S3E2 Cooking, Collapsing, and Cristina’s Cataplexy Life

🎙️ Ever dropped mid-conversation and had to explain it wasn’t drugs?

In this deeply personal and unexpectedly hilarious episode of Narcolepsy Navigators, we sit down with Cristina, the creator of Gourmet Recovery, to explore how she navigates life with Narcolepsy Type 1, cataplexy, and a solid sense of humor.

Cristina opens up about the frustrating path to diagnosis, being dismissed with chronic fatigue and fibromyalgia, and how her sleep attacks affected school, work, relationships—and even public spaces. From falling asleep in church to hallucinating on public transport, Cristina shares it all: the scary, the silly, and the soul-shifting.

We also talk:

• [05:44] Misdiagnosis and finding the right doctor
• [08:51] The emotional impact of being finally diagnosed
• [11:05] Medication side effects, sleepwalking, and the helmet joke
• [17:44] Her healing journey through intuitive eating & cooking
• [23:00] How humor helps her reclaim control
• [27:44] Why she wears a bracelet in public
• [34:32] The truth about naps and real-life memory struggles
• [45:48] Would she press the button to remove narcolepsy?

Cristina reminds us that there’s no right way to live with narcolepsy—only your way.

📲 Follow her at @GourmetRecovery on IG & FB.

Transcript

00:05 - 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. Hi everyone, and welcome to Narcolepsy Navigators.
My name is Kerlhy, I'm your host.
00:40 - Liz (Co-host)
And I'm Liz, your co-host for today. We both have narcolepsy type 1. And I'm Liz, your
co-host for today. We both have narcolepsy type 1.
00:44 - Kerly (Host)
Today we have joining us Christina Romano, and she is living in the US, and our topic today
is narcolepsy and humor. So, christina, how's your week been going Been?
00:59 - Cristina (Guest)
good, I've been a little tired but I manage. I take naps as much as I can and this little one
back here. He's been busy. It's actually funny. We can sometimes all wake up in the middle
of the night and take him outside because I know he needs to go.
01:15
My husband was laughing at me the other day. He's I'm sound asleep over here and you're
just like zero to 60. You get up and you say I'm tired. But that's what you do when you have
pets. I've been studying this week. I'm trying to study, I'm trying to read and the reading part
is a little hard because I fall asleep within the first couple of sentences. So it's like I have to
reread and start over and then read again what topic I'm studying for an EMTT, to be a first
responder.
01:48 - Kerly (Host)
Okay, yeah, and Liz, how's your week been?
01:52 - Liz (Co-host)
My week has been good. It's been very full on with work and I'm also working tomorrow,
which is usually my day off, so trying to conserve a bit of energy, which is hard, basically just
coming home from work and sleeping most of the evening away. I think it will get easier after
this week, so I'm just holding on to that and thinking, even though I've only got a two day
weekend this weekend, I will have an extra day off next week to make up for the day I'm
working tomorrow. Your day off next week to make up for the day I'm working tomorrow. So
there is light at the end of the tunnel and I'm hoping it's sunny on the few days.
02:30 - Kerly (Host)
I have off next week. Yes, we haven't been having fun, so that would be really nice if that
came true yes, I pray.
02:37 - Liz (Co-host)
And how is your week, carolee?

02:39 - Kerly (Host)
yeah, the week went really quickly. Actually it's just shocking that tomorrow's friday but I did
accomplish. I've started a wig making course and I finished my second wig, so I'm really
proud of myself. So, yeah, the week's just gone quick. Like last week was much slower and
this week went much faster. Next week back at college and I'm now up to my eight tablets of
WAKES. How's that?
03:06 - Liz (Co-host)
going.
03:07 - Kerly (Host)
Still feeling, no different, but I'm now at max, so onwards hopefully.
03:12 - Liz (Co-host)
Wow, it makes sense of the maximum, but I didn't realise there was a max. Is that because
each tablet is about 4.5 milligrams? That's about 32 or 35 or something?
03:25 - Kerly (Host)
Yeah, I don't know if it's the maths, but he said to stop at eight tablets.
03:29 - Liz (Co-host)
How are you feeling if it's not really working for you yet?
03:33 - Kerly (Host)
I'm disappointed because I'm going back to college on Tuesday, so I'm going to be sleeping
in class again. I was hoping the schedule would have kicked in by now. We're eight weeks in
now.
03:43 - Liz (Co-host)
Yeah.
03:45 - Kerly (Host)
What do?
03:45 - Liz (Co-host)
you think the next step would be?
03:47 - Kerly (Host)
Take me off this and then back to square one or nothing, until something new comes out.
03:51 - Cristina (Guest)
Wow.
03:52 - Kerly (Host)
Unless he decides to think that it's not long enough for it to kick in and he might say stay on
it for a few more months and wait and see. Maybe it will kick in then.
04:03 - Liz (Co-host)

