Episode Transcript
00:00 - Kerly (Host)
Hi everyone, welcome to Narcolepsy Navigators. Today we're talking with Katie. She's from the US and she has IH, and welcome to her story. Hi, katie, how are you? I'm good. How are y'all? Yeah, I'm okay. I had to have a nail fixed this morning and so I had to wake up and just go straight to the nail shop. Yeah, and I came home and had a nap, so, yeah, yeah, I've fallen asleep on my nail tech before.
00:29 - Katy (Guest)
She's very understanding.
00:32 - Kerly (Host)
Yes, yeah it is, but I think I go into automatic behavior because I'm sleeping half of the time. But yeah, I know when to put my hand in, out, in, out, in, out of the Yep, the yep, yep, I'll usually doze off during, like, the acrylic application, like for a fill or something.
00:52 - Katy (Guest)
Yeah, um, and then, and then she'll chat with me while she's doing the design so that we can do that part of it that's so cool.
01:03 - Kerly (Host)
No, she's phenomenal. Yeah. So, katie, how are you? Can you tell me a little bit about yourself? Just introduce yourself, like how old are you, if you don't mind um what country you're residing in, and um like what do you do for living, or like your hobbies, that type of thing sure so I am 30 years old, I live in the United States, south Dakota to be specific, which is kind of the middle of nowhere, and I currently don't work or anything.
01:34 - Katy (Guest)
I'm a stay at home mom. We are privileged enough that we have our little one at daycare for some socialization and a little bit of a break for me. And then, for fun, I sew. I'm a a quilter, but I also do kind of odd job sewing too which is really fun and interesting, keeps me busy. It does. It is pretty rough though with my IH that I don't get to do it as much as I'd like, but that is what I do for fulfillment that's nice.
01:59 - Kerly (Host)
So what year were you diagnosed with IH um?
02:02 - Katy (Guest)
I was diagnosed. I took notes because I had to figure it out, but I was officially diagnosed in 2022.
02:10 - Kerly (Host)
Oh, so very recent, although you were diagnosed in 2022,. Did you have to wait long before you got your diagnosis, or was it?
02:19 - Katy (Guest)
Actually not really the first time I saw. I went to a pulmonologist because my husband has sleep apnea. So I was like, well, that's where you got a sleep study. So I'll go to the pulmonologist too. And I saw them in late 2021 and had an at-home sleep test. And then in March of 2022 was when I had an in-lab sleep test and they confirmed idiopathic hypersomnia.
02:40
So it wasn't very long for diagnosis, but it took me a long time to admit to symptoms that it was like oh, I'm actually really sleepy and it's weird, this isn't normal sleepy like because I've always been a sleepy person like, especially as a teenager, is when I can really remember. It was always attributed to me pushing Like I was just always busy. I was in all the plays, oral interp, I ran the yearbook, I did. You know, I had a job, I did everything and I just never stopped. And so when I went to college, I was super duper busy but I was very sleepy and it was a joke amongst my friends we'd all be sitting around talking and then they'd be like, wow, katie hasn't talked in a while and I'm asleep in the chair. You know dates with my husband.
03:24
I was constantly falling asleep on his parents' couch while we watched movies. We actually talked about that last night Cause I was like, was that weird? And he's like it was weird for my parents. They come down the stairs and I'm just asleep Like we weren't doing anything, just sleeping. Fell asleep in church all the time as a teenager. Fell asleep in class If they turned the lights down. Fell asleep in church all the time as a teenager. Fell asleep in class if they turned the lights down. Fell asleep in like 11 am classes in college, the ones that you don't fall asleep during and all this time people just said oh yeah it's because katie's very busy.
03:57 - Kerly (Host)
She's one of those go get her person person, so that's why she must be tired.
04:02 - Katy (Guest)
Yeah, and by the time 2021 came around, it was like I had finally slowed down enough to realize that like, oh, something's wrong. And because I quit my job in January of 2020 to be a stay at home mom, my little one was born September of 2019. And then I became a stay at home mom in January Perfect timing, it turns out, because I was a teacher and, like I was able to take naps when the baby napped, so that worked out great. And then, as she became a toddler and stuff, it was like I'm like I'm tired, but I feel like I'm more than that.
04:37
And it got to this point where, like my husband, he was working. He works from home most of the time, which is really great, but, like you know, we'd get up. My daughter would get up around 730. I'd get up with her and then, like I do my morning chores and we'd have a great, pretty great morning, but by 11 o'clock I was drooping and my husband would have his lunch break and I'd go take a nap. During that I'd get up. We'd basically have TV all afternoon because I just didn't have the energy to do anything, which which screen time when your daughter's that little, oh the guilt. But, and then my husband would get off work at five and I'd go back to sleep until six, 37 o'clock.
05:15 - Kerly (Host)
Whenever the little one went to bed, I'd wake up, do bedtime and then I'd like push to try to make it to like a nine 30 bedtime like a normal person was not fun and we did that for about a month and my husband finally looked at me and he was like you gotta go see somebody okay, so that that routine that you just gave, that wasn't your routine before, when you were working, before you were pregnant, you weren't running on a routine like that I just I didn't have time.
