Brain Fog and Blurry Words: The Invisible Symptoms Nobody Talks About

In this powerful episode of Narcolepsy Navigators Season 4, we sit down with Amelia, a 28-year-old from London who discovered she had narcolepsy while playing cards on a skiing holiday. What started as uncontrollable laughter turned into a life-changing realization when her hands and neck kept dropping—classic cataplexy symptoms.
Amelia shares her raw and honest journey from being dismissed by doctors who told her "you exercise and eat meat, so nothing will show up" to finally receiving her diagnosis on New Year's Eve 2020. Her story takes us through the struggles of sixth form, the relief of university's flexible schedule, and the grueling challenge of completing a PhD while battling extreme fatigue.
What You'll Learn:
How narcolepsy symptoms can be dismissed as "normal tiredness" for years
The relief and validation that comes with a diagnosis
Why spoon theory and battery theory help loved ones understand your limits
The hidden symptoms beyond the "big four"—brain fog, concentration issues, and memory problems
How work environments can make or break narcolepsy management
The complicated relationship between family skepticism and chronic illness
Why self-compassion is a work in progress, even after diagnosis
Standout Moments:
Amelia's creative napping solutions—from under-desk nests to prison classroom floors
The unexpected benefit of working in high-energy environments
How moving from PhD research to prison rehabilitation work improved her symptoms
The bittersweet reality of avoiding conversations about narcolepsy with family members
Why she'd press the red button (and why that answer deserves grace)
Amelia's candid discussion about the mental health impact, the ongoing medication trials, and learning to advocate for herself in work environments makes this episode essential listening for anyone navigating life with narcolepsy or supporting someone who is.

Episode Highlights:
00:00 - Welcome and Introductions 
00:55 - Amelia's Weekend and Choir 
06:11 - Early Symptoms and Medical Dismissal 
09:25 - Coping Through School and University 
12:46 - Would Early Diagnosis Have Changed Choices? 
13:55 - Relief and Accommodations After Diagnosis 
17:05 - Naps and Medication Journey 
19:42 - Managing Symptoms Without Strong Medication 
22:04 - Self-Compassion: A Work in Progress 
23:32 - Friends, Family, and Hidden Pressure
 25:15 - Speaking Up and Setting Boundaries 
27:44 - Advocating at Work 
29:32 - Dating and Cataplexy
31:02 - Family Skepticism and Hurt 
33:08 - Coping with Unsupportive Family
 36:38 - Beyond the Main Symptoms
 39:22 - Mental Health and Low

Transcript

[00:00:00] 

Welcome and Introductions

[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. I'm Kerly Bwoga, the founder of NapsForLife, CIC, and welcome to our stories.

[00:00:42] Kerly: Hi everyone. Welcome to Narcolepsy Navigators. I'm Kerly, a host. I have Narcolepsy, type one, 

[00:00:47] Liz: I'm Liz, your co-host. And I also have narcolepsy with Cataplexy. 

[00:00:51] Kerly: And today we are here with Amelia. She's from the UK . 

[00:00:55] Liz: Welcome. 

Amelia Weekend and Choir

[00:00:55] Kerly: Amelia, how was your weekend?

[00:00:57] Amelia: Yeah, it was good. Pretty chill. I'm part of a choir [00:01:00] called Groove Chorus and we've got concert coming up, so had a big like band rehearsal today, which was super cool. Super fun. But yeah, otherwise chill. Thank you. It's one of my friends that started it and there's now four choirs and today, like all of us joined together. 

[00:01:14] Kerly: Oh, wow

[00:01:15] Amelia: actually have no idea how many people, but was packed.

[00:01:17] Amelia: Probably more like a hundred.

[00:01:18] Amelia: Wow. 

[00:01:19] Liz: Amazing. I've heard the communal group singing is actually so good for you. 

[00:01:24] Amelia: Yeah. I find it fun. I dunno if it's everyone's vibe, but yeah. I love it.

[00:01:28] Liz: Good to get these endorphins going, I think. 

[00:01:30] Kerly: Liz, how was your weekend? 

[00:01:32] Liz: My weekend has been good, actually. I feel like I've had a good balance between socializing and exercising and relaxing. I feel like the balance gets tipped so easily sometimes where I either do too little and then I feel like I've missed out or I do too much socializing or other things, and then I'm exhausted by Sunday.

