S4E8:Motherhood, Pregnancy & Narcolepsy with Ashley Blankenship

Can you have a successful pregnancy and thrive as a parent while living with Narcolepsy? This week on Narcolepsy Navigators, Kerly and Liz sit down with Ashley from North Carolina to answer this very question. Diagnosed in 2019 after over a decade of symptoms, Ashley shares her incredible journey through pregnancy and the first 20 months of motherhood. She opens up about the surprising relief from symptoms she experienced while pregnant, the difficult decision to come off life-changing medication, and the reality of navigating the "fourth trimester" with a chronic illness. From the importance of a supportive partner to managing postpartum anxiety and the chaos of a toddler, this episode is a must-listen for anyone in the Narcolepsy community considering parenthood. Tune in for an honest, hopeful, and inspiring conversation about building the family you want, even when your body has other plans.

Key Topics Discussed:

• Ashley's journey to a Narcolepsy Type 1 diagnosis in 2019.
• The difficult decision to stop medication while trying to conceive and during pregnancy.
• The surprising improvement of Narcolepsy symptoms during pregnancy.
• The reality of labor, delivery, and the immediate postpartum period with a sleep disorder.
• The difference between "normal" sleep deprivation and Narcolepsy fatigue.
• Strategies for managing a toddler, a career, and a chronic condition.
• The vital role of a supportive partner and a "village."
• Navigating postpartum anxiety and finding tools for mental health.
• Advice for anyone with Narcolepsy who is considering parenthood.

Transcript

Ashley - Motherhood & Pregnancy 14_11_24
[00:00:00] kerly: Hello, welcome. You're listening to season four of Narcolepsy Navigators, brought to you by NapsForLife 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 NapsForLife, CIC, and welcome to our stories.
Welcome and Topic Intro
[00:00:42] kerly: Hi everyone. Welcome to Narcolepsy Navigators. I'm Kerly, your host. I have Narcolepsy type one,
[00:00:48] Liz: and I'm Liz, your co-host. And I also have Narcolepsy with cataplexy.
[00:00:52] kerly: And today we have Ashley from North Carolina.
[00:00:56] kerly: And the topic for today is pregnancy and [00:01:00] motherhood. And welcome to her story. 
[00:01:01] Ashley: Hi guys. Nice to meet you. I'm Ashley. I have Narcolepsy, type one as well. 
[00:01:06] Liz: Thanks for joining us. 
Weekly Catch Up and Travel Prep
[00:01:07] Liz: So how was your week, Kerly? 
[00:01:11] kerly: The week has gone fast, I must say yeah. I dunno if it's, 'cause it's coming up to end of the year or it's coming up close to the time for me to go, on holiday, but it's definitely gone fast 
[00:01:21] Liz: because you are going to, is it Kenya for a month? 
[00:01:24] kerly: Yeah, I'm going to Kenya for a month, so I think maybe my body's just like ready for the holiday now, it definitely went fast and then I had an exam to prepare for, which I did on Wednesday, which I failed so I'll have to retake it. Colour theory is very difficult. You can tell the reason why colour stylists get paid lots of money, to compensate for the theory they had to learn in school. 
[00:01:48] Liz: Yeah, I've heard that's really hard. It's very mathematical.
[00:01:51] kerly: But I think also trying to get a doctor's appointments in trying to finish off, like preparing. 'cause as narcoleptic, if you have to travel, you have to [00:02:00] collect all your medication. You can't leave these things last minute. So you have to do it before and you'll get nice surprises from the chemists and stuff like that, saying that they don't have what you need. So it is best to do it ahead. Cause I went in and they gave me two bottles when they should have gave me five. They're supposed to give me three months supply, so they're supposed to give me,
[00:02:18] Liz: l it's about six,
[00:02:20] kerly: , They're supposed to gimme seven bottles. And they gave me two
[00:02:22] Liz: no.
[00:02:22] kerly: And then they said, oh, we're rationing. We're only giving it. Two a bottle to each person. I just looked at her, I just laughed because I'm just like, she's funny. So I said to her, okay, I'm going home now, but I'll be back in two weeks and you need to find me the rest of the bottles. This is a ration business.
[00:02:38] Liz: You can't be going back like two bottles of Xyrem would only last. What about six weeks maximum? 
[00:02:44] kerly: Yeah. 
[00:02:45] Liz: So it's quite a lot to have to go back, travel all the way into Central London every six weeks.
[00:02:50] kerly: Yeah.
[00:02:50] Ashley: Do you have any, I know when I traveled for work, sometimes I would go to countries where there were restrictions and I had to fill out paperwork ahead of time. Did you have to do any of that? 
[00:02:58] kerly: Luckily not for Kenya. We don't. [00:03:00] The doctor just writes a letter. That's enough. Thank God.
Holiday Plans and Winter Blues
[00:03:03] Liz: Ashley, how was your week? 
[00:03:05] Ashley: My week was good, I used to never be one of those people that decorated early for the holidays, but since I've had a child, it's become much more fun to experience all of that. So we put up some holiday decorations and we went to visit, there's this huge house on this property here called the Biltmore Estate. So it's basically like a mansion almost. And they do tours of the property and they do a big decorative Christmas theme every year for the whole house. So we went and we walked through that and got some dinner and it was a good little weekend. 
[00:03:34] Liz: That's really sweet. 
[00:03:35] kerly: That sounds nice.
[00:03:36] Ashley: And then other than that, just, it's pretty busy at work at the end of the year, so I'm doing my normal thing during the week.
