S4E6:Building a Life That Works With Your Energy: Cloud’s Journey

In this episode of Narcolepsy Navigators, we sit down with Cloud, a narcolepsy advocate from San Diego living with Narcolepsy Type 1 with cataplexy.

After years of struggling with unexplained exhaustion and symptoms that began in adolescence, Cloud was finally diagnosed at age 30. But diagnosis wasn’t the end of the journey — it was just the beginning.

For nearly a decade, Cloud intentionally stepped away from traditional schedules to learn how their body actually functions with narcolepsy. That meant building a life around energy levels, sleep cycles, and personal boundaries rather than society’s expectations.

Now, ten years later, Cloud has reentered the workforce and is navigating what it means to balance work, health, relationships, and identity with a neurological sleep disorder.

This conversation is honest, thoughtful, and deeply relatable for anyone learning how to build a life around chronic illness rather than fighting against it.

Topics Covered

• Recognizing narcolepsy symptoms as a teenager
 • Receiving a diagnosis at age 30
 • Why Cloud stepped away from traditional work for years
 • Learning to live on your body’s schedule
 • Reentering the workforce after a decade
 • Balancing friendships, family, and fatigue
 • The mental load of narcolepsy
 • Adjusting medication and nap schedules
 • Why understanding your body is essential

Why This Episode Matters

Narcolepsy isn’t just about sleep attacks. It affects careers, identity, relationships, and how people move through the world.

Cloud’s story highlights the importance of self-awareness, boundaries, and designing a life that works with your condition instead of against it.

About the Guest

Cloud lives in San Diego and was diagnosed with narcolepsy with cataplexy at age 30 after experiencing symptoms since adolescence. Over the past decade, they have focused on understanding how to live well with narcolepsy and are now exploring new ways to reconnect with work, community, and purpose.

Transcript

Cloud transcript 

[00:00:00] 

Introduction and Weekly Update

[00:00:00] kerly: Hello, welcome. You're listening to season four 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.

[00:00:34] kerly: I'm Kerly Bwoga the founder of Naps For Life, CIC, and welcome to our stories.

[00:00:42] kerly: And today we have Cloud from San Diego and welcome to her story. So this how, what your week, 

[00:00:48] Liz: my week has been. All right. Actually, things have been a lot better for me recently because for a while I was finding it really hard to nap at lunch times [00:01:00] when I was at work. Which I have to do every day. 'cause otherwise I feel really groggy in the afternoons. But so I recently decreased my daytime stimulant just a little bit, and that means that I actually can nap better at lunchtimes, which means I have more energy for the rest of the day. And it is so good because I'm coming home and , I'm not saying I have like enough energy to run a marathon, but I have enough energy now to make dinner. Or like the other day I even socialized after work, which was crazy. I couldn't believe it. So yeah, having proper naps again at lunchtime has really saved me recently and made me feel a bit more optimistic again. 'cause it felt like my whole life was just about work because I was just about getting through the working day and then crashing afterwards, whereas now I'm napping properly again. I have a bit more energy, so it's been positive, but then that's being canceled out by getting my period this week. So yeah. That's fun. How has your week been? Kerly? 

Challenges of Living with Narcolepsy

[00:01:57] Liz: Yeah, it's been okay. I'm on [00:02:00] holiday here in Kenya came to visit my parents, me and my sisters, and just navigating being with family again, because I've lived by myself for 21 years and so you take like small doses of family and so I'm like stuck with them all the time again. So I find that they're triggering cataplexy more often. Than I would usually have to deal with when it's just me at home with my cats. I don't know,, just little things. It seems like it is so weird. 'cause it's not , I think it's more like annoyance or frustration that's triggering it than anything else. It's not usually the normal things like laughter and stuff like that. It's just like being overwhelmed by too much of them and just need like a break.

[00:02:38] Liz: Yeah, I get that. I dunno about you both, but I find if I'm away with people, I feel like I should be around them a lot of the time, so I don't have as much alone time and then I get more tired much more quickly.

[00:02:51] Liz: Yeah, that's true. So I'm just like making sure, if I get really overwhelmed, just have a nap. Just go have a lie down. Yeah, and that's been helping.

[00:02:59] Liz: Good [00:03:00] plan. So yeah. Also, sometimes that's a good excuse. Like even if you don't need an nap, you're like, I'm gonna go have a nap. So you can have time to yourself.

[00:03:08] Liz: Cloud. How was your week? 

Reentering the Workforce‌

[00:03:09] Cloud: My week has been interesting. I actually just reentered the workforce for the first time in over a decade.

[00:03:17] kerly: Wow. 

[00:03:17] Cloud: I'm working like a shift in other people's schedules for the first time in a long time, and I've had to adjust my sleep cycle and my daily activities to accommodate what's happening in work now.

[00:03:30] Cloud: So it's been an adjustment. I love what I'm doing, but I'm. So tired, like extra tired on top of my regular tired, and I don't have the energy for my friends, my parents, my relationships. I know that I'm hungry, but I can't like put the thought together to think of what I want to eat or how to do it. And I know this is just an adjustment period that it'll even out and I'll get this new sleep cycle in order. But it's been an interesting week. A good one [00:04:00] though. Just a sleepy one. 

[00:04:01] Liz: I can totally relate. I feel like when I started my new job earlier this year, it just completely wiped me out to the point where I just couldn't do anything else. Like even. Yeah, coming home and having a conversation was a bit much, 'cause your brain is just absorbing so much information. Even like processing the new route to work or learning everyone's names. It just takes up so much energy that there's nothing left after that. 

[00:04:28] Cloud: Going home and soaking it in and remembering what you have to do for the next day. You don't have time to think of your little details for yourself., Somehow you have to carve out the time, but it's hard to balance it in the beginning, I don't know how people do this every day, all the day, all the time with extra responsibilities like children and careers and I was very blessed the past 10 years to have created a life where I didn't have to move by anyone's schedule except for when I was sleepy or when I had energy, and I did [00:05:00] what I wanted when I wanted. So this is an adjustment.