05:44 - Katy (Guest)
I I never stopped, like because my teaching job was very busy, and then you add a baby to the mix and it was just go, go, go, go, go and then stay at home. Mom, I was still go, go, going, try to have this perfect house, and then, like I was just slowly going downhill and in 2021, it really was bad.
06:06 - Kerly (Host)
So, for those who don't know what idiopathic hypersomnia is, how would you describe it.
06:09 - Katy (Guest)
I joke that idiopathic hypersomnia is narcolepsy's sister.
06:13 - Kerly (Host)
Yes, that's what I say, in which that I am super duper tired.
06:17 - Katy (Guest)
Yeah, yeah, it's like it's. I'm super duper tired all the time and nobody knows why, and like I can sleep as much as I want to, I could like I'm on paper, I am perfect. I sleep eight hours a night, no problem. I can take a nap, like you know. I could take eight hours of sleep, four hour nap, and I'm still tired when I wake up. Like I am just always in a constant state of tired. The varying degrees of that are there, but I sleep as much as I want, still tired, and nobody knows why.
06:51 - Kerly (Host)
Yes, so for those who are listening, that is one of the difference between the apathic hypersomnia and people who have narcolepsy. People who have narcolepsy tend to, once they have a nap, they feel refreshed and then they're able to go on for a couple more hours and then they'd get tired and then if they had another nap, that would help them and then they'll feel refreshed. But people who have isopathic hypersomnia, they don't get that refresh feeling after the nap, so it's as if it never happened that nap.
07:19 - Katy (Guest)
Yeah, and it's it really takes the fun out of naps, you know, and it's not a break or anything like that, it's just it's it really takes the fun out of naps, you know, and it's not a break or anything like that, it's just. It's really obnoxious to be like, wow, my body needs to lay down and I know that when I wake up in an hour, a couple hours, who knows however long I'm allowed to sleep, it's not going to do anything Like. It's really frustrating, I don't want to say I'm jealous of narcolepsy.
07:42
But I'm a little jealous of narcolepsy.
07:44 - Kerly (Host)
Yeah, I can see why. So when you do take your nap, how long do they usually last on?
07:53 - Katy (Guest)
average. It just kind of depends on like schedule and stuff like that.
08:12 - Kerly (Host)
But like this weekend when my husband's home and you know he's not working and stuff and he can mind the child. I think I took what two, two and a half hour naps, something like that. Yesterday I did yeah and you it was yeah. Did you? Do you feel that you could have had a half an hour nap, if that is, or a 50 minute nap? Do you think that is something that is possible For?
08:22 - Katy (Guest)
me. Yes, I think it's the mom-ness in me that, like, when I need to be awake, I can be. I know a lot of people struggle a lot with sleep inertia and I do sometimes, but I think I joke that it's my mom thing that like, when I need to be awake, I can be awake because it's my kid, because like, would you crash after that?
08:45 - Kerly (Host)
if you push yourself to be awake because it's my kid, um, because like would you crash after that? If you push yeah, you're awake, then are there repercussions for pushing?
08:53 - Katy (Guest)
definitely definitely like, for instance, on and I think this was part of why I was crash, why I napped so much on Sunday um, like, on Saturday, my daughter went to her grandparents to play and my husband looked at me and goes you know, you need new jeans and some other things for shopping. How about you go get that done today? That way it's just done and out of the way. He can have a morning by himself. He appreciates that. And so I ran to town, which is 40 minutes away driving, and, you know, went to the mall, which is a lot of people, did a lot of trying on, which is 40 minutes away driving, and went to the mall, which is a lot of people, did a lot of trying on, which is a lot of energy, had lunch, drove home, crashed for that afternoon and then on Sunday I was paying for it too. Just that much peopling and energy expended and I just you do it too much.
09:41
Yeah, even though it doesn't sound like it might not sound like it might not, and then pushing to try to drive home safely yeah, I was gonna say so.
09:49 - Kerly (Host)
You're still able to drive. That's, that's good, and you're able to still keep your license. Yeah, I mean yes.
09:56 - Katy (Guest)
Um, I am currently on the ziwave medication, which is that nighttime one, sodium, that one, and then, and recently I started taking a daytime medication, which is another reason I'm jealous of narcolepsy, because my because American insurance, you know, no notes, it's the best ever. No notes, it's the best ever. They love to deny me medication based off of it's not FDA approved for idiopathic hypersomnia. So the list of medication for narcolepsy is pretty decent. I mean, you guys got 10 plus medications you can choose from, and for idiopathic hypersomnia it's one and it's just the Zywave, and I'm currently on the highest dose and it wasn't doing enough again. And so my poor doctor, he's trying to fight for modafinil, senosi, anything, and they are like, how about ritalin? So because there's an adderall shortage right now, so they don't want to try adderall, they're giving me ritalin, and so we're. We're trying that out.
11:06
That dosage. I've only been on it for two weeks now and, like the first week, it seemed like it worked. I had my drop-off moments, I also had jitters, which wasn't great, and now I'm on a half dose in the morning and a half dose in the afternoon and that's not really working at all. So I think my doctor's going to call me today and then we'll figure that out or try a different thing again. Yeah, but yeah. So the the daytime medication helps me drive. Um, I have been known to uh do an energy drink. If I drink a monster energy drink over the course of an hour, I can usually get something done.
