me to be awake enough to resist falling asleep while I’m trying to absorb information and I have to limit my time doing that as well.
Group activities, like church or clubs
I avoid groups because it is hard for me to keep track of one or two people talking, much less more people than that. I have no intention of trying to meet people in this way.
Other activities? Describe:
Driving
I used to drive despite my condition because at first, I didn’t understand how much harder it is for me than others, and then later it was the only option for me before I moved in with my spouse. I can and will drive in an emergency for a short distance, but I don’t feel comfortable in any traffic and am terrified of highways because I can’t make the split-second decisions necessary to stay safe. I lack depth perception because of my constantly sleepy state and therefore find it incredibly difficult to tell distance between myself and other cars. This makes parking nearly impossible because I can’t tell how much space is between parked cars or if I have room to turn into. I don’t feel safe driving at speeds over 25 mph. Additionally, driving takes so much concentration for me to avoid a collision that when I reach my destination I immediately fall asleep and am too exhausted to accomplish what I needed to get there to do.
2B. Do you prepare or serve meals? If so, what meals do you do?
I have Celiac disease and soy intolerance in addition to narcolepsy, and therefore must prepare all of my meals myself or have them prepared by someone who knows how to avoid ingredients that make me ill.
(a) Breakfast. Describe what you do. How many days a month? Every day
I heat up leftovers or make gluten-free toast; if I’m feeling good that day, I might scramble some eggs. I usually try to keep breakfast easy as I’m not fully awake until after I’ve eaten and had caffeinated tea.
(b) Lunch. Describe what you do. How many days a month? Every day
I usually cook a fresh meal for lunch, as that’s my main meal, but on bad days I heat up a safe frozen dinner because I don’t have the energy to stand at the stove for long enough to cook. When I do cook, I usually make something with pasta or rice and vegetables. I’m careful to eat as much fresh food as I can because otherwise I end up feeling even more run down than I would anyway.
(c) Dinner. Describe what you do. How many days a month? Every day
I usually eat leftovers, snack food or something easy and frozen for dinner because I’m not usually hungry enough to cook anything and by the evening I’m almost always out of energy.
(d) Does anyone help with meals?
My spouse helps me cook (or rather, cooks for me) if I’m having a bad day and he is home. He also helps by mostly feeding himself so that I don’t need to worry about always cooking for him.
3. CARING FOR THE PLACE WHERE YOU LIVE.
a. Describe the home care activities you do regularly.
I vacuum, do laundry, wash dishes, keep the house organized, clean the litterbox for the cats and clean up stains and animal messes. I also keep our animals (two dogs and two cats) fed, watered and groomed. I spread these chores out pretty evenly over a week or two in order to get to them all (except feeding the animals, of course!).
b. Describe the home care activities which other people do around the place you live.
My spouse carries laundry for me, especially when stairs are involved, takes the dogs outside for their bathroom breaks, takes care of the yard, fixes things around the house and does anything that takes more energy than I have at the moment it needs to get done. He often picks up the slack when I’m too tired to clean something, feed the dogs or do other chores.
c. Describe any home care activities which need to be done, but do not get done because of your health.
I rarely get around to sweeping the floors or cleaning up after the dogs outside. I used to dust all the time but I never have the energy anymore. Laundry or dishes often build up quite a bit before I get to them.
d. Did you do things in the past that you don't do now due to your health?
I used to walk the dogs at least once a day myself, sometimes twice, but now I rarely am able to even take them around the block and leave their exercise to my spouse. Also, I used to be the only one in charge of feeding them twice a day; now I split that duty with my spouse or turn it over to him entirely.
D. WORK RELATED ACTIVITIES.
Do you have serious difficulty doing any of the following on a sustained basis?
Sitting, Standing, Walking, Crawling
I have trouble remaining awake while sitting and holding my upper body upright for more than maybe ten to fifteen minutes. When standing, I need to lean on something and even then I can only stand comfortably for a few minutes before I need to either move around or sit down. I have fallen asleep standing up, leaning my weight on the nearest wall before. Walking slowly, I can keep going for about ten minutes before I need to sit down. The longest I can stay on my feet at one time is probably half an hour, and that is with significant discomfort and concentrated effort. Crawling, as it requires my whole body, is more exhausting- I even avoid crawling across my bed if I can help it.
Lifting, Carrying, Crouching/squatting, Pushing/pulling with hands/legs, Reaching up, out, down
I can’t physically lift more than a couple of pounds with each hand. Using both arms, I can barely carry my 15 pound dachshund for a few minutes, and that makes me exhausted. I can’t lift much of anything above my head and am easily thrown off balance. I can crouch with one or both hands propping me up, but without them I fall forward. As for pushing and pulling, heavy doors require my full body to open. I have considerable force if I push with both legs. Reaching with my arms, especially down, often unbalances me and causes me to feel like I’m about to fall.
Working productively all day, every day, year round
This has never been possible for me, though I have tried to work part-time. All five of my attempts either ended at a set time, thus saving me from being fired, or I had to quit because I felt I couldn’t complete the tasks assigned me. Even something as simple as making photocopies was extremely stressful for me and I got taken off of that duty because I kept messing things up and getting confused. I tried to tutor English once, but I had to quit before I had been at it very long because I kept falling asleep in the middle of sessions and it was a struggle to keep my clients from realizing this. When sitting, I fall asleep; when standing, I get too fatigued to function after a short period of time. I’m a mess on the phone because of my memory problems and it’s difficult for me to keep track of anything in general. I enjoy cleaning, but it’s so physically demanding that I can’t do it for more than ten minutes at a time, and then it takes me an hour to recover. I can’t focus or concentrate in a reliable way and communicating with other people is frightening and stressful for me. I’ve looked into dog training, working from home and creating art to sell, but I can’t escape the fact that I simply don’t have the energy to sustain any activity long enough to make money doing it or meet any kind of schedule or deadline.
Functioning in bad environments (for example, risky places; environments of heat, cold, or humidity; those with pollutants, fumes, drafts, or irritants like noise or vibration)
I can’t function in these environments because I easily become ill, any distractions to my already limited concentration are disastrous (including any feelings of physical discomfort such as heat and cold), and I’m not alert enough to effectively deal with danger.
Other limitations? Describe:
Because of my gluten and soy intolerance, I find travel difficult as it is hard to find food I can safely eat that is made by anyone other than myself. I must carry safe food with me at all times if I don’t have a kitchen easily available, or locate one of three safe restaurants.
E. Anything else?
Because of all of the above mentioned limitations, I suffer from considerable anxiety when confronted with new situations or new people.
Tuesday, May 3, 2011
Life Explosion
Well, life is settling back down again finally. We were able to borrow J's family's RV for this last month he's working at the high school here, and finally got moved into it and out of the hotel. The entire saga had us moving us and our pets no less than seven times in and out of hotels, our broken rental house (which our landlord kept trying to get fixed) and finally into the RV just a few days ago. Our stuff from the house is packed in boxes ready to be moved back to Wisconsin, where we're going to flee as soon as school ends and J is done teaching.
The RV, while crammed full of stuff and animals, at least doesn't smell like sewage and affect my sensitive immune system. It is also less area to keep clean than the house, though the one thing that was nice about the hotel was the fact that I didn't need to clean anything. This was a good thing because I've been completely flattened from exhaustion. Between the stress, parents poking us constantly and needing to keep everyone updated, the lack of fresh food (thank God for GF frozen dinners or I would have been even more screwed), long hours in the car and keeping everyone healthy and safe through the upheaval, it must have been the longest three weeks in existence. Various things forced me to do too much (like my fiance getting really sick for two days, during which I had to take care of him and even drive to Walmart once) and then it would take even longer than it normally would for me to recover.
In the middle of all of this, we had planned months earlier to go visit J's parents over Easter weekend seven hours away in Wisconsin. My parents were even flying up from Texas, as we wanted our parents to get to know each other better (they had only met once at graduation). The afternoon we were going to leave, we found out that the sewage situation was still not fixed when someone came to disinfect the drained basement and discovered new flooding. So we left, hoping to bring the RV back with us after the weekend was over.
Despite us being exhausted and feeling down on life, the visit with our parents went well and I was relieved at how relaxed my parents were. We had good long talks and caught up, my parents got to meet the horses and our big dog, who they had only seen pictures of before, and reunite with my dachshund, who they adore. We drove them around to show them the area and had dinner a couple of times. It was really good.
