S3E10: Fred: Finding Freedom & Life on the Road with Narcolepsy

This week on Narcolepsy Navigators, Kerly sits down with Fred to explore what it truly means to live with narcolepsy while navigating identity, stigma, and self-acceptance. Fred opens up about the diagnosis journey, the challenges of being misunderstood, and how to balance vulnerability with strength.

From redefining what “disabled” means to them personally, to highlighting the importance of visibility and representation, Fred’s story is a powerful reminder that life with narcolepsy is not defined by limitations—but by resilience, courage, and the choice to live authentically.

This episode is about breaking silence, reclaiming identity, and inspiring others in the sleep disorder community to embrace their truth. Whether you live with narcolepsy, support someone who does, or simply want to learn more, Fred’s voice will move you.

Chapters

• 00:00 Introduction & Meet Fred
• 05:20 Early Experiences with Narcolepsy
• 14:45 The Emotional Weight of Diagnosis
• 23:10 Identity, Stigma, and Representation
• 34:00 Finding Hope and Resilience
  
  

Transcript

00:13 - Kerly (Host)

Hello, welcome. You're listening to Season 3 of Narcolepsy Navigators, brought to you by Naps for Life CIC. Narcolepsy Navigators is a podcast for raising awareness of these fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy, idiopathic hypersomnia and Klein-Levin syndrome. I'm Keri Boger, the founder of Naps for Life CIC, and welcome to our stories. Narcolepsy Navigators is excited to announce our new Patreon and merch store. You can choose to support us monthly via Patreon and receive bonus content from our advocacy and medical series, as well as a shout out on the show, access to Narcolepsy Navigator's Discord server where you can chat with other navigators, find support and ask questions to be featured in future bonus episodes. Higher tier supporters can also receive Patreon merch or, if a monthly subscription is not in your budget, you can check out even more merch on our website, wwwnaps4lifecom. Hi everyone, welcome to Narcolepsy Navigators. I'm Kelly, your host. I have narcolepsy type 1. 

01:30 - Liz (Co-host)

And I'm Liz, your co-host, and I have narcolepsy type 1 as well. 

01:34 - Kerly (Host)

And today we have Fred from the US and the topic for today is the US health system and coming to terms with disability. Welcome to Her Story. 

01:41 - Fred (Guest)

Fred, how was your week? It's been pretty good. I had some social events so that was a little exhausting, but luckily I don't have a job anymore, so I have plenty of time to rest. Nice what have you been doing socially? I went to visit some friends for a board game night last night and the night before met the parents of a person that I've been seeing lately. It was a lot of social interaction and driving around to different places. 

02:06 - Liz (Co-host)

Nice. Can I ask was the board game night anything to do with Dungeons, dragons, dragons, Dungeons. 

02:12 - Fred (Guest)

We didn't play Dungeons Dragons but we did talk about it because a lot of us have played it before. It was kind of a friend of a friend's gathering. My friend was there and then it was their friend's friends, a lot of people that I didn't quite know yet. But we just played kind of some simple games. 

02:28 - Liz (Co-host)

And Carolee, how was your week? 

02:29 - Kerly (Host)

Yeah, the week went quickly. My teacher was unwell and for some strange reason she didn't seem to want to have a sub, so we got to stay at home, which was nice. So I got to sleep in on the two days that I was supposed to be at college. She was sick both days. I wish her a speedy recovery. But it's the first time in my life where I've had a teacher be unwell and she's like oh no, stay at home, Don't come into school. Never have heard of this. So I enjoyed my sleeping in. 

02:53 - Liz (Co-host)

So yeah, you're like oh, I'm sorry you're sick, but also happy days for me. I think after COVID a lot people realize sometimes you just need a break and it's okay if everybody else gets a break at the same time. Yeah, what about you, liz? As Carolee will know, so my gran passed away earlier this week kind of unexpectedly, and it's been very interesting seeing the effects of grief on my symptoms of narcolepsy. I've definitely noticed that I'm much more sleepy than usual and I've even noticed some cataplexy coming back a bit, even though I take medication to manage that. So I've had a few knee drop moments which I haven't had in so long. So yeah, it's been a sad week, a tiring week, but I went home to see my family, so that was really nice and just part of life, isn't it? 

03:39 - Kerly (Host)

no, we're sorry for your loss and take your time to grieve. 

03:43 - Liz (Co-host)

Grief is so different for every person yeah, I'm not surprised that your cataplexy would trigger be triggered by it yeah, it actually took me back to about 10 years ago when I was going through like a breakup with someone and I got cataplexy really bad, like I just felt really heavy all the time, like I was always on the verge of getting cataplexy and I forgot that grief does that for me. So yeah, it was interesting yeah. 

04:07 - Kerly (Host)

So, fred, could you introduce yourself to everybody if you tell them your name, what state you're residing in, how old you are if you feel comfortable with that and what year you were diagnosed? 

04:18 - Fred (Guest)

I'm Fred. I'm from the US, in North Carolina on the east coast. I was diagnosed in about 2017 or 18, I believe, but I've been traveling all over. I'm from here, but I've spent the last decade living in a school bus, rv conversion, traveling basically coast to coast up and down thousands of miles each year, and I have a few pets that travel with me a miniature goat and a couple of dogs. A goat. 

04:42 - Liz (Co-host)

wow, I have so many questions already. 

04:47 - Kerly (Host)

A lot going on. Does the goat mind being in the RV? 

04:49 - Fred (Guest)

she loves it. Her pen in the back is level with the windows, so she just lays back there and looks out the window at the road going by and choose her cud do you use the goat for milk or do you just have her as a pet, or both? Both. She's mainly just for a pet, but a few years ago she did have kids and I milked her for two years. So that was great to have milk with my sandwiches. 

05:09 - Kerly (Host)

A lot of it I fed to the dogs. 

05:10 - Fred (Guest)

If I didn't want to sanitize everything for me to be able to drink it, but it made the dogs very fat and happy. 

05:18 - Liz (Co-host)

And what inspired your lifestyle of living in an RV, bus and traveling around? 

05:23 - Fred (Guest)

I have a degree in anthropology with a minor in forensics, and I kind of just went to college because it was the thing that my family wanted me to do. It's what you're supposed to do when you get out of school. But I didn't want to have a career. I want to learn how to do everything and I want to see everywhere. I heard your story about traveling different places, and it's just once you start to see different places, you don't want to stop. You want to see everything there is to see. When I graduated college, I worked on a farm for a little while and then decided you know what? I'm just going to go on the road. So I bought a camper and traveled in that for a year and it was too small, and then ended up converting a bus with a friend and I've been traveling in the bus since 2015. Wow, that's so cool. 

06:04 - Kerly (Host)

I have a little confession. So when I was having very bad insomnia, there was like a year where the insomnia was just like off the roof Just before COVID I think, or around COVID time I just couldn't sleep at night at all. I got very obsessed with tiny homes and conversions. I watched so many conversions. I had to convert a bus into a home and stuff. I started to believe that I could do it myself. I could tell my sisters oh, you know, I just need the equipment and I can do this. And then the neighbor at my mom's had a van and that they were converting and I walked past. I was like oh, oh, my gosh. And then I just started talking to him because I've watched it like all the time, all night long, I knew all the lingo and everything. And he was like, oh my god, I can't believe you know this. 