11:45 - Kerly (Host)
Um, yeah, like driving later in the day and that sort of thing. How long do you usually find that lasts like an hour and then it's out of the system um, actually, if I, as long as I don't chug it.
11:56 - Katy (Guest)
If I chugged it then I get like jittery and it feels like it exits my system faster.
12:01
But I like leisurely drink it over the course of an hour before I need to leave to go do something Like um, like on, there's one day a week where I have to pick my daughter up early from daycare to go to swimming lessons, and so I'll start drinking my energy drink at two so that I can pick her up at three and then, um, I'll be able to drive her to swimming lessons. Which is that like we get groceries beforehand and then it's five o'clock swimming lessons, and then we're coming home at like six because we got to pick up supper and stuff on the way home, and so just taking that hour to kind of like slowly drink it and let it metabolize, it seems like it works. But when I'm hitting the garage at 630, 640, I'm about to crash. Like it's like okay, like okay, now it is time. Hand her to the husband and let's just get her in bed and I will crash on the couch for a little bit that's good, but again I feel like that's part of like the mom's superpower too.
12:55
I'll try that I like I feel like that's part of my mom's superpower too.
12:58 - Kerly (Host)
So I was gonna say thanks for that advice because when I started college, um, like, I just started on on wake hits but I was off medication for two years, um, off daytime medication for two years and I went back to college to do um barbering and I couldn't. I didn't have any daytime medication so I didn't. I had nothing to keep me awake. So people were saying, try any drinks and and stuff, but I found that they only lasted me for an hour. But I didn't do what you were suggesting. I never, I never drank it over a space of an hour.
13:35
I chugged it and then I'd find that it would last me one hour and then it was out my system. It was completely gone. I'd have one hour of alertness and then then it would be completely gone.
13:44 - Katy (Guest)
Yeah well, and it's just kind of nice to like because I'll, because what I'll do is I'll just like sit on the couch, put something on tv and just like kind of enjoy it.
13:56
I found a few flavors that I like, so that don't punch me in the face, because monster energy drink can punch you in the face but um, and I just kind of like I try to enjoy it and just like nurse it and it's like I'm not medicating myself, I'm just enjoying a nice little tasty drink. But so there's always an energy drink in the fridge for me, especially on swimming lesson days, just to make sure that I'm driving as safe as I can. Because, um, before I got on my daytime meds, like for a month, I mean, my doctor was fighting with insurance and stuff and I was I don't want to say dying because that's so dramatic, but like I was sleeping more than I was awake most days and my husband was like taking off work early so that I wouldn't have to drive her to swimming lessons, and like it was rough, which makes late nights working for him, making up the hours and things like that which you know guilt it sounds like you have a supportive husband he's amazing.
15:01
He is my best friend and like we've been together for a long time and, um, looking back, it is funny to be like, oh yeah, there there was the idiopathic hypersomnia that we just didn't know, was there? Um, yep, and but no, he's amazing. I, I wouldn't, yeah, I don't even know what to say about him because I just he's when, when you truly the best thing that's happened to me when you were talking the other night and he was saying about when you were sleeping at his house and his pit, when you went over to watch movies at his parents.
15:36 - Kerly (Host)
Did he ever feel that you were like being rude or bored or something? Or he just fought?
15:44 - Katy (Guest)
no, he like, because I asked him about it, because I was, you know, with this podcast coming up, I asked for his thoughts too, in case you asked about that. So I've got a little bit of what he said. But um, for him, he was just really happy to have a cute girl at his house and the fact that her head was on his lap and sleeping was even better. He could play with my hair and it was also and for him he also was like.
16:07
That means that I'm comfortable with him okay, yes, that's true that you know, because before finding out that I just needed to sleep a ton or my body thinks it needs to sleep a ton, um, it was also just like she feels safe to sleep here and that's really cool.
16:23 - Kerly (Host)
Yeah, um, yeah, he's right. Yes, he's right about that, because it does take a vulnerability to to do that and we clicked very quick as yeah, because we started dating in high school.
16:37 - Katy (Guest)
He was a senior in high school and I was a junior and dated all all through college and everything and got married right after I graduated college. So we've been together since 2009 that's really nice, that's really nice.
16:55 - Kerly (Host)
I love to hear supportive stories, um when it comes to um, like relationships and everything, especially when people are suffering with sleep disorders, because there's there's a lot of the opposite out there, where people are not in supportive situations or their spouse just can't understand it or empathize with, and the demands are relenting, relenting.
17:19 - Katy (Guest)
Yeah, we're at the point with it where I'm not allowed to say sorry for being tired, which is hard for me. But he's just like it's not your choice. I know you hate it. Why are you apologizing for it? Like that's so sweet. What are you talking about? He's like because I don't want to be the person that's like oh, it's okay that you're tired, like it just feels weird to him, so I'm not allowed to say sorry.
17:41 - Kerly (Host)
I guess I'm still working on that one. How old did you say your daughter was?
17:49 - Katy (Guest)
she's four, almost four and a half, do you think?
17:52 - Kerly (Host)
she notices that she is busy.