[00:01:54] Liz: But the blue sky yesterday cheered me up so much. I just felt [00:02:00] amazing just being outside and walking around. And then I actually really enjoyed the rain today because, it meant I could just stay indoors and not feel bad about it.

[00:02:07] Kerly: Yes, I like that. That's good. 

[00:02:08] Liz: How has your weekend been, Kerly? 

[00:02:09] Kerly: The week was very tiring. I dunno if you guys have this, but. Sometimes, like maybe once a month, the narcolepsy get so bad that all my muscles ache as well. And so that started on Wednesday , I woke up and my, all my muscles were like paining me.

[00:02:27] Kerly: And so the rest of the week it was just like aching and so like on my wits end with people ' cause I was so tired to begin with that it was just like, it wouldn't take anything for me to snap and stuff. 

[00:02:37] Liz: Yeah. 

[00:02:38] Kerly: Yeah. So I had an incident at college and someone used a faucet that wasn't, they weren't supposed to use the cap bit had come off.

[00:02:46] Kerly: So it was just a two bit left. And so obviously that's health and safety, so you should just not use that tap. But they decided to use it anyway. And then because you can't control it because it doesn't have a tap bit on it, it just has the tube. Then when the pressure came out, it got [00:03:00] flashed and I got wet.

[00:03:01] Kerly: Oh no, when you're at your wit's end, after standing from 10 till one doing perm, I was just like about to punch someone. And then one of the teenagers came up to me and gave me a spray bottle and said, spray her in the face. And because I wasn't even thinking, 'cause I was just like so tired and I was so past thought I just sprayed her in the face was so not an adult thing for me to do. You know when you like sold that tired that you don't even feel sorry to apologize or anything. It was just like, she was like, it's just water. And I was just like. Oh my gosh. I could just punch you in the throat right now. It's yeah. 

[00:03:31] Liz: I know that feeling. I definitely get that when I am so tired, I just cannot control my emotions at all.

[00:03:38] Kerly: I was dropping the diffuser to dry the permed hair. I was dropping it like every minute

[00:03:42] Liz: oh, no. 

[00:03:43] Kerly: Yeah. So I was like beyond, like at that point and people were saying to me, okay, go lie down. They couldn't understand that when you're this tired. If I was to lay down, I would've slept three hours. So would've been in the college, sleeping in the sofa three hours, and I didn't want that. So I just needed to just push through and get home. Yeah. Yeah. And I [00:04:00] did, I got home at quarter to four and I didn't wake up until six o'clock. 

[00:04:03] Liz: Whoa. 

[00:04:03] Kerly: Yeah.

[00:04:04] Liz: My gosh it's quite rare for me these days to push through without napping. Because I have the routine at work where I do nap, but I know the feeling like occasionally I'll not nap. And it is such a weird feeling, like you just go into zombie mode. 

[00:04:18] Kerly: So yeah. So the weekend was good 'cause I was just glad for the weekend.

[00:04:21] Kerly: So I stayed at home. I did church from home, I watched it online. I stayed in bed in my pajamas all day. 

[00:04:26] Liz: Nice. You recovered. 

[00:04:27] Kerly: Yeah.

[00:04:28] Liz: Amelia, can you tell us the year you were diagnosed where you are based and your age now, if you are happy to share. 

[00:04:37] Amelia: I'll start with the easy ones. I'm based in London. I am 28. I was literally just trying to figure this out because I got diagnosed on New Year's Eve and so I'm not a hundred percent.

[00:04:48] Amelia: It was 2020 or 2021. Just like a year into my PhD. And I think that's why I can't remember the year, 'cause I literally called me on New Year's Eve 'cause I remember being like, if I didn't, like this wasn't gonna be a [00:05:00] diagnosis, they wouldn't be calling me today. Like they just wouldn't do it today, like on this holiday.

[00:05:04] Amelia: But yeah, 20 20, 21 or either was yeah, when I was diagnosed.

[00:05:07] Kerly: What might, may, what might help you remember? Was it before COVID or COVID had already started? 

[00:05:13] Amelia: That is a good question. It was, I was in a shared house. I think it was right before that main COVID lockdown in the like February, which would make it 

[00:05:24] Kerly: so it was 2020.

[00:05:25] Amelia: Okay. Yeah. Thank you. 

[00:05:27] Kerly: I know because I went to New Zealand for a wedding that year and I was away the whole of February. And then when I came back it was carnage in England. So I was living my best life in New Zealand. No masks having a great time.