06:42 - Fred (Guest)

And I was like yeah, when you've got a lot of time on your hands to learn, there's so much to learn and that's how I learned. You know, I didn't know how to do most of this. I just watched YouTube videos and rebuilt the bus engine it had blown a gasket inside rebuilt the engine and put in all the plumbing and the toilet and sink and air conditioner and electricity and everything solar panels. I love learning new things. That was one of the things I was going to talk about today is you feel like you can learn anything and you can do anything, and then you have to remember wait, I'm tired all the time. 

07:12 - Liz (Co-host)

You must be a very handy person to have around if you can just watch a video and then just give it a go yourself. 

07:18 - Fred (Guest)

Yeah, I kind of feel like the most important thing to know is that it's possible to know something. Once you know that, that's a thing you can learn. You can always just look it up later and learn it when you need it. But if you don't know it exists, you don't know how to learn it later. So I just like to dabble in tiny little bits of knowledge, and then I can expand that if I need to. 

07:37 - Liz (Co-host)

That's very cool. 

07:37 - Fred (Guest)

I like that. 

07:38 - Liz (Co-host)

Do you think your sleep disorder has shaped your want to travel? 

07:44 - Fred (Guest)

I think it makes it a lot easier of a lifestyle for me than having a career where you go to work five days a week, nine to five every day, for 20 years and then you retire. I typically work part time half the year, especially if I have a travel companion to share the bills with. That's a lot easier. And then the rest of the year I just go hang out in the desert and sit there and read books and take naps anytime I want. And then the rest of the year I just go hang out in the desert and sit there and read books and take naps anytime I want. 

08:07

And when I'm driving around and I get sleepy, I have my house. I just pull over to a gas station and sleep however long I need to, and then I can get up again and start driving. Even if it's 3am, I can just keep driving. It's pretty good, I think, for the sleep disorder and a lot of the jobs I have is like a campground host, so I might get up in the morning, change the toilet paper and then come back to the bus, which is 100 feet away, and take a nap for a couple hours and then get back up and go mow the grass and then come take another nap. So it's kind of easy to do piecemeal the work as I need to. 

08:40 - Liz (Co-host)

Yeah, that's so interesting. 

08:41 - Kerly (Host)

I like that, such freedom. I love it. So what was your initial reaction to receiving your diagnosis or your specific disability? 

09:01 - Fred (Guest)

I initially went to the sleep doctor, talked to him, had a sleep study and then he came back with the diagnosis of narcolepsy, even though technically my sleep study didn't meet the qualifications, I think, for the sleep latency. There's a cutoff of eight minutes for the REM sleep latency and I was at nine and a half minutes, so I don't know how he exactly managed to put the diagnosis of narcolepsy in, but he did, and at the time it didn't quite feel like the right fit. Obviously I'm sleepy all the time. Something's wrong, but there are certain things about the narcolepsy diagnosis that weren't quite right, number one being, if I take a nap, it makes it worse. I don't feel better after I take a nap, I'll feel groggy and drunk and it's hard to get back up from the nap, even if it takes two to four hours for the nap. 

09:45

He never mentioned the fact that idiopathic hypersomnia is a thing at all. He only talked about narcolepsy. So we kind of went with that for a few years. And then, with my traveling, I never see the same doctor twice. Pretty much I might be in one spot for six months to a year. So I have to get everything done with one doctor within that timeframe and then, if I'm lucky, I might be able to do a telehealth call or get them to send records to a new doctor. It wasn't until this past year that I was able to see another sleep doctor and do another sleep study. Well, she wasn't a sleep doctor, she's a neurologist and mentioned idiopathic hypersomnia as an option. But my second sleep study ruled out narcolepsy based on the sleep structure. But then I also didn't quite qualify for idiopathic hypersomnia. I was off by 30 seconds on the diagnosis. So I technically don't have a diagnosis of either of those conditions. 

10:29 - Kerly (Host)

Well, I would say, 30 seconds doesn't count as anything. What's 30 seconds? 

10:32 - Fred (Guest)

Yeah, well, especially because during the sleep study I tried to explain this to the doctor, the nurse that was doing the study hooking me up and everything was listening to some very loud TV about an opposing political candidate. That is kind of terrifying for everyone in this country. So it was a little difficult to sleep properly knowing that the person who is taking care of you at the moment is a person who has completely opposing views and ended up trying to talk to me about some pretty invasive personal topics and trying to give me some anecdotes from her life that she thought might be relatable but were actually kind of horrifying. 

11:08

Not very professional at all. Yeah, I'm trying to take 15 minute naps and all I can think about is the things that this woman said to me before she left for her shift. So not exactly great for an accurate sleep study. 

11:19 - Liz (Co-host)

And if you're having a big adrenaline spike or cortisol spike from the stress, then you're not going to sleep in or cortisol spike from the stress, then you're not going to sleep in the same way that you usually would. 

11:27 - Fred (Guest)

Right. Normally if I have seven minutes of time on a break, I can take a nap. I can have dreams during that nap in seven minutes. This time in the five naps I didn't feel like I fell asleep once and apparently I did multiple times. So most of those I was actually able to take a nap and I thought I was awake the whole time. 

11:44 - Liz (Co-host)

And how does that feel for you, to be in between diagnoses or not really have an? 

11:48 - Fred (Guest)

official one. It's a lot of mixed feelings, because part of this that I was going to speak on is I have a dream of getting my pilot's license and if you have IH or narcolepsy you're disqualified medically from getting a pilot's license. It was something I was working on, just completed ground school and I was learning to fly. My dad's a private pilot and we have an airstrip here, so I've been flying my whole life. I just wanted to get the license, get the commercial license and be able to be a pilot for national parks. But when I found out that I won't be able to pass the medical exam, potentially even without the diagnosis, I might not be able to pass the medical exam because they interview the doctor to see what all your symptoms are. So even without receiving the official diagnosis, my symptoms might be enough that the FAA just says well, if you're this sleepy, you shouldn't be flying a plane. 

12:37

Part of me wants to have the diagnosis so that for future treatment going on it's not hard to fight the insurance company for the medicine, or so that if I have to apply for disability in the future I'll have that on my side. But then there's that other side of well. There are things I want to do in life that having this diagnosis will prevent me from doing. 

12:56 - Kerly (Host)

Yeah, that's sad yeah. 

12:58 - Liz (Co-host)

Does that mean that you can't access medication because you don't have an official? 

13:02 - Fred (Guest)

diagnosis. Certain types of medications medication because you don't have an official diagnosis. Certain types of medications, zyrem, for example. I think both of you were taking Zyrem. That's something I had been really interested in trying because obviously, if you can't think about anything but sleeping all the time and someone says here's this medicine, but it's really hard to get, and then they're like, well, if you had slept 30 seconds earlier, we could have given you this medicine that could change your life. The doctor was willing to try to help me get it initially, but said that even if I paid for it out of pocket, without the insurance, the regulations in the US won't let you have it. There's one pharmacy in the entire country that can give it to you and it's very tightly regulated. But then she ended up saying that, based on my sleep architecture, I have good sleep efficiency, so there's a chance that the Xyrem wouldn't really have made a difference. 

13:49 - Liz (Co-host)

You sleep quite well at night, it's just the fatigue in the daytime. 

13:53 - Fred (Guest)

Yeah, Currently it's managed. Okay, I'm on. Welbutrin is an antidepressant which is a stimulant. I'm not sure if the medicine names are different in different countries, but the generic name is bupropion, which it's interesting that antidepressants treat so many different types of things Also on cocalin. Next, methylphenidate, which is an ADHD stimulant, because I also have ADHD and depression. So between those two medications I mostly have been able over the past year to not be sleepy constantly. 