17:56 - Katy (Guest)
I've, yeah, and I've explained it to her. She's a smart kid and it also helps that she's our only and and the people that she hangs out around, especially before she went to daycare, was adults. Only she hung out with us, she hung out with her grandparents, who I explicitly was like talk to her, like she's a person Please don't do the baby talk thing and so she is smart. If you talk to her, you would be surprised. She's four. That's the reaction that people give me.
18:38
I have a cousin who's a third grade teacher. She was talking with my kid and she's like how old is she now? And I said, ohic, hypersomnia. But I just say you know, mommy has what's called a sleep disorder. Are you sick? Well, I'm not sick, like you can't get sick from this, but you know, mommy needs extra sleep and I'm very tired all the time.
19:01
And you know and I apologize to her because it means that I can't be as involved and which is, I feel like, has put a little bit of a wedge in our relationship sometimes where, like you know, she very much prefers playing with daddy, which I get it, he's amazing and he's much better at playing than I am, but like she just prefers him most of the time.
19:25
Or like I see their relationship and I'm a little jealous, but like I'm trying my best. Or like I get tired and then I get irritable and find myself like I don't want to say criticizing, but like correcting her behavior a little bit too much because like my sleep is making me just grumpy, um. So like I've had to consciously be like she is four. She's not doing a bad thing. She's saying macaroni over and over because it feels good in her mouth. It's not to annoy you, and so just like having to take my big breaths and like chill out and be like she's just gonna say macaroni for a minute straight and we're just gonna have to be okay with that, like you know, and just normal four-year-old things. That like I have to remind myself that it's like you're just tired. She's not doing this to annoy you, she's just four and you're tired yeah and you know, but she's.
20:24
I mean, the idiopathic hypersomnia is part of the reason why we're one and done. There's a lot of reasons we're one and done, but it's part of it because it's like if we were to try to add a baby to the mix, like there's no way. Um, we, because I mean through covid and just like the american experience, there is not really a village to help you raise your kids anymore. I have in-laws that live three blocks away and it's still kind of hard to like get them to watch her more than a couple hours a week. Um, like, hey, we'd love to go on a date or go see a movie, but it's like pulling teeth sometimes.
21:03
But I love the pieces and they help out when they can. And my mother-in-law is truly amazing because, especially before I got on my new daytime meds, which we're still figuring out, she's been helping us out with cooking. Um, because, like I'm, I'm the primary cook, but if I don't have the energy, you know, it's like I might be able to whip up a hamburger helper, but that's not healthy or anything. And my in-laws are mostly vegetarian, mostly vegan vegetarian, not for any moral reasons, but for health, and so the food that they deliver to us is mostly vegan vegetarian, not for any moral reasons, but for health, and so the food that they deliver to us is mostly vegan, vegetarian, and I found that that helps. I mean, it's not a cure, but it helps with my daytime sleepiness, just having, like, good food in you Weird how that happens and not super processed stuff, but so my in-laws are amazing and they help when they can. It's just like if we added a baby to this mix.
21:59 - Kerly (Host)
There's no way no, that's that I like, that you're getting help with the cooking. I started also in in COVID. My, my stove that I had for I don't know 18 years or something decided to stop working but obviously that's a long time for stuff. So it did a good job, but it stopped working in COVID and then I was like, oh no, they had to get a new stove and so that in that period of not having a stove I didn't have like anything to cook on and stuff and then I started asking my sister to cook for me and then it just stuck. It just stuck. So and I always say to people, I think, something that people with idiopathic hyposomnia and narcolepsy one of the two things we need is a cleaner and a chef. Oh my gosh.
22:52 - Katy (Guest)
Like being a housewife like being a housewife if there's one chore I could give up altogether meal prep. Or like grocery planning, meal planning, shopping for groceries, meal prep and just like anything to do with food If I could just have someone else do it all the time. Like I will do six loads of laundry a day if I don't have to cook, please, dear lord. And that's like without the idiopathic hypersomnia. I just get really overwhelmed every week when it comes time to plan groceries. I'm just like what are we gonna eat this week? I don't know. So me finally breaking down and asking my mother-in-law for help has been a blessing. My daughter is still as picky as ever, but we're trying.
23:40 - Kerly (Host)
She's only four. She's going to go through these stages with the food. So what lifestyle changes did you have to make, apart from the ones you've mentioned already? Is there any other lifestyle changes that you've had to make apart from the ones you've mentioned already? Is there any other lifestyle changes that you've had to make? Um?
24:01 - Katy (Guest)
sorry this is where you put in one of those pauses right, or when you cut it down. I think the main thing is just really having to communicate even more with my husband, like we've always had really good communication, but especially when my medication starts to not work and we need to adjust it or whatever, like upping that communication and him just like looking at my eyes a little bit more to see how I'm doing, because I'm not always going to say it because I feel guilty if I go. I need to lay down because, like again, our four-year-old's amazing. I love her to pieces. She's a lot, just has a lot of energy, wants a lot of attention, as a four-year-old is wont to do, and it's a lot, you know and so he gets normal tired, whereas I'm like fake tired, it feels like, and so that's been a thing. A lot is just upping that communication and I try to let him sleep in on the weekends so that when I need a nap it's like a little bit more fair, just as like a little treat to him, because I joke in Facebook groups, because there's a lot of people with idiopathic hypersomnia who really struggle with sleep inertia and not being able to wake up to their alarms and stuff like that. And they're like, what do you guys do to wake up when you have to wake up? And I'm like I have a toddler and a preschooler. Like baby toddler, preschooler, there's your alarm clock.
