Saturday, September 8, 2012
Thank you!
Hi everyone. As you may have noticed, I've more or less completely abandoned this blog, but I feel like you all have been so supportive that I owe you at least a good-bye post.
My main reason for not writing Sleepy/Creepy anymore is that I'm doing extremely well. As a matter of fact, I haven't felt this good in over ten years, which is, you know, like a third of my life. I'm feeling so good because I've discovered, finally, how to reorganize my brain. In fact, it seems that I don't have narcolepsy at all. The jury is still out on that one, but at this point I'm pretty sure I was misdiagnosed. After figuring some astonishing things about myself, I've been able to almost completely recover from the narcolepsy-like symptoms I was having.
If this seems mysterious, I apologize. I'm reluctant to go into more detail, simply because you may not believe me. And that's okay. I'd rather you all thought of me as mysterious than (quite possibly) nuts.
And so I'm afraid this is good-bye. I just want to thank you all for reading, and for all the encouragement you've given me. You have no idea how much it has meant to me that people actually read my blog, and even better, comment on and subscribe to it. I wish you all the very best. Again, thank you! <3 I really, really mean that.
Sincerely,
Wolfie
Thursday, November 10, 2011
PFLAG: Or, Why Do People Have Meetings At Night of All Ridiculous Times??
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.
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.
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.
Wednesday, August 24, 2011
That Song I Mentioned Once
I found it! It's by Third Eye Blind, called "Narcolepsy".
Lyrics:
I'm on a train, but there's no one at the helm
And there's a demon in my brain
Who starts to overwhelm whelm whelm whelm whelm
And there it goes, my last chance for peace
You lay me down, but I get no release
And I say I, I try to keep awake
I try to swim beneath
I try to keep awake
But I, I can feel this narcolepsy slide
Into another nightmare
And there's a demon in my head who starts to play
A nightmare tape loop of what went wrong yesterday
And I hold my breath till it's more than I can take
And I close my eyes and dream that I'm awake
I try to keep awake
I try to keep awake
I try to keep awake
But I, I can feel this narcolepsy slide
Into another nightmare
I read dead Russian authors volumes at a time
I write everything down except what's on my mind
Cause my greatest fear is that sucking sound
And then I know that I'll never get back out
And there's a bone in my hand that connects to a drink
In a crowded room where the glasses clink
And I'll buy you a beer and we'll drink it deep
Because that keeps me from falling asleep I said
How'd you like to be alone and drowning
How'd you like to be alone and drowning
How'd you like to be alone and drowning
How'd you like to be alone and drowning
Still I find this narcolepsy slide slide
Into another nightmare
Keep awake, keep awake, keep awake
And I can feel this narcolepsy slide
Link to video: http://www.youtube.com/watch?v=KG0t2E3qV2U
I really like what she did with this video. Totally fits what happens to me a lot. :D
Lyrics:
I'm on a train, but there's no one at the helm
And there's a demon in my brain
Who starts to overwhelm whelm whelm whelm whelm
And there it goes, my last chance for peace
You lay me down, but I get no release
And I say I, I try to keep awake
I try to swim beneath
I try to keep awake
But I, I can feel this narcolepsy slide
Into another nightmare
And there's a demon in my head who starts to play
A nightmare tape loop of what went wrong yesterday
And I hold my breath till it's more than I can take
And I close my eyes and dream that I'm awake
I try to keep awake
I try to keep awake
I try to keep awake
But I, I can feel this narcolepsy slide
Into another nightmare
I read dead Russian authors volumes at a time
I write everything down except what's on my mind
Cause my greatest fear is that sucking sound
And then I know that I'll never get back out
And there's a bone in my hand that connects to a drink
In a crowded room where the glasses clink
And I'll buy you a beer and we'll drink it deep
Because that keeps me from falling asleep I said
How'd you like to be alone and drowning
How'd you like to be alone and drowning
How'd you like to be alone and drowning
How'd you like to be alone and drowning
Still I find this narcolepsy slide slide
Into another nightmare
Keep awake, keep awake, keep awake
And I can feel this narcolepsy slide
Link to video: http://www.youtube.com/watch?v=KG0t2E3qV2U
I really like what she did with this video. Totally fits what happens to me a lot. :D
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
Tuesday, June 21, 2011
Wedding Plans: A Disaster Movie
As I might have mentioned I've been planning (or attempting to plan) my wedding since we decided on a date around November. Since then, the universe has been doing its best to foil everything, to the point where it's seriously getting comical. XD
Well, from the start, as a legally gay couple, we can't have the thing in whatever state. All the states where our families live don't have legal gay marriage, though at least Illinois will recognize it as a civil union after some other state does the dirty work. Not that that does us a lot of good yet. Fortunately, Iowa is allowing it at least for now, much to everyone's surprise. No offense to Iowa, but it isn't the first place you think of when you think of inclusive rights. It's like, the first place you think of when you think of corn fields, pig barns and windmills. But who am I to complain. We even were living there when we started planning, and thought we would be for several years. Plenty of time to get married and enjoy the legitimacy, official status and things like me being on my transman's insurance even before he gets surgery. So we set a date, now only a couple of weeks away, excited to become bound together for life officially.