[00:05:02] kerly: I can't imagine having to have had that control of your life. And then now the change. 

[00:05:08] Cloud: Yeah. It was a willing change. I am doing it ' cause I want to, and I am doing it because I gave myself the time to learn as much as I could about how to live with this condition.

[00:05:21] Cloud: Narcolepsy with cataplexy in a setting where I didn't really have to be that concerned with how other people were affecting me. I could just go through the motions of what I was feeling, what I needed to do for myself and handle it. And after a good amount of time of doing that, I'm I miss society.

[00:05:38] Cloud: Like I miss people. I miss doing more things. And so now I feel a little more stronger and capable and I'm gonna try to make life a little more well-rounded and balanced somehow. 

[00:05:48] Liz: That's really exciting. 

[00:05:49] Cloud: Yeah. 

[00:05:49] kerly: Alright, cloud. 

Personal Journey and Diagnosis‌

[00:05:50] kerly: could you introduce yourself, tell people your name, where you're from, what state you're residing in, and your age if you feel comfortable, and the year you [00:06:00] were diagnosed.

[00:06:00] Cloud: Of course. My name is Cloud and that is actually my last name, but it is the only name that I go by. I am 40 years old. I live in San Diego, California and I was the diagnosed with narcolepsy with cataplexy at age 30, so about 10 years ago, but have dealt with and been aware of my symptoms since teenager age, have always felt something very off and abnormal.

[00:06:28] Cloud: And didn't like, back in that time, didn't really have the support for sleep disorders, like within the medical community, and people weren't that educated about it. So after diagnosis. I didn't have too much education and I wasn't in a trusting state with the healthcare system and doctors, and so I just said, no thank you to all of their prescription plans and what have you, and took off and moved to an island away from everything that stressed me out.

[00:06:55] Cloud: Everything that bothered me in life. And I completely [00:07:00] created a brand new existence that allowed me to sleep when I wanted be awake, when I wanted do things, when I wanted, surround myself with people if I wanted. What have you.

[00:07:10] kerly: I was gonna say that sounds like a dream for some people. Like they, that is just like what they dream of doing. 

[00:07:16] Cloud: Yeah. And it's what I dreamed of doing, and I got very sick of being sad. I'm very sick of thinking about and talking about the things that I wanted to do for myself to be able to take care of myself. And I got to a point where I didn't really have any other options, so I just did it. 

[00:07:32] Liz: That's amazing. What led you to losing trust in doctors in the first place? 

[00:07:37] Cloud: My medical difficulties started in teenager age, and so as a young teenage female, automatically doctors don't really listen the same that they would with an older adult who's more self-aware and better at explaining themselves.

[00:07:54] Cloud: And I was also dealing with a lot of, female health issues. [00:08:00] So with women, they tend to lump everything around the female issue. If I'm tired, the pain, the things, oh, it's female issues, so they don't look at too many other things. And I didn't know how to advocate for myself back then. So I didn't know how to explain like, no, you're not listening to me.

[00:08:18] Cloud: This is what I'm trying to explain. Like me being sleepy to this level isn't normal. Me not being able to stay awake, not being able to understand and hear people because my brain is so foggy and discombobulated as, even as a child, I felt that it wasn't normal, but I wasn't being heard by the doctors.

[00:08:36] Cloud: So it was hard to trust adults and people in the medical profession that is supposed to have my best interest.

[00:08:43] Liz: And what led you to getting a diagnosis? Was it sounds like it was quite a long journey if you were diagnosed at 30. 

[00:08:50] Cloud: It was a long journey and I had other things happening. I was diagnosed also at the exact same time with a condition called ankylosing [00:09:00] spondylitis. And it's, in the rheumatic condition, like an inflammatory similar to arthritis and rheumatoid arthritis.

[00:09:07] Cloud: So I was dealing with so many different symptoms that weren't making sense to doctors that really specific tests were being done, like they were looking at MS. And other things. So they were looking for genetic markers to explain why I was having, these what I now know as the cataplexy attacks and the narcolepsy, like I was shutting down, I was passing out, I was blacking out.

[00:09:30] Cloud: And it was happening so frequently that more was being done finally to figure it out at a faster rate. And I was very specific Test was done and then they sent me to sleep center. And at Sleep Center it was immediately obvious that I had narcolepsy. 

[00:09:45] Liz: And how did you feel when you finally got that diagnosis? 

[00:09:49] Cloud: I cried so hard and the doctors started to console me, and I had to explain to them, I am not crying because I'm upset, or I'm sad, I'm crying because I'm relieved. I [00:10:00] finally have an answer and an understanding to something that I knew was wrong and I felt, but now I have an explanation.

[00:10:06] Liz: That must have been a powerful moment.

[00:10:08] Cloud: Very much 

[00:10:09] kerly: When you go all this time knowing that something is wrong, but every time you go to the doctor they don't have an answer and you keep doing more tests and still the math's not mathing you just, but you still know that something is not right.

[00:10:23] kerly: That can get frustrating and it's almost tired. And I know a lot of people find that you, not easy to give up, when you really know that something is there is wrong, like something doesn't feel right in your body you just have to keep fighting to get the answer. 

[00:10:37] Cloud: You, lose hope and you lose like trust in yourself.

[00:10:41] Cloud: And at some point you start to think am I imagining this? Am I making this happen? Is it psychological? It's confusing and it's a difficult journey, and I definitely gave up many times and that's why it took them so long to finally diagnose me because I kept getting too tired to figure it out and to explain [00:11:00] and to try to be heard. , It's exhausting.

[00:11:02] Liz: What advice would you give to other people who are going through that same experience? 

[00:11:09] Cloud: Trust your instincts, trust your intuition. Listen to yourself. Believe in yourself because other people don't live in your body and they don't feel what you feel, and they don't know what you know about yourself.