25:21
Because, like I, I mean she woke me up at I guess 3 30 this last night. She, I think she heard train and got scared and came to my room and I mean I take my second dose of Zywave at 2 am, so I'm pretty deep in it at 3 30 and she's able to like tap me on the back and mommy and I'll, I'll wake up for her. And again, mom superpowers, right, and you know. And she's like, can you come to my room and rub my back? And I'm thinking you know, it's only a you know 10 step walk down the hall. But like, can I rub it here? Like well, yeah, exactly like gave her a hug. And then she's like I need you to come and check my closet for monsters. I don't think she actually believes in monsters, I think it's just like she heard a train.
26:08
And how do I get my mom to come to my room and like you know, it's only 10 steps down the hall, but like I joke that I'm drunk when I'm on my Zywave right and like, luckily old house, narrow hallways but there's a stairwell that still has a baby gate on it for me because I you know, because it's kind of amazing.
26:29
Yeah, it's a. Yeah because it's kind it's. It's more of a makeshift one because old house, there's not really a way to like attach a normal baby gate. So my husband, my father-in-law, made a wooden one that's nice and sturdy, and it's more of a makeshift one because, old house, there's not really a way to like attach a normal baby gate. So my husband, my father-in-law, made a wooden one that's nice and sturdy and it's there for me so that I have something to grab while I'm also touching a wall with this hand to get me down the hallway in the middle of the night. That's very comfortable.
26:52
Well, and it was originally for her. And then she's been saying, mommy, I'm too big for this, like I don't need this anymore. And I'm like I know I need it, you know. So I like stumble down the hall and she's like check my closet. And I'm like okay, we're checking the closet, don't fall over here. We get like don't scare the kid by falling over accidentally because and sit down on her bed, rub her back, try to walk out, you know. And just just because she doesn't totally understand my medication, obviously, and as she gets older, you know, yeah, maybe I'll be able to explain it a little bit better, but, like it's, it's an adventure and of course I'm the default at night because my side is closest to the door. It just always is, and I mean there have been times where she'll go to his side of the bed and bother him. It's an adventure at night, but yeah.
27:47 - Kerly (Host)
I think small children they I don't remember as a small child doing this, so, but I have two younger sisters, so I I know that they used to call out to one particular parent in the night for their monsters or their whatever. Yeah, there was one parent that always got called instead of the other. Yeah, I.
28:07 - Katy (Guest)
I would walk to my parents room and the way they had their bedroom at that time was the bed was right by the door, and so I would knock and my mom would open the door and her face would be there and I'd be like I had a bad dream or whatever. And then she'd be like okay, and she'd close the door and get out of bed. Turns out she had to put on her bathrobe, because there's a reason why you only saw her face when she opened the door. Good for them, you know what Good for them, and so for them. And so she had to put on her her robe we call it a house coat and then she'd come and help me get back to sleep. So in my brain, mom sleeps closest to the door and that's just how it's always been. How so, I guess? The baby gate?
28:52 - Kerly (Host)
that's the way we've changed behavior. We left a baby gate up for me we left a baby gate up for me, yeah, but, but it's working though, and it's sturdy, it's caught me a few times. How, how, how, how has friends and family we talked about family how has friends, how have they taken?
29:10 - Katy (Guest)
um, they've been very like chill about it. I don't have a lot of like real life friends. Most of my friends are online, which, luckily, my online friends that like send me a bunch of stuff to look at or whatever, are very understanding. If it takes me a couple days to get back to them because I'm like, if I'm not watching your stuff, I'm sleeping, I'm sorry, like if I'm not replying, it's because I can't, yeah, and they've been very understanding. The online friends and then in person, they're pretty good.
29:39
I feel like I have friends that if I was at their house and I needed to pass out, they'd give me their bed. It hasn't happened yet, but I feel like they're the kind of friends that would be cool with that. I should probably double check that with them. It's just it's hard to get together. My friends that have kids sometimes our kids will hang out, but then I have some friends that don't have children but they also work two jobs and, um, life, life is happening. Yeah, it's tough, so I haven't been able to like get together with friends a lot, which is sad and I miss it. That's kind of the worst part about being like disabled and not able to work, and maybe I could get a job, but it would be tricky now that I know what I have and I pay attention to it, that like I don't get that socialization as much because I am like I'm an extroverted person.
30:27
I love talking to people, being around people, yes, and but like I get tired or like I can't really have like a normal job where I talk to people and because part of my sewing that I do. I'm doing a grand experiment and I started a small business where I go to like vendor fairs and sell stuff that I made and I love doing those because I get to talk to people. It's great. The sewing the same thing over and over again can get pretty boring, but I love the people and like people oohing and aahing over your things and just chit-chatting all the little old ladies that are like, wow, you're so young and you're sewing. We hate your pink hair, but great job sewing. You know those little ladies. And there's the.