We had the thing mostly done after a few months when we hit a snag and decided to switch parks because of various constraints on what we could put up and rent at our original park. And, me being me, the lack of bathroom there posed a problem. We had figured out everything else except our hotel and the flowers. So we went down to the area we had chosen (the only place my relatives could easily fly into from Texas) and chose a better park we liked even more. We loved this park; everything about it was perfect. It was private, allowed our dogs, had a great pavilion with the perfect seating, and a deck onto the Missouri River (I have a thing for water). So we booked it, even more excited then before. While there we found a great P.F. Chang's for the rehearsal dinner (a restaurant famous for gluten-free options- If you're a Celiac and like Chinese food, GO THERE). We returned to our home in Iowa, pleased with ourselves.
By then we knew that we were moving back to Wisconsin for an indefinite period of time to live with my fiance's parents again. Both J and the school he was teaching at decided separately that he wouldn't be continuing with them next year. We applied all over the country for a new teaching position, but then everything changed when we realized J is going to go through gender transition this next year. After all, the public school system isn't really the best place to do that. Still, the wedding was on, mostly planned and going to be in Iowa whether we lived there anymore or not because it's the only state in the Midwest where we could do it.
And that was when all the flooding began. You've probably seen it on the news. The Missouri is closing roads and chasing people out of their homes, and because of where our perfect park was, it was the first thing to be underwater. We got an email from the county park people right after the flooding began. Frustrated, we started looking for somewhere else to have it.
It took us awhile to give up on having it outside, then awhile longer to give up having it on the Iowa side of the river. Meanwhile we were moving and I was coming down with mono. Everything was up in the air for awhile. Then J's older brother called us to tell us about a really nice indoor place in Omaha, complete with art gallery and Asian theme, that was full of natural light. We really liked it, and decided it was worth having our wedding ceremony happen across the river from the official paperwork. Relieved, we booked it and agreed to have two ceremonies: one five minute legal one and then one for our guests.
And then I got really sick and went to the doctor to discover that I have mono. I got put on lots of meds and spent the last week in bed, slowly starting to feel human again. Unfortunately, it was basically guaranteed that J caught it from me because we share glasses and other dishes (and make out >.>) all the time. Oh great, we thought. I'm almost through the worst of it and will most likely be totally fine by the wedding, but he's just starting to show fatigue. And that means, unless we're extremely lucky, he's going to be sick on the 9th. As a virus it could last any lengthy of time and all you can do to speed up healing is lie down a lot. But you also never know; he's very healthy most of the time, so fatigue might be all he gets. And because we don't know for sure, we don't want to cancel after all we've done getting the thing planned (not to mention all of our guests having bought their plane tickets).
So we're thinking, okay, so what else could go wrong? Volcanoes? A lightning strike right on the place we chose, instantly vaporizing it? I even put a joke in my mass email about it. Then we start hearing about nuclear reactors getting flooded upriver. Even I didn't see that one coming. Nuclear reactors? Really? So I asked my dad, who has worked in them before, if we should be worried about this because my mother-in-law is freaking out. He says that no, they were able to shut them down and therefore people in the area aren't in any danger. So I'm like, cool. At least my wedding won't give anyone radiation poisoning. (What is with all this?? Right?)