I don't know if I mentioned it yet, but my fiance got called in to talk to his boss, the principal, a couple of weeks ago in the middle of all this mess, to find out that he's not getting hired back next year. The principal said a few pretty critical things that had my fiance's confidence in his teaching pretty well shot through for awhile. The most aggravating part is that most of the man's argument is based on something one of the administrators messed up and blamed on J. What really got my fiance, though, was the word "unprofessional". He has to be female for work, but gets paralyzed by anxiety and depression if he dresses too female, so he has to go pretty androgynous and we suspect that's part of the principal's problem. The only thing is that J hasn't come out at work and doesn't plan to, and we have no proof of actual discrimination based on J not looking "female enough". It's just a vague suspicion that I have. At any rate, we just want to get out of that town. After the house problems, all the drama at the school and feeling like we can't go out without seeing lots of people who know J as female, we really just wanted to leave anyway.
For the summer we already had plans to return to J's parents' house to help his mom with taking care of the horses and to allow his parents to go on vacation. We've applied all over the country for English teacher positions, but we know we may not get anything for this next year. If we don't, it'll be a long stay with my in-laws again. I would love that except that the stairs there make my life extremely difficult. Honestly, we aren't sure what to do in J's career next. I hear a lot of transpeople have to switch careers in order to get free of their past life as the wrong gender, and in a career as conservative as public school teaching we aren't sure transitioning would be well-accepted. My man is very sensitive about how people think of him and I worry for him. We've been thinking about how to get his birth certificate changed, but that won't fix his reference letters (which refer to him as female), his social security number, or his college transcripts, which are all things schools look at when considering you. Also, the fact that we don't know what state we're going to be in doesn't help us come up with a clear plan of action as every state seems to have a different process for something as seemingly simple as changing your name. It's very bewildering and we aren't sure where to go from here.
Another thing that has us wondering is whether or not I'm going to have health insurance next year after my 26th birthday, when my dad's company stops being willing to cover me. We had thought, as we are getting married in July and assumed we would be in Iowa next year, that I could be on J's insurance which would at least help. But, if we move to any state where gay marriage isn't recognized or at least converted to a civil union (like Illinois), we aren't married anymore and I potentially lose the ability to have health insurance through my spouse. I've finally decided to try to get on disability because we need the income (my parents are still buying all of our food) as well as insurance, but that can take years and multiple rejections. Transitioning to a straight couple might turn out to be faster.
The good news is that (I think) I should have a pretty strong case. I've never been able to work even part-time, and my mom found a form that allows me to really go into detail about what is difficult for me. As soon as I finish it, I'm going to post it here, as I think it's useful for anyone researching narcolepsy, looking for something to relate to, or for anyone to fill out to use with their application. I started it wondering if I'm really "disabled", but by halfway through I realized that was silly. Hopefully, I can convince the government of this fact.
It's too gorgeous a day to not live in an RV. The first truly warm day we've had in awhile, with the sun shining, and despite everything I'm thankful to be here. I'm thankful to be anywhere.
The RV, while crammed full of stuff and animals, at least doesn't smell like sewage and affect my sensitive immune system. It is also less area to keep clean than the house, though the one thing that was nice about the hotel was the fact that I didn't need to clean anything. This was a good thing because I've been completely flattened from exhaustion. Between the stress, parents poking us constantly and needing to keep everyone updated, the lack of fresh food (thank God for GF frozen dinners or I would have been even more screwed), long hours in the car and keeping everyone healthy and safe through the upheaval, it must have been the longest three weeks in existence. Various things forced me to do too much (like my fiance getting really sick for two days, during which I had to take care of him and even drive to Walmart once) and then it would take even longer than it normally would for me to recover.
In the middle of all of this, we had planned months earlier to go visit J's parents over Easter weekend seven hours away in Wisconsin. My parents were even flying up from Texas, as we wanted our parents to get to know each other better (they had only met once at graduation). The afternoon we were going to leave, we found out that the sewage situation was still not fixed when someone came to disinfect the drained basement and discovered new flooding. So we left, hoping to bring the RV back with us after the weekend was over.
Despite us being exhausted and feeling down on life, the visit with our parents went well and I was relieved at how relaxed my parents were. We had good long talks and caught up, my parents got to meet the horses and our big dog, who they had only seen pictures of before, and reunite with my dachshund, who they adore. We drove them around to show them the area and had dinner a couple of times. It was really good.
I don't know if I mentioned it yet, but my fiance got called in to talk to his boss, the principal, a couple of weeks ago in the middle of all this mess, to find out that he's not getting hired back next year. The principal said a few pretty critical things that had my fiance's confidence in his teaching pretty well shot through for awhile. The most aggravating part is that most of the man's argument is based on something one of the administrators messed up and blamed on J. What really got my fiance, though, was the word "unprofessional". He has to be female for work, but gets paralyzed by anxiety and depression if he dresses too female, so he has to go pretty androgynous and we suspect that's part of the principal's problem. The only thing is that J hasn't come out at work and doesn't plan to, and we have no proof of actual discrimination based on J not looking "female enough". It's just a vague suspicion that I have. At any rate, we just want to get out of that town. After the house problems, all the drama at the school and feeling like we can't go out without seeing lots of people who know J as female, we really just wanted to leave anyway.
For the summer we already had plans to return to J's parents' house to help his mom with taking care of the horses and to allow his parents to go on vacation. We've applied all over the country for English teacher positions, but we know we may not get anything for this next year. If we don't, it'll be a long stay with my in-laws again. I would love that except that the stairs there make my life extremely difficult. Honestly, we aren't sure what to do in J's career next. I hear a lot of transpeople have to switch careers in order to get free of their past life as the wrong gender, and in a career as conservative as public school teaching we aren't sure transitioning would be well-accepted. My man is very sensitive about how people think of him and I worry for him. We've been thinking about how to get his birth certificate changed, but that won't fix his reference letters (which refer to him as female), his social security number, or his college transcripts, which are all things schools look at when considering you. Also, the fact that we don't know what state we're going to be in doesn't help us come up with a clear plan of action as every state seems to have a different process for something as seemingly simple as changing your name. It's very bewildering and we aren't sure where to go from here.
Another thing that has us wondering is whether or not I'm going to have health insurance next year after my 26th birthday, when my dad's company stops being willing to cover me. We had thought, as we are getting married in July and assumed we would be in Iowa next year, that I could be on J's insurance which would at least help. But, if we move to any state where gay marriage isn't recognized or at least converted to a civil union (like Illinois), we aren't married anymore and I potentially lose the ability to have health insurance through my spouse. I've finally decided to try to get on disability because we need the income (my parents are still buying all of our food) as well as insurance, but that can take years and multiple rejections. Transitioning to a straight couple might turn out to be faster.
The good news is that (I think) I should have a pretty strong case. I've never been able to work even part-time, and my mom found a form that allows me to really go into detail about what is difficult for me. As soon as I finish it, I'm going to post it here, as I think it's useful for anyone researching narcolepsy, looking for something to relate to, or for anyone to fill out to use with their application. I started it wondering if I'm really "disabled", but by halfway through I realized that was silly. Hopefully, I can convince the government of this fact.
It's too gorgeous a day to not live in an RV. The first truly warm day we've had in awhile, with the sun shining, and despite everything I'm thankful to be here. I'm thankful to be anywhere.
Saturday, March 26, 2011
I Must Be Insane
Oh Wait! I AM!
Well, I've been thinking a lot about this idea for over a year. It may be some crazy dream that won't happen, or else maybe I can end up contributing to the world, I don't know. I don't pretend that this is going to necessarily work out. But it's something I feel that I have to do.
I'm tired of going into the health section of bookstores and finding nothing about Narcolepsy or what it's like to experience this illness. I'm tired of keeping my feelings and thoughts in a small corner of the internet where only a small audience can find them, afraid to give this link to too many people I actually know. I'm also tired of "not contributing financially" to my family and getting crap for it. And so, for better or worse, I'm going to attempt something outrageous. I'm going to write a book.
I'm under no illusions about instant fame (HA) or even my slim chances of ever finding someone to publish such a thing. I make no promises, except that I'm going to write this thing and if no one else will have it, at the very least I can put it online somewhere and link you, my mysteriously interested small audience.
I have hope that I can get something interesting down because this has been stewing in the back of my mind for a year, and suddenly it's taken a sort of feverish hold on me. So there it is: my new project. A book about Narcolepsy.
Who the heck knows why my brain has grabbed onto this. All I know is that I know better than to ask. I'll just go with it, and see what happens.