Is it like modafinil, where it builds up in your system over time?
04:07 - Kerly (Host)
That's what he suggested to me, because he said to me that I was on a very low dose and I
shouldn't expect like miracles yet, since today was my second day on eight tablets. If I'm on
eight tablets for two months and still feel no different, maybe then they'll be concerned, but
maybe this was too early for them to think that it's not working in their mind. We haven't
really given it a chance.
04:31 - Liz (Co-host)
That question I got from what he said it's a long time to wait for the medication to kick in, isn't
it?
04:38 - Cristina (Guest)
yeah, agreed, medication's one of those things that's very difficult. It doesn't agree with my
system very much, I don't know. I try a lot of apps now really.
04:49 - Kerly (Host)
So, Christina, can you tell us your name, what state you're residing, in your age, if you feel
comfortable, and what year you were diagnosed?
04:59 - Cristina (Guest)
So I am Christina. I am 43 years old, originally from Philadelphia, now I'm living in New
Mexico, across the country and its world. We live in a farm ranch kind of deal. We have
neighbors but no one kind of talks to each other, they're just in their own lane.
05:19 - Liz (Co-host)
What's up?
05:19 - Cristina (Guest)
It sounds like London oh really Philadelphia was a lot more vibrant. I was out and about and
that's where I got diagnosed. I guess I was in college I want to say During high school, like
when we would go out. I would sit in class and be so tired. I'd be like dragging down the
teacher, would be like go get water, take a walk around the hallway or something or come
back.
05:44
I had a virus when I was younger and they think that my immune system took over my brain
and decided to take some of the good cells with it. There we go narcolepsy. I was
misdiagnosed for a while in high school. They thought it was some kind of virus and they're
like it's just how your body reacts to it, and then they thought it was chronic fatigue. Then
they said it was fibromyalgia. That went on for a while.
06:10
I was at work one day, completely exhausted after lunch, falling asleep at my desk Because
part of what I had to do was to read these documents and then write reports on them to at
least get everything set up for my employer. And I sat down at the computer and my head
was going. It's my cataplexy not knowing what it was, because it was an oral surgery office.

We referred patients to the doctor a lot. So I thought I have the insurance now where I can
just go without getting a referral, so I'm just going to call the office and get treatment. And
when I met with the doctor, he was so sweet. He said yeah, we're going to have to rule out
epilepsy or heart disease.
06:51
I did have a workup and then they did the sleep study. They did the EED first. I had to go to
the hospital first thing in the morning, not having slept at all the night before, because they
keep you awake. He saw some rhythms that were like okay, we're going to do a sleep study
to double confirm what we're seeing on the printouts. So they kept me for longer.
07:19
I remember sitting in the chair the next day watching TV and my head started going back
and forth and I hit the back of my head on the back of the chair and they have that on video.
And when I was talking to the nurse he's like yeah, I think we have enough information now
you can just go home early. I was supposed to stay for five naps. I only did three. Then I got
the results a few weeks later. It was a shock, definitely a shock, but it was a relief when you
feel excited that there actually is something, even though I don't feel good. I understand why
I don't feel good. The other misconception was that I was on substances. Obviously, when
people see you falling asleep they're like oh yeah, what are you on, what are you taking? I'm
glad that got clear.
08:01 - Kerly (Host)
You said you worked in a medical place, so had you heard about narcolepsy before.
08:08 - Cristina (Guest)
I had read about it but I didn't actually understand it. I think this is it, but I wasn't quite sure
because they were really strong on the whole fibromyalgia and chronic fatigue. They're like
fibromyalgia. I went to see a specialist who does physical therapy, like physiology, and he
said to me no, honey you don't have fibromyalgia. I don't know.
08:31 - Liz (Co-host)
I'm not saying that, that's one thing I don't have, and what age were you diagnosed?
08:36 - Cristina (Guest)
I think I was in my 20s at that point. She just graduated college, yeah, so I think I was in my
late 20s, maybe.
08:46 - Liz (Co-host)
I was going to say you started having symptoms earlier, much earlier.
08:51 - Cristina (Guest)
It was a long road of waiting for the diagnosis. I think afterwards I did go through a set of
depression for a little bit, because you find out there actually is something and it's not quite
pleasant, it's not the easiest to handle, but like continue, we grow and we learn through this
process. Hey, maybe this will work. Or? I know I need to take naps, I know I need to
schedule them, I know I need to set the timer, because what would happen is I would well

sleep a couple minutes into the nap and then next thing I know it would be four or five hours
later and I would wake up like where can I, so you mentioned that you were married.
09:33
I am married.
09:34 - Kerly (Host)
Did you meet your husband before you got diagnosed or after it was a?
09:37 - Cristina (Guest)
long time after. Oh, okay, we met online, I want to say about six or seven years ago, no,
actually longer than that, because we've been married for five years. I'm so incredibly
grateful to be with him. He also has sleep issues too, so he understands. He has apnea. It's
the mask when he sleeps. He doesn't really like to, but he understands. Okay, it's a brain
thing. It's not like you're trying to be lazy.
10:04 - Kerly (Host)
It's. You're just really exhausted. That's really good. I'm glad you found him and that he's
supportive. I think that really helps. Yeah, to have a supportive family unit or a supportive
spouse or partner. For sure, it's key. What was it like with your family? Were they
supportive? Did they understand? Did they take the diagnosis?
10:26 - Cristina (Guest)
I feel like there's a lot of denial. I would see my mom fall asleep during dinner. She'd put her
head down for a couple of minutes and she'd say I just need a couple of minutes.
10:35
I'd see her getting tired and then my dad leaving dinner and going to the couch and sleeping.
I was like maybe this is it, they just don't know it. She didn't really believe the diagnosis. She
thought the doctor was just trying to put medication in my system. It was pretty wild because
I'm watching her have symptoms. The two of them have because there's a genetic
component. Yeah, and it's just denial. Maybe if you don't sleep during the day, you sleep
long at night. You have a good sleep at night. You're okay.
11:05
But I was getting into trouble at work even after medication, because I could not wake up.
Three alarms and I would still get up five minutes before I had to. It was bad and that was on
high doses of medication. I was on a new vigil at first, then provigil, then Adderall Actually
Adderall was last and we tried Ritalin, we tried Concerta, we tried Zyrem. The Zyrem worked
the best but it had the most side effects. I was sleepwalking at night and I would hit my head
and I would wake up and not know that I hit my head. I didn't even need a cup of coffee the
next day. If I'm going to have to walk around with a helmet in my sleep. Is that really worth it?
11:51 - Kerly (Host)
That's so interesting. You'd think that the Xyrem was supposed to make Christina feel so
sleepy that it puts her into a deep sleep. Yeah, it was triggering her to walk around in the
night, but it was having the best effects in the daytime. That's wild. We're both on serum.

