Episode Transcript
[00:00:10] Speaker A: Hello, welcome. You're listening to season two of Narcolepsy Navigators, brought to you by Naps for Life Narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kerri Boger, the founder of Naps for Life Narcolepsy. And welcome to our stories.
[00:00:42] Speaker B: Hi everyone.
[00:00:43] Speaker A: Welcome to Narcolepsy Navigators. I'm Kerri, your host. I have narcolepsy type 1 and today I'm here with Hayley. She is residing in the United States and she has ih. Hi Hayley, how are you?
[00:00:57] Speaker B: Hi, Chloe. I'm doing well. How are you?
[00:00:59] Speaker A: I'm okay. I just had a nap, so I'm ready and I'm refreshed for the podcast. So how was your day?
[00:01:07] Speaker B: It's actually been a pretty slow day for me. I had a busy day yesterday, so that tends to affect me the next few days.
[00:01:15] Speaker A: So what made it so busy yesterday?
[00:01:17] Speaker B: Yesterday I took my dog to the vet for his annual vaccination and we were just in a small room for a long period of time. No movement at all. So that made me very sleepy. I also am trying a new medication, trying stenosi in the morning and it was my first time, did not do anything. So was from that. And then I had work orientation for about two hours. So kind of a more busy day for me.
[00:01:44] Speaker A: I see. Yeah. Yesterday I was supposed to go to college, but then the teacher said I didn't have to come in. I'm studying hairdressing because I did the units already. I didn't have to go in so which was nice. So then I had to lie in.
[00:01:55] Speaker B: Yes.
[00:01:55] Speaker A: So that was level. And then today is my day off from college, so then I supposed to be doing work and other things, but I got an extra lion which was nice. So yeah, so I didn't accomplish as many things as I wanted today. I did do a lot of admin work, but I wanted to accomplish more things. But you know, it is what it happens. So Hayley, please tell us your name, your age, if you feel comfortable, what state you're residing in and what do you do for a living.
[00:02:22] Speaker B: Sure. My name is Haley Wall. I am currently living over in West Texas, but originally born and raised, living the last 24 years I was over in the New England area. I just turned 25 and I am an occupational therapist and just actually received my first job position as an OT for pediatric home health. So that's all about me.
[00:02:44] Speaker A: Oh, that's nice. So when you say pediatric home health, it means you'll be going to people's houses.
[00:02:48] Speaker B: Yeah, it's something that I felt was more conducive to my ih, because in hospital settings, they're definitely not my skin. They're very fast paced, very long shift, and that just is not something I can handle. But I was thinking maybe an outpatient clinic, but there were limited options. But I did do home health in my field work during graduate school, and I liked it a lot because it does kind of allow you to. After a session, you can kind of just take a second for yourself in your car and not have to, you know, answer a bunch of questions from other people who may be in the office, if you're working in the office. So it's also a very flexible. More flexible schedule than in a clinic or office.
[00:03:29] Speaker A: Yeah, I get that. I remember my occupational therapist from when I had breast surgery and she was lovely. Yeah, I can imagine someone coming to your house. It must be easy on the patient as well.
[00:03:39] Speaker B: Absolutely. I do think it plays a huge role because you're helping the kiddo with whatever they may be struggling with in their own environment rather than somewhere that they're not familiar with. So it's easier to transfer those skills because they're already doing them in the home.
[00:03:53] Speaker A: Yeah, definitely.
[00:03:55] Speaker C: Hey, I'm so sorry I'm late. I traveled home today and then I was, like, completely out of routine. Just forgot what day and time it was.
[00:04:05] Speaker A: Don't worry, we just did the introduction and Hayley was just saying who she is and what she did for work.
[00:04:09] Speaker C: Amazing. Well, don't let me interrupt too much, but, yeah, I'm Liz, the co host. So nice to meet you.
[00:04:15] Speaker B: Nice to meet you as well. Yeah.
[00:04:16] Speaker A: Liz, how was your week?
[00:04:17] Speaker C: Ooh, my week was. God, what have I even done this week? It was all right, actually. So I have today off, which was really nice because I'm going away with my family this weekend, which I am looking forward to. But it's one of those things where I've got a long weekend with my family, including my brother, his wife, my nephew, who's 4, nearly 4. And you just know when there's a child in the mix, it's not going to be the most relaxing weekend ever, which is quite hard for someone with narcolepsy, because you kind of need to relax in your spare time as much as possible. And it's to be probably quite early mornings and Lots of activities and not so much chill time. So, yeah, feeling a mixture of things. Excited, but also a little bit apprehensive about the lack of chill time ahead of me. And then I've got a full week next week. But, you know, these are the things we have to manage every. Every day, so I'm sure I'll be fine. They know me well, obviously, so if I fall asleep when I'm meant to be doing something, they'll forgive me and hopefully wrap me up in a blanket and leave me alone for a bit.
[00:05:20] Speaker B: That's good.
[00:05:21] Speaker A: At least you're going with people that will.
[00:05:23] Speaker C: Yes, definitely. I mean, my nephew might not. He might poke me and be like, why is Auntie Lizzie sleeping? I'll be like, just give me 10 minutes and I'll be back to normal again.
[00:05:33] Speaker A: Yeah, that's true. He probably won't understand because he's too young.
[00:05:36] Speaker C: Yeah. What age can you start telling people about narcolepsy? I mean.
[00:05:40] Speaker A: Oh, you can start telling me about four.
[00:05:41] Speaker B: Yeah.
[00:05:42] Speaker C: Maybe age appropriate way. Just. Auntie Lizzie gets very sleepy.