[00:05:37] Kerly: And then like when I came back it was like, oh what? What is going on? Like before we left, we knew something was bad because the airline changed the flights and let us fly through China. 

[00:05:45] Amelia: Oh wow.

[00:05:45] Kerly: We were in the airports, every like staff were masked up and there was some staff in hazmat suits and stuff and we're like, something's going on.

[00:05:53] Kerly: And they're not telling us like something bad is happening somewhere. This is we didn't hear any from the news before we left London, but [00:06:00] obviously something is happening that other people know about. And then that was like February 2nd. And so by the time I came back 28th of February, it was like a whole different thing.

[00:06:11] Liz: Wow. 

Early Symptoms and Dismissal

[00:06:11] Liz: Amelia, what age did you start showing symptoms and what were they to begin with? 

[00:06:18] Amelia: It's really hard to know because I feel like I went through such a stretch of time where that was my, like normal and I just didn't realize, and this was before I got cataplexy. And so I think for quite a long time I probably just thought that was normal.

[00:06:32] Amelia: So I like, one of the, like earliest memories I have is like in sixth form for a while I had one to one tutoring and I remember I'd always go into geography and just like really struggle to stay awake and like I'd be so embarrassed 'cause I was literally the only person in there with the teacher and I'd just be like, really struggling not to fall asleep.

[00:06:50] Amelia: And so I think that's one of the like main moments. But to be honest, I feel like all throughout, at least. Like a levels in school. I definitely was like struggling with being super [00:07:00] tired. But again, I was I feel like this is a classic where you're like doing loads of other things and like doing activities and everyone's a bit like, okay, obviously like everyone gets tired.

[00:07:08] Amelia: And then I feel like it probably was ongoing, but I feel like there were just certain moments where it like really was so noticeable. And then I think it was like coming back around to, I did a master's, so like a few years later and again, it was like seminars, just like really struggling to stay awake again.

[00:07:24] Amelia: Just like really embarrassed. Like not knowing what to say. That was the first time I went and spoke to GP about it and was just like, I don't think this is not like a normal level of tiredness. They were like. Literally couldn't have been more dismissive. I think they literally said to me like, we can take a blood test.

[00:07:40] Amelia: But it was the weirdest thing. It was like, but you do exercise and you eat meat, so like realistically nothing's gonna show up. Obviously it was a bit like what but nothing did show up because narcolepsy so then kept struggling through again, started a PhD, which is just I guess as anyone that has Narcolepsy, knows, like sitting at a screen [00:08:00] reading like all these things are literally the worst things to be doing with narcolepsy.

[00:08:04] Amelia: And then around that time had cataplexy for the first time, which, so yeah, I was probably about tw yeah, 24 or something. 23,24 where I was literally on a holiday skiing holiday with my family was sat playing cards. And it was just like one of those times where everything's so funny and it's really not that funny, but it was just like hilarious.

[00:08:23] Amelia: And that was like the first experience I had of cataplexy where I was like trying to hold my cards and my hand just kept dropping, like my neck kept like dropping. And I was like, what on earth is this? So I literally in that moment, like Googled, I think I just Googled, again, the classic like muscle weakness with laughter.

[00:08:39] Amelia: And then narcolepsy came up and then I was like, there's just no way that I don't have this. So I think then at that point, and then this was started to go into COVID, so the next GP appointment I had was a phone appointment. And I basically told them that I had narcolepsy or that I was like very certain I had narcolepsy.

[00:08:56] Amelia: And so at that point she referred me to a neurologist. And the process [00:09:00] started from there. But yeah, quite a few years I guess. 

[00:09:02] Kerly: So at the end when you told her, did you believe you had it then or you were just trying to see what she would do to help? 

[00:09:09] Amelia: I think from when I had the cataplexy symptoms based on then what I read of like cataplexy generally comes with like narcolepsy. I was pretty set. Like I would've been very surprised if I hadn't had it just because like it all sit you know when you start reading and it's just like that is my life. Yeah. How 

Coping Through School and Uni

[00:09:25] Liz: did you get through all those years? So sick form your undergrad, your masters? With the symptoms. But still trying to keep up with everyone else.

[00:09:36] Amelia: It's funny I found like my a-level time so difficult. For me, looking back at it that was such a horrible time for me and I think I've not like really even thought too much about it or put the two together or like how much like narcolepsy impacted me or and it just was so rough and I just remember for so long, like trying to study and memorize things.