Well, I've been thinking a lot about this idea for over a year. It may be some crazy dream that won't happen, or else maybe I can end up contributing to the world, I don't know. I don't pretend that this is going to necessarily work out. But it's something I feel that I have to do.
I'm tired of going into the health section of bookstores and finding nothing about Narcolepsy or what it's like to experience this illness. I'm tired of keeping my feelings and thoughts in a small corner of the internet where only a small audience can find them, afraid to give this link to too many people I actually know. I'm also tired of "not contributing financially" to my family and getting crap for it. And so, for better or worse, I'm going to attempt something outrageous. I'm going to write a book.
I'm under no illusions about instant fame (HA) or even my slim chances of ever finding someone to publish such a thing. I make no promises, except that I'm going to write this thing and if no one else will have it, at the very least I can put it online somewhere and link you, my mysteriously interested small audience.
I have hope that I can get something interesting down because this has been stewing in the back of my mind for a year, and suddenly it's taken a sort of feverish hold on me. So there it is: my new project. A book about Narcolepsy.
Who the heck knows why my brain has grabbed onto this. All I know is that I know better than to ask. I'll just go with it, and see what happens.
Friday, March 18, 2011
Bring On the Ice Cream
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.
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.
Tuesday, February 8, 2011
Therapy Cat vs. Tornado Movie Shoot Hospital
Well, the past couple of weeks my nightmares have been getting a lot worse again, but at least I have lots of furry moral support.
Last night it was tornadoes. I was a passenger in my mom's car, driving down the highway towards the beach in the area where I grew up. My mom was driving us to a hospital where she was going for work and I had tagged along. As we drove, the cloudy sky darkened menacingly, the deep grey clouds heavy and wet. It began to pour. We were almost there- I could see across the flat, grassy fields to the hospital complex, its windows lit up against the blackened sky. My mom cursed at the rain. On the horizon I saw one of the cloudy masses dip down to connect with the ground, swirling chaotically.
We sped into the parking garage of the hospital, and then suddenly we were in a big, well-lit open lobby surrounded by glass windows. The place was pretty empty, which made sense to me, because I now knew we were there to help shoot a movie. We power-walked through a dim hallway into what looked like an office. A bunch of people with cameras and boom mics and who looked like actors were hanging around there. There was an old golden retriever and a French bulldog who was wearing a frilly pink collar, apparently also ready for a part in the movie.
As the crew was setting things up, I looked out of the window and watched the heavy rain streak down the glass against the dark night. I leaned over to look straight down, and saw a small tornado headed right for the building we were in, about to take out the structure below us. I started shouting and yelling for all the people to run for the door at the opposite end of the suddenly large room.
I grabbed my mom's hand and we got through the crowded doorway, running in the group away from that side of the floor. I was terrified. I was pretty sure we were going to die.
We ran past a long wall of windows that faced one of the other buildings in the complex. As I watched, still running, the building folded in on itself and crashed to the ground in a pile of rubble, sheetrock dust rising, showing its insides. It looked straight out of 9/11 footage. I was scared and upset. We reached, suddenly, a giant open area that looked like a multi-level shopping mall, packed with people. We skidded to a stop, trying to figure out which way to go- four hallways split off. But suddenly, a deathly fire glow came shooting out of three of them, and everyone in there started screaming. We turned into the fourth hallway, which looked like it was underground. It turned into the hallways in a Japanese subway station.
I began to have hope that we might escape. And then, quite suddenly, I wasn't running for my life anymore, but blinking up at the ceiling of my bedroom.
Over the past week, as the dreams have gotten especially bad, one of our cats has started sleeping right next to me, leaning on me as if to offer comfort, as if she knows I need a hug. Normally, she's quite an elusive character and sometimes you can go all day without seeing her. Also, if you get up to go to the bathroom, she'll jump up from the bed as if offended, tail-twitching, and stalk off to the other room for the rest of the night. But this past week, instead she stays by me. She'll wait until I come back and get under the covers again, and then snuggle up close as soon as I'm comfortable.
I know she's doing it on purpose. In college, one of my housemates was having a really hard time, and this cat was always in her room next to her when she was home. The cat would sleep on top of her at night. It helped a lot. Now I think she's offering me the same favor.
Living with my girlfriend helps me a lot, even though she's a hard sleeper, because just having someone next to me makes me feel less afraid when I wake up in the night. Having our cat right against me is like getting a hug just when I need it. As soon as I wake up, she'll turn to look at me with sleepy eyes, whether or not I've moved yet, as if to ask, "Are you okay?"
Thank God for kitties. <3
Last night it was tornadoes. I was a passenger in my mom's car, driving down the highway towards the beach in the area where I grew up. My mom was driving us to a hospital where she was going for work and I had tagged along. As we drove, the cloudy sky darkened menacingly, the deep grey clouds heavy and wet. It began to pour. We were almost there- I could see across the flat, grassy fields to the hospital complex, its windows lit up against the blackened sky. My mom cursed at the rain. On the horizon I saw one of the cloudy masses dip down to connect with the ground, swirling chaotically.
We sped into the parking garage of the hospital, and then suddenly we were in a big, well-lit open lobby surrounded by glass windows. The place was pretty empty, which made sense to me, because I now knew we were there to help shoot a movie. We power-walked through a dim hallway into what looked like an office. A bunch of people with cameras and boom mics and who looked like actors were hanging around there. There was an old golden retriever and a French bulldog who was wearing a frilly pink collar, apparently also ready for a part in the movie.
As the crew was setting things up, I looked out of the window and watched the heavy rain streak down the glass against the dark night. I leaned over to look straight down, and saw a small tornado headed right for the building we were in, about to take out the structure below us. I started shouting and yelling for all the people to run for the door at the opposite end of the suddenly large room.
I grabbed my mom's hand and we got through the crowded doorway, running in the group away from that side of the floor. I was terrified. I was pretty sure we were going to die.
We ran past a long wall of windows that faced one of the other buildings in the complex. As I watched, still running, the building folded in on itself and crashed to the ground in a pile of rubble, sheetrock dust rising, showing its insides. It looked straight out of 9/11 footage. I was scared and upset. We reached, suddenly, a giant open area that looked like a multi-level shopping mall, packed with people. We skidded to a stop, trying to figure out which way to go- four hallways split off. But suddenly, a deathly fire glow came shooting out of three of them, and everyone in there started screaming. We turned into the fourth hallway, which looked like it was underground. It turned into the hallways in a Japanese subway station.
I began to have hope that we might escape. And then, quite suddenly, I wasn't running for my life anymore, but blinking up at the ceiling of my bedroom.
Over the past week, as the dreams have gotten especially bad, one of our cats has started sleeping right next to me, leaning on me as if to offer comfort, as if she knows I need a hug. Normally, she's quite an elusive character and sometimes you can go all day without seeing her. Also, if you get up to go to the bathroom, she'll jump up from the bed as if offended, tail-twitching, and stalk off to the other room for the rest of the night. But this past week, instead she stays by me. She'll wait until I come back and get under the covers again, and then snuggle up close as soon as I'm comfortable.
I know she's doing it on purpose. In college, one of my housemates was having a really hard time, and this cat was always in her room next to her when she was home. The cat would sleep on top of her at night. It helped a lot. Now I think she's offering me the same favor.
Living with my girlfriend helps me a lot, even though she's a hard sleeper, because just having someone next to me makes me feel less afraid when I wake up in the night. Having our cat right against me is like getting a hug just when I need it. As soon as I wake up, she'll turn to look at me with sleepy eyes, whether or not I've moved yet, as if to ask, "Are you okay?"
Thank God for kitties. <3
Friday, February 4, 2011
Memorable Hallucinations Caused By Narcolepsy
I recently typed up a couple of my more interesting hallucinations in sort-of story format and figured it would be helpful to post them here. I remember doing a flurry of internet research before I was diagnosed, trying to find out if what I was experiencing could be termed "hallucinations", and literally all I could find were schizophrenia-related ones. Because of the lack of information on hallucinations (or, rather, anything) caused by Narcolepsy, I began to be worried I might have schizophrenia. More proof that self-diagnosis via the internet is a bad idea sometimes. XD
So, here are a couple of mine, in the hopes that the next generation of people looking for this information might actually find something useful.
----------------------
I am in between, floating, when it happens.