[00:03:42] Liz: And what do you do for a job? 
[00:03:44] Ashley: So I'm the director of customer success for a software company.
[00:03:47] Liz: Sounds fancy. A director. I like it. 
[00:03:50] Ashley: Yeah. I don't know the title doesn't mean that much, and what about you, Liz? How was your week?
[00:03:54] Liz: My week was, it was all right actually. I've been quite busy recently and [00:04:00] also I've just had a lot going on in general. I think the Winter Blues finally hit me this week because I made the mistake of Googling on chat GPT the next time the UK will see sunlight after 5:00 PM so by the time I leave work and it's March, I couldn't believe it. I know this happens every year, but it still shocks me each time that I'm not gonna see daylight after 5:00 PM for four months.
[00:04:28] Ashley: It's hard. And then they say that the time change is actually better for sleep in the long run, but I just can't get myself to agree with that.
[00:04:36] kerly: Yeah I don't agree with that either. No. Every time it changes, then you messed up for three weeks. 
[00:04:40] Liz: Yeah, 
[00:04:41] kerly: so I dunno how it's better. 
[00:04:42] Liz: So yeah, I'm not loving that and I just keep making myself little lists of okay, ways I can get through winter and on my list is like doing my painting, reading, doing workouts from home, just trying to give myself little boosts of endorphins here and there to get me [00:05:00] through the dark times.
Meet Ashley and Diagnosis Story
[00:05:01] kerly: Ashley, can you introduce yourself, tell everyone your name, your age, if you feel comfortable, the state you're residing in, and what year you were diagnosed. 
[00:05:11] Ashley: Sure. Yeah. So I'm Ashley Blankenship. I am. turning 35 here in just a couple of months. I live in North Carolina, just outside the Asheville area in the United States, and I was diagnosed with Narcolepsy back in 2019, 
[00:05:27] Liz: Not long ago.
[00:05:27] Ashley: Yeah, it's really only been about five years. But I was symptomatic probably well over a decade before I actually got a diagnosis. So as you guys know, it's a long journey for most of us.
[00:05:36] Liz: And what were the first symptoms that you recognized? 
[00:05:40] Ashley: So the first symptoms that I really noticed would've been back when I was in college trying to study and I just, felt like I wasn't able to retain information very well. I was always feeling tired and fatigued. And I had felt a little bit of that, but I think going into that more stressful environment where I was really pushing for an aggressive, major in [00:06:00] chemistry and having to do a lot more studying, just really brought out some of those symptoms. And that was the first time I realized that I was different from everybody else as far as how much I could actually comprehend and keep in my head and, pay attention for studying for big exams. 
[00:06:13] Liz: Wow. That must have been a very intense degree as well. 
[00:06:16] Ashley: Yes. A lot of tough classes, math and science
[00:06:19] Liz: gosh.
[00:06:19] Ashley: Certainly brought that out, I think. 
[00:06:21] Liz: And how did you feel when you were finally diagnosed? 
[00:06:24] Ashley: At first I didn't believe it because had all the stereotypical thoughts about Narcolepsy that many people do, right?
[00:06:30] Ashley: I thought that to have Narcolepsy, you had to have these really dramatic sleep attacks where you were like eating dinner one second and then face down in your soup the next. And so when the doctor told me. I almost was like skeptical. I was like, are you sure? Are you sure it's not something else?
[00:06:46] Ashley: But once I actually investigated and understood how the symptoms really presents less the Hollywood version and more the real life version, it made a lot more sense to me. 
[00:06:54] kerly: Yeah. That's why it's so important that they represent us correctly' cause then you wouldn't have thought, [00:07:00] oh no, he's making it up. 
[00:07:01] Ashley: Yeah, absolutely. 
Daily Symptoms and Meds
[00:07:02] Liz: And can you share what your Narcolepsy looks like day to day and whether you are taking medication or what kind of strategies you have in place to manage it?
[00:07:11] Ashley: So I would say that mine, where it's the most difficult for me is more of a like cognitive type symptoms. So brain fog memory issues, feeling like I'm just not focused or retaining information. Obviously feeling the daytime sleepiness, which, I now understand that's what that is. And that contributes to all of those things.
[00:07:31] Ashley: So that's the biggest, I would say, like challenge or hurdle that I face on a daily basis. I am on medication and I am not on the most consistent dosing of medication because I still have a really young child and I'm on a sleep promoting medication that doesn't allow me to wake up for him on the nights that I take it.
[00:07:50] Ashley: So I take that periodically and I'm working with my doctor to go on a daytime medication to help support me in the meantime. And then I also try to use like naps as well to manage [00:08:00] some of my symptoms when I have time. 
[00:08:01] kerly: Before you had your son, What was your regime then?
[00:08:04] Ashley: Yeah, so I was on one of the nighttime Oxybate treatments that was working really well. I took it very consistently. And really, for, gosh, like the end of 2019 when I got on it until I got pregnant with my son, it was great. I would have to take an occasional nap, but my symptoms were really well managed and so it was a shock to the system to have to let go of all that and go back to, my symptomatic lifestyle, certainly when I had him. 
Pregnancy Without Medication
[00:08:29] Liz: I was gonna say, did you have to come off medication even when you were trying to get pregnant as well? 
[00:08:35] Ashley: I talked to my doctors and they felt like it was okay to stay on it until I got a positive test.
[00:08:39] Ashley: And even then, they were willing to let me. Stay on it to some capacity if I really needed to, but we decided to kind of trial going off the medications and see how it went. I was really super fortunate that I was one of those people where my symptoms improved during pregnancy, which my doctor said isn't uncommon.