[00:05:46] Speaker A: There's a video on YouTube, a really good one, about a little bear that has narcolepsy. Very, very appropriate.
[00:05:52] Speaker C: It's. Yeah, that's good to know.
[00:05:54] Speaker A: Yeah. A really nice little cartoon. And. Yeah, about. And it says stuff like, say the bear was called Liz.
[00:05:59] Speaker B: Oh.
[00:06:00] Speaker A: Lizzie is at school, and sometimes she feels tired, and sometimes Lizzie gets cranky. But it's not because she doesn't want to play with you. It's because, you know, she has narcolepsy. Sometimes Lizzie is enjoying playing a game, and then she starts to feel so many emotions, and this makes her tired, and sometimes she might need to sit down on the floor. This is not because she doesn't want to play with you. This is because she has narcolepsy. And they gave all these little scenarios and they say, make the children and not think that the child is not wanting to interact with them because they're being mean. Or sometimes when Lizzy gets really tired, she gets cranky and she might say mean things, but she doesn't mean them. It's just because she needs to sleep and things like that.
[00:06:40] Speaker C: I love that. I feel like I need to play that for my whole family, including my boyfriend.
[00:06:45] Speaker A: Yeah, it's a really. It's really good for you.
[00:06:47] Speaker C: Nice. Thanks for that signpost. I'm going to look that up.
[00:06:49] Speaker A: Hayley, when were you diagnosed? What year were you diagnosed?
[00:06:53] Speaker B: I received my diagnosis in December of 2017.
[00:06:57] Speaker A: Okay. And how long before that were you feeling Symptoms.
[00:07:01] Speaker B: So I've been asked this question a lot and I can't really pinpoint because when I was 8 years old, I got type 1 diabetes. And along with that came a lot of different obstacles. Right, you're eight years old. What's happening? So actually moving over into Texas, I had to get all new doctors, I had to get all my medical records, and I went through and read them to see when is the first time it was done, documented in their medical record. And that was 2011 that I started bringing up. I'm really tired all the time. But I don't know, I was told, oh, your diabetes is poorly controlled. That's why you're so tired. Or, oh, it's depression and anxiety, that's why you're so tired. But it got to a point in high school where I was falling asleep babysitting. I had to pull the road because I just couldn't drive the 20 nights home from school. It just really started impacting my life. And there's no way it was due to diabetes. It was definitely not due to depression or anxiety. So I got that referral and got those big studies done, and that's when I was diagnosed with.
[00:08:00] Speaker A: So how did your parents feel back then? Because you said you got diagnosed with diabetes at a very young age. So that means that your parents was the one. Because my aunt had type 1 diabetes. That's when you have to have your insulin shots and they have to check your sugars all the time. Is that correct?
[00:08:15] Speaker B: Yeah.
[00:08:15] Speaker A: So that means that your parents had to be controlling all of that. You have to keep your stuff in the fridge, they have to check you all the time. This is something that is very regiment and they can't just leave it for you to do because it could cause. It could be detrimental. So how did your parents feel when the doctors were saying, oh, you're not controlling your diabetes properly?
[00:08:33] Speaker B: Growing up and going through hormonal changes in the body, it's inevitable to have a hard time keeping your perfect blood sugar number. It's really hard to do that in general. So I think they just worked hard to work with me. I was on insulin for about six months, and then pretty early into that diagnosis, I was put on an insulin pump, which helped. But I will tell you, since 8 years old, I've had the most control over my diabetes. Last two years when I started PGM system that connects to my insulin pump. So it's like an automated. It will give me more if my blood sugar is going up. But I had to become really Self aware at a young age, you know, my blood sugar was going well, I could feel it. I knew some activities affected me more than others. So I was preparing to develop earlier in a younger age. These types of body awareness and self awareness.
[00:09:20] Speaker A: That's really good. So you got trained quite early how to listen to your body, which a lot of people find quite difficult to do.
[00:09:26] Speaker B: Yeah.
[00:09:27] Speaker C: Do you think that helps you to recognize the symptoms of IH when it started?
[00:09:31] Speaker B: I do think it helped me realize there was something more wrong than just being tired. It wasn't that I was not sleeping, I was sleeping excessive amounts of time, but because I had been told I had no reason really to question at a younger age when I would say, oh, I'm just so tired, I had no reason to question. The doctor's telling me always just shoot IVs until it started getting to that point where I was like there's something wrong. This is not just because of this, but I will say I think it helped me significantly post diagnosis as well be more aware of my symptoms and start learning my body in a more in tuned way.
[00:10:06] Speaker C: And do the symptoms of diabetes and IH overlap at all?
[00:10:11] Speaker B: Poorly controlled diabetes can cause fatigue, yes, but otherwise, no.
[00:10:16] Speaker C: So is it quite clear for you when you're experiencing symptoms, which condition that comes from?
[00:10:21] Speaker B: Yeah, with diabetes, yeah. I do know when my blood sugar drops really low, I will notice before I'm even low. I get very clammy, sweaty, shaky and I need to have some type of sugar. But if my blood sugar goes high too, I do get kind of more irritated after getting a headache. It is easier for me to distinguish between that and ih.
[00:10:42] Speaker A: That's good then.
So you said you were having to pull over on the way home from school and things like that. And so what happened next?
[00:10:52] Speaker B: I was referred to Boston Children's Hospital for the sleep study. I had the ntsp, the overnight sleep study performed followed by the MSLP daytime nap study. And my overnight sleep was normal. I had everything, every run stage that I needed to woke up. And during the daytime nap, my average sleep latency times did. The time it took me to fall asleep for each of the five naps was 4.8 men. So even after a full night's sleep of quote unquote normal sleep, I was waking up still being able to fall asleep extremely fast during the day.