And then I start hearing that they might shut down the Omaha Airport. Now, out of all this stuff, that has the potential to kill it. There are only a few people driving and almost everyone is flying in there, including my parents. At least they've said they will drive if their flight gets rerouted, but the other guests I'm not so sure about. It kills me because at this point, I just want to get the damned thing over with so I can stop messing with it. Honestly, I'm not into weddings. I wanted to elope but J and I decided we would have a ceremony so our families could be there. Also, when it hasn't been legal for very long, it's almost a statement saying, look, we may be two women (so we thought at the time anyway) but we're just a normal couple. And we weren't sure how our extended families would react, so it was a way of including them in the process, allowing them to meet each other, and before it got irritatingly complicated, I was starting to actually look forward to it. J is changing his name when I do so it's also a step in his transition.
In other words, I want this to happen, but the world may not. I don't know which would be worse: changing the date to the fall sometime or just doing it in a closer county without any of my family or friends present. I don't want to wait, I don't want to plan another big thing some other time, and I don't want to have to leave it out of reach of my family. All the choices suck.
Now I'm left to wait and see. What happens with the flooding in the next two weeks will most likely determine its fate. I decided I don't want to cancel it all unless the airport closes because that way, people will get their tickets refunded. I'm afraid that if I cancel it short of that I'm going to regret it. So I might be getting married. Or, the world might continue to pretend to be the movie 2012. Fingers crossed is all I can do.
Well, from the start, as a legally gay couple, we can't have the thing in whatever state. All the states where our families live don't have legal gay marriage, though at least Illinois will recognize it as a civil union after some other state does the dirty work. Not that that does us a lot of good yet. Fortunately, Iowa is allowing it at least for now, much to everyone's surprise. No offense to Iowa, but it isn't the first place you think of when you think of inclusive rights. It's like, the first place you think of when you think of corn fields, pig barns and windmills. But who am I to complain. We even were living there when we started planning, and thought we would be for several years. Plenty of time to get married and enjoy the legitimacy, official status and things like me being on my transman's insurance even before he gets surgery. So we set a date, now only a couple of weeks away, excited to become bound together for life officially.
We had the thing mostly done after a few months when we hit a snag and decided to switch parks because of various constraints on what we could put up and rent at our original park. And, me being me, the lack of bathroom there posed a problem. We had figured out everything else except our hotel and the flowers. So we went down to the area we had chosen (the only place my relatives could easily fly into from Texas) and chose a better park we liked even more. We loved this park; everything about it was perfect. It was private, allowed our dogs, had a great pavilion with the perfect seating, and a deck onto the Missouri River (I have a thing for water). So we booked it, even more excited then before. While there we found a great P.F. Chang's for the rehearsal dinner (a restaurant famous for gluten-free options- If you're a Celiac and like Chinese food, GO THERE). We returned to our home in Iowa, pleased with ourselves.
By then we knew that we were moving back to Wisconsin for an indefinite period of time to live with my fiance's parents again. Both J and the school he was teaching at decided separately that he wouldn't be continuing with them next year. We applied all over the country for a new teaching position, but then everything changed when we realized J is going to go through gender transition this next year. After all, the public school system isn't really the best place to do that. Still, the wedding was on, mostly planned and going to be in Iowa whether we lived there anymore or not because it's the only state in the Midwest where we could do it.
And that was when all the flooding began. You've probably seen it on the news. The Missouri is closing roads and chasing people out of their homes, and because of where our perfect park was, it was the first thing to be underwater. We got an email from the county park people right after the flooding began. Frustrated, we started looking for somewhere else to have it.
It took us awhile to give up on having it outside, then awhile longer to give up having it on the Iowa side of the river. Meanwhile we were moving and I was coming down with mono. Everything was up in the air for awhile. Then J's older brother called us to tell us about a really nice indoor place in Omaha, complete with art gallery and Asian theme, that was full of natural light. We really liked it, and decided it was worth having our wedding ceremony happen across the river from the official paperwork. Relieved, we booked it and agreed to have two ceremonies: one five minute legal one and then one for our guests.
And then I got really sick and went to the doctor to discover that I have mono. I got put on lots of meds and spent the last week in bed, slowly starting to feel human again. Unfortunately, it was basically guaranteed that J caught it from me because we share glasses and other dishes (and make out >.>) all the time. Oh great, we thought. I'm almost through the worst of it and will most likely be totally fine by the wedding, but he's just starting to show fatigue. And that means, unless we're extremely lucky, he's going to be sick on the 9th. As a virus it could last any lengthy of time and all you can do to speed up healing is lie down a lot. But you also never know; he's very healthy most of the time, so fatigue might be all he gets. And because we don't know for sure, we don't want to cancel after all we've done getting the thing planned (not to mention all of our guests having bought their plane tickets).