[00:08:57] Ashley: That happens for some women. And so [00:09:00] I didn't. Necessarily have to have medication. I did use like safe amounts of caffeine. We talked a little bit about what it would look like to reintroduce it if I needed to. But I would say I didn't start experiencing really challenging symptoms again until like maybe six weeks postpartum when they really came back.
[00:09:16] Liz: That's so interesting. 
[00:09:16] kerly: You had a nice pregnancy. 
[00:09:18] Ashley: Yeah. I was sick the whole time, like I couldn't eat anything but Narcolepsy symptoms were great. Weird trade off,
[00:09:23] Liz: yeah, it's like a weird which would you rather? 
[00:09:25] Ashley: Yeah. 
[00:09:25] Liz: And so do they know why that happens during pregnancy?
[00:09:29] Ashley: I think it's all just theory because right now there's not clear cut mechanisms behind the cause of Narcolepsy. Like we know some about it, and I know that current research suggests that type one can be autoimmune potentially. But the way that pregnancy in your immune system works is pretty complicated. And then the hormones that change I don't think they know exactly what makes that difference exactly. For most women. 
[00:09:51] kerly: When they finally figure that out, that should be bottled. But I bet it's something that only the body can produce and is not able to be mimicked and [00:10:00] stuff, but it's nice that some people are able to have that. Unfortunately you weren't well physically, but were you surprised to not feel tired, not have your Narcolepsy symptoms. 
[00:10:09] Ashley: I was, and at times I gaslit myself in questions like, do I really have Narcolepsy? Did I just imagine, because I felt, I didn't feel like amazing, but I felt pretty good given that I was pregnant and had Narcolepsy and wasn't on medication. And yeah, that, it was funny because I was just like second guessing a little bit, and then after I delivered, came back, I was like, oh, yeah
[00:10:28] Liz: I gas light myself sometimes where I'm like, do I actually have Narcolepsy or do I just enjoy naps and then I miss a nap and I'm like, oh no, I definitely have Narcolepsy. So did you manage to work whilst you were pregnant and not taking as much medication because your symptoms were more under control? 
[00:10:44] Ashley: Yes, I was able to work. I did use some naps occasionally, and then, like I said, the safe amounts of caffeine as my pregnancy progressed and I was feeling a little bit more and more tired during the day. But I was able to make it to the end without medication. Although there were a couple times [00:11:00] where I was talking to my doctor about maybe implementing something. We never had to.
 
[00:11:05] Liz: Yeah.
Doctor Support and Parenthood Fears
[00:11:06] Liz: Did you feel supported by your doctor during that time? Because I imagine it could be quite scary to be working out whether you can take medication or not. 'cause you wanna really protect the life that's growing in you. 
[00:11:17] Ashley: Yeah, I felt really lucky that I had the doctor that I did. First off she was a mom herself and had just gone through pregnancy and she's a neurologist, so she very well understood kind of the symptoms and what you go through and what it feels like.
[00:11:30] Ashley: And then she was also just really well versed in all the medications and side effects and how safe they were for women who were pregnant. Which in contrast, my ob who's like the pregnancy doctor was kinda like, I don't know, I've never heard of these medications. Talk to your other doctors about it, so it was this weird, like ping pong and luckily my neurologist was super comfortable with it, but I imagine that, if you had somebody who wasn't very well versed in that area, you would have a totally different response. So that was very fortunate for me to have [00:12:00] that medical provider who could really advocate for me and be on my side throughout the process. 
[00:12:04] Liz: So when you were first diagnosed with Narcolepsy, did you ever question your ability to manage as a parent? 
[00:12:12] Ashley: Yes. I would say that up until I found a medication that worked for me, I really didn't think I wanted to have children. And that was before I even knew what it was that was causing the symptoms. I just felt like I didn't have enough energy to work and also be a mother. And it was really finding that effective treatment that gave me the confidence to say, yeah, there's a way this can work and I can actually have a child, and it became something that I wanted to pursue.
[00:12:37] Liz: Yeah, I think a lot of people with Narcolepsy and any chronic condition feel that, 'cause I definitely feel that, I dunno about you, Kerly, but after work sometimes I come home and I'm so dead and I just think, God, how would I look after another human being? I can barely get myself off the sofa right now, or even cook myself dinner or shower and that level of [00:13:00] tiredness.
[00:13:00] kerly: Yeah, a hundred percent. Like I have two cats, like I had one and just recently got a kitten and she's got so much oh my god, energy and I've forgotten what that was like. And quickly you start to remember four o'clock in the morning she starts massaging me about waking up and at four o'clock in the morning, you just took your second dose of Xyrem at three and you actually do want to keep sleeping like. Don't want a massage and she's a cat, worst case scenario, I could get up, lift her out of bed, put her in another room and lock my bedroom door. You wouldn't be able to do that with a human being
[00:13:31] Liz: you could, but you might get into trouble with the yeah, 
[00:13:34] kerly: yeah exactly. 
[00:13:34] Ashley: Yeah, so 
[00:13:35] kerly: I'm a good cat mom, but in order for me to have a child, especially at my age now at 41, I'd need to have a really strong support system, I would need to be married and need to know that the person is there locked in and have a really good support system there to attempt something like that.