[00:11:29] Speaker C: Do you know what the diagnostic criteria for IH is? Because obviously it is different from narcolepsy, but it seems like the tests for it are quite similar.
[00:11:38] Speaker B: Yeah, there's Been a lot of talk about how there probably should be different testings developed for even narcolepsy 2 narcolepsy and IH. But the difference between it is that in my daytime nap I do not hit any type of REM stage sleep. I also know the cutoff for that diagnosis on that particular testing is below eight minutes. So if you fall asleep below eight minutes for all of the flies schedule of nap, that qualifies your diagnosis for IH along with any other patient reported symptoms of excessive daytime sleepiness and long sleep duration and things like that.
[00:12:15] Speaker C: And for narcolepsy, is it under five minutes to fall asleep for the naps?
[00:12:19] Speaker B: I'm not sure. My understanding is that it was eight minutes for all, but I could be long. But I just do know that narcolepsy tend to fall into REM sleep in those 20 minute nap intervals for all of those.
[00:12:32] Speaker A: So that means you don't have any dreams?
[00:12:34] Speaker B: I don't really remember any dream, no.
[00:12:37] Speaker A: Oh my God, you're so lucky. I wish I could swap like I'm dying to get rid of my dreams at the moment. I wrote to my doctor yesterday, I've been having horrific vivid dreams and I wrote to him yesterday and said to him he needs to find me something to get rid of them. I want them gone. I am willing to get rid of good dreams now just to not have the bad ones. Yes, it's absolutely out of control. So. Oh my gosh, you don't remember them?
[00:13:05] Speaker B: I don't. I mean it's very rare current, but that is also, I know, very specific to myself. Other people with IH do dream and they do have those in dream. I can't say last time I remembered a dream, definitely not during a nap.
[00:13:17] Speaker C: And are you prone to things like sleep paralysis, hallucinations as well, or is that more specific to narcolepsy?
[00:13:25] Speaker B: Those of us I can experience, those I personally do not. But I do know a lot of people do experience that.
[00:13:33] Speaker C: And so what do your naps feel like? Do they feel refreshing for you or do you wake up when you feel like you could have a nap all over again?
[00:13:41] Speaker B: My naps make me feel worse than I did before I took it. So I tend to try not to nap because I wake up feeling just awful. The mental growsiness, it's really hard to snap out of it. That doesn't mean there aren't those times where those sleep attacks that some people call force me to take a nap because there's absolutely no other option. If I do something else it just, it won't go well. So I've actually more recently I've been struggling with my intense fatigue and I've had to nap more frequently pretty much every day. The other day it took me about an hour and a half to two hours to snap out of that. Oh, the heavy feeling in your head, just groggy, you're not quite in it. I sat out in the sun, I tried to get up and walk around but nothing really helped until I just gave it the time.
[00:14:28] Speaker A: That must be really frustrating because if you're having a sleep attack or excessive daytime sleepiness and your brain's like starting to shut down and it's saying that you need to sleep, you need to sleep, but then when it shuts you down and then you wake up, you feel crappy, then it's almost like, why did you go through all of that?
[00:14:47] Speaker B: You know, time to avoid it. Yeah. Wow. If I, if I can sit there too.
[00:14:53] Speaker C: Yeah, that's what I was going to ask. Like how easy is it for you to not nap during the day? Do you take medication to help with that or do you just have your own strategies that you've worked out over time?
[00:15:04] Speaker B: I have both. I take a stimulant during the day. I am currently taking Adderall 3. Well, I'm messing around with phenotype right now, but I have been taking Adderall three times a day. I can take it some days and fall asleep. 20 milligrams of Adderall, fall asleep 10 minutes after taking it and be out for longer than an hour. So some days that is not enough. In other days, other days I can't push through. Other days I take my stimulant if I am still feeling okay enough. I actually, through my education in OT school, I learned a lot of different strategies to use for sensory processing disorders or autism to help with sensory regulation and everything. And so I started incorporating more of that into my day to day routine.
[00:15:50] Speaker A: Can you share some of those future?
[00:15:52] Speaker B: Yeah, of course. Movement helped me a lot. So sitting in a tear. I think for anyone with IH narcolepsy or with no sleep disorder, it takes a toll. You get very sleepy. My time period to do to sit in a chair is a lot shorter. So every 30 minutes or so I will get up and move or I will stand and work on my computer. So that way my body is moving. It's just more alerting to my body. I found certain snacks specifically like crunchy foods. So not even just like potato chips or anything in that nature. But even carrots, bell peppers, anything in. Oh, that's crunchy. It kind of just, it's another input helps me regain or not fully, but enough so that I can keep going. I love seltzer water. The fizziness. I always have at least normal water with me. I can throw back some water and hopefully help myself. I noticed the temperature in the room significantly affects how I'm feeling. So I tend to try keep my environment cooler because warm makes me extremely sleepy. And then I just kind of implement different strategies like casing breaking tasks into smaller box, like a bigger one into something smaller. And you don't necessarily have to do that entire big task in one sitting. If it's going to help you to break it up and then get it done eventually at the end, then that's something I found to be more successful for me. So yeah, some of the things that I've used to help me, but I mean there are, there are going to be days where none, none of that works. So I do my best.
[00:17:24] Speaker C: I think I've realized recently how important the movement one is because I've just transitioned into a job where there's quite a lot of sitting, I should say as well. I'm an slt, a speech and language therapist. So we come from similar worlds, I think.
[00:17:38] Speaker B: Yeah.