[00:11:22] Cloud: And it can get confusing and you can start to doubt yourself when you listen to other people. Sometimes. Trust yourself and add, learn how to become self-aware and advocate for yourself, which is hard to do. 

[00:11:33] kerly: Yeah. So Cloud, when you were little, what symptoms were you having that made me think, oh, something's a bit strange.

[00:11:40] Cloud: It started actually with the opposite of what you would expect with narcolepsy. It started with, at a very young age, I recall my parents being hyper obsessed with the fact that I wasn't sleeping at night. That I couldn't sleep at all at night. I remember hearing she has insomnia. She's an insomniac.

[00:11:57] Cloud: Something wrong with her. Why can't she sleep [00:12:00] for most of my childhood, which made me feel like I was bad or wrong or doing something wrong, like what is wrong with me that I can't go to sleep at night and then all day long during activities and school, what have you, I'd be so exhausted and my parents would say it's because you don't sleep at night.

[00:12:16] Cloud: You don't sleep at night. So you're tired all day. It's a vicious cycle. Like we're with narcolepsy, we're exhausted all day long, and it's like something clicks in, reverses late at night where we're just like wired all of a sudden and ready for a day. That is already done. 

[00:12:29] kerly: Yes. I like that. That's that's a really good way of describing it. 

[00:12:32] Cloud: Like now I'm ready to go, but it already happened and I was too, to be involved. 

Living with Narcolepsy Without Medication

[00:12:36] Liz: And when the doctors offered you medication once you were diagnosed, you said you lost trust in that process, so did you then decide not to take any medication at all? 

[00:12:47] Cloud: Correct. Yeah I have no education and no experience with the medication needed or used for narcolepsy. When they first tried to prescribe me things, it was like, we're gonna give you this.

[00:12:59] Cloud: And the [00:13:00] way that they explained it was like with Stimulant and a ADHD medication and like Ritalin type stuff, and I don't have much experience. And so all I thought was like, you're gonna give me a stimulant that's going to make my heart race and it's going to make me uncomfortable. And then when I do want to sleep, I won't be able to sleep.

[00:13:18] Cloud: And I had questions that one, I guess I didn't ask, and two things weren't presented to me in a clear way that I didn't want to experiment with medication not knowing how it was going to make me feel. And I'm already very sensitive to stuff. So I remember before if a doctor said, okay, we'll try this for X amount of days or months, because it's gonna take this long for it to get into your system and your system to be responsive to it.

[00:13:45] Cloud: I don't wanna experiment with something for three months. That doesn't make me feel good on a gamble chance. No, thank you. I'd rather I, and I asked them too, I said, why do I have to take the medication? Can't I just take a nap? And the doctor was shocked and they said, oh, most people don't live the type of [00:14:00] life that allows them to just stop what they're doing and take a nap.

[00:14:03] Cloud: And that's when it clicked. I said, okay, then I'm gonna create a life that allows me to just take a nap. I don't want the medication. I'd rather nap. 

[00:14:09] Liz: Wow. I love that. It's very social model of disability rather than medical model. So being like, okay, it's actually, maybe it's not an issue with me that I need to fix. Maybe it's an issue with the type of lifestyle that we're expected to live. 

[00:14:26] Cloud: Exactly. 

[00:14:26] Liz: So actually it's about making changes to that, to society, to my life. 

[00:14:31] Cloud: Yes. 

[00:14:31] Liz: Instead of changing my body. 

[00:14:33] Cloud: We're so quick to take something or do something to change ourselves or like our character or our habits when sometimes it's like something around us that we need to just alter in a small or big way, whether it be our diet or our routine, or the people that we're surrounded by.

[00:14:52] Cloud: There's outside determining factors that affect us that can be altered first before we're so quick to take a medication and change [00:15:00] stuff about us. 

[00:15:01] Liz: Yeah. What was that like then trying to set up a life where you could nap and you did have that freedom and you didn't have to rely on medication? 

[00:15:11] Cloud: It was easy for me because I also made the decision to change my location like drastically. And by doing so, I took myself out of the situation with the people and the stress factors, like immediately that were triggering me and immediately stepped into this brand new existence with people who didn't know quote unquote, what was wrong with me. They didn't know. Lots of things. I just, I stepped into a brand new environment and was able to just create the life that I wanted immediately instead of staying in the same spot and taking the steps to create that life.

[00:15:46] Cloud: I lot of people do it. They up and move and create a new existence. So I guess it made the transition easy for me and what was difficult was when I had to come back to the States and visit my family and friends and step back into the world. 

[00:15:59] kerly: [00:16:00] Tell us more about when you had to come back and visit, how did that affect your narcolepsy symptoms? 

[00:16:05] Cloud: How do you explain this? You already have your own anxiety and like lack of self-confidence with certain things revolving your condition and other people, how they treat you can make it like easier or more difficult if they're more accepting or they don't acknowledge people treating me like something was wrong with me was making me act like something was more wrong with me. I guess that's the best way I could explain it. So when I came back home, people kind of tiptoe around me and they're worried about my symptoms and conditions and babying me, and it made me anxious and more aware of my symptoms, which would kick in my cataplexy and then people would freak out around me.

[00:16:47] Cloud: And in the new environment, no one knew any of that. So they didn't act weird around me. They treated me normal. I was able to act normal. When I did feel the cataplexy come on, I was able to just say bye and step [00:17:00] away without people being like, oh, where are you going? What's happening? Are you okay? What's wrong? Which would stress me out more and kick the cataplexy in quicker.

[00:17:07] Cloud: So being in an environment where people didn't know that anything was wrong with me was helpful for me. 'cause it's like the fake it till you make it. If I could act like nothing was wrong, I could hold back those symptoms a little bit better.