[00:13:50] Ashley: I was gonna say, I naively in my head thought okay, I'll have to stay off medication for a couple months, but then I can immediately go back on and it'll all be back to normal and I'll feel [00:14:00] great. And that didn't happen. 20 months in now, and I'm still not regularly on medication you can plan and think it's gonna be great, and then you may find yourself in a different situation too. So just being able to be flexible and prepare for that too is always a good thing. 
[00:14:13] kerly: Is that because you are breastfeeding ? 
[00:14:15] Ashley: No, I actually formula fed so that I could go back on medication. And I did go on something. I went on awake promoting medication that just wasn't super effective for me. But long term I needed to get back on the nighttime, the Oxybate. Yeah. Because that's really the thing that works well for me. And even a couple nights a week on it is better than just, 
[00:14:33] kerly: than nothing.
[00:14:34] Ashley: Yeah.
[00:14:34] kerly: That's interesting. It's funny how that works, that a couple nights on it, even if you're not on it, the whole seven nights still is beneficial than nothing at all. That's very interesting.
[00:14:44] Ashley: I was just gonna say, it certainly helps me at least, I don't know about everybody, but 
Labor and Early Postpartum
[00:14:48] Liz: what was it like actually going through like the labor process as someone with Narcolepsy as well. You hear even of mothers who don't have Narcolepsy getting to the [00:15:00] point where their body or they're just too fatigued to get through that process. So what was it like for you? 
[00:15:05] Ashley: Yeah, so I had to be induced because of some health issues that my son had at the end of my pregnancy. So with that, they give you medication to induce labor. And then I went through a reasonably quick labor from there and I did opt to get an epidural to give myself some relief and rest towards the end of it. I think the hardest part for me was just, the night before I was so excited about him coming there, so I was like awake all night, anticipating the induction. And then the labor went for I think it was like 16 hours. So then I didn't sleep at all that night. And then I have this brand new baby, right? And I'm like terrified that something's gonna happen to him. So I'm like awake trying to watch him. So that was the hardest part, was like that initial upfront sleep deprivation that happened as a result of just like the whole process. And I think everybody goes through that regardless of whether or not you had Narcolepsy. But I found it particularly challenging. 
[00:15:55] Liz: Do you think adrenaline got you through? 
[00:15:56] Ashley: Yeah, I do think that helped a lot. And then having my husband [00:16:00] there to relieve me and give me naps so that I knew that somebody was watching the baby and he was being taken care of.
[00:16:05] Liz: It's so important to have a support system in place, like Kerly was saying. And have you found that your partner has been extra supportive with the kind of challenges that your Narcolepsy brings up in pregnancy and also motherhood as well? 
[00:16:20] Ashley: Yeah, definitely. And that's one of the reasons that I'm able to go back on the nighttime medication is that he deals with my son if he happens to wake up, if he's sick, whatever, on those nights.
[00:16:31] Ashley: And then the nights that I don't take it, I help out as well, so that he's not, always sleep deprived either. But yeah, that's certainly been a key part of it. And then having somebody who can take the baby, let me take a nap when I need to, those types of things has been really helpful as well. And he still does that
[00:16:45] kerly: that's really good. 
Sleep Deprivation vs Narcolepsy
[00:16:46] kerly: So you know that because you already had an Narcolepsy, your body already knew what it was like to have sleep deprivation. So when normal people feel tired and then we feel tired when we have Narcolepsy, it's two different types of [00:17:00] feelings.
[00:17:00] kerly: So even sometimes when we might feel. I can tell the difference between Narcolepsy tired and like a normal tired because you've done too many things in the day than actual Narcolepsy tired. You understand? Yeah. So with the pregnancy, because you had that previous experience of sleep deprivation, were you able to tell the difference between sleep deprivation from motherhood than Narcolepsy, sleep deprivation. 
[00:17:25] Ashley: Yeah, I would say there is a difference especially because I had that kind of six week period where I didn't feel too bad after giving birth. Like I, yes, I was sleep deprived, but my Narcolepsy symptoms hadn't come back full force yet. So I would say I definitely had a different experience for those six weeks as opposed to once my hormones shifted and things changed and my symptoms came back.
[00:17:46] Ashley: And I think the main difference there was like. I felt tired, but my cognition was still there. Like I, I didn't feel like I was losing my mind. And so that's the thing that I usually notice first is just like the focus, the [00:18:00] memory, those types of things. I did give my husband a hard time because he was like, this is the first time he is ever experienced any kind of sleep deprivation.
[00:18:07] Ashley: And so he was like, this is the worst thing ever. Like what? I don't even know how to function. But yeah, for me I to compare it to almost like jet lag for people that don't have it because it's like jet lag is so disorienting and you really just feel like really messed up on top of being really sleepy and tired. And so that's been more to me like what it feels like when I have Narcolepsy symptoms. 
[00:18:27] kerly: Yeah, I think that's a good explanation. I could only give it now as one since I went to Australia in the summer. Like I thought I experienced jet lag in the past, but I don't think I really had it was nothing like what I experienced going to Australia.
[00:18:41] kerly: Like even when I went to New Zealand, it wasn't like that. This was something else, like I felt like my Narcolepsy symptoms had reverted to. How it was before I was diagnosed. I was like, what is happening? And then when I was Googling jet lag and it was saying, yes, it can feel like a sleep disorder. And I was like, oh, this is really bad.
[00:18:59] Ashley: Yeah.
[00:18:59] Liz: Do you [00:19:00] think your sleep deprivation experience from Narcolepsy meant that you were more prepared for the sleep deprivation that came with being a mom?
[00:19:09] Ashley: I do think so. I joked that I had been like training for this my whole life. But I think it gave me reasonable expectations of what it feels like to be sleep deprived.