[00:17:39] Speaker C: And yeah, I definitely need to get up and move every half an hour. And it's not necessarily because I'll get like fully sleepy, but I just feel like that brain fogginess start to roll in if I don't get up and move. And sometimes that is enough just to keep it away for a bit longer.
[00:17:56] Speaker B: Yeah, it's something I found too, even on coordinated seating, which all of this kind of relates back to my OP background and I'm sure you've learned some of that as well. In speech and language school, everybody has different distinctive needs, but not everybody has that educational background to be like, oh yeah, why don't I try that? So I'm really trying to put more of that out there to the sleepy community because if you don't know about it, there's no way you would ever try sitting on a yoga ball. You can bounce, you can move like you're activating your core rather than sitting in a chair and you're just leaning back and taking nothing out of your body. There are going to be times though that you need that and you need to just sit down and do nothing. But yeah, I think a lot of those strategies can be applied to helping us succeed in our daily lives.
[00:18:41] Speaker A: That's Interesting. The yoga ball one that you said. Because I remember when I just moved into my flat like 21 years ago before I got my sofa. So because I just moved into Scotland, I just got my furniture like bit by bit by bit. So my first thing I had was my bed, obviously the stove, the fridge and the washing machine. I had my little television that I had from when I was living at home. But I didn't have a sofa, but I had my ball and I just used to sit on the wall and watch tv. And I remember this because at the time it was Prison break had just come out. I used to get annoyed if people called me to talk to me. I was like, I can't talk, I've got prison break. And I would just be pouncing on the wal it with my little television. Let's watch it. Prison. Now that you said, I think about it, it's funny, we got. I did that for quite a few months before I got my sofa. Could afford to get a sofa.
[00:19:31] Speaker B: Did it keep me awake?
[00:19:32] Speaker A: Yeah, it did.
Funny enough. I just never thought about it like that.
[00:19:37] Speaker C: Maybe I'll try that at work.
[00:19:38] Speaker B: But you don't want to be the.
[00:19:39] Speaker C: Only one sitting on a yoga ball.
But if it helps.
[00:19:44] Speaker B: Wait, is it helps then. Oh, wow.
But they also do have those little crickets too that a lot of the kiddos will use in the school system so it is less distracting. I mean, in a school system with kids, they're going to be distracted by someone sitting on yoga wall because they're going to want to do that too. So it's like a little cushion that you can put. The more you fill it with air, the stiffer it is. But if it's deflated a little bit, it helps with that movement. So that's another option.
[00:20:10] Speaker C: I've seen those actually. Yeah, a lot of autistic kids use them for all like if they have adhd, for kind of that sensory input. Yeah, that's a great idea to give that a go.
Can you tell us more about your job or. I mean you might have already covered this, but if not, it's great to hear a bit more about it and whether, you know how IH impacts your career as well.
[00:20:37] Speaker B: Yeah, I actually have not officially worked as an OT yet. I just got my first job. I will be working in pediatric home health, so applying a lot of what I just talked about to the kiddos that I'll be working with. But I did get my certification last August, so it's been a while. I went through a Cross country move. Thank you. It was huge, huge accomplishment. I did a cross country move and just wanted to get settled first. But I've been doing a lot of work with the Hypersomnia foundation on collaborating with videos and doing social media content to raise more awareness for IH and kind of share some of the tips that again, as I've been talking about today with people in the I community and even autopsy because they are similar in what we experience. I've been doing a lot of research on OT with state disorders. Doesn't really exist right now, but I would love for it too. I mean anything to help with like health management even or sometimes even basic activities of daily living are extremely difficult to perform. Working education, it seems almost unreachable because of the limiting factors of these sleep disorders. But again, a lot of people don't have these strategies in their back pocket or have the knowledge of them. So I'm trying to push that out there. We love for an O key subfield in sleep disorders and even chronic illness in general because I think that's a really under represented area.
[00:22:07] Speaker C: That's so interesting. And can you tell us a bit about how you navigated job interviews or whether you have requested reasonable adjustments for ih?
[00:22:19] Speaker B: I had accommodations throughout school, throughout interviews. I was nervous at first. I actually went back to some of my previous professors in my OT program and said, how would you approach this in an interview with like how. How do I disclose that I have a sleep disorder that isn't impacting my capability to be a great therapist and it's never put anybody in any harm or safety concern. It's more for myself. I don't want to burn out. I don't want to overexert myself to a point where I can't be an OT anymore because I love this profession and I've got a lot. I act more than just my professor too. I know there's a lot of varying opinions. You know, wait until after you get the job offer, Wait, don't tell them. They don't need to know. But you know, to me that goes against who I am. I've never been someone to withhold information. I'm not embarrassed about it. I can't control it. And there will likely be a point in time where I will need some type of accommodation or just more flexibility. So I've always presented that in my interviews and said, you know, I do have a sleep disorder. I have a strong passion for sleep related issues when I work with kiddos. I would love to see something if that at all available. And I do think it helps me relate to a lot more kiddos on a deeper level because I have experienced what it's like to feel those feelings. You know, like, oh, I'm. I'm not normal, I'm not like the rest of them. Something's wrong with me. So I do in one way feel like it's a really strong attribute to myself. I can say, you know, I do have this ability to connect on a deeper level, but at points I know I will need some type of flexibility because I need that for myself. Nobody gave me a hard time for it.
[00:24:01] Speaker A: That's good.