[00:17:19] Liz: Interesting. I feel like that's quite a unique perspective because a lot of the people that we speak to say, actually I wish my family understood more or knew more about it because then they can be more supportive. But you are almost coming from the opposite. Perspective where you are saying the less people knew, the better because it triggered your symptoms.

[00:17:39] Cloud: Yes. The less than knew, the better because most people just don't know how to act. They don't know how to respond, and I don't have the energy to teach everybody that. I don't have the energy to teach you how to behave towards my symptoms and my situation. And of course [00:18:00] I definitely wish the people in my life understood what I dealt with more and had a deeper understanding. And I've given them all the tools of things to read and things to watch, and things to listen to, but there's only so much you can do to teach another person about what you're actually going through. And there's only so much understanding that another person can actually gain because their perspective is so different.

[00:18:20] kerly: That's so true. I find that so interesting how you can know someone for years and they know you and they've seen you grow and seen the they still might not get it. And then you can meet someone completely new, like a complete stranger and they get it immediately and you're just like, how is that?

[00:18:34] Cloud: And then also think of how long we live our own lives as ourselves and are in constant states of getting to know ourselves. So how can we expect another person to know us and understand us? So completely, so instantly. 

[00:18:49] Liz: Yeah. It takes time and a big investment, which we don't always have the energy for

[00:18:54] Cloud: and unconditional love is easy to talk about, but it's very difficult to actually give. 

Creating a New Life in Puerto Rico

[00:18:59] Liz: [00:19:00] So you moved to an island, right? Yes. I wanna hear more about this. So where did you move to and what did you do there?

[00:19:06] Cloud: I moved to Puerto Rico, an island off the coast of Florida and close to Dominican Republic. And I moved there because I had a cousin who lives out there for the surf culture. And after diagnosis, I was in a state of having to finally quit my job completely. The job that I had at the time they went through my narcolepsy journey with me.

[00:19:29] Cloud: They were actually a part of me discovering they. Got me the medical insurance. They pushed me towards getting the appointments. They gave me time off when I needed. They actually created blocks of time where I could go and nap if I needed to at work. They were incredible. But when I finally had to admit that I couldn't handle it anymore, the naps I could do, it was the brain fog.

[00:19:50] Cloud: I was messing up so much at work, and the mistakes were making me more anxious and making me more self-conscious. And it was a vicious cycle. And I recognized I needed [00:20:00] a life where I could experience more small wins, small successes, and rebuild my confidence. So my cousin said, come out for a break on the island.

[00:20:10] Cloud: Just take a time off and think for a little bit and feel and see where your next journey takes you. And two months out, there was a literal dream come true. Island life. I could go to sleep when I wanted, wake up, when I wanted, eat fresh, produce off the trees, go playing in the jungle. I was also dealing with a lot of physical stuff with my AS Ankylosing Spondylitis.

[00:20:33] Cloud: So it was easier on my inflammation, which was easier on my energy levels. And I just recognized that I, all around, I felt better out there and I had already slipped into a lifestyle that benefited me. So now I had to figure out how to live and work out there, make income of some sort, which I was already crocheting all the time.

[00:20:54] Cloud: I've crocheted, as of now I've crocheted for 24 years. And so by the time when I moved on the [00:21:00] island, it was like 14 years crocheting. And. I was able to sell my stuff at markets. It's really easy. There's popup markets all the time on the island. You could just pop up a table pretty much anywhere and sell your stuff.

[00:21:11] Cloud: So I sold my art for a long time and around the same year, Airbnb got started and I transitioned into household management and travel host. So my life was just making art and touring people and napping in between.

[00:21:26] Liz: What do you think you gained from that experience? 

[00:21:29] Cloud: I gained a strong foundation to be able of self-awareness that allowed me to. Create the habits and the timeline of things that I do and become aware of what I'm feeling and what I need to do to take care of myself. I definitely removed myself from society and stress to be able to do that.

[00:21:49] Cloud: Not everyone has that benefit, like people are trying to figure it out in the middle of living through the most. And so I definitely, I eliminated a lot of factors to [00:22:00] be able to create new habits that are now supporting me through real life, not just island life. 

Returning to the US and Adjusting

[00:22:06] Liz: And why did you decide to come back to the US? 

[00:22:10] Cloud: My father is getting older and he had a stroke. And I'm an only child of an only child, and so I definitely knew at some point. Time to come home and take care of my family. And another family member had passed. It was just, it was time. It was time to come home and be with my family and take all the tools that I had learned and rejoin society.

[00:22:30] Cloud: Think of, it's very different living here in the states. Financially. You have to have a real different situation. So I needed to, that was part of living on the island was easier for me because I didn't have to do the most to live the way that I needed to. And now I definitely have to figure out life, like bills and taxes and payments of things. And household.

[00:22:52] Liz: What was that initial transition like literally the first few days, the first couple of weeks? What was that like for you? 

[00:22:59] Cloud: [00:23:00] Frustrating. Really frustrating. I kept feeling a, even though I made the decision and I knew that it was a good one and one that I needed to do, I kept feeling a huge sense of loss. The loss that I, loss of the life that I had created for myself, that made things so easy for me. And I felt very anxious to discover how I was going to start to handle, like stresses and triggers and humans, people, jobs, time schedules, and being sleepy during all of that, and how it affects my moods and how people treat me because of my moods.

[00:23:34] kerly: It's a lot to navigate. 

[00:23:35] Cloud: Yeah. And it's a daily navigational route. It's not just like a little hurdle, like it's something we have to consider every single day. 

[00:23:44] Liz: Yeah. We never get a day off. What did that effect have on your narcolepsy symptoms coming back to San Diego? 

[00:23:52] Cloud: I felt foggier. I kept getting more confused, easier. I had to see doctors because I was [00:24:00] having like, what seemed like blank memory spot moments where I knew I was awake during that time. But I'm just, I'm missing moments of activity.