14:22

I still get usually multiple times a day where I'm just like I need to go lay down like I think about anything else, especially after I eat. It's been more managed the past year than it has been in my entire life, so that's been great and I'm hoping it stays that way. It's a little scary knowing that this is a cyclical type of thing the sleep disorders in general and the medicine not working good eventually, so I'm hoping it keeps working as well as it is so far. 

14:49 - Kerly (Host)

That's good. I'm glad you're on something and that's working right now. That's really good. That is very difficult when you're on meds that are not working. 

14:55 - Fred (Guest)

That can be very challenging and frustrating, yeah, so when I first was diagnosed with narcolepsy, they put me on modafinil and pramopexil and pramopexil is for restless leg. My sleep study said I was waking up 40 times per hour without realizing my limb movements were waking me up and I thought maybe I woke up about 20 times a night. But 40 times an hour is a lot and obviously you'll be pretty sleep deprived during the day if you do that. So the pramopePixel helped a lot with the leg movements, but it has a side effect of making you very impulsive. I got very hyperactive. 

15:30

It was a little bit scary because I'm normally a very calm and relaxed person and I was just ultimate caffeine, just jittery, bouncing around almost yelling at people. Just being so excited and then spending a lot of money is another side effect that it had. That was pretty unpleasant because I don't have a lot of money. The modafinil was so intense of a stimulant that I could only take a quarter of one. If I took more than that I'd have anxiety attacks every time. So a quarter of one was not strong enough to actually keep me awake. I just had to stop taking that. 

15:59 - Kerly (Host)

That is amazing. It's amazing how each drug works differently in everyone's body. Yeah, quarter of one, so like you're talking like 100 mils, a quarter of that, that's like 25, right, what's too much for your body? Wow, that's amazing. And I found modafinil like a smarty. Like when I just started I said 100 mils. By the time I came off it, by the time it had ruined my stomach, I was on 800 mils and it felt like I was taking smarties. And to imagine that 25 would make someone jittery, it's fascinating yeah, I was having pretty frequent debilitating anxiety attacks. 

16:31 - Fred (Guest)

It doesn't really look like anything to someone on the outside. I don't know if you've ever experienced them, but your brain is just racing thoughts. You can't breathe, you're kind of hyperventilating, executive functioning stops working, like I can't use my arms, I can't swallow water, and then it'll take four hours to recover from, like I'll just have to lay down in the dark and can't do anything. I'm glad that I haven't had trouble with that lately. 

16:54

I just have a laundry list of medical things, that kind of come and go which is a little frightening when you're like, oh, I thought I fixed that one, and then it comes back later. 

17:01

But, the Pramapexil for the restless legs. I had to increase the dose because it wasn't working after a while, and then it started augmenting the problem, which can happen. It can make it worse, and so you either have to increase it again or stop taking it, and increasing it didn't help. It was still getting worse. So I had to stop taking it and the restless leg syndrome was causing excruciating. It's not pain, exactly exactly. 

17:23

It's an uncomfortableness in your nerves, in all of your skin so I basically felt like I needed to remove my entire skin and put it in a different. 

17:32 - Kerly (Host)

Something is crawling inside. 

17:34 - Fred (Guest)

Yeah yeah, I have it. Yeah, it's just like if anything touches you, it's too much like your clothes touching is too much. I could be completely naked, standing on the floor with my arms straight out, and the fact that the floor is touching my feet is just unacceptable wow, and that's a side effect of the medication. I think that was the restless leg syndrome itself, and then the medication made it worse. 

17:56 - Kerly (Host)

Yeah, yeah, it's just the restless leg itself. What's frustrating is that with restless leg which is something I'm really annoyed about I had it in my 20s and we got rid of it because you just need your iron levels to be really high and then it goes away on its own. And now it's back and my iron levels are extremely low, so it's not going to go away. And what is acceptable for someone who doesn't have a sleeping disorder as an okay iron level, it's not okay. If you have a sleeping disorder, it needs to be like double that. Yeah. So if you go to the doctors and then they're like oh, your eye levels are fine, no, it's fine for an average normal person who doesn't have a sleeping disorder, you have your sleeping disorder. Your eye levels has to be double that for it to be fine, where did you hear that? 

18:32 - Liz (Co-host)

was that from a one of your doctors? 

18:34 - Fred (Guest)

yeah, it's a fact. Yeah, I know they tested my stored iron and I was on an iron supplement before my first sleep study because they wanted to see if that was just the whole problem, and it didn't really make a difference. I get blood tests pretty regularly, so it's in a normal range, but I'll have to look into that to see what they say about like do I need to have it even higher? I just recently was doing some Googling and saw that low histamine in your spinal fluid is correlated with narcolepsy and IH, but not sleep apnea, which is interesting because taking an antihistamine makes restless leg syndrome really bad, and I used to take benadryl every day because I was using a leaf blower and getting a lot of dust up my nose, and when I stopped taking the benadryl every day, it helped my restless legs a lot. 

19:16

So I'm really interested in this tie between the low histamine and the sleep disorder, because having low histamine does make you sleepy. That's why Benadryl makes you feel sleepy. 

19:25 - Kerly (Host)

Oh my gosh. And I'm on really I'm on a really high antihistamine for my skin condition. Oh my God, I never thought that this is interesting now. I have to talk to my doctors now. Oh my gosh, so the antihistamine could be making the rest of us worse. 

19:39 - Fred (Guest)

Yeah, and it can make you sleepier, so can make you sleepier. So it was wild, though I don't itch, otherwise I'll itch every day, as much as you look up things online about your conditions and stuff and then you never see that part. And once I saw just a little blurb on one page somewhere that said something about histamine and I started looking for papers on that. I found like four or five papers about that specifically, where people are researching histamine with narcolepsy and IH. 

20:02 - Liz (Co-host)

So the medication that I take and I think Kerrilee takes it is called Wakex or Pertolacin. That is a histamine antagonist, I think, so it increases the histamine which is meant to keep you awake, so it works on that pathway to stimulate you more. I'm probably butchering the science there, but there's definitely something about histamines and its role in sleep and wakefulness. 

20:25 - Fred (Guest)

Right Quite interesting. So much to learn and a lot of things are connected to, like Parkinson's is treated with the same medication for restless legs and then antidepressants that treat narcolepsy and depression and ADHD. A lot of things are combined. So I feel like there's a big aha moment waiting in science at some point of how all these conditions are somehow stemming from some similar thing that we just have to find out yeah before we change topic yeah, so it says here if your ferritin levels is 50 mcg or lower, then your rest of those will be bad is that iron? 

20:58 - Kerly (Host)

iron levels, yeah, so it has to be over 50. 

21:07 - Liz (Co-host)

Fred, can you tell us more about how your sleep condition and your other diagnosis, like ADHD, affect your day-to-day life, family, friendships, that kind of thing? 

21:18 - Fred (Guest)

It's been a lifelong thing with the sleepiness and it's really interesting to me that no one mentioned it. The first person to mention this to me was actually a person that I met on a dating website and he had narcolepsy. And after hanging out with me for a day or so he said you know what? I think you should get tested for narcolepsy. I knew I slept all the time. I knew that I was constantly having to say no, I can't do that, I'm too sleepy, or I would be at a party asleep, on a couch, at a random person's house or at the bus stop asleep, or sleeping on the bus, just everywhere. When I was a child, my grandma wrote in her diary when I was three years old that she had never seen a toddler that sleeps this much. So it's been happening forever and no one mentioned it. 