[00:24:01] Speaker B: But I'm also in the OT profession. We tend to have a really understanding, empathetic population of people who are OTs and speech and physical therapists because we're helping people who have disabilities. We understand what it's like. You go outside of that, well, it's not great. So, I mean, I think spraying as much awareness as possible to make it more understandable to other people and other professions, extremely needed. But I did accept this job in home health because I basically create my own schedule and it's very flexible. I don't have to have 30 patients a week. I could have one if I wanted to. I could have five, 10, 15. It's really dependent on my needs. And then they ask me where I want to, for what zip code I want to be in to be presented with kiddos and I can accept or deny them. So that to me was huge, you know, going into it. It's actually kind of already going into it. Struggling with more fatigue than I had in the past, which I'm excited for it.
[00:25:04] Speaker A: I'm excited for you too. That's so good. I like that, that you get to choose your zip codes because that means that you could, you know, obviously choose a zip code closer to your residence so you don't have to burn out driving hours and hours to and from one place.
[00:25:20] Speaker B: Yeah. So it can be as far as a 20 minute drive and that's it. Everything else could be closer, could be within that 20 minutes. So I'm really happy that they had that as part of their program in their company.
[00:25:31] Speaker C: I also love what you said about how having IH or a chronic condition is an attribute, because I think it's as hard as it is to have a chronic condition, it really does give you that extra layer of understanding for the caseload or the clients that you work with, because those are people that also have disabilities or they're neurodivergent or they're different from the norm. And having that extra understanding, even though it might not be be the same condition or same brain differences, it does help to put yourself in their shoes a little bit more and just think, yeah, I know how hard it is to be different from the average person.
[00:26:06] Speaker B: Absolutely.
[00:26:07] Speaker C: And can you tell us a bit about your experience of university and any reasonable adjustments you had, any challenges that came up for you?
[00:26:15] Speaker B: For my lecture, I went through a two year accelerated program. So it went all through fall, spring, summer, it went all through. In my lecture courses I had accommodations for being able to. I mean, even if I didn't need the accommodation, I still put it in writing just to help cover myself in the case I did need it, I couldn't. I could always have snacks and water. I could stand at the back of the classroom and use a standing desk. I could get up and walk out of the class, no questions asked if I really needed to, which I did have to many times to just help, help move. Is my university provided me with a recording device, pen, so I could ask my professors, you know, is it okay if I record this lecture today? Great. And then I could record it and go back later when I was at home, I was having a really strong brain fog day, really strong. Like I just could not focus. I could go back and listen to it, which was extremely, extremely helpful for me to succeed in those classes. I did have the acclamation to have my car parked closer to the buildings I would be in. In the case, like a very long day, I could go and zip my car, not have to worry about anything, you know, my safe space in my car. I'm trying to think. I think those were the majority of my lectures. But when I went into field work, that came into a huge piece of self advocacy. I didn't do as well of a job advocating my needs and kind of what I was experiencing in my first blind. So for my second one I reached out to my fielder coordinator was like, can you have a meeting with me with my next field work placement before I start so I can express kind of what it is that I have, how it affects me and what kind of things might show up in that time period. And I did. And that significantly helped. She was a wonderful fieldwork educator and was always asking questions and started picking up on things that I was doing. Like, do you know that you're doing that? Like, no, I didn't. But it's all things that were helping me stay alert, stay focused, turn my brain off. If I had to turn My brain off for a couple minutes in between houses that we were going to. So, yeah, top of my head. Those were the biggest things that helped me throughout going, wow.
[00:28:23] Speaker C: So there's some really great ideas in there.
[00:28:25] Speaker A: Yeah, there's. I like the car one, because I never thought of that. Putting the car closer to the. So then you don't have to do that long walk towards the car and then having the car as the safe space. Yeah, I like it.
[00:28:37] Speaker C: And were any of those suggested by the uni or did you come up with all of those ideas and they accepted them?
[00:28:43] Speaker B: I didn't even come up with them. My faith doctor did, because I didn't know gradual was so much different than undergrad. It was way more intense, way more fast days. I didn't know what I needed at that point. I was like, I just need something, because this is. This is a lot. So she had provided me with a list of accommodations that other students have used in the past. We talked about which ones that I thought I might need. I wanted them on there or not. And then I brought that to the university and they approved them.
[00:29:09] Speaker A: So you had. You had a good doctor. That's nice.
[00:29:12] Speaker B: Yes.
[00:29:13] Speaker C: And do you see?
[00:29:13] Speaker B: So she was through the children's hospital. So I aged out of there, and that was a sad transition. But more recently with my move to Texas, I just had had another sleep doctor appointment, and she was fantastic as well. So I've been lucky with doctors in my journey through ih, but, you know, that's not the case for all, unfortunately.
[00:29:37] Speaker C: Do you feel like the knowledge of doctors is increasing about i8?
[00:29:42] Speaker B: I would like to think so. There are definitely lots of effort happening to make more doctors aware. Do I think enough of them are aware? No.
Even with narcolepsy, I mean, I know a lot of people have to wait so long for that diagnosis, and it's an unnecessary amount of time where you could have been getting treatments that helped you, where you were suffering and struggling to do what you wanted to do. I think it's slowly becoming more aware, but slowly being empathized.
[00:30:10] Speaker C: And you're helping that process as well with your.
[00:30:14] Speaker B: Yeah.
[00:30:16] Speaker C: Can you tell us more about how you got into that and the kind of content that you create?