12:10 - Cristina (Guest)
I was on the highest dose too. I think what happened was my brain resisted the serum. So it
would be like, oh, I feel sleepy. And instead of wanting to sleep because when I had
symptoms of narcolepsy in college I would feel the urge to sleep I would be afraid to fall
asleep. There is a real fear of falling asleep. I was on the airplane coming home a couple of
months ago and I was so afraid to just close my eyes. I was like if I close my eyes and I fall
asleep, then I'm going to feel disoriented when I wake up. The reality is it's okay to fall
asleep. The more that I fight it, the worse it gets.
12:48 - Liz (Co-host)
Definitely not worth it yeah, I feel like I'm slightly mid-sleep attack right now, so if I'm not
really with it, that's why I don't know where my brain will be I just did a big meal, which is
probably a mistake, and did it not before there. So now I'm like not really on this planet, but
okay, that's how I got my tea here green tea.
13:09 - Cristina (Guest)
I think I'm on my second cup already. What time of day is it that?
13:14 - Liz (Co-host)
it's 1 pm. Ah, okay, what do your symptoms look like now?
13:19 - Cristina (Guest)
oh yeah, it's not pretty. So there were times where I'll be in the middle of doing a cooking
show and I'll fall asleep. Like mid or last night we were at a meeting it's like one of those
where you take a turn to have the floor that I was so tired that I started speaking and then
halfway through I rammed out. I was in Rambo and I was like I don't remember anything
about what I said. I don't even remember the topic. Afterwards I looked at my husband. I
could see people were staring at me. They were looking at me like are you talking? And I'm
like totally off topic. I looked at me. What was that? I'm like I've been in the middle of this
thing. Don't drag me in. You've named enough things. Thank goodness no one embarrassed
me about it or anything. This is us, because I'm editing music at the moment, so it's just full
on what made you come to this decision.
14:16
Sure, the last medication that I was on, I tried Adderall and when I took it when I was
younger, it worked beautifully. Except I was on a super high dose, like 70 milligrams or
something, and more than enough for the average person. Our brain doesn't respond the
same way to, I guess, medication we need like a higher dose my sleep doctor explained to
me when I moved here I couldn't find anybody to prescribe it. I recently got a prescription I
think it was several months ago and it shook me up because it was a 10 milligram dose and I
realized that it cut my appetite so much that I was starting to count calories on the labels
which I ate, so much that I was starting to count calories on the labels.
15:00
My brain works better on food. I enjoy my food. I'm a home chef, so I cook and roll my
genius creative recipes, which is nice because I get to think on my feet and embrace joy.
Sometimes that's okay. Yeah, I'm donked out. I will actually fall asleep on camera and tag it
like I do that. This is good awareness. I used to get about it and then I realized we need

people to step up and be aware. Hey, this is the reality. This is what happened. Medication's
not in everyone's play card.
15:33
That's really hard, because when I took the addderall I had more energy, for sure, but I was
also distracted a lot. I was like I have more things to be distracted about. I'm trying to stay
awake. It's not an easy decision. I wish there was some kind of magic medication that I could
just take. That would work.
15:57 - Liz (Co-host)
It made me go back on the Xyrem but I would just have to wear a helmet. Your husband
would love that I might have to tap out just because I am so sleepy right now. I can't face
that. Okay, very sorry, but I will nap before the next one and be more prepared. If I wake up
and you're still online, I'll join again. Sounds great pleasure.
16:19 - Kerly (Host)
So, christina, tell me I just started wake. It's eight weeks ago. Prior to this I got taken off
crescenta. I had been on some type of stimulant, because you know it's always changing
when your body gets fed up of it or whatever from 18 till two years ago.
16:37
Yeah, that's affected my heart and then they took me off it. I feel what you're saying about
when you're not medicated, but I must say what it taught me is to really listen to your body.
It's like I'm still not medicated. I have the serum thank god I have serum and I had venafaxin.
That is what's controlling my cataplexy. I've always been on medication for cataplexy.
16:58
I dare not want to experience what it's like not to be on medication for cataplexy, because
before they put me on Xerum, I was falling all the time on the streets, yeah, and when the
medication's not working for cataplexy, it's a complete disaster. But it did teach me not being
on stimulants to really listen to your body, like faster. But it did teach me not being on
stimulants to really listen to your body like. I would take my naps now before I would try to
push through it, because you had the stimulants in your body keeping you a little bit on the
upper, but now it's like your body's. No, you need a nap right now. Let's take that nap,
because things are going to get worse and then you're going to have catapult. See if you
don't take the nap correct, that's a's a trigger for me. Yeah, so I feel for you. I'm so impressed
with your cooking and stuff, but you like to cook anyway.
17:44 - Cristina (Guest)
I love to cook. I started my account it's called Gourmet Recovery on Instagram. I started that
account because I was having problems with my stomach and all the doctors put you on
these restrictive diets and they're like don't eat this, don't eat that, you gotta eat low
FODMAP. And so I started to fear food and started to be afraid to eat and I teamed up with
this intuitive eating principle and it's a process. It's something that you have to learn to listen
to your body. I had to learn to eat on schedule first, and then I was able to understand my
cues and now it's just like free for all.
18:20