21:58

I was sleeping on the bus on the way to school. I slept all day at school. I slept on the bus on the way home from school. I went to bed as soon as I got home and they thought this was just normal for a child growing up. They need sleep. I guess there's a lot of life that it's frustrating to miss out on. When you're just confused. How does everyone do this? If everybody has to sleep this much, how do they have a life and a house and a job and kids and they go to soccer practice and they go to all their clubs and everything? I just can't really figure out how that was happening. And now it's like, oh, okay, I understand a little bit more now. 

22:29 - Liz (Co-host)

Yeah, and how do you think your family missed that? 

22:32 - Fred (Guest)

My family is a brush, everything under the rug type family. When I asked my mom about my childhood, she goes oh, you were normal, it was fine. I was most definitely not normal. I am so far from normal and especially with all the ADHD things, they thought I was normal because I made good grades. Even though I was asleep all the time, I could still answer all the questions I love to read. 

22:52

So that was one thing I could always stay awake for. There's almost a switch in my brain I can turn on and off, and it's the switch that's like okay, you're awake, now, obviously you're going to be sleepy the whole time, but you're going to power through it and you're going to stay awake. Or there's the switch that's like okay, now you can sleep, and then you're just turned off until something claws you back from the other side of the sleeping curtain. So that was one thing. I could always have the switch turned on. You know I'm reading this book and I'm learning this thing and it's in my brain now. I had very good memory for that type of thing. Not a good memory for where I put anything because I would lose everything, but because I did well in school and I was in the top percentile. It wasn't a problem that I was asleep in class. 

23:30 - Kerly (Host)

They didn't care yeah, people say this a lot. It's so sad, though, to think that educators or family members can see something. But if the grades are good it can't be that bad. But if your grades were bad they would be on it because I have bad grades. We gotta fix this. If your grades are good, you can't be suffering that much and my whole family history is like that. 

23:48 - Fred (Guest)

There's a lot of medical problems, especially on my mom's side of the family, and when I ask her for a full family history so I can put it in my chart for my doctors to try to help me figure out all the things that are going on, she's like no, we're all okay, there's nothing wrong. I'm like there is a giant list of things that I know about and I also know you're very bad at telling me anything that's going on. So there's a lot of things I don't know. But I need to know these things so I can tell the doctor. Because, for instance, my brother has ankylosing spondylitis, which is a rare arthritis condition. It makes your bones fuse together and he's had that since he was 12. And then my mom has ulcerative colitis and she's had to have her entire lower intestine removed. 

24:25

Those two and narcolepsy are all part of that HLA gene that you can use to try to get tested for narcolepsy. And so it's like, yes, the medical history says I should probably get tested for that gene, and that leads into, like, the problem with the US medical system. I've been trying to get tested for this gene for a number of years and I've started pressuring the doctor more lately and she said okay, well, we don't do that, you'll have to get a geneticist. And then they said to get a geneticist, you need a rheumatologist. And the rheumatologist said we can't do that, you'll have to call a geneticist oh, wow or they'll call me and they'll say we're booked out through the end of our schedule. 

25:00

We'll call you when we open up more of our schedule, which will be in like six months, and then we can make you an appointment. It'll be a year out or so at least, to even get an initial consultation appointment and then go from there gosh and so is that gene something that runs in families, and if you have that gene you're more susceptible to getting conditions with narcolepsy. 

25:20

I believe how it works is most people with narcolepsy have this gene, but also about one in four people in general have this gene. So it doesn't mean that you have narcolepsy, but if you have it, it's kind of like a clue towards your diagnosis. Is how I understand it. You're sort of predisposed to it, right? One gene doesn't necessarily control one thing, and there's a lot of letters after that. It is HLA gene typing, for DQB10602 is the specific one for narcolepsy, and I don't know what part of that gene is controlling things like ulcerative colitis and ankylosing spondylitis, but they're all kind of in that same area. 

26:00 - Liz (Co-host)

And so why do you want to know whether you have that gene? 

26:03 - Fred (Guest)

Partially, so I can be aware of possibilities for the future, especially the ulcerative colitis. My mom has been through a lot with that and I actually started eating a gluten free diet a few years ago which has helped a lot with a ton of my symptoms, of things like migraines and with the restless leg syndrome, the nerve sensitivity, and so I'm hoping also with GI issues, that maybe I can head off some of the ulcerative colitis, which I realized it's not necessarily to do with gluten, but maybe if my intestines are not angry then it won't get quite as bad as my mom has. So if I know whether or not I have this gene, I can know. Okay, maybe I should get a colonoscopy earlier than 40. 

26:39

I should be getting set up with these doctors, getting them familiar with me and all my symptoms that are going on, so maybe they could detect something earlier and then also that clue as to whether or not what I have going on with sleep is more likely narcolepsy or IH. 

26:53 - Kerly (Host)

Yeah, that makes sense, I like that you're being prepared. It's good, it's important with your health. You've got to take charge and I like that, like getting ahead of it. 

27:00 - Fred (Guest)

Yeah, I kind of have to be at this point because it takes so much to go to all these doctors so much time and energy. 

27:08

That's one of the things I wanted to talk about too with the US healthcare system is you have to be very poor to be able to afford to go to doctors here you either have to be very rich, which is probably not going to happen, or very poor, which you can just decide to do if you need to. I'm allowed to make $1,580 a month. If I make more than that, I can't have my Medicaid health insurance, so I wouldn't be able to afford to go to a doctor. It would cost thousands and thousands of dollars to have a sleep study, and that's on top of the. You'd probably pay at least $200 each time you visit a doctor, and I've had over 60 doctor's appointments this year. So that would just be completely not feasible. And that's even if you have private health insurance. My mom pays $900 a month for her health insurance and she still has to pay $3,000 out of pocket before it will start to pay on anything. 

27:57 - Liz (Co-host)

And for those of us that aren't familiar with the US healthcare system, can you give us a brief outline of what it looks like? 

28:04 - Fred (Guest)

Generally how it works is there's a price for what you would pay out of pocket, if you're paying with cash or your own personal money, and that price is very expensive because the healthcare providers are expecting to charge the insurance these agreed upon rates that they have and they will price gouge the insurance companies, who will price gouge the people who are buying the insurance. 

28:32

For instance, if you are paying for your insurance and you go to the doctor, the insurance company will tell you you owe $30 copay for this visit that you walked in the doctor. The doctor is going to charge the insurance company maybe $500 for that visit, but the insurance company is only going to pay the doctor $200 of that because of these deals that they've made with each other and it's the same for every single thing and they have things packaged where, like I, had a knee surgery and they needed one screw, but to get the one screw you have to pay a thousand dollars for a bag that has three screws in it because they package them together so it's kind of like that with everything and then what happened to the two screws that were left over? 

29:06 - Kerly (Host)

You get a discount back. 

29:07 - Fred (Guest)

No, they throw them away. Yeah, Right now I'm eligible for Medicaid, which is the government free health care, and that changes by state. I'm in North Carolina. If I travel out of the state, my health insurance won't pay for anything unless I go to an emergency room, which would normally cost $500 just to walk through the door of an emergency room and a lot of times if you're trying to pay out of pocket, I've been in different states before where I literally just needed like a blood test and I call five different doctor's offices regular doctor's office and they say we don't accept out of pocket payments, we only take insurance. You're not allowed to just give them money. 

29:41 - Liz (Co-host)

They won't take it. 

29:42 - Fred (Guest)

Yeah, that's the other thing. Finding a doctor that accepts your brand of insurance is very difficult. One time I needed a gynecologist. The closest one that accepted my insurance was a one hour drive away. Oh my God. 