It takes me completely off guard when it does. After all, all I was doing was lying perfectly still, waiting- letting my thoughts wander, watching faint images. The beginning of a dream had begun to form; something light-hearted about looking up at the sun from underwater, and a ghostly flying horse. Though my dream was beginning all on its own, I was still very involved in the process of trying to let go of my awareness. Prying my consciousness away from its moorings. This took a lot of effort for me and I had no inkling that this strange in-between state was unnatural.
I was focused on being completely relaxed and still. Calm--
Suddenly, from behind my head a hand shoots out, the fingers clamping down over my mouth, stifling my scream before it can begin. Pure terror and adrenaline shoot through me, putting me into instant panic. I struggle with everything I've got, desperate to escape. But the hand is extremely solid, strong and real; it doesn't so much as twitch or tighten, almost as if it was made of rock.
It is in that instant that I realize that every muscle in my body is frozen. I am struggling as hard as I can and nothing is moving. I'm helpless. I try harder, desperation growing--
My eyes open on my dark bedroom. Thoroughly freaked out, I jump up into a sitting position and whirl to face the wall. There is no one there. No hand. And there is not enough space for a whole human being to fit. I'm shaking as I reach for my lamp. I am alone after all.
------------------------
In the dream, I'm eating brownies. The bites are chewy and sweet and I can feel them sticking to my teeth and gums. They're so chocolatey and delicious that I can't stop eating them, even though my teeth begin to hurt. As I chew one piece, I encounter something hard all of a sudden. I pull it out of my mouth to see what it is. My hands are sticky and covered in chocolate.
As I examine my find, I realize it is a tooth. I feel my teeth with my tongue and sure enough, there is a space where it was. In real life this would have freaked me out, but in my dream I think it's cool. I can feel the space and my tongue is exploring the crevices of it. The feeling is fascinating.
Experimentally, I begin pushing on other teeth with my tongue, and several more come loose, still attached only by a vein each. I push them and play with them with my tongue, feeling the craggy surface of the bottom of each tooth. I push too hard and the veins begin to break, loosing the teeth into my mouth. I feel pain at the moment each breaks. Suddenly I remember that these are my adult teeth and no more will grow in. I begin to panic, wondering how much damage I've done, as my mouth feels literally filled with loose teeth. Moving my mouth causes a grating sound inside my head from all the loose teeth rubbing against each other.
My mouth hurts badly now and tastes of blood. I run over to a round mirror on the wall and open my mouth. A handful of teeth fall out and rattle as they land in the sink. The sink, my mouth and my hands are thick with blood, and it runs down my face.
And then I am awake, looking at the ceiling of my bedroom, with a lingering pain and the remembrance of the taste of blood in my mouth. The first thing I do is reach up to feel my teeth with my hand. All of them are still there. I go look in the mirror right away, just to make sure.
So, here are a couple of mine, in the hopes that the next generation of people looking for this information might actually find something useful.
----------------------
I am in between, floating, when it happens.
It takes me completely off guard when it does. After all, all I was doing was lying perfectly still, waiting- letting my thoughts wander, watching faint images. The beginning of a dream had begun to form; something light-hearted about looking up at the sun from underwater, and a ghostly flying horse. Though my dream was beginning all on its own, I was still very involved in the process of trying to let go of my awareness. Prying my consciousness away from its moorings. This took a lot of effort for me and I had no inkling that this strange in-between state was unnatural.
I was focused on being completely relaxed and still. Calm--
Suddenly, from behind my head a hand shoots out, the fingers clamping down over my mouth, stifling my scream before it can begin. Pure terror and adrenaline shoot through me, putting me into instant panic. I struggle with everything I've got, desperate to escape. But the hand is extremely solid, strong and real; it doesn't so much as twitch or tighten, almost as if it was made of rock.
It is in that instant that I realize that every muscle in my body is frozen. I am struggling as hard as I can and nothing is moving. I'm helpless. I try harder, desperation growing--
My eyes open on my dark bedroom. Thoroughly freaked out, I jump up into a sitting position and whirl to face the wall. There is no one there. No hand. And there is not enough space for a whole human being to fit. I'm shaking as I reach for my lamp. I am alone after all.
------------------------
In the dream, I'm eating brownies. The bites are chewy and sweet and I can feel them sticking to my teeth and gums. They're so chocolatey and delicious that I can't stop eating them, even though my teeth begin to hurt. As I chew one piece, I encounter something hard all of a sudden. I pull it out of my mouth to see what it is. My hands are sticky and covered in chocolate.
As I examine my find, I realize it is a tooth. I feel my teeth with my tongue and sure enough, there is a space where it was. In real life this would have freaked me out, but in my dream I think it's cool. I can feel the space and my tongue is exploring the crevices of it. The feeling is fascinating.
Experimentally, I begin pushing on other teeth with my tongue, and several more come loose, still attached only by a vein each. I push them and play with them with my tongue, feeling the craggy surface of the bottom of each tooth. I push too hard and the veins begin to break, loosing the teeth into my mouth. I feel pain at the moment each breaks. Suddenly I remember that these are my adult teeth and no more will grow in. I begin to panic, wondering how much damage I've done, as my mouth feels literally filled with loose teeth. Moving my mouth causes a grating sound inside my head from all the loose teeth rubbing against each other.
My mouth hurts badly now and tastes of blood. I run over to a round mirror on the wall and open my mouth. A handful of teeth fall out and rattle as they land in the sink. The sink, my mouth and my hands are thick with blood, and it runs down my face.
And then I am awake, looking at the ceiling of my bedroom, with a lingering pain and the remembrance of the taste of blood in my mouth. The first thing I do is reach up to feel my teeth with my hand. All of them are still there. I go look in the mirror right away, just to make sure.
Friday, January 14, 2011
My Narcolepsy Themed Art
Or, "Wolfies and Demons". :D
I got a comment from a fellow artist requesting that I post some art, and as I have been halfway planning to do this for some time, I figure, why not now? A lot of my art is quite relevant to this blog, as I'm constantly drawing things about my dreams and daily experiences with Narcolepsy, and those are the pieces I'm posting here. I find expressing the insanity and frustrations of my illness is a great way to cope. Also, the more humorously I express my feelings, the better I come to feel about the entire thing.
One thing that you have to know before you look at my art is that I'm an anthro or "furry" artist. That means I draw very character-driven art, and that my characters are half-human, half-animals. Furry art is pretty different from the mainstream, so I feel I have to explain it a little. Most furry artists have a "fursona," or furry character that represents themselves, and I am no exception. I almost always draw myself as a wolf person or werewolf (hence my blog pseudonym, "Wolfie"). My art is also quite cartoony, as per furry tradition, though not always as I also have quite a bit of classical training.
Also, you will see the signature along the bottom of each piece is blocked out. This is purely protective of my identity as I always put my real name there after scanning in my work. However, I want this blog to remain anonymous and separate from my other online identities for privacy reasons.
So, without further ado!
About the meds:
These two are both about Xyrem, and feeling like a nutcase for being on something so strong. I'm glad that these don't apply anymore, since I'm happy for now with just the Remeron.
About the Demon:
In addition to having a little wolf character who represents me, I also have a frightening demonic character who represents Narcolepsy itself. I heard a song once that had the line "like demons playing movies in my head" or something similar, and though I still can't find the song again, it made a big impression on me. I think that line is the best description I've found of what I experience when my brain throws dream/nightmare/hallucinations at me. And so, this is the demon who plays movies in my head.
Here's one of my more humorous drawings, of the demon kicking me in the butt. XD
In addition to frightening nightmares, I also have some pretty sweet vivid dreams that I like, so in this cg painting I was trying to express the interplay between the good dreams and bad. The white wolf-creature is a personification of the good things about my dreams, and is battling the nightmare-demon.
I've also been making dreamcatchers for a very long time (early attempts at preventative measures, lol), and this one I made with the above painting in mind:
The inner circle is about good dreams, and includes perfect weaving, pretty little trinkets (including a bell to represent sound), and shiny white ribbon. The outer circle is about nightmares, with uneven weaving and black leather, also interwoven with strange little objects. The hanging part incorporates both dirty bones and pristine white fluffy feathers, to show the intertwining of beautiful and disturbing that regularly shows up in my dreams.
Images From Actual Dreams I've Had:
I saw this dreamcatcher hanging in a room (well, my bedroom, actually) that was dripping with pipes covered in moss. When I woke up I jotted down the design, then actually made it to the best of my ability.