[00:30:21] Speaker B: Yeah. When I passed my certification exam, because before that my brain was like, just get to that exam. Right. I'd always had in the back of my head, wonderful. Using speech disorders. I wonder what role we could play with people with speech disorders, because I'm using all these things and they're helping so after my exam, I dove into researching what is out there. Well, as I said a little bit earlier, nothing, not very much. There's a lot on insomnia and sleep apnea, but there's not a lot on hypersomnia for excessive daytime sleepiness, both being narcolepsy and I ache. So I just kept digging what's even out there, what resources are out there for idiopathic hypersomnia that I could potentially start contributing to. I found the Hypersomnia foundation and we checked them. I sent them an email and just said, hi, my name's Haley. I just graduated with my master's in ot. I have iat. I would love to talk more about how I can get involved. So I had a meeting with them. I met a lot of crew members on their team who are all wonderful, wonderful people. And even like going through social media, there was not much representation of IH at all, especially for a patient perspective, somebody living with that condition. And there's a lot from our galaxy, which I think is fantastic, but that isn't there for ih. And the members on the Hybrid abuse team are the ones who kind of relate like, you should go for it, Make a social media account, start posting, start making content about your ideas. And so I was like, you know what? As uncomfortable as I am on social media, I was going to go for it because what. What else, you know, it's. It's a step I can take at this moment in time. So I started my account under the Sleepy O key, which I have been more active the last couple months. But I have been struggling and with my move, everything was just absolutely crazy, as you can imagine. But I post educational videos about IH itself to help bring more awareness, but also to help others with IH kind of so validated in their journey. Because I'm sure you both can relate to when your first sightness is so scary and can feel extremely isolating. Like, I'm the only person that has this. I'm the only person going through the struggles right now. And as hard as it is to have someone else have those same troubles, because you wouldn't wish that upon anyone, it's also validating to know you're not alone. And so that kind of been a lot of what I've been sharing of. You know, these are the samjangs. This is how it's affecting my life. I'm sharing some of my story and how IH is affecting me more. So now I shared some things about my OT strategies that I've tried that have helped me with the movement and the sandbox and those types of things. But I do plan to continue growing that into more pipped and strategies and just really pushing out more awareness for these disorders that are very not well known about.
[00:33:15] Speaker C: Amazing.
[00:33:16] Speaker A: Yeah, I'm so glad you're doing that. It's true. There isn't a lot of representation for ih, which is sad. And I call it IH the Sisters in Narcolepsy. So, you know, it's sad if your sister is not getting a lot of recognition and you are. So I think it's like so important to keep pushing and getting that information out there so people of IH can see. Yes, there's another one. Oh, there's another one. Yeah. So they don't feel as alone here.
[00:33:42] Speaker B: Yeah. And it's. I will say too, it has been amazing for me to see the types of responses from even what I've been posting. And I can think to myself, oh, this isn't really going to help anyone. But those are the videos that I get the most responses to. And I had people reach out and say, thank you, thank you for posting this. Thank you for being vulnerable. Like I, I felt alone. I'm Jeff Burning my journey. I8 and kind of seeing your perspective and view on twist on things have been really helpful. And I have never met someone personally in real life with IH or narcolepsy. So everybody around me, I feel, doesn't truly understand the full extent of what it is we experience, which is okay. I don't think anyone can ever completely comprehend what it is that we feel and experience every day. But it's on a whole another level when you start connecting with the community of people that get it that, that don't have the same exact life and experiences and everything, but they share a lot of similar symptoms and reactions and all these things. So it's been huge, huge, huge thing for me to be able to feel that from them too.
[00:34:50] Speaker C: Community is key.
[00:34:51] Speaker A: Yeah, definitely.
[00:34:53] Speaker C: Do you have any tips for people who might want to put themselves out there, start advocating a bit more on social media but feel uncomfortable doing it or a bit nervous about it?
[00:35:02] Speaker B: Yeah, yeah, just do it.
I was nervous, I was scared. I think nobody's going to see this. I don't even know where to start. And so I just started and if it failed, it failed. Oh, well, I tried, you know, at least I tried, but it's slow growing. I mean, I don't have this huge, massive following, but that's completely fine with me if I'm helping one person feel left alone or figure out some type of strategy that's going to help them function better in their daily life. That is my goal. That's what makes me feel fulfilled and happy. But I will say I was not confident going into it. So yes, it's scary. Yes, it's a huge piece of vulnerability playing out into the Internet for anyone to see. But how else are they going to see it? How else are we going to spread advocacy? How else are we going to spread awareness, show people what it's like to live with what we live with and that we show it. So I think just do it. If that's within your gut and you feel like, you know, kind of something I want to do, try it out.
[00:35:59] Speaker C: I hope that inspires a lot of people to give it a go and get the message out there.
[00:36:04] Speaker B: It's a lot easier said than done. I get it. I do. I get it.
[00:36:08] Speaker C: Even I keep promising Carolee that I'm going to make some videos or do something on TikTok to spread awareness of our podcast and then I keep chickening out. So I think I should take a leaf out of your but yeah, there's.
[00:36:21] Speaker B: No better way to try than to just go for it. We do our best, right? I've been so inconsistent with my postings because of everything that's happening in my day to day life, but the people who are there for the right reasons stick around. They get it too.
[00:36:34] Speaker A: So true. I like that. The people who are there for the right reasons. Yes.
[00:36:38] Speaker C: Just out of curiosity as well, because we come from a similar professional field. Do you ever feel like there are risks of putting yourself out there with your identity as someone with ih, but also as an ot?
[00:36:52] Speaker B: Yeah, but as I said, I don't hide. When I have this sleep disorder, I cannot control it. I can't control how it affects my body. What I can control is, is how I share that. And I consider myself to be a very honest and upfront person. So no, I would never put myself in a situation that would cause harm to me or other people. So it's just sharing some information about ih, about some OT tip. It's not causing any harm.