[00:19:18] Ashley: And then, I used to wake up a lot during the night anyway as a part of my Narcolepsy symptoms. So it actually felt rather natural to wake up with my baby as opposed to, somebody who's used to sleeping that eight to 10 hours and feeling good. 
[00:19:30] Liz: It's funny when I go to see my friends who have a new baby and it sounds like they bought one, a newborn and. Anytime. They're like, yeah, we're really tired. She's I know that I can't complain about this to you, Liz. I know that, sleep deprivation like no one else. And I'm like, it's okay. You're still allowed to complain. Now you can relate to my experience.
 
Life With a Toddler
[00:19:52] kerly: how old's your son now? 
[00:19:53] Ashley: He is almost 20 months now. 
[00:19:55] kerly: So now that he's like walking and he's probably pulling on things [00:20:00] and very active now do you feel a difference than when he was a baby in how much energy it takes?
[00:20:06] Ashley: Yeah, I'll say this is definitely more challenging. than when he was like little and you could just put him down. The positive is that he usually sleeps a lot better at night, so longer stretches, he wakes up a lot less unless he's teething or sick or something. But the downside to that is that he is on the go constantly throughout the day. So you don't get to sit and watch TV and chill and relaxed. You're always like going after him making sure he is okay, making sure he is not getting into something. So that definitely does require a lot more just get up and go energy. 
[00:20:33] kerly: You don't need a gym.
Grace Over Perfection
[00:20:34] Liz: I've been really excited to have this conversation actually because. I just think motherhood sounds, or even just parenthood for anyone that has Narcolepsy it's such a unknown. If you've never been there and you just think, gosh, I don't know whether this is possible. Is there any kind of strategies that you have found helpful day to day for managing your symptoms, but also being a parent at the same time? 
[00:20:59] Ashley: I [00:21:00] think the biggest thing that I would say is just like giving yourself grace and knowing that you may not show up at a hundred percent every day and that's okay.
[00:21:08] Ashley: And as long as you're doing your best, that's, what your kid's gonna remember, right? Is that you were doing your best as a mother. And so that's been important for me. Like I feel like in the past I've turned it towards like these perfectionistic ideals, but when it comes to being a mom and doing anything else, whether you have a chronic illness or not, you really have to balance everything.
[00:21:27] Ashley: And so you're just not gonna be able to show up a hundred percent everywhere you go. And that's okay. And you just have to be able to say this is a bad day. It's okay. Like tomorrow will be better. 
[00:21:35] Liz: Yeah.
Explaining Narcolepsy To Kids
[00:21:36] kerly: Do you think your son knows that you are different in any way? 
[00:21:40] Ashley: Probably not yet because he hasn't had that much experience to other caretakers or other adults? He definitely will get annoyed if I'm trying to nap and he wants to play. Oh. I think that's like all kids, right? If their parents sit down, they're like, Hey, wait a minute, let's go play. So I think maybe in the future he'll know. Obviously I'll explain it to him when he is [00:22:00] old enough, but I don't think right now he really can tell a difference.
[00:22:03] Liz: Have you thought about how you would explain it to him? And what kind of age that you would tell him about it? 
[00:22:08] Ashley: I think I'll probably just gradually explain it to him. This is a good question. I really haven't actually thought of this to be honest, but I would prefer just to gradually explain it to him.
[00:22:16] Ashley: So once he is old enough to understand the concept of mommy needs to take a nap. It makes her feel a lot better when she takes naps like it helps you when you take a nap, that kind of thing. And then as he gets older and understands more about what's normal and what's not being able to explain that it is a chronic illness, et cetera.
[00:22:32] Ashley: And then I certainly have also asked myself the question of what if he ends up with a sleep disorder? How am I gonna handle that? So that's a whole nother thing that I've tried to think through as well. 
[00:22:41] Liz: Yeah, that's true. 'cause it can be, there's a genetic component for some people, right?
[00:22:45] Ashley: Yeah. We met with a geneticist before getting pregnant, actually. And they said it's very low chance. But they were supportive and they said, look, you know exactly what to look out for, like you've been through it. So you're probably gonna support him a lot better than you've been supported in your journey.
[00:22:59] kerly: Yeah, [00:23:00] that's true. 
Building A Support Village
[00:23:00] kerly: Did it ever cross your mind, and I don't want this to come across in a pessimistic way, this is how my brain works. 'cause I grew up with a single mom. So did you ever feel like you had to consider, okay, what if. Me and my partner break up, and then I'm a single parent with Narcolepsy and what that looks like.
[00:23:18] Ashley: Yeah. You never know what's gonna happen, right? There could be a lot of reasons that you end up a single parent. I think for me it's been important. We actually recently moved back to North Carolina from California where we were living to be closer to family and our friends and our support system that we had here.
[00:23:35] Ashley: And that was a one of the main motivators for me was just to have a bigger support network. And I also went through a postpartum complication that was like really dangerous where I could have had something really bad happen to me. And so that thought was playing in my head too, of what if something happens to me?
[00:23:51] Ashley: Like I want my son to be around his family and people that can help for him. So I think either way, like we're in a good place now or we're supported by a lot of our family [00:24:00] members.
[00:24:00] Liz: So important. , They say that it takes a whole village to raise a child. 
[00:24:04] kerly: Yeah.