I dream about human skeletons a lot, which is unfortunate because I have a silly phobia of them. I don't know if the phobia of skeleton images came before or after dreaming about stumbling across them in my dreams, but weirdly, they seem to be everywhere in my dreamscapes. Whatever it means, I was excited to take an anatomy class a year or two ago and learn how to draw them so that I could a) attempt to overcome my fear and b) actually record some images from dreams that included them.
This piece is a combination of all the hallucinations I could remember having in high school in my old bedroom. It's actually a pretty clear pen drawing, but I like this blurry photograph of it more- it makes it more disturbing. :D And thus gives it more the feel that I wanted.
I also have some really cool beautiful dreams, from which single images have stood out so much that I've felt inspired.
The Baku:
And lastly, I recently discovered this awesome Japanese folklore creature that eats nightmares. I painted him on a piece of wood because I thought he was really cool, and, let's face it, I need all the help I can get, right? XD
The verse is from a song ("Darkness, Darkness" by Solas) and reads:
Darkness, darkness, be my pillow
Take my hand and let me sleep
In the coolness of your shadow
In the silence of your deep
And so, there you are. I have other pieces, but I figure this is long enough as it is. I'm sure there will be more later.
I got a comment from a fellow artist requesting that I post some art, and as I have been halfway planning to do this for some time, I figure, why not now? A lot of my art is quite relevant to this blog, as I'm constantly drawing things about my dreams and daily experiences with Narcolepsy, and those are the pieces I'm posting here. I find expressing the insanity and frustrations of my illness is a great way to cope. Also, the more humorously I express my feelings, the better I come to feel about the entire thing.
One thing that you have to know before you look at my art is that I'm an anthro or "furry" artist. That means I draw very character-driven art, and that my characters are half-human, half-animals. Furry art is pretty different from the mainstream, so I feel I have to explain it a little. Most furry artists have a "fursona," or furry character that represents themselves, and I am no exception. I almost always draw myself as a wolf person or werewolf (hence my blog pseudonym, "Wolfie"). My art is also quite cartoony, as per furry tradition, though not always as I also have quite a bit of classical training.
Also, you will see the signature along the bottom of each piece is blocked out. This is purely protective of my identity as I always put my real name there after scanning in my work. However, I want this blog to remain anonymous and separate from my other online identities for privacy reasons.
So, without further ado!
About the meds:
These two are both about Xyrem, and feeling like a nutcase for being on something so strong. I'm glad that these don't apply anymore, since I'm happy for now with just the Remeron.
About the Demon:
In addition to having a little wolf character who represents me, I also have a frightening demonic character who represents Narcolepsy itself. I heard a song once that had the line "like demons playing movies in my head" or something similar, and though I still can't find the song again, it made a big impression on me. I think that line is the best description I've found of what I experience when my brain throws dream/nightmare/hallucinations at me. And so, this is the demon who plays movies in my head.
Here's one of my more humorous drawings, of the demon kicking me in the butt. XD
In addition to frightening nightmares, I also have some pretty sweet vivid dreams that I like, so in this cg painting I was trying to express the interplay between the good dreams and bad. The white wolf-creature is a personification of the good things about my dreams, and is battling the nightmare-demon.
I've also been making dreamcatchers for a very long time (early attempts at preventative measures, lol), and this one I made with the above painting in mind:
The inner circle is about good dreams, and includes perfect weaving, pretty little trinkets (including a bell to represent sound), and shiny white ribbon. The outer circle is about nightmares, with uneven weaving and black leather, also interwoven with strange little objects. The hanging part incorporates both dirty bones and pristine white fluffy feathers, to show the intertwining of beautiful and disturbing that regularly shows up in my dreams.
Images From Actual Dreams I've Had:
I saw this dreamcatcher hanging in a room (well, my bedroom, actually) that was dripping with pipes covered in moss. When I woke up I jotted down the design, then actually made it to the best of my ability.
I dream about human skeletons a lot, which is unfortunate because I have a silly phobia of them. I don't know if the phobia of skeleton images came before or after dreaming about stumbling across them in my dreams, but weirdly, they seem to be everywhere in my dreamscapes. Whatever it means, I was excited to take an anatomy class a year or two ago and learn how to draw them so that I could a) attempt to overcome my fear and b) actually record some images from dreams that included them.
This piece is a combination of all the hallucinations I could remember having in high school in my old bedroom. It's actually a pretty clear pen drawing, but I like this blurry photograph of it more- it makes it more disturbing. :D And thus gives it more the feel that I wanted.
I also have some really cool beautiful dreams, from which single images have stood out so much that I've felt inspired.
The Baku:
And lastly, I recently discovered this awesome Japanese folklore creature that eats nightmares. I painted him on a piece of wood because I thought he was really cool, and, let's face it, I need all the help I can get, right? XD
The verse is from a song ("Darkness, Darkness" by Solas) and reads:
Darkness, darkness, be my pillow
Take my hand and let me sleep
In the coolness of your shadow
In the silence of your deep
And so, there you are. I have other pieces, but I figure this is long enough as it is. I'm sure there will be more later.
Tuesday, January 4, 2011
Why Soy Is Not For Me
I'm sure I've written about my soy intolerance before, but having a distinct lack of brain these days, I have no memory of the entry whatsoever. But, as soy is continuously making life irritating (or in my case, freaked out anxious) for me, I figure it's safe to repeat my feelings on the subject.
I got up this morning feeling much better and less gunky. The cold is mostly gone, and because of the lack of headache and the renewed ability to breathe, I actually slept pretty well last night. Aside from multiple dreams about almost drowning, that is, but what's new? So I woke up feeling (for me) refreshed and like I might be able to walk the dogs or clean the floors today- both things that really need to be done. I had a little bit of caffeine in my tea to get me going as usual, a smaller amount since my normal energy level is on its way to being restored.
My girlfriend is also almost recovered from the cold today, so she made breakfast for us both, an experiment with new hot cereal. She put flax and chia seeds in it and a little honey and rice milk. It tasted pretty good, but I didn't eat much of it because there wasn't a lot in the pan, and after the fact I can say I'm really glad.
Since I accidentally became mostly Buddhist (see previous entries), I've been paying lots of attention to my own body and emotional states. I feel like by intentionally watching myself, I notice when I'm being a jerk or neurotic or getting excessively angry, and because I can see it as it's happening I can change course before I do any real damage. This comes in handy when you have a mental or even physical problem in your body because you know right when you run out of energy, or you can see past anxiety and find its cause, and possibly find relief.
Well, as soon as I finished my little bowl of the cereal, my heart sped up and I got tense. My thoughts derailed into a roller coaster of "OMG I HAVE ALL THIS STUFF TO DO AAAAAAAAHHHH!!!" and my shoulders were like a rock. It took me a minute to make the connection, but it was pretty obvious, as this is exactly what always happens the minute I eat even traces of soy. Honestly, I've never met anyone else with this reaction to soy, but it's listed as one of the eight major allergens, so it must do something to a lot of other people. You can imagine how nuts I was going between when soy began to have this effect on me and when I figured out the cause: for most of a year I was constantly freaking out (I got diagnosed with generalized anxiety disorder by a therapist I was seeing) and finding ten other things to blame it on. Anxiety can be caused by so many things, including just life and stress, that it's hard to pin down. And it wears you out so bad, which sucks when you already have a much lower energy level than most of the people around you. At the time, taking Xyrem was also not helping the situation.
As a usually pretty relaxed person, the reaction I have to soy is pretty extreme, so I can usually tell as I'm eating whatever it is. The pain I get from eating gluten happens similarly quickly, which is nice because it means these days I rarely eat a lot of either substance before figuring out I need to stop. But as someone who has to avoid both gluten and soy, it's tough. At least half of the new tasty-looking things I find labeled gluten-free at the grocery store turn out to have soy in them. Before I could cook very well, it was murder. You find delicious-looking cookies only to see that lovely "CONTAINS: SOY" on the back, and anything containing chocolate you can forget.
I have to say, life is much easier since the required allergen labeling came into effect. Wheat and soy both have to be declared really obviously on the label, and it's handy. It used to be I would get something that looked perfectly safe and try it, and have to have one or both types of reaction before knowing it "may contain traces". Since the labels changed I've seen a huge decrease in how often I have gluten or soy reactions, and at least nowadays it's usually my fault for misreading the label.
And, because I know the suspense is killing you, yes, it seems the chia seed came from a "facility that also processes products containing soy", which explains it nicely. Time to go raid the fridge for a better breakfast...