I love my vegetables. I love balancing my meals out, because if I eat proteins and carbs
together, I feel better. It's just overall, my brain is happy, my body is happy, it got food and it
turns out the things that I was afraid to eat, that I thought were going to bother my stomach,
actually there's less of them. Oh, that's interesting, so it's nice. I had to swap out spinach for
kale, so I use kale instead of spinach because that's apparently easier on my stomach.
Popcorn I eat popcorn yesterday. The beauty of it is that I have learned to listen to my body
and adapt to the need. I use that when it comes to sleep. Sometimes it doesn't always work.
If we're out on Saturday, I run errands in the morning. I get my Starbucks, get my coffee.
19:09
That's the only day a week that I actually drink coffee, because I normally drink tea during
the rest of the week, I get my coffee, I run my errands, I get a massage and all my husband's
at the exercise class. And I took the same class. It's Kung Fu and I really love it, but right
now a long break because I my hand. I broke my pinky, oh no. First two weeks were bad and
then my shoulder got messed up Trying to learn how to walk the dog, oh wow.
19:41 - Kerly (Host)
Because he realized he can pull oh dear, he's joining me underneath.
19:43 - Cristina (Guest)
Learning how to walk him was interesting. Especially when I'm exhausted, it's worse.
Sometimes, when I'm really that tired, I'll get dizzy, fighting sleep or fighting. So I'm not
supposed to, but I'm fighting the sleep and so on. So happens the body just takes over
cataplex, she takes over. It's not pleasant. I've had to learn to laugh about it because it looks
like I'm on some kind of opiate or something. When I drop down to the ground, instead of
falling, I get like an aura. So I'll either squat, if there's no wall, or I'll lean against the wall and
just sit for a minute. People look at you, especially in public, and they're like are you?
There's no wall, or I'll lean against the wall and just sit for a minute. People look at you,
especially in public, and they're like are you okay? Is everything all right? Was something
wrong? And I'm just like no, it's fine, just don't help me up yet. My legs will not work. I'm like
it's just my sleep thing, I'll be all right in a minute, but especially if I'm tired, it's overwhelming.
20:35
Yeah, I really need to go to the car and take a nap or something, or somebody calls an
ambulance no.
20:43 - Kerly (Host)
Has anyone ever called the ambulance on you?
20:46 - Cristina (Guest)
No, One of the things we do is I have a bracelet that I wear.
20:50
I wear it when I'm in public and I'll just say you're a safe spot and just warm, like either
blankets or something, so I can sit or lay still for a few minutes. I also have my dogs. My one
dog is older she's about 10 now, an old lady but we take her everywhere claiming that we tell
them she's a service dog, which she is. I taught her how to wake me up. She'll start licking
my hands or if I start to cataplex you, she'll lay out in front of me.

21:19
So I have something to yeah, and it's great and I'm hoping to teach a little on that yeah we're
high strung.
21:27
He's living more energy, but hopefully it'll be nice to take him around and teach him other
things. So she realizes that I'm starting to go into cataplexy, She'll put her paws on top of me
and it's like you see it, mom. It makes it more freeing, it allows for more liberty. Hey, I can
walk around. I go to the store and like they realize she's there and I'll say, oh, it's the service
dogs, and I'm like she's a service dog.
21:51
She doesn't have the paperwork. That's one of the issues I've run into, because people
confuse the idea of a service dog with oh, you need paperwork, a vest, you don't need
anything. It's not legally required to have a vest in something that's a service dog. It's all
based on their behavior. In fact, we took her to a hotel six months ago. They had a no pet
policy, but we're like the sitter canceled on us last minute. She's really going to be quite in
the way. They let her stay and she did work wonderful for the most part. She doesn't like fire,
so the fireplace was on. She doesn't like vacuum cleaners and she got a little anxious, but
she's Apart from that. Yeah, yeah, he barks, she doesn't. She never barked until he moved in
so let's talk about narcolepsy and humor.
22:46 - Kerly (Host)
Yes, so how do you use humor to help with your narcolepsy?
22:51 - Cristina (Guest)
it's definitely a coping mechanism for me and I know the wild part is that laughter shuts off
cataplexy. But I see it as a way of if I'm really enjoying myself, like truly enjoying the moment.
So what if I end up on the floor Because the floor has sank this place for me to be? And the
funny part is, comically, my husband loves to trip me off. He loves to set it off because he
gets enjoyment out of it.
23:20 - Kerly (Host)
It is one of your triggers. Some people have a human trigger as well as. Some people it's
laughter, some people it's anger. It's different. Emotion is stronger in different people that
mine is laughter, like yours, but I also have a human trigger. One of of my sisters is my
trigger.
23:37 - Cristina (Guest)
Yes.
23:38 - Kerly (Host)
Yes, it's your husband, he enjoys it.
23:40 - Cristina (Guest)
I think part of it is he likes to see me drop down. Also, I don't have any filter, I just say what
comes out of my mouth.