[00:24:04] Ashley: Yeah, it does. And I feel like people are just remote and scattered nowadays with the way that jobs work and technology allows you to go anywhere essentially and still do certain things. And so it's definitely a different situation raising children. So sometimes you maybe have to pick and choose your village and find 'em where you're at. Or you may not have the option to live near your family. 
[00:24:23] kerly: Do you think that you would've come back to North Carolina later if you hadn't got pregnant? Like later in life, you would've moved? 
[00:24:30] Ashley: I don't know, honestly. We were pretty happy where we were in California and it wasn't until we had a child and things changed that we felt like we really wanted to move back.
[00:24:41] Ashley: And it wasn't just the family support, it was also cost of living and like the good school systems here. But I think I would've probably stayed away longer if I ever came back.
[00:24:50] kerly: Yeah. 
Stigma And Educating Others
[00:24:50] Liz: Do your family have a good understanding of. Narcolepsy and how to support you in that? 
[00:24:55] Ashley: I don't know. I I guess it's not something that I talk about a whole lot with them.
[00:24:58] Ashley: I talk more with [00:25:00] like my husband and my kind of community of friends that I have with Narcolepsy because I feel like they inherently get it better, right? They know about my diagnosis, but I wouldn't say that we have really in depth conversations about it very often and they just know, like the thing I have, I take medication and I do okay.
[00:25:17] kerly: That simplifies it so much. I know she has an illness, she takes medication and she's doing well. Don't bother her with asking her questions about her illness. So see how she's thriving.
[00:25:26] Ashley: And I think that's a problem with chronic illness anyway, right? It's not like you're actively in the hospital being treated for something.
[00:25:32] Ashley: You're like trying to live your daily life and just manage your symptoms. And so to everybody else, it looks like she probably seems fine,
[00:25:38] Liz: What do you think that, or are there any barriers to them kind of understanding about the condition more?
[00:25:44] Ashley: The understanding of Narcolepsy a lot of times is based on just what people have seen in the media or they don't even know what it is. And so just the lack of education and awareness around the the illness and what the symptoms are, I think is the biggest barrier. 
[00:25:59] Liz: And does [00:26:00] that make you feel like a certain type of way or are you just yeah, it's fine.
[00:26:03] Liz: They don't really get it, but they know the basic. 
[00:26:06] Ashley: I think sometimes I'm a little bit like hesitant to really even talk about it just because of the, stigma around it. Feeling like I have to overexplain myself to people if I bring it up because you don't wanna say it, and then have somebody assume that it looks like whatever they've seen in a movie somewhere, or that you're unreliable or whatever they make that assumption about.
[00:26:25] Ashley: I'm also probably part of the problem and that I don't bring it up and try to educate them as much as I should, but that's really hard, especially when it's people whose opinion you really care about. 
[00:26:33] Liz: Yeah, it is really hard. It's very tiring as well.
[00:26:36] kerly: I guess if you don't see your family that often, or even if you do see them often, sometimes there's so much going on that it takes to get through a day. Maybe you just wanna have a nice conversation and just go home and leave it. And the energy it takes to explain to someone something, it's just it's way too much spoons to use up.
[00:26:54] Liz: It also shouldn't just be on the person with Narcolepsy to educate people about it. [00:27:00] You would hope that the people around you, put in some level of effort to understand it, but it's not the case all the time. And, yeah, it's often just finding that balance of, okay, let's talk about it here, leave it on this other occasion.
[00:27:15] Liz: Some people it's just dripping it in slowly about what it really looks like.
[00:27:19] Ashley: Yeah, definitely. 
[00:27:20] kerly: It's interesting that it has to be done that way. I always have to remind myself that not everybody is like, i'm the sort of person where, say you're a friend and you came and you told me, oh, I got something happened to me and I got diagnosed with something. Or even I went to the doctor, and the doctor said. I had this particular type of cold or some whatever, my kidneys or whatever it is. I am gonna be like, oh my God what is that? And then as soon as I get the name. I won't sleep for one night. I research every single thing about that illness. Yeah, I'd be like an expert by the next day. I feel like that's what I need to do to support them, and I have to keep reminding myself that everybody's brain doesn't work this way and everyone doesn't feel that they need to, be an encyclopedia of the illness in order to support them.
[00:27:59] Ashley: That's so true, [00:28:00] and I feel like as people who have chronic illnesses, we probably are better about doing that ourselves just because we know how it feels and we've probably spent a lot of time looking up our own symptoms. 
Work Disclosure And Boundaries
[00:28:09] Liz: Are you open with your work about Narcolepsy or is that somewhere that you don't tend to share as much?
[00:28:16] Ashley: I wouldn't say that I like hide it so to speak, but I don't like openly talk about it. There was a time where I went to a conference and was a patient advocate and a couple of people at work were like, Hey, where are you going? And so I told them. So it's not something that I'm like actively concealing, but I don't, there's no accommodations that I need and so I'm not like telling people about it unless they need to know.
[00:28:35] Liz: Yeah, that's fair. You're a full-time parent. You don't need to be educating everyone you've got too much to do. 
[00:28:39] Ashley: Yeah. 
Another Baby And Pet Chaos
[00:28:40] kerly: Ashley, do you think you'd want to have another child or one is enough? 
[00:28:45] Ashley: Oh, gosh, yeah. That's something that I'm asking myself, on a regular basis. The hardest part for me was just the being so sick during the pregnancy and then I had that really bad postpartum complication that really scared me a lot. So those are two things that kind of hold me back [00:29:00] from wanting to have another child on top of just the amount of like energy it takes and if one is this much.