I got up this morning feeling much better and less gunky. The cold is mostly gone, and because of the lack of headache and the renewed ability to breathe, I actually slept pretty well last night. Aside from multiple dreams about almost drowning, that is, but what's new? So I woke up feeling (for me) refreshed and like I might be able to walk the dogs or clean the floors today- both things that really need to be done. I had a little bit of caffeine in my tea to get me going as usual, a smaller amount since my normal energy level is on its way to being restored.
My girlfriend is also almost recovered from the cold today, so she made breakfast for us both, an experiment with new hot cereal. She put flax and chia seeds in it and a little honey and rice milk. It tasted pretty good, but I didn't eat much of it because there wasn't a lot in the pan, and after the fact I can say I'm really glad.
Since I accidentally became mostly Buddhist (see previous entries), I've been paying lots of attention to my own body and emotional states. I feel like by intentionally watching myself, I notice when I'm being a jerk or neurotic or getting excessively angry, and because I can see it as it's happening I can change course before I do any real damage. This comes in handy when you have a mental or even physical problem in your body because you know right when you run out of energy, or you can see past anxiety and find its cause, and possibly find relief.
Well, as soon as I finished my little bowl of the cereal, my heart sped up and I got tense. My thoughts derailed into a roller coaster of "OMG I HAVE ALL THIS STUFF TO DO AAAAAAAAHHHH!!!" and my shoulders were like a rock. It took me a minute to make the connection, but it was pretty obvious, as this is exactly what always happens the minute I eat even traces of soy. Honestly, I've never met anyone else with this reaction to soy, but it's listed as one of the eight major allergens, so it must do something to a lot of other people. You can imagine how nuts I was going between when soy began to have this effect on me and when I figured out the cause: for most of a year I was constantly freaking out (I got diagnosed with generalized anxiety disorder by a therapist I was seeing) and finding ten other things to blame it on. Anxiety can be caused by so many things, including just life and stress, that it's hard to pin down. And it wears you out so bad, which sucks when you already have a much lower energy level than most of the people around you. At the time, taking Xyrem was also not helping the situation.
As a usually pretty relaxed person, the reaction I have to soy is pretty extreme, so I can usually tell as I'm eating whatever it is. The pain I get from eating gluten happens similarly quickly, which is nice because it means these days I rarely eat a lot of either substance before figuring out I need to stop. But as someone who has to avoid both gluten and soy, it's tough. At least half of the new tasty-looking things I find labeled gluten-free at the grocery store turn out to have soy in them. Before I could cook very well, it was murder. You find delicious-looking cookies only to see that lovely "CONTAINS: SOY" on the back, and anything containing chocolate you can forget.
I have to say, life is much easier since the required allergen labeling came into effect. Wheat and soy both have to be declared really obviously on the label, and it's handy. It used to be I would get something that looked perfectly safe and try it, and have to have one or both types of reaction before knowing it "may contain traces". Since the labels changed I've seen a huge decrease in how often I have gluten or soy reactions, and at least nowadays it's usually my fault for misreading the label.
And, because I know the suspense is killing you, yes, it seems the chia seed came from a "facility that also processes products containing soy", which explains it nicely. Time to go raid the fridge for a better breakfast...
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
Friday, December 3, 2010
How Many Narcoleptics Does It Take To Do Interior Decorating?
Hi again! It's been ages, I know. But before I launch into The Life Summary Of Stuff, I feel like I should explain the title.
You'd think I learned from the whole lightbulb experience, but what can we say. My girlfriend (now fiancee) and I have a rented house now, and me being my artistic self, I always want it to look interestingly decorated. Her being her, she gets tired of having the furniture the same all the time and has tons of fun finding new ways to rearrange everything as often as possible, which then gets me rearranging everything on the walls to match.
Most of the time I manage just fine with tacks: I have unframed paintings on canvases that can just sit on them, and lots of dreamcatchers that tacks are perfect for. But every so often I do have something more complicated than that.
And so, I find myself precariously perched on a stool and an armchair, swaying dangerously, trying to hold up a framed drawing to the wall to see where I should put in the nail. Of course it's the kind of frame that has a little notch in the middle of the back that you are expected to (somehow) fit over a nail in exactly the right way so that the thing doesn't fall off on you. I figure out where I need to put in the nail, which I have ready in an attempt to only have to get up on the stool once (a somewhat dangerous operation in which I have to arrange feet and weight properly), so I go ahead and put it in. Now somewhat tired from holding up a hammer over my head, I sit that down and get the frame. I hold it over my head, which is difficult because it's heavy, and attempt to peer into the space between it and the wall in order to carefully slide the slot over it, which is pretty hard without depth perception- I can't tell where anything is unless it's right in line with the angle I'm looking at it. I try this about ten separate times, only to have the frame slide off each time. By now my arm hurts. Then it occurs to me that I probably nailed the nail in too far so it doesn't catch on the frame like it's supposed to, so I pull it out more and keep trying. Several minutes later I realize the nail itself is too small- it isn't going to stick out far enough. So I get down (now exhausted and sore) and go get a bigger nail.
This time it works as soon as I get the nail in, fortunately, because it's all I can do to hold up the hammer and the painting each one more time. Sometimes I can be pretty silly about wanting to finish something in one sitting...
So the answer is, one Narcoleptic, but you'd think she'd learn to take a nap in the middle.
Well, a lot has happened since I was here last. My girlfriend got hired for a part-time high school teaching post in middle of nowhere, Iowa. She drove out on a Thursday (it was seven hours away), got interviewed on Friday, was given the offer at the interview, which she accepted, then drove back that afternoon, knowing she was starting a week later. And then insanity ensued, eventually ending up with us here the day before she was to start inservice days, in a borrowed RV with our two dogs, living at a campground until we could locate someplace to rent.
Several months later, it's all settled down, just like the snow, which is currently blanketing everything and looking spectacular. Part of my reason for leaving this blog was that I ran out of stories for the time, but now I have a whole bunch lined up again. So I'm not going to spoil them all in one post. :D I'm doing fine, though, better in some ways then others. Overall life is good.
Stay tuned... XD
You'd think I learned from the whole lightbulb experience, but what can we say. My girlfriend (now fiancee) and I have a rented house now, and me being my artistic self, I always want it to look interestingly decorated. Her being her, she gets tired of having the furniture the same all the time and has tons of fun finding new ways to rearrange everything as often as possible, which then gets me rearranging everything on the walls to match.
Most of the time I manage just fine with tacks: I have unframed paintings on canvases that can just sit on them, and lots of dreamcatchers that tacks are perfect for. But every so often I do have something more complicated than that.
And so, I find myself precariously perched on a stool and an armchair, swaying dangerously, trying to hold up a framed drawing to the wall to see where I should put in the nail. Of course it's the kind of frame that has a little notch in the middle of the back that you are expected to (somehow) fit over a nail in exactly the right way so that the thing doesn't fall off on you. I figure out where I need to put in the nail, which I have ready in an attempt to only have to get up on the stool once (a somewhat dangerous operation in which I have to arrange feet and weight properly), so I go ahead and put it in. Now somewhat tired from holding up a hammer over my head, I sit that down and get the frame. I hold it over my head, which is difficult because it's heavy, and attempt to peer into the space between it and the wall in order to carefully slide the slot over it, which is pretty hard without depth perception- I can't tell where anything is unless it's right in line with the angle I'm looking at it. I try this about ten separate times, only to have the frame slide off each time. By now my arm hurts. Then it occurs to me that I probably nailed the nail in too far so it doesn't catch on the frame like it's supposed to, so I pull it out more and keep trying. Several minutes later I realize the nail itself is too small- it isn't going to stick out far enough. So I get down (now exhausted and sore) and go get a bigger nail.
This time it works as soon as I get the nail in, fortunately, because it's all I can do to hold up the hammer and the painting each one more time. Sometimes I can be pretty silly about wanting to finish something in one sitting...
So the answer is, one Narcoleptic, but you'd think she'd learn to take a nap in the middle.
Well, a lot has happened since I was here last. My girlfriend got hired for a part-time high school teaching post in middle of nowhere, Iowa. She drove out on a Thursday (it was seven hours away), got interviewed on Friday, was given the offer at the interview, which she accepted, then drove back that afternoon, knowing she was starting a week later. And then insanity ensued, eventually ending up with us here the day before she was to start inservice days, in a borrowed RV with our two dogs, living at a campground until we could locate someplace to rent.