29:53 - Liz (Co-host)

And what impact does that have on you, as someone who has a sleep disorder of some kind and other diagnoses, to have that additional stress? 

30:02 - Fred (Guest)

Well, since it's the US, there's not really a public transit option, which is very unfortunate for people who don't have a way to drive themselves or have a ride with someone, unless you're in a very large city, and really even then public transit is pretty untenable. Here. If I have to drive to doctor's appointments, usually I'll schedule them around 2 pm, so I know that I might wake up by 11 am, have some food, a nap and then drive to the doctor's appointment, and then I have to eat again, which means I'm going to get sleepy again, which means I need to take a nap in my car before I come home or if I plan anything else afterwards, I have to make sure that the eating and sleeping is taken care of in between those activities. So really it's almost impossible to plan to do multiple things in a day. 

30:44 - Liz (Co-host)

Yeah, because all the focus goes on getting there and getting back yeah, you have to take care of those spoons, right, yeah, and eating especially. 

30:51 - Fred (Guest)

I have a lot of trouble with eating because of the ADHD and the executive dysfunction. Everything involved in going to the grocery store, getting the food, making the decision on what to get, bringing it home, unpacking it, preparing it, cooking it and then also eating it Eating it makes me sleepy. It's tiring, like from the physical chewing and then trying to pay attention long enough to eat it, and then as soon as I eat it I have to sleep. 

31:15

So, it makes you not want to eat food and then you get tired because your body doesn't have enough calories. So that's kind of resulted in almost an eating disorder. I'm in the process of getting a GI doctor to investigate ARFID avoidant food, restrictive intake disorder where basically my hunger cues and everything are getting messed up because I'm constantly ignoring hunger and eventually your brain says well then, I'm not going to tell you that you need to eat if you're just going to keep ignoring me. So it kind of comes and goes in phases, just like the sleep disorder does, where there'll be times when I really struggle to get enough calories and I'll lose some weight and then sometimes I can just eat like normal and it's fine. I'll just need to take a nap afterwards. 

31:55 - Liz (Co-host)

Wow. So you think that's related to the stress around having to make all the decisions around food from the ADHD and then also do you feel like the sleep disorder side of things impacts that as well? 

32:07 - Fred (Guest)

Really having all of these is making me afraid to go out, because I have to find food. I always have to carry food with me too, because I'm gluten free. 

32:17

There's almost nowhere I can eat in public that is like immediate food, like I might be able to go to a restaurant, but I can't really afford that and it takes a long time to get the food. So if I'm going out to eat, I normally eat food before I go, because otherwise I'll be too hungry by the time I drive there and wait for the food, and then it takes a couple hours for all that to happen. So I have to pre-eat before I eat and then I get sleepy on the way there. So it makes it hard to make plans and want to go out, especially when you don't know if you'll be sleepy in the future. It's hard to make plenty of friends, so I like to do spontaneous things. If I'm feeling good right now and I'm not sleepy today right now and someone says, hey, do you want to hang out? Then I can say yeah, I can do that right now, especially if I know that they're going to have a couch that I can sleep on later. 

33:10 - Liz (Co-host)

And what other strategies have you found helpful to manage all of these conditions together? 

33:15 - Fred (Guest)

Definitely the medication helps. The Welbutrin and the Focalin have been game changers and I was hesitant to do antidepressants for a long time. There's kind of you know a stigma against them, especially here. The concept around depression in particular is oh, it's just a feeling, you'll get over, it, just go exercise or something. It's your fault that you're depressed because you're not doing enough. I took an antidepressant with one of my other sleep doctors it was Effexor but it started giving me suicidal thoughts. So I recognized that immediately, because I'd never had those thoughts before, and stopped taking it. So I was really hesitant to try another one. But this one is immediate, within the week, that it was making a huge difference because it's a stimulant, and then I was able to feel like I can be awake and do things instead of just laying in bed all day looking out the window wishing I was not sleepy that I could stand up and go outside. 

34:05 - Kerly (Host)

That's a big difference. 

34:06 - Fred (Guest)

Yeah, having the medication and not just the one track thought of, I'm so sleepy, I just want to go take a nap and that's all you can think about. Now I can have other thoughts, and especially with the ADHD that was like turning a radio channel that has 15 channels playing at once, and then you turn the dial and now it's one channel and it actually ended up making me sleepier at first, because if you're on too low of a dose of a stimulant for ADHD, it's so relaxing. 

34:30

Your brain has never felt relaxed like this, because you're normally always thinking about everything all at once, so you're just like, oh, this is so soothing, and then it makes you sleepy, so we had to up the dose on that. 

34:40 - Liz (Co-host)

I'm almost at the highest dose for that and I still get sleepy sometimes after I take it, so I might need to modify that one a little bit that's so interesting mostly making sure also that I can take a nap somewhere yeah, I imagine managing all of that can take its toll and feel quite difficult at times and I'm wondering how you manage that mentally and get yourself through those hard times. 

35:04 - Fred (Guest)

I've been doing therapy every week for the last year. That's very helpful. A lot of times I talk to my therapist about fears related to becoming disabled, not being able to do things. I tried to learn coding I was taking a coding course but between my vision I have some vision issues too and then the ADHD. It was just not going to work. 

35:27

Because I wanted a job I could do remotely, that I could do, even if my body wasn't cooperating with me, and then I could kind of do it at my own pace, and that just wasn't working out. So it's been. I could kind of do at my own pace, and that just wasn't working out. So it's been kind of hard. Okay, what am I going to do as a job? What can I do that my body's not just going to say, well, you can't actually do that? That's kind of what happened last time I was working a farm job and it just became too physically demanding. I have joint problems and I have muscle problems and I just wasn't able to do that anymore. 

35:54

So it's disheartening thinking I thought I could do anything. I thought I could learn how to do anything. I used to do all these things Even when I was sleepy, I could do them and now I just can't. So, being nice to myself and not pushing myself, like not being too stubborn and saying, even if I take a nap, it's okay, it's fine, I'm alive, you have to celebrate the small little victories. I have a little app where I keep track of when I wake up and go to sleep and take naps and stuff, and it'll ask you about your feelings and you can write little notes. And one time I woke up at 7am and got up and did things all day, two days in a row. I've never in my entire life gotten up when I didn't have to get up, and I'm 33 now, so it was like a huge accomplishment. 

36:38

I was like, oh, I'll do this every day, of course that didn't happen, but it was just felt really good and it seems like a silly accomplishment to wake up at 7am and start your day, but that was an astronomically huge happy event in my life, so just making sure to stop and celebrate those things. 

36:51 - Kerly (Host)

I'm gonna ask what's the name of the app, so other people can get it it's called daily oh d-a-y-l-i-o. 

36:57 - Fred (Guest)

I think I use it a little differently than it was intended, but I have different categories for like woke up, got up, because those are different things oh yeah um, had a nap, went to bed feeling happy or fuzzy or sad or different things, and you can track your exercise and what you did that day and if you worked and what you ate, and you can add pictures celebrating the small things is so important as well, especially when you do have a condition that can make life feel quite hard sometimes. 

37:24 - Liz (Co-host)

It's so important to recognize that, yeah, even just like oh, I woke up and actually got up to my alarm today, or the sun was on my face and that made me feel happy, that can really help to boost feeling good when it can feel quite hard yeah, and one thing I've noticed too that I did for myself and I didn't realize it would have such an impact. 