[00:24:09] Cloud: Very stressful. Added to the fact that there is so many cool things to do in San Diego that I get fomo very bad. No one's do everything. My friends are inviting me out. People are happy that I'm back. There's concerts all the time. I'm so tired and I wanna say yes to everything, but I have energy for nothing.

[00:24:27] kerly: Yeah that's tough. It would be almost better if you came back and it was boring , 

[00:24:31] Cloud: it's so fun here. San Diego is such a wonderful city.

[00:24:34] Liz: I feel like my number one tip is just don't go on Instagram because 

[00:24:38] Cloud: I can't watch what other people are doing at all. 

[00:24:40] kerly: Yeah. 

[00:24:41] Cloud: I am actually, I'm very active on Instagram. I love to post because it helps me remember things. Being able to watch my own story or look at my photos. It helps me remember stuff, but I do not look at other people's things and my friends sometimes get a little pissy about it. They get their feeling. You didn't see what I posted. I said I can't.

[00:24:59] Liz: [00:25:00] Yeah, that's the thing. I think Instagram is so good in lots of ways because you can connect with other people in the communities that you wanna connect with.

[00:25:08] Liz: But at the same time, for anyone that has a chronic condition, it's so painful to see your able bodied friends doing things all the time and just knowing that either they invited you and you couldn't go, or they didn't invite you, and then that you are like why didn't they invite me? And just that constant feeling of missing out. 

Starting the Instagram Journey

[00:25:25] Cloud: I actually started my Instagram journey during diagnosis because of my diagnosis. 

Discovering the Spoon Theory

[00:25:33] Cloud: So back when Instagram started, it was just like food picks and memes and when I got my diagnosis, I had heard about something called the spoon theory. Have you guys heard of it?

[00:25:44] Liz: Yeah.

[00:25:44] Cloud: For people with autoimmune conditions.

[00:25:46] Cloud: And it's totally relatable to sleep conditions as well. How we have to count our spoons and count our energy level and save them for the day and the tasks that we have ahead of us. 

Finding Inspiration Online

[00:25:56] Cloud: So when I discovered that online, I [00:26:00] specifically went searching for other young women with diagnosis similar to mine that were living in positive ways, not I saw a lot of people complaining about their condition and joining together in griping about their symptoms and how people weren't understanding them or supporting them.

[00:26:22] Cloud: And all of that was definitely true as well. But I needed to hear about the people who were. Successfully living with these conditions. And so I went searching for those types of people on Instagram. And when I found that I wanted to be a source of inspiration for others, so I started posting about my medical journey and what I was learning and how I was living my life and what I was doing. 

Living Successfully with Narcolepsy

[00:26:45] Liz: And what does that mean to you to be successfully living with the condition or narcolepsy? 

[00:26:50] Cloud: Happiness. If I could say it in one word, it would be happiness. 

Maintaining a Positive Mindset

[00:26:54] Cloud: there are so many small things that we could choose to be upset about [00:27:00] and focus on, but being able to find the little pockets of sunshine and happiness that get us through the darker moments is what life is about. 

[00:27:10] Liz: Yeah, definitely. And do you think it's possible to be to have that happiness alongside living with the condition?

[00:27:18] Cloud: Definitely, of course. And it's easier to do so when you look at things in little, like small snippets and pictures instead of the big picture. Look at the things you're grateful for, look at the things you're capable of.

[00:27:30] Liz: I like that outlook. I think it's so important to, like you say, look at the small things and be appreciative for those things because when you have a condition like this, it can be so hard . We just get so overwhelmed with the symptoms and trying to manage everything that we no longer notice the good stuff in amongst it all.

[00:27:49] Liz: And do you think you've always had that kind of mindset that has led you to, want to live the life that suits you best and look for happiness and [00:28:00] joy? Or is that something that you've cultivated as you've grown up or experienced this condition? 

[00:28:06] Cloud: I have always been like this because I've had to my mother suffered with severe depression, bipolar, schizophrenia, and I actually had lost her when I was younger in my early twenties.

[00:28:18] Cloud: So I was, I spent my life being a huge source of keeping her happy and on a track of looking at things in positive ways. And I also have a father who's a Vietnam veteran and very PTSD and anger focused. And so I recognized at a very young age that I could either be like my parents, either very sad and very angry, or be the change that I needed in my life and the change that I wanted around me. I had to be the type of person that I wanted to be around. 

[00:28:50] Liz: And how did you do that? That sounds amazing that you came from, that experience, having that around you when you were growing up, anger and sadness to [00:29:00] then being the change that you wanted to see. How did you do that?

[00:29:03] Cloud: I get asked that a lot and I can say I honestly have no idea how I did it, except that I saw that there was no other choice. I saw my mother be so sad end her life because of it and what that did to me and how that impacted other people, and I would never do that to somebody else. I had to be a source of happiness always. And if I wanted to be supported and surrounded by people like me with that mindset of happiness, I had to exert that energy like constantly. 

[00:29:35] Liz: Wow. 

[00:29:35] Cloud: I had to attract the energy that I wanted to be surrounded by. 

[00:29:39] Liz: Yeah. 

Managing Relationships and Energy

[00:29:39] Liz: Are you very. Specific about who you spend your time with then? In terms of the people around you?

[00:29:46] Cloud: Oh, yes. Oh yes. Very specific. My, group is very small. I don't really handle new people well. I'm good with new people in short exchanges, but the people that I want to see all of me [00:30:00] and understand is a very small group. I don't have the energy for that. 

[00:30:03] Liz: And is that partly because of having narcolepsy and people not understanding, or do you think you would have a small group around you regardless?

[00:30:14] Cloud: A hundred percent from having narcolepsy and people not understanding a hundred percent from a lifetime of people not responding and reacting to me in a way that benefited me, helped me, made me feel good. I don't trust people to react right around me with my conditions and symptoms. 

[00:30:32] Liz: The people around you, what have they shown you that has meant that you are, you've kept them in your life?