Several months later, it's all settled down, just like the snow, which is currently blanketing everything and looking spectacular. Part of my reason for leaving this blog was that I ran out of stories for the time, but now I have a whole bunch lined up again. So I'm not going to spoil them all in one post. :D I'm doing fine, though, better in some ways then others. Overall life is good.
Stay tuned... XD
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.
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.
Tuesday, April 13, 2010
Totally Drained
What a crazy weekend. My girlfriend and I flew to my home state of Texas so she could go to a job fair for teachers there. I don't know if I've mentioned on here (since I've been neglecting my blog horribly) that we've decided to move there in July. We made that decision based on a number of things, including the fact that if we stayed up north for another winter I might freeze into a human popsicle, but also because she's ready for somewhere new and different to live. And my hometown has the advantage of lots of connections (I have a huge extended family), parental support, and lots of school districts for her to apply to. So far we've found one summer school and five full time job openings there and she's applied to all of them. We were a little worried about when we could start apartment hunting since we may not know if she's hired until the summer, until we looked things up and crunched some numbers and realized that actually she could support us by being a substitute teacher if she doesn't get any of the other jobs. We would still rather for sure be okay, however, so we went down for the job fair, figuring it might give her an edge on her first choice full time position.
We left on Friday and said goodbye to our cats, dogs and horses. My girlfriend's mom looked after them while we were gone. The trip there went fine and we got to catch up with my parents (who I hadn't seen since January). It was really, really good to see them. On Saturday my girlfriend went to the job fair, which was pretty intimidating but went well. Apparently it was packed with people. She left her resume with a bunch of schools, even though only one in that district was hiring for English, so if something opens up they might remember her.
Right after that we went to look at an apartment complex that we found online. It's affordable but really nice and has great outdoor spaces for the dogs- and us- to enjoy. We liked it a lot and found out they had the perfect apartment available. It's exactly the right size for us and the perfect layout- it even has a well-lit space for my art desk. Plus it's on the ground floor, which was important because stairs are exhausting for me. They only allow two pets, which at first made me unhappy. But my girlfriend made the point that our cats could stay with her mom until our third college roommate could take them. She's their favorite person on the planet, and loves cats more than anything. So I think it will work out. The more I think about it, the more I realize that being in charge of two cats and two dogs during the day has been pretty exhausting. As much as I love them, I think our friend could take better care of our cats, leaving me with more energy to enjoy being with the dogs. The apartment has been put on hold for us and we're filling out the application tonight. It's very exciting and takes a load of my mind that we have someplace to live lined up.
After that we went and visited one of my high school friends briefly, then went out to dinner with my parents. By the time we got back to their house we were both flattened. Even though I slept in during the job fair, I still way overdid it on Saturday. But it was worth it for how much we got to do and it was our only day there after all.
On Sunday I woke up with no energy whatsoever. My mom drove us to the airport in the morning. I spent the wait for our flight in a total daze, and my girlfriend wasn't any better off- she had eaten something at the restaurant that bothered her stomach and felt nasty the whole way home. Even after sitting on the plane and napping for most of the three hour flight, I was so tired I was having trouble putting one foot in front of the other when we got off the plane. Then, to make things even better, we got lost looking for the train. It took most of a Starbucks tea to wake me up enough just to walk. Eventually we found the train. I slept. We got on a bus to the parking lot where our car was. When we finally reached it we still had over another hour of driving to do to get to the middle of nowhere where we live. My girlfriend needed caffeine in order to drive because she was so tired. We made it back after a stop at the grocery store (since we had no food at home). The dogs were in the front yard and very happy to see us. We went to bed early.
Yesterday I didn't feel any better. I was so tired I couldn't do any cleaning- I just read a book all day, or slept. I didn't feel up to doing the stairs, but my girlfriend's mom helped me by putting the dogs outside. I fell asleep on the table several times. The cats didn't mind; they were very clingy because they were happy I was back. I stayed upstairs all day.
Today I'm definitely still recovering. I've been able to do some cleaning, though, and I haven't been falling asleep when I'm concentrating on staying awake. I can do the stairs again, just not quite as much as usual. I'm looking forward to living somewhere without stairs. Hopefully I'll be back to my normal amount of lack of energy tomorrow.
We left on Friday and said goodbye to our cats, dogs and horses. My girlfriend's mom looked after them while we were gone. The trip there went fine and we got to catch up with my parents (who I hadn't seen since January). It was really, really good to see them. On Saturday my girlfriend went to the job fair, which was pretty intimidating but went well. Apparently it was packed with people. She left her resume with a bunch of schools, even though only one in that district was hiring for English, so if something opens up they might remember her.
Right after that we went to look at an apartment complex that we found online. It's affordable but really nice and has great outdoor spaces for the dogs- and us- to enjoy. We liked it a lot and found out they had the perfect apartment available. It's exactly the right size for us and the perfect layout- it even has a well-lit space for my art desk. Plus it's on the ground floor, which was important because stairs are exhausting for me. They only allow two pets, which at first made me unhappy. But my girlfriend made the point that our cats could stay with her mom until our third college roommate could take them. She's their favorite person on the planet, and loves cats more than anything. So I think it will work out. The more I think about it, the more I realize that being in charge of two cats and two dogs during the day has been pretty exhausting. As much as I love them, I think our friend could take better care of our cats, leaving me with more energy to enjoy being with the dogs. The apartment has been put on hold for us and we're filling out the application tonight. It's very exciting and takes a load of my mind that we have someplace to live lined up.
After that we went and visited one of my high school friends briefly, then went out to dinner with my parents. By the time we got back to their house we were both flattened. Even though I slept in during the job fair, I still way overdid it on Saturday. But it was worth it for how much we got to do and it was our only day there after all.
On Sunday I woke up with no energy whatsoever. My mom drove us to the airport in the morning. I spent the wait for our flight in a total daze, and my girlfriend wasn't any better off- she had eaten something at the restaurant that bothered her stomach and felt nasty the whole way home. Even after sitting on the plane and napping for most of the three hour flight, I was so tired I was having trouble putting one foot in front of the other when we got off the plane. Then, to make things even better, we got lost looking for the train. It took most of a Starbucks tea to wake me up enough just to walk. Eventually we found the train. I slept. We got on a bus to the parking lot where our car was. When we finally reached it we still had over another hour of driving to do to get to the middle of nowhere where we live. My girlfriend needed caffeine in order to drive because she was so tired. We made it back after a stop at the grocery store (since we had no food at home). The dogs were in the front yard and very happy to see us. We went to bed early.
Yesterday I didn't feel any better. I was so tired I couldn't do any cleaning- I just read a book all day, or slept. I didn't feel up to doing the stairs, but my girlfriend's mom helped me by putting the dogs outside. I fell asleep on the table several times. The cats didn't mind; they were very clingy because they were happy I was back. I stayed upstairs all day.
Today I'm definitely still recovering. I've been able to do some cleaning, though, and I haven't been falling asleep when I'm concentrating on staying awake. I can do the stairs again, just not quite as much as usual. I'm looking forward to living somewhere without stairs. Hopefully I'll be back to my normal amount of lack of energy tomorrow.
Thursday, April 8, 2010
A Poetry Phase? You've Got To Be Kidding Me
Apparently I'm going through a poetry writing phase. Of all things to happen to me, this is really, really weird. I'm pretty much used to my brain throwing weird stuff at me at this point, but a poetry phase tops it all. Let's start at the beginning, shall we?
I have a very staunch history of hating poetry, starting in the eighth grade when I was completely traumatized during an entire poetry unit. My English teacher made us analyze and write poetry until I was totally sick of it, and I was terrible at it which didn't help. It was horrible- I wrote so many obviously sucky poems, with no idea how to come up with anything better, and the worst (and now, most amusing) part was our final project. We had to write several poems and write five paragraph essays analyzing them. I have very amusing memories of going over to my best friend's house right before it was due and trying very hard to come up with something that you could concievably write five paragraphs about. What I ended up with was (something like) the following:
I hate homework,
It's not any fun,
I hate homework,
I can't get it done.
And then I proceeded to write five paragraphs (very short ones, mind you), throwing in as many devices from my list as I could possibly pretend were there in an attempt to not fail the unit. And I got a pretty crappy grade, but it was kind of impressive it wasn't any worse and believe me, it wasn't from lack of trying.
Ever since I've had a sort of automatic "UGH!" reaction any time anyone says the word "poetry". I didn't go near it again until my senior year of high school, when I finally had a good English teacher. I was still beyond me, however- I failed multiple essays because I completely missed the point of whatever we were supposed to analyze. So to me, poetry has always been something to avoid at all costs. Not something for me to be writing out of the blue- all the time.