37:41 - Fred (Guest)

So in my bus obviously there's a lot of windows and they are single pane windows so they get hot in the summer, cold in the winter. It's hard to keep the temperature right in here. So I made window covers that are one inch foam board and they're covered in holographic vinyl and they're very shiny and they're very yeah. So I'm stuck in bed a lot and feeling miserable because I want to get up and do things. At least I can lay here and be like oh, shiny rainbow colors, that makes me feel nice. I think you two had spoke before about, like, how you decorate your room. If you're going to be stuck in there a while, you might as well put things in there that make you feel really happy. 

38:17 - Liz (Co-host)

Yeah, definitely. Now I'm thinking I might get some funky window covers for my room. 

38:22 - Kerly (Host)

That's so cool. 

38:23 - Liz (Co-host)

But what does it mean to you to accept your disability, and where are you on that journey? 

38:29 - Fred (Guest)

It's about reminding myself. I've always had the mindset that I can do anything. There are all these humans on this planet that are alive right now, no matter what they've achieved or who they are. They still have only been alive that amount of time. They might have generational wealth or other things that are helping them out, but if you think about it, there's so many people that started as a normal person and got really far in whatever measure of success they have or whatever things they learned how to do, and I always thought, well, I can do that. That's very inspiring. And now I think, well, that seems like a thing anybody should be able to do and I can't do it. 

39:02

So the struggle is coming to terms with I can't do that and then being able to tell people I can't do that, I'm sorry, and then watching them think I don't see why you can't do this. This is not a hard thing to do. It's just reminding myself. Well, I know myself better and I'm listening to my body and I'm not just forcing it to do something that it can't do, because that's a lot of the US culture is you're just going to struggle through it. We're all struggling. You just need to struggle through it like everybody else does, and it's a really toxic culture. People don't take breaks when they should, and if they're injured or sick, they still go to work. Being able to tell myself this is who I am now I can't get around it and I need to accept that and figure out what I can do that makes me feel fulfilled. 

39:46 - Kerly (Host)

Yeah yeah, I like that 100%. And when you get to that point, I feel, when you've figured out what it is that makes you feel fulfilled and you do that. It's like I remember when I was much, much younger and someone used to say oh, the people who are the happiest, they do their hobbies for their job, so then they're never thinking, oh my god, when is my next sick day or when can I take a day off work or whatever, because they're doing what they love. So obviously every day has its challenges and not every day is going to be like roses or whatever, but because they're doing what they love, it's not miserable when they're doing it. 

40:16

And I like what you said about is getting that into people's heads in society that we've been brought up the wrong way to work when you're sick, to push through beyond your limits and not take care of your mental health. I think that's a really toxic culture and we've got to push against that. And I think bringing sleep into that, especially making people remember how important sleep is Sleep is as important as drinking water and as breathing, and until we start believing that, then I think massive changes can't happen, until we really start actually believing that. 

40:44 - Fred (Guest)

Yeah, and people thinking that things are not a problem or it's almost a bragging. Right right, if I come to work and say I had to wake up at such and such time, and then your coworker says, well, I didn't sleep at all last night. I have insomnia and it's like, ok, well, that's sad. Are you bragging about this because you want to make me feel bad that I did sleep? 

41:04 - Liz (Co-host)

last night. 

41:05 - Fred (Guest)

That's confusing and you should maybe talk to a doctor about why you have insomnia. But people don't like to go to the doctor either. But it's frustrating because in the US you go to the doctor. There's a good chance you just wasted hundreds or thousands of dollars for no reason and that you either didn't get any answers or maybe they didn't listen to you or even made fun of you. I've had doctors laugh at me and tell me that I need to go find a different doctor that's a three hour drive away just to ask them the question that I wanted to ask them. That's terrible. Literally laugh in my face and then just walk out or they'll say well, you're only allowed to ask one question. 

41:40 - Kerly (Host)

Oh yeah, I love that one. Yeah, we have that here in England as well, especially with the GPs. 

41:46 - Liz (Co-host)

Yeah, yeah, one problem per appointment. 

41:48 - Kerly (Host)

Yeah, one problem per appointment. I don't know what they want me to do. Book the whole week, right? I keep saying to them, look, I just go with my list. When I actually get to see them in person, I go with my list. I say, look, we can do this two ways. Either I ring every day and try to book an appointment every day, or we can just spend 20 minutes and flush this all out and they don't have to see me for months. 

42:09 - Fred (Guest)

Which is easier. 

42:09

A lot of things related so if you're only talking about one thing and you have a different doctor for everything, and those doctors don't talk to each other and they don't see your charts from the other doctors. There are things that are missing that could provide answers to what you're dealing with, and they only just want to treat each individual symptom. Then they can't find the connective thing. Yeah, I wrote out a Google doc my health history. So I went from age zero and I did every single year everything I can remember and I think at this point it's seven or eight pages long, single spaced, and it's not even repeating the things that stayed the same over the years for each year. It's just all the new things and the doctors won't look at it. I say, hey, can I send this to you? And they're like we don't have a way to receive that file and put it in the system, and if I print it out and hand it to them, they won't look at it. I wrote down a list of when I tracked in that daily app for three months my entire sleeping, how much I was sleeping in the night and in the day, and I wrote out a whole chart. Okay, idiopathic hypersomnia says 10 plus hours a day, right, so here's the category of 10 to 14 hours, here's 14 to 16 hours, and then here's less than eight hours. And how many days of a month am I sleeping this much? And I handed the paper to the doctor and she didn't even glance at it. I spent an hour writing this out and it didn't matter. 

43:26

And they just take what you say and what you think is wrong with you and what you want them to do about it. And if they're a good doctor in quotes, they'll do what you want them to do. Because if they don't do what you want them to do about it, and if they're a good doctor in quotes, they'll do what you want them to do. Because if they don't do what you want them to do, you don't want to come back to them as a doctor. But they don't really offer any options for what they think might be going on. They don't really investigate any further. They're just like oh, your neck hurts. Here's some muscle relaxers, not well, what kind of job do you do? Do you strain in in this direction? It's just. What do you want? I'll just give it to you. Yeah, there's a pill. 

43:58 - Liz (Co-host)

That must be so frustrating when you're paying for it as well, because I feel like here in the UK I love the NHS, I work in the NHS, but it is struggling and there are lots of things about it that aren't good because it's just so underfunded. But, at least it's free for us. So when it's not going well, you just think well, at least I'm not paying for it. But you guys are actually putting money into it from your own pocket, so it must feel extra painful when it's not going well at all. 

44:23 - Fred (Guest)

Right, especially because a lot of times people have to take time off work so they're not getting paid and they're going to the doctor. They're driving really far, especially to find a good doctor, that's a specialist. There are so many bad ones. My mom had a piece of paper from her doctor the other day that he sent her home with, and it had lists of things that she should do to help with her gut issues and a lot of them were like meditate, and I'm like how is this doctor You've had your large intestine removed and this doctor is telling you to meditate? And then the back has a recipe for an immortality smoothie that has a bunch of things that you're not supposed to eat in it. Like why are you going to this doctor? A kid I used to babysit had a planter wart on his foot and his doctor told him to cut a potato in half and duct tape it to his foot and then bury the other half of the potato and have a funeral for it and his wart would go away. 

45:12 - Kerly (Host)

This is a real doctor in North Carolina tell a child to do this no, yeah, oh my god, what is going on? Right, it's very bad. 