[00:30:38] Cloud: Patience, compassion, and unconditional love. And the ability to take a step back and not make it about themselves. If I am sleepy, if I back out of an engagement, if I miss something completely, if I respond to something rudely or inappropriately, the people in my life [00:31:00] not taking it personal and still treating me with love and compassion is life changing?

[00:31:05] kerly: Yeah. Yeah.

Understanding Mood and Narcolepsy

[00:31:06] kerly: You've talked about your mood as well as being a kind of symptom of narcolepsy. Can you tell us more about that and how you manage that? 

[00:31:17] Cloud: How I manage it, I stay away from people when I feel moody. I recognize that sometimes when I am sleepy and my brain is foggy, I lose the filter to not respond so quickly and shortly with people and I just want to respond, get it out of me.

[00:31:32] Cloud: And I don't think of how that makes people feel ' cause they don't understand why I'm responding that way or why I, my tone sounds that way. It's frustrating 'cause I'm too tired to navigate. I just want to express myself and not be judged for it. 

[00:31:46] kerly: , Instead of being rude to people, or not being people preface, but being so tired that you are rude people. And they have to apologize later on. Just remove yourself prior to when you feel that it's coming. It's getting to that point, [00:32:00] because sometimes it just amazes me that people can't see on your face that you already reach this point.

[00:32:05] Cloud: I'm gone, I'm exhausted. I'm not here. I'm not coherent. 

[00:32:08] kerly: These really stupid questions at this point in time you're lucky that you don't get attacked. Like seriously. Like why? Yeah. So now when I can that, and I see I noticed that the person obviously hasn't noticed that I've reached this point already. I'm just like, remove yourself. kerly you just remove yourself? 

[00:32:24] Cloud: I'm just, I'm very shocked at how many people don't read physical signs. Not even narcolepsy of other things oh, I don't like this conversation, or, I'm uncomfortable. People don't look at the face and read the signs or the body language and the nonverbal cues that are being obviously given and people just go on full force with what they're doing and how they're doing it, not aware of other people.

[00:32:48] Liz: I find it really hard with my partner sometimes because, or like the people that are close to me. So even like my mom my really close friends, if. I get really tired. Say I've had a long [00:33:00] day at work and I come home and I have zero energy and someone's trying to talk to me. It's so hard because I literally have I can't be nice 'cause I'm so tired.

[00:33:10] Liz: And my partner has even said to me before, my mom definitely has said this it's not hard to be nice. Like you can still be nice and it's it's so hard to be nice when you have no energy. Like when you are literally minus a hundred on what you have left. It's like you just wanna say it how it is and you actually, I feel like sometimes I cannot control how I'm saying it at all. Like I don't have the energy to do that. 

[00:33:33] Liz: Hundred percent one of my sisters, she likes to say to me, you have a choice. You can not be rude, but that's how it's not a choice, like spoken like someone without narcolepsy. Yeah. Yes. It's not easy. Not easy being sleepy people. For those patients, for those out there listening try to look in the person's face. If you have a friend or a family member that have narcolepsy, just try to look at their body language going forward this coming week or when it is, when you hear this podcast and [00:34:00] try to look out for the cue.

[00:34:02] Liz: You'll be surprised if you just pay a little more attention. You'll see them. 

[00:34:06] Liz: Yeah. The sleepy eyes or 

[00:34:08] Liz: Yeah. 

[00:34:08] Liz: The blank facial expression telling you, oh, 

[00:34:10] Cloud: facial muscles. The inability to smile and respond physically. How slower this responses come. 

[00:34:17] Liz: Yeah. I find as well that, I don't know if you guys get this, but say I'm in a social situation or I'm at work and I start getting tired or like brain foggy, I actually get more anxious as well, because I realize that I'm no longer reading the social situation very well.

[00:34:36] Liz: Okay. And that makes me more anxious, but not in a awake way. Just a like still sleepy, but also anxious way. Yeah. We got a lot to deal with. 

Building a Supportive Community

[00:34:44] Liz: So Cloud, have you built a community around you of other people with narcolepsy or is that something you're not so in touch with? 

[00:34:52] Cloud: I actually no. I have a lot of people who follow me on social media who could reach out to me with narcolepsy and I was [00:35:00] a a part of the board with project sleep for a little bit.

[00:35:03] Cloud: So I still am a little in touch with that community in my own personal life. Me going public with my journey has allowed some close friends to discover that they have sleep conditions as well. So they have, yeah. They don't talk to me about it too much and they admitted. Their diagnosis to me years after they got it.

[00:35:26] Cloud: I don't know why they're not comfortable talking to me so much about it yet, but I like knowing that. I like knowing that even in the moment that I'm not told somebody out there somewhere is being affected by me sharing my journey and what I'm dealing with and how I'm dealing with it. And it's even affecting people without narcolepsy because it's making other people become aware that they might have somebody in their life that are showing these symptoms, that they're not aware that they have a condition.

[00:35:51] Liz: Yeah. It's so important. 

[00:35:52] Cloud: There's so much power in sharing our stories and connecting like this, even though we might never be person. 

[00:35:59] Liz: I hope we'll get [00:36:00] invited to California. 

[00:36:01] Cloud: You're welcome. Anytime. 

New Job and Managing Symptoms

[00:36:02] Liz: So you've just started a new job recently. How is that going and how are you managing your symptoms alongside that? 

[00:36:11] Cloud: It's going marvelous because I planned perfectly.

[00:36:14] Cloud: Because I already, with my sleep and wake cycles, I wake up every morning at four o'clock in the morning. I cannot fall back asleep and I get sleepy again around 10 or 11. So I chose a very specific profession. I am a caregiver for adults with developmental disabilities. I have autism as well, so I'm now working with adults with autism down syndrome, dementia and Alzheimer's. And my shift hours are 6:00 AM to 10:00 AM four hours. That's all I can handle. I get sleepy right around the time I'm supposed to go home, and then I get to go home and nap. 