So we're thinking, okay, so what else could go wrong? Volcanoes? A lightning strike right on the place we chose, instantly vaporizing it? I even put a joke in my mass email about it. Then we start hearing about nuclear reactors getting flooded upriver. Even I didn't see that one coming. Nuclear reactors? Really? So I asked my dad, who has worked in them before, if we should be worried about this because my mother-in-law is freaking out. He says that no, they were able to shut them down and therefore people in the area aren't in any danger. So I'm like, cool. At least my wedding won't give anyone radiation poisoning. (What is with all this?? Right?)
And then I start hearing that they might shut down the Omaha Airport. Now, out of all this stuff, that has the potential to kill it. There are only a few people driving and almost everyone is flying in there, including my parents. At least they've said they will drive if their flight gets rerouted, but the other guests I'm not so sure about. It kills me because at this point, I just want to get the damned thing over with so I can stop messing with it. Honestly, I'm not into weddings. I wanted to elope but J and I decided we would have a ceremony so our families could be there. Also, when it hasn't been legal for very long, it's almost a statement saying, look, we may be two women (so we thought at the time anyway) but we're just a normal couple. And we weren't sure how our extended families would react, so it was a way of including them in the process, allowing them to meet each other, and before it got irritatingly complicated, I was starting to actually look forward to it. J is changing his name when I do so it's also a step in his transition.
In other words, I want this to happen, but the world may not. I don't know which would be worse: changing the date to the fall sometime or just doing it in a closer county without any of my family or friends present. I don't want to wait, I don't want to plan another big thing some other time, and I don't want to have to leave it out of reach of my family. All the choices suck.
Now I'm left to wait and see. What happens with the flooding in the next two weeks will most likely determine its fate. I decided I don't want to cancel it all unless the airport closes because that way, people will get their tickets refunded. I'm afraid that if I cancel it short of that I'm going to regret it. So I might be getting married. Or, the world might continue to pretend to be the movie 2012. Fingers crossed is all I can do.
Saturday, June 18, 2011
Me vs. Giant Piles of Stuff Everywhere = Disaster
Life lesson #1 learned in the past two months: moving four times in two months is a Bad Plan. Let me chart this out for you:
Step 1: Rental house in Iowa to RV park in Minnesota in order to escape sewage leak making us ill (half of houseful of stuff into RV, half into parents' house in Wisconsin). Two humans, two cats, two dogs, six potted plants.
Step 2: After job ends, drive RV back to Wisconsin, thinking we can live in the driveway until we can move into the downstairs of the house (which involves major work because we have to move my in-laws upstairs so we can be downstairs and I can therefore vaguely function in theory without expending all of my energy going up and down stairs).
Step 3: We find out there isn't enough power for air conditioning in the RV, and it's 95. I attempt to live in the RV anyway. but keep having to use the guest room upstairs because my dogs are overheating. The cats had to move inside immediately. Meanwhile, my fiance is driving a friend around the country for an entire week, which means it's me going up and down stairs trying to keep everyone alive and quickly burning out.
Step 4: While living with my dogs in the RV when it finally cools off enough, I find myself getting really sick with cold-like symptoms. My fiance gets back, roadtrip done, and it occurs to me that I feel worst while in the RV, which, because of lack of running water, we haven't been able to clean or empty the tanks of for two weeks. And so we move completely into the upstairs guest room, severely limiting what I can do.