45:20 - Fred (Guest)

Oh my god, yeah, speechless, speechless it's just tragic yeah, and when you walk into the doctor, there's a little pad there it's like an electronic pad and you can't see you sign your signature into it and they'll say, okay, I need three signatures from you. This one's a HIPAA policy, which is a privacy policy, and you sign it. They don't see you sign your signature into it and they'll say, okay, I need three signatures from you. This one's a HIPAA policy, which is a privacy policy, and you sign it. They don't let you read the policy. And then then they say this is a consent to treatment and you sign that. And then they say this is a financial responsibility. So you're signing papers that you're not reading, they're not showing them to you. You're signing every single time you walk through the door. 

45:52

You have to sign multiple signatures saying that you're financially responsible for everything they do. And when they do things, they don't give you a price of how much it will cost. If you ask them, you have to spend hours on the phone and have very specific numbers for each procedure or each medicine or each anything they do, and then they can give you a number. That might be the number of how much it will cost, but it could be off by hundreds of dollars. I had a surgery and they accidentally charged me the $17,000 twice because they weren't paying attention. So I had to catch that and tell them like, hey, no, you need to look at this, I am not paying for surgery twice. Oh my gosh. 

46:35 - Liz (Co-host)

What do you think the next 10 years has in store for you, because it sounds like with the health condition there is some uncertainty there. But you also have ambitions to be a pilot and kind of work out what you want to do with your career as well, and I'm just intrigued of what you think the universe has in store for you. 

46:53 - Fred (Guest)

So I have two dogs that probably have about 10 years left of life with them and my goal is to travel internationally. So I really loved hearing your story about traveling, especially with the Xyrem, because at the time I was trying to get on that and I was like, oh man, I really wanted to go to Thailand and that was a little intimidating to hear that like there's a lot of places I might not be able to go if I was on that medication and luckily it kind of went a different way. But the hope is to find a traveling companion and it's not right to put that on someone else, but everyone needs community and support. 

47:26

And community is one thing that I lack when I'm traveling, because I'm never in the same place with the same people. So I have to have relationships with people remotely often, keep in touch with friends, and so I'm hoping that I'll be able to manufacture my life in such a way that maybe my financial situation is like a remote job. Because I'm really good at talking on the phone, I could do some sort of customer service. I don't mind customer service, I'd really rather do something to like help people Like you were saying you're in the health service stuff, doing some sort of casework. It's just with ADHD too. There's 10 million things I want to do and I want to learn how to do all of them. 

48:00

Hopefully I can find something that will let me be able to travel internationally, Because ultimately I'm not too concerned about having a career or having money. I just want to be able to exist and go places, and it's a pretty low bar for me. As long as my health is in such a way that I can make enough money to buy a plane ticket and get on a plane and go somewhere, then I'll be pretty happy with how things are going. 

48:24 - Kerly (Host)

Yeah, I wouldn't say that's a low bar. Someone recently said to me that so they came in my house. As a friend of my sister I was saying with narcolepsy that keeping the house tidy and whatever sometimes can be a struggle and recently I had to put my clean on hold because of a trip coming up so I needed to save that money so I wasn't able to have her for a while. The place is clean, it just looks cluttered. So I was saying to the person oh, sorry about the mess, about the clutter and stuff. And then she says to me her grandma always says when you die, what are people going remember? The clutter in your house or your legacy? What did you leave behind? The people that you helped, the places that you visited, your memories. That's what they're going to remember, not the fact that your house is cluttered. Who cares? 

49:03 - Liz (Co-host)

Unless they have to be the ones to tidy it out, and then they might mind yeah. 

49:09 - Kerly (Host)

That was nice, because I love that. It's about the memories that you're going to make with your dog and whoever is your travel companion. I think that is amazing, and the way that you're living now. Trust me, I have wanted to live that way many a time. I can't drive, so that's the problem, because if I could drive, oh boy, I wouldn't be in here this house. 

49:25 - Fred (Guest)

I would be all over yeah, see, then you need to find a travel companion who likes to drive, and it's just a balance with any relationship you have with people. I don't like thinking of transactional relationships. I have a lot of critiques of the capitalistic way that people are taught to behave in our society and just seeing each other as transactional. But there's always that balance of I like to wash the dishes and hate drying the dishes, but this person likes to dry the dishes and hates washing the dishes. So you do it together, it's easier. 

49:57 - Liz (Co-host)

So maybe there's some kind of balance you can find that would allow you to travel yeah, that would be great yeah I love the way that you live, fred, and the way that you view it, as in you're not that fussed about money, you're not that fussed about having some grand career. You just want to be able to make money to live on and then have your travels and live your life, and I think that's a really refreshing thing to think about, because we all feel so much pressure to build a career and be on this roundabout forever and ever. But actually it's nice to know that even with a sleep disorder, these options are available to us. Nice to see a different way of living. One thing I did want to ask is and you've touched on it a little bit how do you manage the long distance driving with your sleep condition? 

50:39 - Fred (Guest)

One interesting thing about my sleep condition is that I'm so used to being sleepy that I'm very used to pushing through being sleepy because I didn't know I had another option for the first, like 27 years. So I was always driving very sleepy, which is not safe, and now that I understand that it's not normal to be that sleepy, I'm much more likely to just be like oh, I'm sleepy, I'm going to pull over and take a nap, especially when my bed is in my vehicle that I'm driving. But there are times when I just won't be sleepy, like I drove 20 hours from Arizona to Tennessee because I started driving and then we needed to drive overnight. This was during COVID and of course, this is the US for you. We saw on the news that in Texas the civilians at the border were armed with assault rifles because they didn't want people entering Texas to spread COVID and they were stopping people on the interstate driving through. So I was trying to get from California back home to North Carolina to help my family in case someone got sick and decided to drive through Texas at night, so we'd have less of a chance of getting stopped. 

51:41

I left Arizona in the daytime, drove through Texas at night. By the time we got to Oklahoma it was daylight again and I got my second wind. I was like I'll just keep driving till I'm tired, and I didn't get tired until 11m. So that was 20 hours. I think I took a two hour nap and let my co-pilot drive during the middle of that. But it's just, sometimes I can just go forever without needing to sleep because I'm used to being sleepy, and then sometimes I just will sleep for like 20 hours. I've found that I am less sleepy if I have less sleep, because sleep makes me sleepy. So sometimes if I only sleep for about four hours a night, I'll be more energetic all day, and I can do that for a couple of weeks until it burns me out completely. 

52:23

It's very unhealthy to do, and then I will need to sleep 20 hours a day for a month to make up for it. So it's not a good thing to do, but it's very strange when the only times you've felt very awake in your life are when you're severely sleep deprived. 

52:36 - Liz (Co-host)

Yeah right, that's so interesting. 

52:37 - Fred (Guest)

Every week I go stay at my best friend's house for a sleepover on Sunday nights. So I normally get to her house around seven or eight o'clock in the evening, normally around four o'clock. I will try to take a nap and I'll set an alarm for 40 minutes, because that's how long you're supposed to take a nap for 20 to 40 minutes I you're supposed to take a nap for 20 to 40 minutes. I'll snooze the alarm until it's been like two hours later and then at that point I might message someone that sounds more realistic. 