[00:36:51] kerly: Amazing. Oh 

[00:36:51] kerly: wow.

[00:36:52] kerly: And are you still not taking medication and just managing it in other ways? 

[00:36:56] Cloud: Correct. Still not taking medication no. I'm just, I am [00:37:00] really big advocate on being self-aware and planning my life around what I know I can and can't handle. And I even went into that with the job. I went into the interview telling them a real specific set of hours and they gave me everything I wanted. 

[00:37:14] Liz: Amazing. So you really advocated for yourself there. 

[00:37:17] Cloud: Because I knew exactly what I could and couldn't handle. I knew what I wanted and what. What was too many hours, what would exhaust me, what time of the day I wouldn't be able to function

[00:37:27] kerly: it's so important to listen to your body and you have that down, like to a tea. 

[00:37:31] Cloud: Yeah. I do That island life and the time away gave me that to literally just look at, listen to and learn about myself completely. 

[00:37:40] kerly: You mentioned also being off medication. I think that also helps you to listen to me. Two years ago, taken off my stimulants that I had been on since I was 18 I'm, 41 and was two years not being on stimulants you really need to listen to what he's saying. You need to nap now, Kerly nap, or else you're gonna have a very bad Cataplexy attack. 

[00:37:59] Cloud: [00:38:00] Yep. And that's part of why I said no. When they offered me medications, when I asked the doctor, why can't I just take a nap? And he was shocked at my question, I really just thought, I wanna, now that I know what it is, I wanna feel it with an understanding and watch what my body's gonna do naturally without medications, trying to alter what's gonna happen so that I can figure out what I need to do.

[00:38:23] Cloud: And then maybe in the future I'm not against it. In the future, I might try something. But so far I've been able to manage life in this way. 

Navigating Life with Autism and Narcolepsy

[00:38:32] Liz: You also mentioned that you have autism as well,

[00:38:34] Cloud: uhhuh. 

[00:38:35] kerly: And I think I've read somewhere, and correct me if this is wrong, that sometimes autistic people are more sensitive to medications or it affects them in a different way.

[00:38:45] Cloud: Yes. Yeah. I seem to have lots of reverse effects. If I'm prescribed something, I seem to have an opposite reaction or response to it. So I get very scared when they prescribe me things saying, this is how it's going to make you feel. And [00:39:00] I'm very sensitive. I'm very different. 

[00:39:02] Liz: Yeah. 

[00:39:02] Cloud: I don't wanna experiment with drugs in my body.

[00:39:05] Liz: How does your autism and narcolepsy interact with each other, if at all? 

[00:39:11] Cloud: They battle with each other. They definitely battle with each other. I get very fixated on things and it's hard sometimes to do what I know I need to do to take care of the narcolepsy or the symptoms that could come if I don't take care of it.

[00:39:26] Cloud: I'm still learning and navigating it, so it's hard to explain, but I'm recognizing now why I had so many struggles when I was younger. 

[00:39:35] Liz: And so was this a later diagnosis of autism? 

[00:39:38] Cloud: Yeah. Very recent. It was within the past year and a half. 

[00:39:42] Liz: Wow. 

[00:39:42] Cloud: And it came about because I experienced a head injury and. It was doing a lot of things to my memory and I was seeing a bunch of different doctors for a bunch of different things, and in the midst of that, a therapist as well and my OCD tendencies were getting stronger and I couldn't resist my impulses.

[00:39:59] Cloud: And I, some [00:40:00] new information came about that made a lot more sense to my mannerisms, which is part of why I took this job as a caregiver because I am somewhere in between the people that I'm helping take care of and the people that I'm working with. I have a really thing perspective and understanding.

[00:40:16] kerly: Your understanding of their of them can be different because you also have something. So you'll relate to them differently? 

[00:40:24] Cloud: I can relate to them very well. I understand them very well. I'm going through very similar things, so I know how to respond in perfect ways that make me feel safe and comfortable. I wish I had someone doing that for me years ago. Yeah, 

[00:40:37] kerly: yeah.

[00:40:37] Cloud: Yeah. Exactly. That's what makes me determined to be the best caregiver I can be. 

[00:40:42] Liz: I work with a lot of people that are autistic. I'm a speech and language therapist. And so yeah, it is it's really unfortunate that obviously for girls. Autism can look really different than what society expects. So a lot of girls, women aren't diagnosed until much [00:41:00] older. And I'm probably, I feel like I'm mansplaining, when, like I'm explaining this to you, but I guess I'm trying to explain it to the listeners more.

[00:41:07] Cloud: But yeah. Yeah I look very normal. My own family. When I first told my father he was in disbelief, he said, absolutely not. No way. I'm highly functioning. I know how to behave. I know how to hide certain things. 

[00:41:21] Liz: But that must make you extra tired, right? Because you are like masking a lot. Yeah. Is that a term that you would use?

[00:41:27] Cloud: Yes, definitely masking. I think of it as I am being a genuine person, but I think of situations as like playing a role in the moment. Yeah. To get through the moment, this is who I have to be and what I have to portray to get through this moment. 

[00:41:40] Liz: And you mentioned a bit about how, and I think this is what you meant, so correct me if I'm wrong, but like having to be really flexible in terms of supporting your narcolepsy, but then maybe also not loving having to do that because of being autistic as well.

[00:41:55] Cloud: Yeah. I wanna hop around and make art and do things and be [00:42:00] weird and alone, but I also wanna be social, but I don't have the energy. 

[00:42:03] Liz: Yeah. 

[00:42:04] Cloud: And I have to think of all the steps needed throughout a day to get me through my day, not just what I want in the moment. 

[00:42:11] Liz: Yeah. And what advice would you give to other people that are autistic but also trying to manage narcolepsy at the same time?