[00:37:20] Speaker C: Yeah, I love that. I think it's so interesting, isn't it, when you have a chronic condition or a disability? Because I think for me, I was always made to feel when I was at university like it wasn't professional to have a disability or have a condition. But obviously it's not something that's in your control. And as Long as you can work effectively and safely, it's absolutely fine. And it's not unprofessional to be a person that also has other things going on.
[00:37:45] Speaker B: Definitely. I think it's distinct separation too. I mean, your praise of employment if you're not doing those things while you're there, it shouldn't be that big of an issue when it's your own personal time. But yeah, that's my take on it.
[00:37:57] Speaker C: Yeah, definitely. And a lot of people do need reasonable adjustments as well. And I'm one of those people. And I think, like you're saying, it's so important to advocate for yourself and make sure that if you're comfortable with it, that your employer is aware. Because then if you do need any extra support, they have that understanding of your condition and they can support you in the best way, then.
[00:38:17] Speaker B: Yeah. I've heard stories of people be getting to work, you know, when they don't disclose that they don't have accommodations, but then they do need them, they think, well, what do I do now? Will the employment neglected me or I can't tell anyone what to do. If you're not comfortable bringing it up to the employer when you're being interviewed or once when you're hired, that's completely your call. But when it comes to these sleep disorders, narcolepsy and ih, I think there is a level of unpredictability in how we are feeling and how our symptoms are going to affect us. So if we can be more upfront with it, it could really help us out in the long run.
[00:38:56] Speaker A: Definitely, definitely. Because I think the problem with trying not to disclose something is that it's going to cause you stress. This is the thing, because you're thinking always in your mind, I can't let this show. I can't let this show. I need to be as normal as possible. And the more you think like that, the more you're going to get stressed. Even if you don't think it's showing, it's just building, building, building this stress in the body.
[00:39:22] Speaker C: Pressure.
[00:39:22] Speaker A: Yeah, and pressure. And that stress and pressure will cause you to have more symptoms than you would regularly have because of this, you know, cortisol release of this just like anxiety all the time, trying to hide it better off, just to be honest. And if the people don't want you, then I say that this their loss. And somewhere a new economy that is going to hire you, that is going to be a better fit, fit for you in the long run than working somewhere, stressing yourself out in the end.
[00:39:52] Speaker B: Yeah, yeah, I agree. You're not required to either. It's not a law that you have to disclose you have a chronic condition or an illness or anything to your employer. It's more just for yourself.
[00:40:03] Speaker A: I would say if it was something that you could hide easily, it would be different. But because as you were saying, it's so unpredictable. You might go in today and tomorrow and you'd be absolutely fine. No one can see anything. And then you go in Friday and it just decides to have one of those days where everything has gone wrong and it just won't calm down. What are you going to do now? Because you can't snap yourself out of it and just, you know, tuck it in and you can't. Then what do you say? What do you do then?
[00:40:30] Speaker B: Right. I think that brings a lot of mapping to light. I had a huge eye opener this past holiday season. I had been able to mask my kingdom for a very long time, subconsciously, just. Just out of fear. I didn't want people to worry about me. I didn't want, you know, my parents to be concerned or anything like that, extended family. But I got to a point where I could not mask. I was feeling so off, and extended family members were asking, is she okay? What's wrong with her? Like, if only you knew who this is. Actually what I felt like all along, I just could hide it, but we shouldn't have to hide it because it's not who we are, people. It's just something we have to deal with every day, very clear.
[00:41:18] Speaker C: And I think something that's so important to remember as well is that even though it's not in the law that you have to tell your employer about your disability, it is in the law for them to make reasonable adjustments for you if you do. And that legislation is so important for us because it means that, is there something they can do to make it easier to make us more effective in our job, to make us productive and not unequal to others? Then they have to put those adjustments in place.
[00:41:46] Speaker B: There are many instances that I have heard of where they can justify that it's not reasonable. Which is a very frustrating for you as the person just trying to work and succeed and live your life with something so simple. And I think that is huge when it comes to even just representation for those laws to protect us. It blows my mind to some of the stories I've heard that that something so simple as an accommodation was just denied. It makes me sad, really. It's just not fair. But also that Company probably just not the right fit for you. They can't help you succeed. When you know what you need to succeed, then there'll be something else out there for you that will help you.
[00:42:27] Speaker C: Definitely. And they're showing their true colors in that moment. And that is not a company that you want to work for long term.
[00:42:34] Speaker A: Yeah. Because if they can't make original adjustments to something very simple, it means if you were going through something actually very difficult, you would be having a very hard time with them.
[00:42:44] Speaker B: Right.
[00:42:44] Speaker C: And no job is worth sacrificing your mental health for. I know that's a privilege thing to say, because at the end of the day, we all have to work, we all have to earn money, and not everyone has the choice in what job they have. But if you do, then putting your mental health, your physical. Well, being first is so important. When you have a chronic condition in particular.
[00:43:03] Speaker B: Yes, completely agree.
[00:43:04] Speaker A: And sometimes even opening your mind to think of a shift, say you studied in a particular field and you had a tunnel vision of what you wanted to do. Open up that to a wider vision and you could see more job opportunities that you didn't realize options or you didn't want to do them before, but actually they might be better suited for you. And you're using the same skills and the same knowledge that you gained when you studied anyway.
[00:43:28] Speaker B: Right. Yeah. Just having a more broad outlook. I don't know, maybe that's not the right word, but something like that. It works.
[00:43:36] Speaker C: It works.
[00:43:36] Speaker B: We used to break fob in this podcast, Sudden Blank. Alex said, well, that thought is gone.