The Result: I only have two or three roundtrips every day on the stairs before I'm unable to muster the energy to go up or down anymore, which means I have to think carefully to plan everything and my fiance has to do almost all the work taking dogs outside or cooking (formerly jobs I was proud I could do). Meanwhile, when we're upstairs the dogs are unhappy and have to be crated because we're living in a maze of box piles and it isn't safe for them to roam. When we're downstairs, the cats stand on the stairs and meow piteously the entire time we aren't up with them until everyone in the house wants to commit kitty murder. The result of this is two constantly stressed out and puking cats, my dachshund having diarrhea and needing no less than four bathroom breaks during the night, which my fiance has to do because I can't go up or down at all at night or I will fall on my face. I keep running out of food because I can't keep track of what we have since I can't go in the kitchen whenever I want to, I can't keep anything clean because a) everyone's throwing up and b) there are piles of laundry everywhere and boxes and everything I need is always on the other goddamned floor. When I'm downstairs, there's access to the outside for dogs so I can actually take care of my dachshund's needs, but there's nowhere for me to lie down. Meanwhile, I'm ill, my fiance is having a tough period and is emotionally a wreck (he hates them more and more as time goes by), we're discussing hormone treatment and arranging lots of doctor's appointments as we're trying to help my mother-in-law very slowly move ten years worth of stuff upstairs while trying to get my father-in-law to at least think about moving the furniture sometime this century, and it's still like everyone except me is dragging their feet. Which, if switching the house around had been my idea, I could understand- I never would have asked to take over the master bedroom because even if I need it, it's their house, they get first dibs, no question from me. But my in-laws, the ones dragging their feet because something is always coming up, were the ones who convinced me that it would be good to live on the first floor, leaving me in this ungodly in-between state. And over all I'm glad they did, because it will make my life possible instead of physically impossible. In theory, even the animals will like it better. If, you know, they can keep any food down for the next month as nothing continues to happen, I keep getting stuck on floors, my fiance has to do everything and I have to try to live in a giant forest of boxes with all of my stuff spread out over three different floors, waiting.
Step 1: Rental house in Iowa to RV park in Minnesota in order to escape sewage leak making us ill (half of houseful of stuff into RV, half into parents' house in Wisconsin). Two humans, two cats, two dogs, six potted plants.
Step 2: After job ends, drive RV back to Wisconsin, thinking we can live in the driveway until we can move into the downstairs of the house (which involves major work because we have to move my in-laws upstairs so we can be downstairs and I can therefore vaguely function in theory without expending all of my energy going up and down stairs).
Step 3: We find out there isn't enough power for air conditioning in the RV, and it's 95. I attempt to live in the RV anyway. but keep having to use the guest room upstairs because my dogs are overheating. The cats had to move inside immediately. Meanwhile, my fiance is driving a friend around the country for an entire week, which means it's me going up and down stairs trying to keep everyone alive and quickly burning out.
Step 4: While living with my dogs in the RV when it finally cools off enough, I find myself getting really sick with cold-like symptoms. My fiance gets back, roadtrip done, and it occurs to me that I feel worst while in the RV, which, because of lack of running water, we haven't been able to clean or empty the tanks of for two weeks. And so we move completely into the upstairs guest room, severely limiting what I can do.
The Result: I only have two or three roundtrips every day on the stairs before I'm unable to muster the energy to go up or down anymore, which means I have to think carefully to plan everything and my fiance has to do almost all the work taking dogs outside or cooking (formerly jobs I was proud I could do). Meanwhile, when we're upstairs the dogs are unhappy and have to be crated because we're living in a maze of box piles and it isn't safe for them to roam. When we're downstairs, the cats stand on the stairs and meow piteously the entire time we aren't up with them until everyone in the house wants to commit kitty murder. The result of this is two constantly stressed out and puking cats, my dachshund having diarrhea and needing no less than four bathroom breaks during the night, which my fiance has to do because I can't go up or down at all at night or I will fall on my face. I keep running out of food because I can't keep track of what we have since I can't go in the kitchen whenever I want to, I can't keep anything clean because a) everyone's throwing up and b) there are piles of laundry everywhere and boxes and everything I need is always on the other goddamned floor. When I'm downstairs, there's access to the outside for dogs so I can actually take care of my dachshund's needs, but there's nowhere for me to lie down. Meanwhile, I'm ill, my fiance is having a tough period and is emotionally a wreck (he hates them more and more as time goes by), we're discussing hormone treatment and arranging lots of doctor's appointments as we're trying to help my mother-in-law very slowly move ten years worth of stuff upstairs while trying to get my father-in-law to at least think about moving the furniture sometime this century, and it's still like everyone except me is dragging their feet. Which, if switching the house around had been my idea, I could understand- I never would have asked to take over the master bedroom because even if I need it, it's their house, they get first dibs, no question from me. But my in-laws, the ones dragging their feet because something is always coming up, were the ones who convinced me that it would be good to live on the first floor, leaving me in this ungodly in-between state. And over all I'm glad they did, because it will make my life possible instead of physically impossible. In theory, even the animals will like it better. If, you know, they can keep any food down for the next month as nothing continues to happen, I keep getting stuck on floors, my fiance has to do everything and I have to try to live in a giant forest of boxes with all of my stuff spread out over three different floors, waiting.
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.
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