[00:09:58] Amelia: And just so [00:10:00] often just like sleeping in those times when I was trying to like, obviously evenings, right? It's like when you have to revise or whatever. And I think at one point I thought, I then started to think internally that was like my coping mechanism of I was like really struggling or like really stressing and then my like response was to just go to sleep.

[00:10:16] Amelia: And so I think for a while I like put that on myself of that's what I'm doing every time I should be studying. And I think that was quite like a, that time, like looking back, I feel like quite negatively about the whole thing. And then didn't do great in my, A Levels also was like during sixth form was at a performing arts school.

[00:10:31] Amelia: So that was also my day, which obviously then like thinking back is like so exhausting on top of like a levels, I think things like probably shifted a bit when I started studying. 'Cause generally I was doing, like for example, my undergrad was like social science based, so like essays, lectures.

[00:10:47] Amelia: And I think that was actually like then quite a nice shift to have a couple of lectures a day, go home, like sleep. It wasn't like, it wasn't too intense. So I think that that period actually felt okay. And I think it like that's [00:11:00] almost a chunk of time where I don't even think about narcolepsy affecting me. 'Cause I think it just was like scheduled into my life of like actually having quite a lot of like free hours and things. And then I think coming back to like PhD masters where actually it was like more intense. There was more like riding on it. I actually just had to sit and like work all day.

[00:11:17] Amelia: That was much harder to navigate and it was a lot, much longer. Like I took a much longer time for my PhD. And I think also because it was like within that time that I was diagnosed, there was a lot of navigating that and like figuring out how best to deal with it and structure my work and things like that.

[00:11:36] Kerly: Do you think cause you talked about the, when you were at six form doing the A levels and stuff. I guess because of how the regiment was that felt very taxing compared to when you started uni the timings were different. So it was much nicer.

[00:11:49] Kerly: Do you think that because you were able to keep up your grades at uni, that sort of helped as well, so then you didn't almost feel the pressure 'cause you were getting to take your naps, you didn't have to do as much [00:12:00] lecture, it wasn't as structured as college, so then you didn't feel like you were losing out.

[00:12:04] Amelia: Yeah, I think definitely. I think the structure made a huge difference in the sense of having those periods of time where I could nap, which still allowed me to go to lectures, still allowed me like chunks of time to work still allowed me to socialize like I was going out. Like also having a great time in comparison to, yeah, I guess the issue in terms of having narcolepsy in school. Is that actually like the whole chunk of day is taken up learning and in school and then actually the time in the evening when you're probably like so exhausted. And but also that's your time to revise, right? Like other than things like that is your time. Yeah .That just didn't work for me at all. So yeah, I definitely think that different structure was so important.

Would Diagnosis Change Choices

[00:12:46] Liz: Do you think you would've made any different choices if you were diagnosed with narcolepsy at sixth form? 

[00:12:52] Amelia: That's such an interesting question. I think it's so hard to say. I feel like maybe in terms of. Like this choice to [00:13:00] go and like train in musical theater. Which is funny 'cause looking back, like I don't see necessarily my narcolepsy as being like the issue during that time, but like obviously was a factor. But I think what has been huge for me in diagnosis and I think would've been beneficial is like having the reason to be able to tell people.

[00:13:20] Amelia: So like in those like one-to-one lessons, being able to tell the teacher like, why I am not staying awake, rather than the embarrassment like feeling. And then also being able to figure out some kind of like structure that actually like works based on the fact that that is just gonna happen rather than just like awkwardly getting through it and like neither of us saying anything.

[00:13:41] Amelia: So I think a lot of it would've come from that of like actually being able to tell people and then figure out in response like how to navigate that, which I think is just something that wasn't a thing. 'cause it was just like that was the norm and that was my, like normal.

[00:13:55] Liz: Yeah. 

Relief and Accommodations

[00:13:55] Liz: And how did you feel when you were actually diagnosed with narcolepsy?

[00:13:59] Amelia: Yeah, [00:14:00] for me, I like, it was huge. I think again, it's one of those things where I think like I'd gone had such a period of time where I just felt like so embarrassed. I think like in that academic setting, like in lessons, in seminars, like just not having a reason and I was like, almost had got to the point where I was like making things up and like I would be like, oh, sorry, like I've not been feeling sorry I couldn't stay awake or whatever.