52:59

Yeah. So at that point I'll either be like, okay, I have to get up, and then maybe in half an hour I'll manage to get up, but I'm sleep drunk and the sleep inertia is so bad, or I'll end up texting someone like I'm sorry, I can't, and then I'll just go to sleep for 12 more hours. But with the sleep inertia it was getting really, really bad, where I would come in from work at the campground about 4pm and I would sit down on my bed, full clothes on, shoes on, and I would drift off sitting up, and it would be about 7pm, 8pm. I need to eat food. My roommate would sit food on me, like right under my nose. It's already hot and cut up, and I would manage to wake up enough to swallow it and then fall asleep with the plate on me and then every five minutes I'm trying to sit up and wake up and sit up and then I just fall back down and then I might manage to sit halfway up and I fall back down and I'm doing this for like three hours, trying to wake up every five minutes, and it'll be 10 PM and I'm supposed to feed my dogs and take them out and my roommate's trying to wake me up over and over and over and I can't, and he'll just say, okay, fine, I'll do it. And this happened every night for months. I mean, it's hours of struggling to be awake and thinking, okay, I finally am up and then I just fall back down and it'll be like my muscles don't work and I just can't keep my eyes open. So if I know that I have to do something, I have to not let myself take a nap, no matter how sleepy I am, because it'll make it worse. 

54:15

Yeah, yeah, you had mentioned about your cataplexy. That's one of the confusing things about my diagnosis, because cataplexy is an epilepsy thing. It's not associated with IH and I don't quite know if I have cataplexy, because if I do, it's like you were talking about. It might be just my face, like when I laugh I drool, and if I laugh a lot, my muscles kind of start to twitch, they're not quite working right, and then after certain arousing activities, let's say, all my arms and legs will be like I took a muscle relaxer, like I can't use them, I can't get up. 

54:44

But it's not necessarily every time I have an emotion. It's not super dramatic Generally, it's just occasionally. With the sleep, drunkenness and stuff, it'll be more dramatic. And then normally sleep drunkenness and sleep inertia is not associated with narcolepsy. So it's kind of confusing when I have a lot of symptoms from one and a lot of symptoms from the other, but then they don't quite match up all the way, because I also get sleep paralysis and the hallucinations, but mine are hypnopompic instead of hypnagogic, so I get the hallucinations while I'm waking up and they'll be violent, like you've talked about. I'll have someone shooting me in the face or stabbing me in the chest, or the house is on fire or different things like that. It's all very intense and those are symptoms that you see written down on paper. You see hallucinations, and it's just that word and I've experienced in my whole life and it wasn't until, literally, I started listening to your podcast and I thought about it and I was like, oh, all those were hallucinations too that I had when I was a child. 

55:38

I just thought they were normal, like you know, everybody sees a scary floating face in the corner when they wake up. 

55:43 - Liz (Co-host)

That's what kids do right. They have nightmares, it's normal. 

55:47 - Kerly (Host)

Gosh, I wish you luck with getting to the bottom of what exactly you are experiencing in terms of the sleep disorders maybe plural A lot of people who have IH have narcolepsy, type 2 also, and we're talking to someone recently who was saying how that even some doctors are thinking there is a 3. So I think there is a crossover. There might be very much a crossover in your case, because you do have things that are very IH specific and then you have some things that are very narcolepsy as well. I know someone who has both. 

56:14 - Fred (Guest)

What it comes down to is it doesn't matter if you have a diagnosis. It's the same way with any diagnosis If you're experiencing the symptoms, you're experiencing the symptoms. And that's one thing that we were talking about how family reacts to your diagnosis and if they can help you with anything. When I talked to my dad about all my doctor's appointments, one time he looks at me and he says do you ever think maybe you're a hypochondriac? And I just I couldn't believe that he had just said that to me. 

56:40

First of all, I am spending so much time and money and energy going to so many doctor's appointments and just struggling so much, and I thought about it for a second and then I thought you know what? If you are a hypochondriac, that's a medical condition. It's also a problem that has symptoms. It's not just you're lying, you're not lying about your problems. So even if you don't have a diagnosis or a doctor proves a diagnosis is not what you have, if you're having symptoms, you're having symptoms. You still have to manage them. You still have to deal with them in your life. 

57:09

You still have to fight for accommodations for yourself and be kind to yourself about what you need and taking the space that you need to manage your symptoms yeah, they're still real for you yeah, it might be harder to get some of those accommodations without a diagnosis, but it's still something you have to deal with yeah, if you could press a red button and never have experienced any type of sleep disorder, would you press it, and why? 

57:39

Absolutely, I would press it. It's fascinating to me all the episodes I've listened to where people are like, no, I guess I wouldn't. I'm like, no, I definitely would. There's so much of my life I've been upset about missing out on, because I'm just unconscious and even if I'm not all the way asleep and you can still hear people, because you can still be resting and it's slightly helpful even if you don't manage to fall asleep during your rest, and you can kind of hear people like I don't know, like she's just been over there for a while and like we're trying to do this thing. We can't get her to wake up and that's hard to hear and it's hard to know that. Yeah, I would like to be out doing whatever event it is that you guys are having fun doing and instead I'm stuck here in bed. 

58:21 - Liz (Co-host)

So, yes, absolutely I would love to press that button and is there anything that you're grateful for from having experienced a sleep disorder? 

58:30 - Fred (Guest)

I guess it just gives me more empathy for people and whatever they're going through. Every time I'm in public I around. I think it's 20% of people in the US have a disability, so that's one in five. And if you look around you can see it. And there's a lot of invisible disabilities as well that you can't see. But if you start to pay attention, that person is walking a certain way. They probably, as a result of that, are dealing with other struggles that either cause that or are a result of that. That you don't really think about. And it's just making it to where I can see how the society is not designed to accommodate people at all and then maybe I can figure out ways to, if I pay attention to that, to maybe recommend ways to help other people. 

59:09

There's not many sidewalks in the US. To begin with, you'd be surprised if you're in a city and you're driving around and you see all these people walking in the road or in the grass. There's just not a sidewalk for you to walk on. If you don't have a car, you can't really go anywhere. And if you have a wheelchair, there are people who have to drive their wheelchairs in the road with the cars to get places, and if there is a sidewalk, it's either broken or someone is sitting in the sidewalk blocking it so a wheelchair can't drive by. So it's just noticing things like that and then trying to get other people to notice like, oh, you've parked in the spot, that a handicapped spot needs to open the door to be able to get the ramp out, and people don't think about it. 

59:46 - Liz (Co-host)

Thank, you so much for sharing your story, fred. It's so interesting to hear your story and everything that you've been going through, so thank you for sharing that thank you so much for the podcast. 

59:56 - Fred (Guest)

It's been really helpful to me. Actually, I was surprised to find it and I think I found it literally when it first came out. I had just been kind of looking for podcast information about this because I'd never really had anybody to talk to about it or anybody that can understand. So I think when I heard the first episode, I was at work planting flowers at the farm and just crying. I was just like, oh my gosh, these people understand. And then every episode I listened to, it started bringing to light more of the things about myself that, like I knew was a symptom, but I didn't really think about it that much, especially the hallucinations. That was a big revelation for me that they're that intense for other people and how much it can actually affect you throughout your day if you experienced one in the morning and then it just really sticks with you throughout the day and you just have that feeling. But it's just really important to hear other people's experiences. So that's really what inspired me to reach out and say, hey, I'd love to talk to you. 

01:00:53 - Kerly (Host)

I'm glad you did yeah it's been very refreshing and, yeah, I've really enjoyed speaking to you. All right, so we usually like to end with happy napping everyone happy napping, everyone happy napping happy napping everyone. 

01:01:09

Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice. Narcolepsy Navigators is produced by a team of volunteers working for the Naps for Life CIC, which is a non-profit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website wwwnapsforlifecom. If you or someone you know has a sleep disorder and would like to share your story on Narcolepsy Navigators, please email us at narcolepsynavigators at gmailcom. You can also support us by donating at the website. Happy napping everyone.