23:48
And sometimes it's actually funny. The material itself is funny. I can't make stuff up, I just tell
it like it is. That's why I started doing videos, because I realized it can be depressing, it can
be sad. I have these episodes and I've seen people have cataplexy on video and my heart
goes out to them. It's a daily choice. Do I get depressed about this or do I see where it takes
me?
24:14
The other emotion that triggers me is anxiety, though that's a bad one. The last time I had
one of those, I was flying. I love travel, I love going places. It's the takeoff. It's not that zero to
600, that rush. It's so overwhelming that it's almost like a trigger. And then I have a panic
attack. I'm like I don't know who's watching, who's around me, and then the panic attack just
blows out of me. I haven't ended up on the floor because I've had my husband next to me. I
carry around the sunflower badge. Yeah, there's some more. Traveling Spouse needs to stay
with me Near by, and last time we traveled I foolishly had packed First of all, I lost my phone.
24:53
Someone was in a neighbor's car. She helped me out with the ride the day before. So I'm
like, okay, I can't get to the store, I'll pack everything else. I had my wallet with my credit card
inside the car because I didn't check. I left my ID.
25:10
I wanted to stand at the TSA and they had to make a phone call. I was so anxious that I was
like I can feel this coming on. And I was like I can feel this coming on and I was like I just
need to sit. Poor officer, she's crazy. Hey, do you want to sit down? I can get you a drink of
water, but you have to stay with me and answer these questions. And I'm like I don't know.
They took a little bit longer, but they did let me through.
25:35
We had 20 minutes from the time we got off the bus to get to the next flight and we had to go
through security. I had all these old documents my college ID, I had a paycheck, a pay stub
from like years back, something else and they let me off a little bit easier. They're like, okay,
we're going to do a modified scan and we actually made the flight on time. Wow, yeah, it was
scary. I ran to the airport and when I got on board, my bag wouldn't fit in the overhead. So of
course, I'm like the poor flight attendant in the aisle and I know they're not supposed to do
that, put your bags away. But I think she felt so bad for me that she helped me out and she's
like come on, let's get you back to your seat, I'll get you a glass of water. But I felt like I was
going to just fall onto the ground and miss all the airplane Anxiety producing, and it turned
out to be a really good flight.
26:34 - Kerly (Host)
Have you ever used the special assistance service at the airport? Oh, you know what you
should try that next time.
26:42 - Cristina (Guest)
I got a wheelchair. Yeah, from gate to gate yeah, it's really good.

26:47 - Kerly (Host)
I always encourage people with narcolepsy or any type of chronic illness to do this, because
it's so big and if you've got bad catapults or if you're really tired, you're just going to look like
you're drunk, you look disoriented and stuff. You're less likely to get help. It's best to just take
the special assistant. They'll take care of you and they'll make sure you get on their plane
and if you fall asleep it doesn't matter, because their job is to make sure you catch your flight
yeah, and that's why I have the sunflower badge too, because, because we made the
difference last night, like I couldn't find it.
27:16 - Cristina (Guest)
At first they said to go downstairs and there should be like an information desk that has
them. And there weren't any at the information desk and they're like, okay, go upstairs once
you get your ticket, go upstairs to the mega left. And the office was just about to close and
the guy that was coming out of the office and he's like you're looking for a sunflower, right. I
was like, yes, he's like. I got you, girlfriend, I needed one. It's nice to have people that
understand.
27:44 - Kerly (Host)
So what misconceptions about narcopsy would you like changed?
27:49 - Cristina (Guest)
It's not a sign of weakness. It's not a sign of laziness. We're actually bright people who just
have a thing with our brain, just like somebody with epilepsy.
27:59
Yeah, there's no shame in it there shouldn't be any shame in it I was hiding because I felt the
shame and I don't want to feel shame anymore. Yeah, it's a brain thing. Yeah, and in fact,
like when I was younger, I was told, oh, you have to learn to control your laughter or
whatever your, your emotions. And I'm like, now that I realize it's cataplexing me, I'm like,
okay, well, that's different, because it's not that I can't control my emotions, it's just my
emotions lead to down on the ground, sitting on the floor. Thankfully I haven't gotten hurt.
There was a step and I forget what set me off. Sometimes there's no rhyme or reason to it,
isn't?
28:35 - Kerly (Host)
that annoying, the joke that happened, the anxiety, the stress, the sleepiness?
28:42 - Cristina (Guest)
None of these things seem to have been the thing, and it just happens.
28:44
That's what happened when we were at the mall the other day. I wasn't even tired, it was just
like my brain was sleepy. The cashier was talking about his grandmother and I just looked. I
was grabbing onto the railing and this person comes up next to me Okay, my story didn't go
well. I'm like no, we're cool, give me a minute, I don't want you to fall. I'm like no, I ain't going
to fall. The nice part about it is my husband's right there. Yeah, thankfully it has not
happened. Oh, actually, I take that back. It did happen. So I was running errands on