31:09
There's the occasional one that accidentally has blue hair because dye doesn't work on white hair and and she loves my pink, it's great, but you know I love that, but it's like I'm pushing by the time I get home, like I get home and I crash. But you had a lovely time, exactly.
31:31 - Kerly (Host)
It sort of helps to make up for the crash.
31:34 - Katy (Guest)
Yes, and you know, and again, again, I love being around people, I love having that small talk connecting with other vendors and things like that, and I grew up in a really kind of like old folks community, so like talking to elderly folks that attend those vendor fairs or even the you know people who are, I keep saying, elderly and I'm like these people are just my parents age but I can't think of my parents as old like my dad is 70 and it's blowing my mind.
32:02
I can't believe that my father is 70 because he doesn't seem 70 to me. 70 should be old right. Yes, not my father.
32:09 - Kerly (Host)
I think it used to be, I think, when I was younger. When I think of someone who was 70, I think they seemed older than now. When I think of someone that's 70, I don't know if something changed in society or people are well and my dad's parents.
32:28 - Katy (Guest)
Um, we lost them when I was in like second and fourth grade and they were in their mid to upper 70s and so in my brain grandma and grandpa were old. I mean, grandma also had like the permed haircut and like grandpa didn't take care of himself as well as he should have and stuff like that. But so in my brain like those 70s are old because that's how old grandma and grandpa were. But now my dad is 70 and I'm just like this isn't old, you're still driving tractor and occasionally go play baseball. Still like this is. This is weird to me. But but yeah, I, I grew up in this area of like a bunch of kind of old farmers.
33:06
When I worked at a cafe it was the old guys that would come in and like drink coffee and kind of flirt with the waitress, which, looking back, a little weird, but not weird then. Apparently, how time don't flirt with underage waitresses? Guys don't flirt with them, don't flirt with the 16 year old waitress. But and so going to vendor fairs. It's very much like getting back to that sort of route and I love it. It's exhausting. So have you always been.
33:34 - Kerly (Host)
My spoons are pretty much done have you always had like a creative, been a creative person?
33:42 - Katy (Guest)
yes, um, it's actually kind of funny, um, because for most of my life I've always been music like. I come from a very musical family. My mom's dad, my grandpa, had a dance band for 50 plus years country western dance band that I he, he and my mom taught me how to play guitar, taught me all those super old country western songs from like the 60s and you know, and I played in his band. My mom and I would play at, you know, nursing homes and stuff like that. And then I went to music camp every summer, played like six different instruments, sang.
34:20
When I went to college, yeah, when I went to college, I majored in voice and music ed. The music ed was the fallback because I was like, I'm going to be an opera singer, I'm going to do it. And then I graduated from college, got married, went to grad school, picked the wrong grads Shouldn't have done that, because they didn't have any scholarships to hand out and I was the only first year voice master's student because they were full. But I chose that college because it was near where my husband was working already, like. So my choices were live with my husband and go to the wrong grad school, come to find out or go to a different grad school and not live with my husband.
35:02 - Kerly (Host)
Yeah.
35:03 - Katy (Guest)
And, you know, be a state or more away, right yeah. And so I chose the wrong grad school, only did a year of that, but I just wanted to be an opera singer and so quit that. And then in between, like trying to figure out what I wanted to do with my life, like, do I actually want to teach? I've got this degree, you know, I've got my license. But like, do I want to do that?
35:24
And working retail, I landed at a makeup store Ulta, I don't know if you guys have that in the UK and kind of fell in love with makeup for a while and just like helping people feel that I'm most beautiful, I freelanced for a company for a while and kind of got into that kind of artsiness. And then, while and then I worked a couple other retail jobs, and then someone reached out to me and they needed a long-term music sub for their school. Like their teacher had to leave in October and I took over the rest of the year until May, and then they did not hire me. That's fine.
36:00
I think I was a little too wacky for their school Wacky in a good way at a different school, but not at that school, because I never take myself too seriously. But and then I landed at a different school which felt like a really good fit for me until I got pregnant and I just had like an awful pregnancy and my maternity leave was really awful and like I was working on my maternity leave, my unpaid maternity leave and yeah, I told them I was pregnant the day after I found out. I was seven weeks. I found out. I told them the next day my my administration so that they could try to find a sub, because I knew how hard it was going to be to find a music sub in the middle of South Dakota Middle of nowhere.
36:44
And basically the high school principal thought the superintendent was going to do it. The superintendent thought the elementary school principal was going to do it, because I taught elementary and high school and nobody did it. And high school and nobody did it. So she was due September 5th and school starts like middle of August and finally they're like okay, we got you a sub, they're not a music sub and they're not able to do any of the afterschool stuff that you need her to do.
37:12
Like I was writing lesson plans on my maternity leave. We have this choir thing called All State in South Dakota and it's you take some students and you go to this big concert hall with, I mean, it's 1000 kids all learning the same music performing a concert happens once a year and then at this school we also had weekly rehearsals at a neighboring school. So I'd so because I was on maternity leave. What I would do is I was I was living 40 minutes away from the school I'd pack up my baby because she was nursing and brand new, and get in my car, drive 40 minutes to the school, switch my car for a school van, put the baby in the school van, pick up my kit.