[00:43:44] Speaker C: Is there anything else that you would really like to share with our listeners? Anything that you really want people to know about IH which you feel is still misunderstood?
[00:43:55] Speaker B: There's so much happening in the world of IH right now, especially over here in the U.S. there's a lot of initiatives. We have a nationally recognized day for IH now, which is so exciting. But just you get involved as much as you can. Community is key. The more you can surround yourself with people that get it, the more you kind of feel like you fit in who you are as a person. You're not alone in this journey. Always fight for yourself, advocate for yourself, prioritize yourself, and do whatever you can to make sure you're taking care of you. Because at the end of the day, that's all we live with ourselves. We are our only one confidence. So take care of you.
[00:44:37] Speaker A: I love that. Take care of you.
[00:44:39] Speaker C: So important.
Carolee, is there any other questions you wanted to ask?
[00:44:44] Speaker A: No. I think Hedy has said her stuff really well and covered her stuff and given us lots of little nuggets.
[00:44:51] Speaker B: Well, thank you very much for having me on here. It was a pleasure speaking to both of you.
[00:44:56] Speaker A: Yeah, it was a pleasure speaking to you too.
[00:44:58] Speaker C: Yeah, thank you so much. And I'm wondering if I can finish off with my end of the podcast question, which is if you could press a red button and get rid of IH and never have experienced it, would you do it? And why?
[00:45:12] Speaker B: That's a tricky question. Would I absolutely love to not feel the way I do all day long, every day? Yes. Would I be where I am today without it? Probably not. A lot of lessons learned in life, maturity, independent experiences. I wouldn't have had any of that. My life was like completely different. And I'm not one to try to think back to the past and wish things were different or wish this or that. I like to be more present. So if I could be not as sleepy and recruit peace, some will be sure. But I don't think I would be who I am today without it.
[00:45:44] Speaker C: Thank you so much. Oh, I've thought of one more question. Okay, this hopefully is a quick one. Just out of curiosity, because you have diabetes and ih, do the medications interact at all with each other? Do you have to be careful what you take or is it okay?
[00:45:59] Speaker B: No, I don't have to be clashing, but I don't only just have those two either. I do have quite a few other conditions. I have endometriosis, mast cell activation syndrome, hereditary alpha trichemia, and recently some thyroid problem. So with that, there's a bunch of other medication, so I want quite a few. But I work with my doctors. I try not to be on too many because I just don't want to have to be on medication my whole life. But in terms of my diabetes, not usually. It just, you know, more managing my diet and making sure I'm eating healthy and staying on top of my blood sugar, taking insulin and all that.
[00:46:33] Speaker A: Hailey, you mentioned one of the illnesses. Did you say mouse mouth?
[00:46:39] Speaker B: Mast cell activation syndrome.
[00:46:41] Speaker A: So I think there was another lady, a friend of mine that we interviewed that has this. Can I link you to her?
[00:46:48] Speaker B: Sure, yeah.
[00:46:49] Speaker A: Yeah.
[00:46:50] Speaker C: What is it?
[00:46:50] Speaker B: It is basically an overproduction of histamine so I can have a lot of different bodily reactions to foods, drinks, sometimes just an environment. It's a lot of flushing and it does cause a lot of inflammation internally. The better handle you can have on it, the better you'll feel. But then again, Sometimes dietary, unpredictable. And something I can eat every single day that doesn't make me have a very extreme reaction could make me have a reaction. So that has been a little difficult because it does play into my fatigue levels. It intensifies them quite a bit on top of the IH symptoms. So I kind of ask, you really do what I know works well and adjust if that changes or if something comes up.
[00:47:34] Speaker C: Well, that's a lot to manage.
[00:47:35] Speaker A: Yeah, it is. And you have a good doctor that's dealing with that one.
[00:47:40] Speaker B: Yes, and. Well, I have a fan plastic doctor before I move. I am still trying to get one here. So I do take antihistamines every day to help with those reactions, keep them either to a lesser degree or at bay. But moving comes with a lot of challenges, including finding an entirely new medical team. So I am trying my best to keep it at least maintained for now.
[00:48:04] Speaker A: Yeah, I always find it interesting when I find someone who has a sleeping disorder like narcolepsy or ih, and then they have a different combability, and then someone else who has narcolepsy or I also has the same one. I always find that because I always, like, wonder, why is it that there's, like, an overlap in certain comorbidities?
[00:48:22] Speaker B: I think there's a lot. If I'm being honest. I think there's a lot that overlap with autoimmune dysautonomia, those types of conditions with methy. And I've heard a connection of Ehlers Danlos syndrome with narcolepsy, specifically pots. POTS being one. That is very. Yeah. So there's got to be some type of connection. It's just not really determined scientifically yet.
[00:48:48] Speaker A: Yes. So you hear that, doctors. Time to do research. Would like to know what.
Yeah, we're happy to participate, you know, and help you. Just, you know, give us a call. We want to.
All right, guys. We usually end with happy napping, which is so interesting because I said to Haley, oh, I'm gonna take a nap. And then she said, happy napping. And then I was gonna tell her, I can't believe it. And sh. And then I thought, oh, I tell her later. I just needed to take from there.
[00:49:25] Speaker C: You must be psychic, Hayley.
Well, I was like, massive.
[00:49:32] Speaker B: Napping.
[00:49:33] Speaker A: Napping, everyone.
[00:49:35] Speaker C: Napping, everyone.
[00:49:38] Speaker A: Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice.
Thank you for spending time here with us at Narcolepsy Navigators. I hope you learned something new. Please share the podcast with others. You can find us on all platforms. See you next time when we delve into another person's story.