[00:14:23] Amelia: And to be able to actually just go to people and be. I have an epilepsy, like there's a reason for this. I think that was huge. I think also I was, I think I was really harsh on myself a lot of the time. If I decided not to go and I still to an extent I still do it, but if I like decided not to do something, go to a social event or meet up with a friend, I think quite often again, like around kind of academic events, if there was like a talk I really wanted to go to and I thought would be really beneficial, but then decided not to go, I would like really kick myself afterwards and be like, that was your decision.

[00:14:53] Amelia: Like why? That would've been really beneficial. And so I think again, like just being able to give myself a bit of grace and be like, okay, [00:15:00] like you're actually not the same as like all these other people that are going and doing 10 other things. And then again, I think, yeah, I think like in for so many reasons, again, like stuck being able to think about medication and like things that like. Logistically you could help me? Yeah, just like in so many ways I felt like it was like a really important like moment. 

[00:15:20] Kerly: Did they give you accommodations? Like after you told them they were good at school for your PhD and stuff? 

[00:15:26] Amelia: Yeah. And so I think, I work very closely with a supervisor who was just like so great about it and so understanding and yeah, like in terms of the funding body, was able to extend things. And yeah, like every, everyone was so great about it. I think had a really nice like department and everything, so yeah. That was ideal. 

[00:15:44] Kerly: How did it affect you in work? Were you working in any of this time? 

[00:15:48] Amelia: So I was for the first for the first four years. Three, four years, it was just my PhD. It was super challenging. Had a little nest under my desk with a pillow and a blanket. [00:16:00] But everything just took so long. Like I found it so hard to motivate myself, just like knowing that literally everything I was about to do was gonna send me to sleep. But yeah, I mean I think it just came down like, it was a lengthier process, obviously, had to nap, had to do things a bit differently.

[00:16:14] Amelia: And then recently I've just moved to London. I'm working, so I work, actually work in prisons. So I work with people coming up for release helping to like, prepare and support them for release and then we like support them on the outside as well. So that has been like a massive shift in like my structure, like just everything has changed.

[00:16:34] Amelia: But yeah, that I've actually I've loved that transition because I've been like, so active and like just had things to do all the time. And when we're like running courses in prison, I'm like stood up at the front, like I'm talking, I'm engaging and actually that's been so beneficial because like it keeps me going and the adrenaline and it like keeps me awake.

[00:16:53] Amelia: And since then have managed with generally just like a nap over lunchtime, which like during my PhD could like [00:17:00] literally nap so many times in a day for so long. So yeah, it's been quite a transition. 

Naps and Medication Journey

[00:17:05] Liz: Where do you nap and also do you take any medication at all to help with your symptoms? 

[00:17:11] Amelia: Yeah, so if I'm at work, we, if I'm, so we have an office. If I'm there, then we have a conference room within the office. Which in and I just put some chairs together. We also, I'm lucky in the prison that I work in, we also have our own little office within like a hub within the prison. And then again, I just eat nap on the floor or push up, like push chairs together in one of the classrooms.

[00:17:32] Amelia: And then obviously like at home, ideally, like on the sofa or in bed I feel like there was another part of that question, but I can't think what it was. And do you take medication? Yeah. Has been quite process. At the moment I am taking Methylephenate. I don't take anything for like nighttime sleep. Just say, take that. Which to be honest, I'm not a hundred percent how much it's doing or keeping me awake, but that's, yeah, that's where I'm at the moment.

[00:17:56] Liz: It's been a long process, what do you mean? 

[00:17:58] Amelia: I think I've just not [00:18:00] fully found anything that like, really works. I am also, I don't love the idea of being on medication and like taking things that are like too strong or, like I don't really know what the response of my body's gonna be.

[00:18:15] Amelia: And and so yeah, I mean I initially was taking Modafinil which I just felt like didn't really do any kind of two extremes. I either like it did, just didn't do anything or I think at one point like increased the dose and then it was just a bit, like a bit much and just yeah, didn't really feel right.

[00:18:31] Amelia: Again, like I, I think at one , I took something for like nighttime sleep which I can't even think of the name of, but it's an antidepressant necess I, and I think that it made my sleep way worse. Like I used to wake up continuously throughout the night, like loads, but I would be able to get back to sleep straight away.

[00:18:50] Amelia: And then when I got put on that, I started to wake up and not be able to get back to sleep. And that's like never really gone back to what it was. So I came off. But I think it's just like a, freaked me [00:19:00] out a little bit, but also I'm like, I just obviously like the fact that there's not medication that's literally specifically been created for this purpose.