37:54
My students drive half an hour to a neighboring school. They'd rehearse for an hour and a half, drive them back to the original school and then they'd rehearse for an hour and a half. I'd drop them off, fill up with gas because you've got to fill up the gas and then switch the baby back into my personal car and then drive back to my apartment 40 minutes. Wow, and I was doing this on maternity leave, unpaid. You're like a saint. And then I also. Yeah, and because my sub had three young daughters at home, like she had a legitimate reason that she couldn't do it, but it's just like you guys, is maternity?
38:31
leave like oh my gosh, I can't believe it yeah and then I came back yeah, that's South Dakota for you, it's really, it's the United States for you, but it's specifically South Dakota this time. And then, like I came back from maternity leave and I was informed that they were taking my band room and making it into a wrestling room. What? Because band numbers were down. I graduate like I graduated a ton of seniors who were in band and gained about half as many freshmen, so band numbers were super down and they just were like you can rehearse in the choir room. And so they stole my band room to make it into a wrestling room and like there was just a bunch of really sketchy stuff going on.
39:16
And over Christmas break I was just sobbing and my husband looks at me and goes you can just quit. No, I can't quit my, my contract. And he's like you can ask to break your contract, you're in their good graces, they love you. Like they might let you break it. Because, like I felt like I was like failing my newborn baby, but I also was failing my students, because I just couldn't juggle it, because it was such a huge job I was teaching, I was teaching nine classes a day, like it was insane and um, hence the go, go, go, go, go and never stop right, I don't have time for a nap.
39:53
I gotta keep going, yeah, you gotta keep going. And, um, yeah, and I was very lucky that they did let me out of my contract in January with only a thousand dollar fine, which apparently is like the minimum fine that they have for breaking con because I was breaking a contract. But I found my replacement because they can. They can fine you for the rest of the paycheck like they could. If they wanted to, they could have come after me.
40:21 - Kerly (Host)
They would and after what them the year in the summer yeah yeah, they were.
40:28 - Katy (Guest)
I mean one. Yeah, the, the head of the school board actually read my letter of recommendation and was like crying, like trying not to cry or not. My letter of recommendation, letter of, uh, resignation, resignation and um, and he was like holding back tears, trying, trying to read it, this grown man.
40:51
And when they accepted it and, like you know, placed the terms like a thousand dollar, fine, whatever, which they were just going to garnish from the remainder of my wages, so it's not like I had to write a check. But, um, like, the meeting adjourned and the entire school board came up and hugged me like they were so appreciative of everything I had done I had. You know, the kids were very sad but understanding and like, and there's still some students that I'm still in contact with. I just told them I was like you have to be 18 and graduated then we can talk and there's and there's a few that still yeah, that still stay in touch and you know, stay in contact.
41:31
But yeah, so I've always been artsy. I realized that's where that question came from. Um, and then when COVID hit, you know we were making masks and I was like I've got this sewing machine. I don't know how to use it, I'm kind of scared of it and I just gave it a try and kind of fell in love. And now my parents are just like we're very confused because you've always been music and now this, although they can't harp on me about trying to go back to teaching anymore because my license expired.
42:04 - Kerly (Host)
So is that how it works in the states?
42:10 - Katy (Guest)
you have to renew your license yes, you have to pay to like, and sometimes you have to take I shouldn't say sometimes you do have to take classes, and that's on your own dime too. You got to pay to take classes. To keep your license up to date yep. And if you let it lapse, then you have to pay to take classes. License up to date Yep. And if you let it lapse, then you have to pay to take classes. And pay to take this awful exam called the praxis, which, if I never have to think about the praxis again in my life, it'll be too soon. And I just like my mom was being like you could go back to teaching. And I said, mom, my license expired on the 31st. And she, oh, how could you let it expire? And I'm like, because I don't want to go back to teaching, well, you could sub on my board, mother is that, whether you sub or you just music subs.
43:01 - Kerly (Host)
Yeah, yes, they are always looking for music subs, but what is great is that they taught you music and your music abilities will never go away, regardless of whether you go back and teach yeah and, and I see also the musicians- are already being passed on to my daughter.
43:19 - Katy (Guest)
You were a music major. What was your instrument?
43:21
um piano, piano yep yeah yeah, I played piano for a very long time still do, obviously, but not as much now. My main instrument was voice, but I played tuba in the college marching band. I wanted to major in tuba too, but the professor had wandering eyes so did not want to be alone in a room with him. And uh, yeah, he's been. He was fired a couple years later but, um, so majored in voice but kept my, kept my piano up and, you know, played tuba and in the marching band because that was really fun. So, yes, I've always been artsy. It just depends on what level of art I end up in what medium.
44:06 - Kerly (Host)
But right now's quilting- I have found that a lot of people who have narcolepsy you're the I haven't talked to many people with idiopathic hypersomnia. You are the third, probably fourth person I've met with idiopathic hypersomnia, but I found that, especially people with narcolepsy, they are very creative. They all seem to have some type of crazy interesting yeah, and I think it has something to do with the part of the brain that's affected. It seems to trigger or bring out creative parts. Um side of people.
44:39
Yeah, that's so interesting so katie, yeah, it's just it just brings me joy, yeah, and you should do things that bring us joy, as mary condo says, yeah, yes. So what would you like people to remember and know about idiopathic hypersomnia?