[00:29:06] Ashley: Like how much will two be?. I think, an ideal world. Maybe one more, but definitely no more than one more if that. We'll see. To be determined,
[00:29:13] Liz: my brother's just had , him and his partner have a baby and a 4-year-old, and it's just like they manage well, but it's chaos when I go to the house, just so many noises and things flying around and there's no rest. No rest for them. 
[00:29:27] Ashley: Yeah, it's a lot of effort, especially once they get bigger and can run around and get into things. So definitely something that I take into account. So the jury's still out on that one. We'll see.
[00:29:35] kerly: How are your dogs? 
[00:29:36] Ashley: , They, have a love hate relationship with the baby. They love that he feeds them snacks 24 7 and they hate that he like chases them around and wants to like, rough house with them. They're both kind. So they're like past that playful stage. Yeah. But they've done well considering, a lot of stuff. 
[00:29:52] Liz: They're jealous of all the cuddles the baby gets. 
[00:29:54] Ashley: Yeah. The amount of food they get really helps mitigate some of that jealousy.
[00:29:58] Ashley: I was joking. They have a vet [00:30:00] appointment tomorrow and it's the first one they've had, and it was like their annual checkup and I was like, you have to ask the vet like, how many chicken nuggets can a Dogxim eat before it's like really a problem.
[00:30:08] kerly: Hopefully they won't say that they've gained any, they're overweight or anything.
[00:30:12] Ashley: They look like they're in good health, so
[00:30:13] Liz: they're having a great time.
 
Postpartum Anxiety Tools
[00:30:16] Liz: Did you find any challenges in terms of your mental health when managing parenthood and pregnancy or your Narcolepsy symptoms?
[00:30:27] Ashley: Yeah, I definitely struggled with anxiety postpartum. I think part of that is just the normal, like hormonal shifts, a lot of women go through that. And then sleep deprivation on top of that can make it a lot worse too, as you guys probably know or have experienced. I definitely feel a lot more anxious in general when my symptoms aren't controlled.
[00:30:45] Ashley: And then I think going back to work too really triggered a lot of anxiety for me and just, having to let somebody else take care of my baby and not knowing how well I was gonna perform at work. Now that I've got these other responsibilities and I'm not medicated like I had planned to be by the time I went back to work. [00:31:00] So that brought in a lot of unknowns too. 
[00:31:01] Liz: How are you balancing working and being a parent alongside your symptoms? 
[00:31:06] Ashley: Taking it day by day and doing my best. I think, it's like anything else you just have to do what you can on any given day and then, accept where there are limits and be okay giving yourself grace around those limits.
[00:31:18] Ashley: And that's something that I've had to practice a lot, I think. But I wouldn't say it's been like a negative experience. I wouldn't tell somebody, don't do this. It's been terrible. I think it's overall been good. It's just been like I have to prioritize differently where my energy goes and make those decisions on a daily basis.
[00:31:34] Liz: And was that a decision to go back to work or is it more financial necessity or something you wanted to do for yourself? 
[00:31:41] Ashley: A little bit of like the financial piece, just because we wanted to keep the lifestyle we had. And then also, I just really like being in my career and having something else that I can use to define myself almost.
[00:31:55] Ashley: Outside of being a mom I think it's healthy for me to have those different spaces [00:32:00] and different versions of Ashley. At first it was very hard to let him go be somewhere else all day. But once I got used to that, I realized that it was definitely the right decision for me to go back to work.
[00:32:11] Liz: It must be so strange to spend all day every day with a baby because you just don't speak well, maybe you would see other adults, but you are like just so used to doing like baby things and baby talk. It must be odd to then transition into a different mode. 
[00:32:26] Ashley: Yeah, it is, and I still experience it like weekends and then switching back into work mode.
[00:32:31] Ashley: It's really different, but it gives the nice like dichotomy to life and I'm not always doing one thing or the other, so it's nice.
[00:32:36] Liz: How did you manage your anxiety when it flared up? Was there specific strategies that you found helpful for you?
[00:32:44] Ashley: So I was in therapy, which is always helpful for me. I did end up going on medication to help manage my anxiety, which made a really big difference. Especially in those initial like postpartum months. I needed something to help. But yeah, it was just a combination of like therapy and the strategies that [00:33:00] my therapist gave me, and then the medication I think was, it was great and just getting outta the house too, and it's easy when you have a newborn to wanna stay inside all the time and get trapped by their schedules, but being able to go for walks and go out for a meal really helped my mental health too. 
[00:33:13] Liz: I really love the idea of what you said about giving yourself grace as well because I think that can honestly get you through so many tough things in life when you have that self-compassion.
[00:33:25] Ashley: Yeah. Absolutely.
[00:33:26] kerly: That's so true. I think it makes it worse when you beat yourself up about stuff, then it makes it harder to get through it. 
[00:33:32] Ashley: Yeah, definitely. And then, it's something that you can't control anyway. You can't change your symptoms.
[00:33:37] Liz: And it's not an easy skill either. Like it, we all have that voice in our head, which. Just, bites us all the time. So actually practicing giving yourself that grace and being kind to yourself, it's like flexing a muscle in a way, and then hopefully it becomes easier over time. Is that what you found? 
[00:33:54] Ashley: Yeah, definitely. When I first started, trying to rewrite the narrative that I had about myself in my [00:34:00] head with my therapist. It was very hard. I constantly had to back up, correct, re-say what I was gonna say to myself in my head. But then eventually it becomes a little bit more second nature and, obviously it still is not perfect, but definitely feel better than I did before I started practicing that.