[00:19:09] Amelia: Not a massive fan of the fact that it's like taking antidepressants or like things that are like, were initially created for like other people with not narcolepsy. But yeah, I think just that, like I've never really found, part of it is I think the side of me that's not super, super keen.

[00:19:25] Amelia: To take medication. And I think that's like kind of a blocker for me on one hand. And then I think it's the other part of like, where I have tried things, it's just not massively been beneficial. And so I think, yeah, it's like the two things together don't help that I'm like not overly keen to try tons of new things and yeah.

Managing Symptoms and Sleep Hygiene

[00:19:42] Liz: How do you manage without medication then? Do you have other strategies you've found that work for you, including things to help with other symptoms of narcolepsy? 

[00:19:52] Amelia: Yeah my cataplexy I thing I'm quite lucky is not so bad. It's very much like partial. I've never found that has [00:20:00] impacted me enough that I needed medication for the cataplexy.

[00:20:03] Amelia: I definitely have times where if I'm just like really tired, I feel like I'm just in like a constant. I don't know, catalytic state where I just can't quite stand up fully or like

[00:20:14] Kerly: Back to back. 

[00:20:14] Amelia: Could go, yeah. Could go at any point. But that's that's not the norm.

[00:20:18] Amelia: That's when I'm like really tired. Methylphenidate I do take during the day and I think probably does do something. But I think like my work is just now this transition has just been like so great because I think a 'cause I enjoy it, which is quite different. Definitely didn't enjoy like the whole, all the elements of the PhD.

[00:20:34] Amelia: So I think it's just like enjoying it, like having that thing that like actually keeps me going. And then again, like the added element of like when we are in the prison, like I literally have to be there and I have to be aware of what's going on and like also stand up and coaching. And then I think in terms of like nighttime sleep I, as much as I like try and bring in a routine and things like that's actually the one part that I've [00:21:00] not fully got in place. I think there's a lot of work that I could be doing to help myself sleep at night. I think the like sleep hygiene element is not quite there.

[00:21:08] Amelia: But again, like I think I'm quite lucky in that my symptoms are not like so bad that I like, feel like the medication is, sorry, as necessary.

[00:21:19] Kerly: Oh yeah. Mia's just saying that she's not very good with her sleep hygiene, but who is, that's the thing. Who's good with their sleep hygiene.

[00:21:25] Kerly: It takes a long time to get that under control. And I think what helped me with my sleep hygiene and probably this, it might be the same for Liz, is taking nighttime medication because you have to take it at the same time every day, and you have to leave a certain amount of time between your last meal and taking it if you want it to actually work.

[00:21:42] Kerly: Yeah. So that forces you to have go to bed the same time every night. It forces that on you. While before when I was on stuff like Clonazepam and stuff for nighttime, I could just take it whenever I want to go to bed, whatever time. There wasn't like this thing where, oh, you got to eat at six because you need your stomach to be [00:22:00] empty by 11. You order to take the, that type of thing wasn't there. So that forces you, . 

Self Compassion Mindset

[00:22:04] Liz: I have a question about your mindset, because you said that when you were diagnosed with Narcolepsy, you then could be kinder to yourself. And I'm wondering if that felt easy for you or if it's still a work in progress.

[00:22:18] Amelia: It's definitely a work in progress. I think I'm someone who's probably quite critical of myself anyway. But I think, yeah, so I definitely, and I think that is where it comes in. It's like making plans and then not going through with them or things like some, like really wanting to go to something and then like actually deciding that I'm not gonna go. I think I still have a tendency to look back on that and be like, part, I think it's like I've definitely become. 

Self Compassion vs Choice

[00:22:47] Amelia: More like lenient with my, with myself. And I definitely am kinder to myself where I'm like, okay, like you were exhausted. You have a different, system when it comes to tiredness than other people.

[00:22:57] Amelia: But I think I do still quite often, I [00:23:00] think I also still do find it hard to even divide the two. And sometimes I'm like, okay, but actually, like you could have gone you still made the decision not to go and realistically you probably could have gone and you probably could have got through it, but you decided not to go.

[00:23:14] Amelia: So I think it's definitely been helpful. And it's made me think more of okay, but actually, like if this is too much, then that's fine. But I think it's just still that element of being like, but you could have gone, like you still, you're still actively making that decision. I think it's that part I still struggle with a bit.