44:58 - Katy (Guest)
that it's real and it's not fun. The whole, the whole comment of like, oh man, you get to nap, to nap that much, like it's not a fun nap, it's not a good nap, it's. You know, if I could, I would rather just be awake all the time and be fine. So being able to sleep as much as I can is not fun, because I'll meet the people with insomnia and they're like I wish I could sleep at night. I'm like I wish it did anything. But just that it's real, it's. It can be quite debilitating. It's not that I don't want to do things, it's that I can't do things.
45:39 - Kerly (Host)
And if medical professionals could just figure out how to call idiopathic hypersomnia narcolepsy type three, that would just make my day, that would make my life, because yeah, I totally agree with that here, because and from what you said I think it would it would help, because it seems like it would help with the insurance and the medication part of it, because it would go on the list instead of separating, separating it in that way.
46:06 - Katy (Guest)
Yeah well, and there are so many similarities between narcolepsy type 2 and idiopathic hypersomnia like there's almost more similarities there than there are between narcolepsy 1 and 2, like I watched a whole talk about it and it was very fascinating. But so we are if we're trying us idiopathic hypersomnias yes.
46:27 - Kerly (Host)
We're trying. If there was a red button and if you press the red button your idiopathic hypersomnia would go away, Would you press it? I?
46:34 - Katy (Guest)
heard this question on a previous episode of yours and I'm just like I don't know. I think I would say yes, just because I miss life and I want to. Sorry, I'm going to cry now. I want to be there for my kid more, but it has, like, given me this new perspective on like disability and stuff like that. Like I was definitely growing in the disability advocacy part of my 2020 awakening, let's call it, as a white lady.
47:04
You know, some of us took that 2020 awakening and ran with it, so like disability was happening. And then it happened to me and I was like, oh, now I really get it. So it's like, you know, do I push it, do I not? But I think, knowing who I am and the learning that I was already doing about disability advocacy and how it goes with everything else that I've been learning since 2020, I think if I could get rid of mine, I would and trust myself to continue being the person that I've been becoming yeah, no, that's a beautiful answer.
47:40 - Kerly (Host)
Yeah, I'm just thinking of just like trusting yourself to know that you were already developing and becoming that person anyway empathy, wise, like learning about, as you're saying, learning about people's different disabilities and advocacy. That was already becoming a part of your life anyway. So it's not that you would, you wouldn't you would abandon that if you suddenly became. Well yeah yeah, yeah, disability as like an intersection of oppression, not to get too political and what would you like other mothers to know out there who have recently been diagnosed with idiopathic hypersomnia?
48:22 - Katy (Guest)
all you can do is your best and take the times that you are with your children and you feel good and make it a really good quality time so that they can be more understanding when the good time, when you have to go lay down and miss some of the other moments.
48:37 - Kerly (Host)
Yeah, because I think when I think of myself as a child, it's the little things that you remember, that you really appreciated about like your parents and stuff. It wasn't like really the big things, it's just like the little things. So I think if you can get in those little things, those are the things that they will remember and kids are smart.
48:57 - Katy (Guest)
They understand more than we know. Definitely, like I just tell my little one, I lean down close to her and I go. I need to go lay down. I love you very much. I'll see you in a little bit. Be a good listener for daddy. She goes.
49:08 - Kerly (Host)
Yeah, okay, have a good nap to mom here I go that's nice having you as a mom and you going through this will make her very, I think, emotionally intelligent very quickly.
49:20 - Katy (Guest)
I hope so and like I hope I'm showing her that like you have to care for yourself and that sort of thing, because that's not something I grew up knowing how to do and I don't know. I have high hopes for her. She's a cool kid.
49:35 - Kerly (Host)
I think in our parents generation it was pushed a lot to take care of everyone else and less about taking care of yourself, like even my mom. Now she's retired and I have to remind her to look out for herself because she's so used to always looking out for other people. It's always about what can you do to help other people, what do to make other people's lives easier. But I'm like what about you?
49:58 - Katy (Guest)
why don't you just take a rest, take a break you know how are you doing.
50:03 - Kerly (Host)
Yeah, yeah if I do the same thing with my mom but what I think?
50:07 - Katy (Guest)
what helps us? She's had so many funerals these last few weeks and I'm like how are you? Like? I know you're caring about everyone else with these funerals. How are you?
50:17 - Kerly (Host)
like yeah, you need someone to check in for you. Mom, really, how are you really? Yeah that's really important, because I think when you have to learn to listen to your body, I think that's when, when you learn also to take care of yourself because you have to you know what's going to happen when you don't, so then it helps you to practice and think yes, although I'd like to do things differently, it's better that I listen to my body and I take care of myself.
50:44 - Katy (Guest)
Yeah, that's exactly it, and even if the nap doesn't help, at least you didn't crash out doing something foolish or something.
50:51 - Kerly (Host)
Yeah, that's true. Well, thank you, katie. Thank you for coming on Narcolepsy Navigators. It was really nice to hear your story, to hear a little bit about your story and life as a mother and how supportive your family and husband are towards you having idiopathic hypersomnia and how you're navigating your life, and I wish you all the success and in your future endeavors. No-transcript.