[00:42:18] Cloud: Lists if that lists help my brain a lot. They help me set up my day and intentions and they help keep me focused so I don't get drained and they help keep me on track. And a list is like having a helpful little person there to remind you, Hey, you need to do this. Hey, you haven't finished that yet.

[00:42:39] Liz: Yeah, definitely. 

[00:42:40] Cloud: I don't know. It's the au the autism part. It's , it's been difficult to advocate for myself in that way because people have seen me as n normal neurotypical for so long. People don't understand what is going on behind my brain, like how I'm parroting words, I'm repeating [00:43:00] things like an inner Tourette's monologue. I'm getting hyper fixated on things in my head, but I'm acting very normal to people. It's hard to balance. 

[00:43:09] Liz: And how did you feel when you were diagnosed with autism?

[00:43:13] Cloud: I'm still coming around to that one. I don't know. I still try to hide it. I don't want to be seen as weird. But then I've also created this weird artistic lifestyle where it's very acceptable for me to be weird. People know that I'm already a little weird,

[00:43:27] Liz: is that you've let your authentic self leak out in small ways. 

[00:43:30] Cloud: I'm recognizing now how much I've been utilizing my crocheting to hide my stemming and my symptoms and my oddities. And now that I'm not crocheting as much, it's coming out a lot more. So I'm finding myself wanting to withdraw from people right now while I readjust and figure it out again. 

[00:43:49] Liz: Yeah. And for our listeners who don't know what stemming is, could you explain that? 

[00:43:52] Cloud: Stimming stimulation like we need something constantly moving and activating our [00:44:00] fingers or a part of our body or facial muscles that help me feel calm and relaxed.

[00:44:05] Liz: Yeah, nice. And you've created some beautiful artwork out of it as well with this 

[00:44:10] Cloud: I'll say, yeah. Grandma gave me a gift. I was stuck on repetitive counting and reorganizing things and touching and getting fixated on things. And by learning to crochet, it's repetitive counting and stitch work and it's perfect. I love it. Now I can just get obsessed with what I'm working on. Aw. 

[00:44:27] kerly: It's always funny when. People with narcolepsy have other things going on, like whether it's a difference or a condition 'cause it always feels oh, we've got narcolepsy. Isn't that enough? And then to have something else in the mix as well. It just, it doesn't feel quite right. 

[00:44:42] Cloud: And the narcolepsy symptoms are very similar to so many things that people with immune conditions deal with. That I can see why it's why some people have had a long diagnosis journey. ' cause it's really hard to pinpoint down with all the available [00:45:00] symptoms that are going on with your brain and your body. 

[00:45:02] Liz: Yeah, definitely. 

Reflecting on Life Choices

[00:45:03] Liz: Okay, so cloud, if you could press a red button and get rid of narcolepsy and never have experienced it, would you press the button and why? 

[00:45:12] Cloud: No, not at all. I don't even have to hesitate. Every hurdle and struggle has brought me to where I am right now, and every part of the journey has, even through the struggles, every part of the journey has gotten easier and easier because I'm learning more and more the way that I am and I definitely wouldn't be the same person and on the same journey and path without it, without being so sleepy that I was forced to create a different existence. No way I would give it up.

[00:45:39] kerly: Is there time for me to ask one more question, Kerly? Yeah, go ahead. Okay, because I'm intrigued. So I'm assuming that you are child free? 

[00:45:46] Cloud: Yes. 

[00:45:47] Liz: And is that I always am really inspired by people who are child free because I think that might be the lifestyle for me. So I'm just wondering, is that something that, you decided because of narcolepsy or is just something that [00:46:00] kind of cool to you?

[00:46:00] Cloud: It wasn't necessarily because of the narcolepsy alone, but it was because of all my conditions combined and what I experienced with my parents and family growing up. I had no desire to. Bring a child into a world that I could barely control myself. And I recognize that I'm not the type of person that would have been able to balance what I needed to do for myself and give another life a completely like awesome and perfect existence as well.

[00:46:34] Cloud: I recognize that, and I didn't wanna put that on a child. So I have no desire to have children, but I love them. That's why I work with, I worked with children with autism and now I work with adults that are like children as well. I like them in my life. I don't want my own because I'm too tired. And I have no idea how mothers do it, like kudos to them, even mothers without sleeping conditions. 

[00:46:56] kerly: Yeah, it's not easy by the looks of it. 

[00:46:59] Cloud: That's a huge [00:47:00] responsibility. And you have to be responsible for your own life and that of another, 

[00:47:04] Liz: yeah. 

[00:47:05] Cloud: So much. 

[00:47:06] Liz: Yeah. Thank you so much for sharing your story with us today. I, you're just such an inspirational person. You've done so many cool things. 

[00:47:13] Cloud: Yes. And thank you for having me. It was a pleasure chatting with you guys today. 

[00:47:17] kerly: Yeah, it was a pleasure having you. We usually end saying happy, napping everyone. So we'll do it after 3, 1, 2, 3. 

[00:47:26] kerly: Happy, napping everyone.

[00:47:30] Speaker 2: 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 shelf. Subscribing to our Patreon will allow you to have access to narcolepsy, navigators, discord server, where you can chat with other navigators, find support, and ask questions.

[00:47:59] Speaker 2: [00:48:00] To be featured in future bonus episodes. Higher tier supporters can also receive Patron merch, or if a monthly subscription is not in your budget, you can check out even more merch on our website, www naps four life.com. This week we would like to have a shout out to our very first patron supporter, Katie. Thank you very much for your support.

[00:48:32] Speaker 3: Narcolepsy Navigators is produced by a team of volunteers working for the Naps for Life, CIC, which is a nonprofit 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 [00:49:00] www.napsforlife.com.

[00:49:02] Speaker 3: If you or someone you know. Has a sleep disorder and would like to share your story on narcolepsy navigators. Please email us at narcolepsy navigators@gmail.com. You can also support us by donating at the websites. Happy napping everyone.