Saturday and I'm sitting there in the chair One of the things on my to-do list. Next thing, you
know, I'm opening my car. It's like where was I? What number was I? What was I supposed?
29:28 - Kerly (Host)
to be doing.
29:30 - Cristina (Guest)
Thankfully no one saw it, though. Everyone just paid attention to their own thing. So it's nice,
but I'm like I just fall asleep in church, Falling asleep in church, like people don't seem to get
upset with me if I fall asleep in church. I used to fall asleep in college and I had one
professor that was so completely willing to help me. He let me record his classes and he let
me sleep in his office. He let me sleep during class because he would put the temperature
down. And one of the things is when I feel cold, I hibernate. In fact, I always have a heater
next to me or something, because if I'm cold I will sleep. Even if I don't intend to, it's going to
happen.
30:11 - Kerly (Host)
It's just like the cold temperatures are a trigger for the narcolepsy, for a yeah, the same part
of the brain that has caused the sleeping to be fragmented and to be off. It's the same part of
the brain that controls temperature and that makes more sense so I can't regulate our
temperature.
30:29 - Cristina (Guest)
I would have a coat on in his classroom yeah and he let me videotape it and then watch it,
because he knew that I had straight a's in his class. I was actually on the dean's list twice in
college. Even with the sleeping attacks and they can be scary some of his aura is like the
narcolepsy aura. It's like when you're going into a room and you're awake, it can be very
scary. I'm almost afraid to fall asleep. I don't know what's gonna happen to me while I'm
asleep. We're going to faint and we're going to just stop breathing. Why? Because it almost
feels like an out-of-body experience. I'm here, but I'm an alien to this world. I'm looking
through the eyes of a stranger. Almost I'm not even present.
31:14 - Kerly (Host)
Like that, when you're dreaming, dreaming where you're having the experience yeah, it's
happened.
31:20 - Cristina (Guest)
That's like sometimes I get afraid to fall asleep because of that. One time it was the wildest
thing and sleeping on the couch I woke up and I feel like this dog sitting on top of me and I
was like, oh, it's my sister's dog and my sister doesn't have a dog. I guess I was in between
dreaming. The scariest part was I heard something on the door like somebody pulling or
banging on the door. I was like, oh, I just screamed and went upstairs and I'm like I'm trying
to hide and I'm watching the video replay back, because we had a camera in front of our
house to show the front door. No one there. I just hallucinated the whole thing.
31:54 - Kerly (Host)
That's creepy yeah, very creepy. The pong thing and hypnagogic hallucinations very scary
stuff. All your senses are alive your sense of taste, smell, hearing, everything is so alive so

everything feels real. You don't know who will wake up if that really did happen or not, unless
you have a camera for proof or someone to ask did this just happen? You?
32:21 - Cristina (Guest)
can't afford. It's scary, but it's nice that I have my husband now. When I wake up from a
nightmare, I'll just touch him and be like, oh yeah, you're there, you're right there.
32:31 - Kerly (Host)
There's only a dream, there's only a hallucination. You can tell that in public. Yes, exactly.
32:37 - Cristina (Guest)
Oh man, one time I was on a bus, public transportation and there was something on the floor
dice and I could have sworn up down left and right that it was a mouse. I actually stood up, I
put my seat up and then it came to and I'm like, oh, it's just a children's toy on the floor. All
these people have been thinking like what's wrong with this girl?
33:01 - Kerly (Host)
You have to laugh these things off, otherwise you'll cry. Because it's just how can the brain
make this stuff up? It can't make this stuff up.
33:08 - Cristina (Guest)
It's the whole beauty of it. That's the reality. I'd rather make videos that show okay, because
I'm not making this stuff up. It's actually entertaining Because I can't explain it to people, but I
can help them cope and feel better about it and just be like you're not alone. This stuff
happens and I've seen videos where people are so upset and crying over it and they're just
like.
33:27
I know I've been there, yeah, but the reality is, if medication is not my option, you have to live
with it Exactly. The reality is if medication is not my option, I have to live with it Exactly. And
sometimes cracking jokes is the best thing you can possibly do and it makes life more fun,
yeah.
33:43 - Kerly (Host)
And after all, life is for living. I know a couple of people who are not on medication One
because her body can't tolerate it.
33:56
Another person who used to be on, but now she purposely has taken herself off because
she's in a different stage of life yeah, out of the house and everything and so she feels that
the side effects of medications give is more detrimental, causing other problems for her
health than not being on medication at all. So, to save herself getting other illnesses that you
get once you're on too much medication, she just manages an narcolepsy her own way and,
as she doesn't have those responsibilities that she did before when she was younger, she
can and that's one of the things I want people to know too is that there's no right or wrong
way to handle an narcolepsy or cataplex.
34:32 - Cristina (Guest)

everyone has to figure out their own way to manage it. There are things that help. Obviously,
I drink tea. It doesn't always get me through. I still need naps. It got me through today. I took
a nap before we signed on and I was like 20 minutes, 20 minutes, 20 minutes hoping to pray.
I'm like 20 minutes. Make sure I hear the alarm and I heard the alarm so it worked.
34:57 - Kerly (Host)
But yeah, if I don't't set the alarm, these naps are like hours on. I can relate to that, since I've
been doing the interviews since January. People have been saying this a lot. When you go
to the doctors, they say you must only take half an hour nap, and almost every person I've
talked to has been saying the opposite that they need hours of naps. I don't know where the
doctors are getting this information from, because they made it seem like everyone was
taking half an hour naps. Everyone I've been talking to from other parts of the world is telling
me it's something completely different.
35:26 - Cristina (Guest)
Yeah, I agree, sometimes it's longer, like sometimes I don't even hear the alarm, or I'll sit
down and I know I'm tired because the screen's looking a little cloudy and I just get five
minutes, five minutes turned into hours and I'm just like, oh, yeah, that was the best ones.
35:43 - Kerly (Host)
You say I'm just going to close my eyes for five minutes. I wake up and it's been three hours
or two hours and you think, oh wow, how did it get so? How did that? And it doesn't feel like
he slept for that long?
35:58 - Cristina (Guest)
yeah, like he just had 15 minutes and he's just like wow, yeah, I know, and I also feel like
another thing is that people shouldn't be afraid to ask for accommodations either. And that's
a tricky one, it's a hard line, but I noticed one of my jobs and I did get let go from that one.
But I was literally trying to make an appointment for someone and I'm on the computer
screen and I can't click save to save her appointment and I'm writing her appointment down
but I had no clue where I put it in the schedule. I had to call her and be like oh oh, there was
a computer problem. It wasn't a computer problem, it was me, because I was basically going
into REM in front of her. I'm having a conversation with her.
36:42 - Kerly (Host)
You were doing something and your brain had already shut down. Yeah, it was rough.
36:49 - Cristina (Guest)
I looked at my coworker and I'm like here, take over for me. But sometimes it doesn't help.
Sometimes those little tricks don't do anything, and that's the hard part, that can be the
frustrating part. I want to participate, but I'm not with it. I want to spend time with family. I
want to spend time with people.
37:06 - Kerly (Host)
Do you find that draining like socializing and stuff sometimes?
37:10 - Cristina (Guest)