[00:34:15] Liz: Did you have certain negative perceptions of yourself because of the symptoms you were experiencing before you were diagnosed, but also after you were diagnosed? 
[00:34:25] Ashley: Yeah, I think I was definitely worried about my ability to perform my job the way I wanted to excel in my career as my symptoms got worse and I didn't know what was happening, I was really hard on myself because it was like everybody else can do these things to have a nine to five and like, why do you feel so bad after your job that you have to come home and you can't do anything else? And I think being diagnosed helped, but then I still felt really like self-conscious about it. There was something wrong with me. And so it took a while to reframe that into, it's not something that's wrong with you or bad about you. It's just part of your life and you [00:35:00] have to manage it. 
[00:35:00] Liz: Yeah, definitely. 
[00:35:01] kerly: I like that. It's a part of your life and you just need to manage it. 
Community And Parenthood Advice
[00:35:05] Liz: You've mentioned a bit about the Narcolepsy community as well. Is that something that you are very much embedded in or and do you have people close to you, like in your actual physical area that have Narcolepsy. 
[00:35:17] Ashley: I used to be a lot more active on social media and with project sleep since becoming a mom and all of that, I've kinda had to pare that down a little bit. I still do try to do speaking engagements and things like that when I can, and, opportunities like this are always great, but I really felt like that was almost the best thing for my mental health when I was first diagnosed was meeting other people that like understood and were in the same boat and, you could talk to 'em about what was going on.
[00:35:40] Ashley: And they were like, yeah, I totally get that. Because it's such a foreign concept to a lot of people who don't know about this, and have never experienced it. I don't have many people like in my immediate area, but definitely like the Instagram community, the folks from Project Sleep, like all those people are just awesome. And I feel like I can reach out to anybody anytime and [00:36:00] they're be there for me. And so that's a really good thing. 
[00:36:02] Liz: I guess that's the good thing about Narcolepsy is that there will always be someone awake are you in touch with other parents who have Narcolepsy at all? 
[00:36:09] Ashley: I wouldn't say like a group. I have other friends with Narcolepsy that have children. So definitely not alone there. But I don't go to the, I know there's like support groups and things like that too. I haven't attended any of those. 
[00:36:21] Liz: Yeah. That's pretty cool. So you have friends that have Narcolepsy, that have kids? 
[00:36:26] Ashley: Yeah.
[00:36:26] kerly: Nice. That's handy. Yeah.
[00:36:27] Liz: What advice would you give to someone who is considering parenthood. And who has Narcolepsy? 
[00:36:35] Ashley: I would say. The thing that helped me the most was just coming up with a plan and figuring out like, what does this look like with my doctor?
[00:36:43] Ashley: What are my options for medications? What should I expect? And I felt like the more informed I was and the more I knew what to expect going into it, the better about the whole thing I felt. So that's number one. Number two would be, make sure you have your support systems.
[00:36:58] Ashley: The people that you can call if [00:37:00] you really need help. And then number three would just be like, I always say don't let it discourage you necessarily. You can make things work, you can prioritize accordingly. And so I just want people to feel like the things that they truly want out of life, like they can still achieve those if they're able to resource things appropriately. So just letting it not be something that people automatically say, I can't do that even though I want to just because of my chronic illness. 
[00:37:27] Liz: Yeah. Thank you. I'm sure that will be really helpful for a lot of people. Yeah. thinking about parenthood. 
The Red Button Question
[00:37:32] Liz: So my favorite question.
[00:37:34] Liz: You might have heard this on other podcast episodes. If you could press a red button and get rid of Narcolepsy from your life and never have experienced it, would you press it? And why?
[00:37:45] Ashley: Oh gosh, that's a hard one because I feel like I wanna say yes, right? Like I wanna be like, no, done. But I also think that it's forced me to learn so much compassion for myself and like to be a part of this awesome community that I wouldn't have otherwise. And to be able to help [00:38:00] educate people and promote awareness.
[00:38:02] Ashley: And at the end of the day, I don't know who I'd be without it, cause it's part of me and part of my life and who I am. So I'm gonna say no just because of those reasons. But your gut reaction is always yep, get rid of it. But when I think about the other things beneath it, I think it's done a lot for me just as far as helping me develop my own self-compassion.
[00:38:20] Liz: Yeah. 
Wrap Up And Farewell
[00:38:20] Liz: Amazing. Thank you so much. Yeah. I'm sure your son will be very proud. . A mom going through life with a chronic condition and still singing it on the good days and yeah. Making it work.
[00:38:30] Ashley: Thank you guys. 
[00:38:31] kerly: You are welcome. Thank you, Ashley, for coming on and sharing a little bit of your story we haven't had this topic on yet it's it's nice to have a different topic on. 
[00:38:40] Ashley: Yeah, absolutely. Thank you guys so much for having me. It's been awesome to talk through everything and lovely to get to know you guys better.
[00:38:47] Liz: I'm sure you'll be inspiring lots of people to be getting pregnant now.
[00:38:51] Liz: There'll be a few.
[00:38:52] Liz: So we like to end it with all of us together saying, happy, napping everyone. So after three, 1, 2, 3. [00:39:00] Happy napping everyone.
[00:39:01] kerly: 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.
[00:39:30] kerly: 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.naps4life.com.
[00:39:50] kerly: Narcolepsy Navigators is produced by a team of [00:40:00] volunteers working for the NapsForLife, 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 www.naps4life.com.
[00:40:20] kerly: 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@gmail.com. You can also support us by donating at the websites. Happy napping everyone.