[00:23:30] Liz: Yeah, I can totally relate to that. . 

Friends and Hidden Pressure

[00:23:32] Liz: And how do your. How do your friends support you in that? Or do you ever feel like there is pressure or they don't understand? That's such a good 

[00:23:40] Amelia: question. And like all of my friends have been so great. And I think like even just the curiosity of asking questions and I think that side of things has always been like, I've always felt that was positive. I think where it comes into play is, it's hard to describe. I think that it's obviously having narcolepsy is [00:24:00] something that you have to factor into everything. And so I think, if you go out for a day or if you're like on holiday and you are, you've got like plans for that whole day. And I think, to be honest, this actually probably comes in more with my like partner and family.

[00:24:12] Amelia: But to me, like everything I do, I have to think okay, but if we're gonna do a full day, then actually I need to be able to nap in the middle. Or actually yeah, we can stop for lunch in the middle and I can have a rest. But realistically, like a full day of walking is actually a lot and that's gonna impact me tomorrow.

[00:24:30] Amelia: And I think it's things like that where I think it's really a lot to expect of someone else to also factor that into everything and to be like constantly thinking about it because I think that's like such an active thought process that anyone else would have to have. Whereas obviously for us it's just like normal.

[00:24:46] Amelia: But I think that's definitely where I sometimes get frustrated with other people where I'm like, okay, I have narcolepsy and you know what that means? But you don't necessarily think about it. And again, I think like I don't know if that [00:25:00] frustration's warranted because it's not, that's not like a normal thought process for most people, but I think that's where, as much as I think people are great and they're like curious and they ask questions. I think it's that element of it where just it just doesn't like factor into people's thoughts most of the time. 

[00:25:14] Kerly: Yeah. 

Explaining Spoon Theory

[00:25:15] Kerly: Have you ever tried explaining to them about spoon theory? 

[00:25:18] Amelia: Haven't actually. 

[00:25:19] Kerly: No, I haven't try it. You should try it because that helped me a lot because people, you are right, people don't seem to factor it in, but when you explain spoon theory to them, or battery theory, it depends on who you talk to. Some people might understand it better. I find the young kids understand it better if you use the mobile phone because they're so addicted to their mobile phones. If you tell them that you're on 5% or you're on 2%. You're about to die, then they get it like this. They can understand that emergency situation when they need to plug their phone in.

[00:25:48] Kerly: It's but yeah, if you explain someone spoon for you, then they, when they're thinking of the day and you like, so after I did that, then my parents and my sister was like, say, my parents were like, oh, how many spoons do you have right [00:26:00] now? Like, where are you at? And or if we did a big activity, they're like, oh, that's, do you have enough spoons left to do the rest of the day? Let us know where you're at. So try it. 

[00:26:08] Liz: Yeah, I will definitely. I love that point you made, Amelia, because I definitely find that as well, that most of my friends are really curious and want to know about narcolepsy. But then when it comes to like group situations, like holidays or days out, actually they're not thinking about it. That can be really frustrating for us, but also hard to know whether like we should expect that of them. 

Speaking Up and Boundaries

[00:26:32] Liz: How do you deal with that situation? 

[00:26:35] Amelia: Yeah, I don't know. I feel like I, it's probably something where a, I guess depends on who I'm with and how close I am with them. I think I can very easily go through a situation and just not say anything or not speak up or just go with things.

[00:26:50] Amelia: I think if it's like family or someone that I'm like really, I think that's when I tend to like hit a limit or reach a point where actually then I end up getting quite frustrated or [00:27:00] end up. But I mean I think it's hard 'cause I also have had conversations where I've been like, where I've spoken about exactly what we are speaking about and I've said this it like the, you don't re maybe you don't factor this in as much as you could and things like that. And then I think again, it's just something that, because it's not na, someone's natural like way of thinking. I think again, because it has to be so like, active, it would actually be really hard to change that without being the person that's, and maybe, maybe that's the answer, maybe it's like actually just bringing up that conversation myself on the day of, like that's, and I think I do to an extent of oh, this is actually gonna be too hard for me or whatever.

[00:27:36] Amelia: But I don't know., I think it varies, but I think it can go one way or the other where like just get on with it or actually then I hit my wit head and I'm like, no, this is actually not okay. . 

Advocating at Work

[00:27:44] Liz: And how do you find it advocating for yourself in general, whether that's with. Friends at work with people you don't know so well, I 

[00:27:53] Amelia: think actually funny enough, like coming into this was like my first kind of like job interview, like whole process going through with [00:28:00] narcolepsy. And I was, I very much brought it up almost immediately I think like in the interview process.