It may have been about a month ago when it started trying to seep out of me. I was writing a note to my girlfriend and thought it would be funny to make up a poem from our notoriously emo black cat's point of view. So I wrote a ridiculous-on-purpose angsty cat poem. The next day I thought it would be funny for our other cat to write something, and ended up writing something from our big dog about our little dog, too. It seemed like a pretty funny joke. But I'd started creating a monster without realizing it yet.
My girlfriend, being the biggest English nerd on the planet, has a bunch of books about writing and how to get started with it. We started reading one and doing the activities as something amusing to do in the evenings to relax. So one night the activity was to write for ten minutes about anything and not be bound by any rules other than the time limit. You were just supposed to follow your stream of thought and see where it would go. My girlfriend ended up with a pretty long and complete short story that, once started in that ten minutes, consumed the rest of her spring break because it was so desperate to get on paper. I ended up with poetry. The first couple sucked a lot- even I could tell that. But then, once I got going, it got pretty cool. It shouldn't surprise anyone that it ended up mostly about narcolepsy and occasionally about horrible creepy things. Go figure.
And I haven't been able to stop since then. At least a couple come out every day, mostly about whatever is going on at the time- our animals, food, or things I have trouble with because I have narcolepsy. I'm still pretty weirded out by the whole poetry thing, but who knows... I might as well go with it.
Here are the ones I have so far that I actually like. Feel free to criticize- I have no idea what's actually good and what actually kind of sucks, though I'm finding I can usually tell when something really sucks. I'll spare y'all those. Oh, and they don't have titles, and they're all one stanza (apparently), so the spaces separate different ones- don't read it as one thing. And lastly, I officially apologize to anyone who hates poetry as much as I (usually) do, lol.
About narcolepsy:
I'm sleepy
Thoughts drifting
On an open-window-breeze
Flowing gently back and forth
A breath of a storm
Something dark lurks, waiting
As my consciousness drifts, helpless
Airy, feathered
The hidden monster
Deep teeth
Ready to spring and consume
To drown
In fear
In dreams
Tail lashing
Forked tongue lashing
Striking without warning
From floating comes sinking
Sucking
Down into depths
Feeling like oceans
Cold clinging
No escape
Words
Come flowing
Tripping, dripping
Dipping into my memory
Searching
For meaning
Hidden
Under rocks
Behind bushes
Inside streams
Among fish
Fishing for words
Encased in ice
In little huts on a lonely lake
In winter
Not my season for words
Cracks
In my head
Thoughts slip through
Unbidden, fall away
Dissolve
Become nothing
Are lost.
Searching,
I cannot recall them.
They are gone.
But perhaps
There will be new thoughts
And that is enough.
Life:
Waiting, impatiently
Aroma wafting my way
I fidget, lick lips
Hungry for trying the latest
Concoction
Sitting, bored, writing
To pass the time
Until it is cool
And tongue is not burned
Mysterious orange sauce
Sleeping cats
Rise and fall
Of fuzzy chest
Fluffy tail
Dark ear
Together a yin yang
A balance
Light and Dark
Male and Female
Entwined in peace
Asleep
In their forms
You can see Love
Other stuff:
Shard of wood burning
Intense blue
So yellow it's white
Edges
Glowing within
Like those eyes
Thunder screaming
Shouting its words
Raining its tears
Choking the sky
The ground, the earth
Nourishing, hunting
Crying
Booming
Crashes against ears
Of all shapes and sizes
Paralyzing
Drowning
Loving
Holding
Rain
So there you have it. Weird poetry from me! And there will probably be more. Be afraid! Be very afraid...
I have a very staunch history of hating poetry, starting in the eighth grade when I was completely traumatized during an entire poetry unit. My English teacher made us analyze and write poetry until I was totally sick of it, and I was terrible at it which didn't help. It was horrible- I wrote so many obviously sucky poems, with no idea how to come up with anything better, and the worst (and now, most amusing) part was our final project. We had to write several poems and write five paragraph essays analyzing them. I have very amusing memories of going over to my best friend's house right before it was due and trying very hard to come up with something that you could concievably write five paragraphs about. What I ended up with was (something like) the following:
I hate homework,
It's not any fun,
I hate homework,
I can't get it done.
And then I proceeded to write five paragraphs (very short ones, mind you), throwing in as many devices from my list as I could possibly pretend were there in an attempt to not fail the unit. And I got a pretty crappy grade, but it was kind of impressive it wasn't any worse and believe me, it wasn't from lack of trying.
Ever since I've had a sort of automatic "UGH!" reaction any time anyone says the word "poetry". I didn't go near it again until my senior year of high school, when I finally had a good English teacher. I was still beyond me, however- I failed multiple essays because I completely missed the point of whatever we were supposed to analyze. So to me, poetry has always been something to avoid at all costs. Not something for me to be writing out of the blue- all the time.
It may have been about a month ago when it started trying to seep out of me. I was writing a note to my girlfriend and thought it would be funny to make up a poem from our notoriously emo black cat's point of view. So I wrote a ridiculous-on-purpose angsty cat poem. The next day I thought it would be funny for our other cat to write something, and ended up writing something from our big dog about our little dog, too. It seemed like a pretty funny joke. But I'd started creating a monster without realizing it yet.
My girlfriend, being the biggest English nerd on the planet, has a bunch of books about writing and how to get started with it. We started reading one and doing the activities as something amusing to do in the evenings to relax. So one night the activity was to write for ten minutes about anything and not be bound by any rules other than the time limit. You were just supposed to follow your stream of thought and see where it would go. My girlfriend ended up with a pretty long and complete short story that, once started in that ten minutes, consumed the rest of her spring break because it was so desperate to get on paper. I ended up with poetry. The first couple sucked a lot- even I could tell that. But then, once I got going, it got pretty cool. It shouldn't surprise anyone that it ended up mostly about narcolepsy and occasionally about horrible creepy things. Go figure.
And I haven't been able to stop since then. At least a couple come out every day, mostly about whatever is going on at the time- our animals, food, or things I have trouble with because I have narcolepsy. I'm still pretty weirded out by the whole poetry thing, but who knows... I might as well go with it.
Here are the ones I have so far that I actually like. Feel free to criticize- I have no idea what's actually good and what actually kind of sucks, though I'm finding I can usually tell when something really sucks. I'll spare y'all those. Oh, and they don't have titles, and they're all one stanza (apparently), so the spaces separate different ones- don't read it as one thing. And lastly, I officially apologize to anyone who hates poetry as much as I (usually) do, lol.
About narcolepsy:
I'm sleepy
Thoughts drifting
On an open-window-breeze
Flowing gently back and forth
A breath of a storm
Something dark lurks, waiting
As my consciousness drifts, helpless
Airy, feathered
The hidden monster
Deep teeth
Ready to spring and consume
To drown
In fear
In dreams
Tail lashing
Forked tongue lashing
Striking without warning
From floating comes sinking
Sucking
Down into depths
Feeling like oceans
Cold clinging
No escape
Words
Come flowing
Tripping, dripping
Dipping into my memory
Searching
For meaning
Hidden
Under rocks
Behind bushes
Inside streams
Among fish
Fishing for words
Encased in ice
In little huts on a lonely lake
In winter
Not my season for words
Cracks
In my head
Thoughts slip through
Unbidden, fall away
Dissolve
Become nothing
Are lost.
Searching,
I cannot recall them.
They are gone.
But perhaps
There will be new thoughts
And that is enough.
Life:
Waiting, impatiently
Aroma wafting my way
I fidget, lick lips
Hungry for trying the latest
Concoction
Sitting, bored, writing
To pass the time
Until it is cool
And tongue is not burned
Mysterious orange sauce
Sleeping cats
Rise and fall
Of fuzzy chest
Fluffy tail
Dark ear
Together a yin yang
A balance
Light and Dark
Male and Female
Entwined in peace
Asleep
In their forms
You can see Love
Other stuff:
Shard of wood burning
Intense blue
So yellow it's white
Edges
Glowing within
Like those eyes
Thunder screaming
Shouting its words
Raining its tears
Choking the sky
The ground, the earth
Nourishing, hunting
Crying
Booming
Crashes against ears
Of all shapes and sizes
Paralyzing
Drowning
Loving
Holding
Rain
So there you have it. Weird poetry from me! And there will probably be more. Be afraid! Be very afraid...
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