Depends on what the socialization is. If we're doing an activity with friends or if I'm in class,
then it's different. I've had cataplexy happen in class. One of the things is the teachers would
use us as like demonstration for the younger levels, for the earlier levels. So in one of them,
the one instructor grabbed my wrist and I started laughing. Next thing, you know, I'm on the
floor and she's what happened and I'm like I just thought it was funny because you're so
nice, she's such a nice person, there's such nice people, my instructors are so nice yeah, of
course a grip for a nice woman, inspiring me now because, no, I'm the one with the strong
grip.
37:54
I got to Brown Belt before I had to take time off. Yeah, so I was in Brown Belt for at least two
years and my memory doesn't work.
38:04 - Kerly (Host)
The way it should. It's definitely an epilepsy and it changes over time. The older you get it
starts to change. I remember when mine changed. It must have been like five, six years ago.
It happened and I remember because something that usually took me half an hour to do on
the computer for work was taking me an hour to do. I know how to do this. It's half an hour
activity. Why is it taking me one hour?
38:32
It's like my brain was deteriorating. When I was trying to explain it to my friends they wouldn't
understand. One of my aunt's a social worker and he said they wouldn't understand because
they're too young. If you say this to an older person, maybe someone in their 70s, they
couldn't relate. They remember what they were like when they were 30 and now how their
brain functions. Now a year old is not going to know that because they haven't been through
a stage that their brain has started to change. But mine just happened overnight and it never
was the same. After that I really could feel the difference. It took me physically longer to do
tasks that I could do really quickly before. My memory's not as sharp. I have to write
everything down, otherwise I forget.
39:14 - Cristina (Guest)
I love doing analytics so I like to break down things and know why they're there. I'm a
philosopher by nature and that's when I got my bachelor's. It's cool because now I get to use
it. But I like breaking down things into analytics and logic. There's all these grids in my notes
and my assistant is like what is all that? It looks like some weird math equation. And I was
like what is all that? It looks like some weird math equation. I was like it's not math. I'm just
trying to tune my notes because I feel like if I have it visually in front of me, then it's going to
help me trigger the memory.
39:46 - Kerly (Host)
And.
39:46 - Cristina (Guest)
I've been doing a memory meditation.
39:48

I'm sitting in the classroom, the professor is standing right there. It's just me and the
professor, no one else in the classroom. I'm trying to receive the information If I have a
question. I know exactly what because I've been in class and especially studying for the first
responder test. Picture him standing in the room, the PowerPoint behind. Now I know I'm
seeing the PowerPoint because my visual memory is better than my reading memory. So I
use visual a lot and if I can remember what's on the screen, maybe I don't have to. I've been
trying that so we'll see how it gets.
40:26
The problem is the way I wrote my notes, the cues that I use. I wrote the same word a million
times. I need to ask for help. Or you went sleeping when he wrote those by pulling a store.
But not every word is valuable. Not every word is going to be said, because they obviously
sugarcoat it, they downgrade it. For us problem is in reading the book. It's some 600 plus
pages and they could take questions from anywhere in the book. So you really have no. So
it's taking a lot longer to study, but my kung fu teacher reminded me that there is no time limit
in life.
41:06
Only put time limits on ourselves. So if we say oh, I gotta do this x amount of time and we
don't get there and get disappointed. Yeah, you don't have to worry about am. Don't get
there and get disappointed. Yeah, you don't have to worry about am I going to get there.
Everyone does it at their own pace. I guess that's an ethical word of life, especially with
narcolepsy. We do have to take it at our own pace. There's nothing bad about it. There's no
shame about it. It just is what it is.
41:31 - Kerly (Host)
I totally agree with that. That brings us to our special question. Christina, if you could press a
red button and by pressing this red button you'd get rid of narcolepsy, would you press the
button, and why?
41:57 - Cristina (Guest)
course everybody would, but it's part of my identity. This is something I lived with for over 20
years and it would be nice to have more energy, hopefully find that medication that would
work to do it with having less side effects, because I really didn't feel happy counting
calories. I was a cereal dieter, like Weight Watchers, and I did keto and I did all of those and
I wasn't happy. I wasn't any happier in a smaller body. My body prefers being in a slightly
larger body. I don't want to accept that. I eat vegetables. I like my proteins and all that I like
eating what people call healthy food. I have salads and everything, but I also have snacks. I
enjoy eating. When my stomach was really bad, I couldn't get that in and my brain was
feeling the consequences. Now that I have a more balanced diet and more balanced
lifestyle, I'll do movement. There are some videos where I do gentle movement. I'll post
those and it's these little movements that we make with our body. Even though they might
seem small, they're significant.
43:01 - Kerly (Host)
Yes.
43:02 - Cristina (Guest)

It's still counted movement, and it doesn't matter what it looks like, it's just our bodies need
that. During the day, I want to move. I want to dance around the kitchen, I want to dance
around the living room and play with the dogs. I find that when I move around, the cataplexy
doesn't affect me If I'm already in motion, unless I'm just exhausted. My lifestyle right now is
a lot. My blood work is perfect, minus vitamin D, which was initially low. It was non-existent,
but I think it's probably. I spend more time sleeping indoors and going outside. I have this
dog, yeah, but I know this is sunshine could help Sometimes. The sun makes me more tired,
though.
43:45 - Kerly (Host)
Definitely.
43:46 - Cristina (Guest)
I noticed that it's like depending on how hot the weather is.
43:49 - Kerly (Host)
Yeah.
43:50 - Cristina (Guest)
Sometimes they'll light me up. One time I was in the little room I got this. It was bad that one
day because I was hungry. So when I get super hungry, if I don't snack as soon as I eat, the
narcolepsy gets worse and it's just like all right. My brain feels better, my food in my body, it
feels good, and then five minutes later I'm crashed out in the car. Yeah, that's because I let
myself get too hungry at that point. That made the mistake of not bringing a snack and in fact
when we flew on the way home, that's exactly what happened. I took a little bit of medication
to soothe the anxiety. We were on the bus to the airport. I was so hyped up with adrenaline
because I was so anxious about getting through TSA and everything that I stayed awake
throughout that first flight. But then, as soon as we got food, that was it.
44:42
That was it. I had taken a tablet and I had closed my eyes on the ground and next thing I
know we're already landed and getting off the plane. It was an hour long. It's like it didn't
happen. I'm wondering well, that's perfect for me, like it didn't happen. I wonder that's perfect
for me because I don't like to feel it. I just don't like to feel the movement. Sometimes when
you feel it, the turbulence, it can be a little nerve-wracking, but it's also normal and I know
that. I wish I could just feel the under-the-body.
45:08 - Kerly (Host)
I love flying, but I tend, of recent I'm falling asleep before the takeoff, Okay, of recent I'm
falling asleep before the takeoff okay. So I'm waiting to have the takeoff because I like flying,
and then I wake up and then we're already in the sky and I've missed it. What do you like
about it? No, I just love planes. I've always liked planes yeah yeah, the last two years. My
thing I sleep to is the Alexa sound is airplane the sound when you're in the airplane that way
yeah, I can understand that.
45:42 - Cristina (Guest)
It is soothing once you're up there. Yeah, would you press the magic button?

45:48 - Kerly (Host)
when I was asked this I said no, I wouldn't press it at the time because it's like I've lived more
of my life with narcolepsy than without it. I started when I was 15, so, yeah, I have more
memories with it than I have without and I've met so many people that I would never have
met if I didn't have this illness or this community. I think, as much as I am very kind and
empathetic and really good friend as a person, it's even exacerbated those attributes more.
Yeah, having the narcolepsy and being able to empathize and reach out to other people and
help other people, I wouldn't press the button. And the last person I interviewed thought it
was a trick question and I said it's not a trick question, trick question. And I said it's not a
trick question.
46:37
If someone had asked me last week when I was sleeping a lot like 12 hours a day and not
accomplishing much in the day luckily we're on half term, I'm not having to get up to alarms
and my sister calling me constantly to make sure that I'm actually out of bed the alarm went
off and she rang me and she's like Kelly, have you gotten up? And I'm like yeah, I've gotten
up and like so why can't I see any light?
46:55 - Liz (Co-host)
Yeah.
46:56 - Kerly (Host)
I am miserable with her the whole time, until I get on the bus, yeah, and she's like good joy
and stuff like that and I'm just like I want to punch her. She's lucky she's not here. She's like
on the phone and she's like did't get out of bed. And sometimes she won't come off the
phone. She's like come on, get out of bed, put your foot over the bed, get out. She won't
disappear until I'm physically out of the bed. You're just grouchy in the morning anyway, like
so miserable. I've recently found out it's called sleep inertia. I didn't even know there was a
name for it. There's understandable why you can't get out of bed. It's painful.
47:37 - Cristina (Guest)
I can't even tell you how many jobs I got threatened to lose because I wouldn't show up late.
And I'm just like I'm sorry but I just can't. It's like physically incapable.
47:46 - Kerly (Host)
The amount of spoons we have to use just to get up off the bed. Exactly, and that's what
people don't get. We had 20 spoons for the day. Exactly, and that's what people don't get.
We had 20 spoons for the day.
47:59 - Cristina (Guest)
I'm telling you 10 of them was used just to wake up when I work. I want to have a job. Right
now, my job is just staying at home with the dogs and blogging and posting social media. But
I also feel like there's a lot of misinformation out there and if I don't post, someone is gonna
find the wrong thing. Yes, I agree, I'd rather be in a voice of experience oh, thank you for
doing that.
48:23 - Kerly (Host)
Can you let everyone know what your handle is, so that they can find you?

48:27 - Cristina (Guest)
called gourmet recovery, so g-o-u-r-m-eT, and then it's a capital G and then a capital R, so
R-E-C-O-V-E-R-Y, and I'm on Instagram and Facebook as well.
48:42 - Kerly (Host)
Okay, so everyone check out Gourmet Recovery and folks. It's all there. Christina, it was
lovely having you on and hearing about your story and how you use humor to battle
narcolepsy and cataplexy. Thank you for coming on Well.
48:58 - Cristina (Guest)
well, it's a pleasure meeting you as well and let's to let her know. I said thank you, yeah, I will
that one's lovely.
49:06 - Kerly (Host)
So at the end we usually say happy napping everyone. Happy napping everyone. 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.
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 gmail dot com. You can also support us by
donating at the website. Happy napping everyone.