[00:28:07] Amelia: A because I think in terms of safety with the job I had to do it. I would've had to anyway. But I found that so beneficial, being able to actually talk about it. I feel, I think I feel quite confident and positive about just talking about it and how it does impact me.

[00:28:20] Amelia: And I think also going into work realistically if someone wasn't willing to , consider that or factor it into the work or. Then I probably wouldn't have wanted to be there anyway. So I think that was like such a nice sign of actually they're willing to work with me. I think it, and I had an extra, like three interviews or something, but it was all to do with how everyone could be up safe.

[00:28:40] Amelia: Like whether, like realistically they could put in what they needed to for me to be like, happy and comfortable and whatever. So I I think since diagnosis, like that has been so beneficial. And yeah, like very willing and happy to just talk it through with people. I think in terms of, yeah, it's a funny one with like friends and things, I think.

[00:28:58] Amelia: I guess I have a few really close [00:29:00] friends who like really know about it and we talk about it. And then I'm just thinking like recently having moved to London, it's definitely not something that I. Would tend to bring up with newer people that I met. I think it's definitely something that feels a bit more like personal and a bit more yeah, definitely something I would hold off on, like telling people I think.

Dating and Cataplexy 

[00:29:32] Liz: Did you find that when you were dating as well? 

[00:29:34] Amelia: I interestingly, so I'm trying to think. I think so. I, my partner that I'm with now, who I live with, it was like very close to when I was diagnosed that we, weird story, but we moved into a shared house together during COVID. And then we ended up getting together, but it was all like very close to the time.

[00:29:52] Amelia: Of when I was diagnosed. And so actually we went through that journey together of and it's such a weird thing 'cause it was like quite early on in my [00:30:00] journey and I hadn't had cataplexy for that long and that was quite new to me. And we we just laughed a lot and got on super and it the first few times where I just was like, this is so crazy.

[00:30:10] Amelia: And I just remember having cataplexy like the whole time. But because we went through it together and I feel like we were so I think yeah, can't really speak to dating 'cause I didn't really date since like really knowing I had narcolepsy or anything. 

[00:30:22] Liz: Yeah. 

[00:30:23] Amelia: Oh, that's quite sweet.

[00:30:24] Liz: So he was, or they were there throughout the process? 

[00:30:27] Kerly: Yes. Yeah. That's nice. 

[00:30:28] Liz: Yeah.

[00:30:29] Kerly: And so obviously he's supportive of it 'cause he was already a part of the journey. 

[00:30:33] Amelia: Yeah. Yeah, definitely. And I have way less cataplexy now that we've been together a few years. Way less cataplexy but still supportive.

[00:30:41] Liz: Yeah. Is that because you don't find them as funny anymore? 

[00:30:43] Liz: Yeah, maybe. I don't even know what it was like, I don't even know if it was like, because I was also like emotions around do you know what I mean? Like emotions around like liking him and other things like factory, I don't even know.

[00:30:53] Liz: Like still very funny and like very much enjoy tied together. But but there was like that chunk of time where it was like [00:31:00] very extreme cataplexy. So yeah. I don't know. 

Family Skepticism and Hurt

[00:31:02] Liz: Does narcolepsy affect your relationship with your partner and with your friends as well, or family?

[00:31:10] Amelia: Yeah. I. Definitely with my family. My family have not been like, particularly great about it. We, I think have like quite different views when it comes to like medical, just like medical issues generally. And I'm not like hugely keen on taking medication, but like family who are like really quite like against it, but also are very much if you are like eating the right things and whatever, like you'll be fine kind of vibe.

[00:31:35] Amelia: So like generally I've had quite a negative experience of that. And I think all of the kind of comments that you, that we have noted down of don't taste, don't say to someone with Narcolepsy, like that's the kind of vibe from some of my family members who, particularly family members who like, I.

[00:31:50] Amelia: I would've hoped to have got like the most support from. And just quite I guess quite like judgmental, but also along the vibes of it's not really a thing which like really [00:32:00] sucks. So that has been quite like a negative experience. And then with my partner, I don't think it probably like impacts much, obviously like the day to day and like logistics of maybe not being able to go out and do as much or like routine wise kind of shifting.

[00:32:15] Amelia: But I think in terms of like actual relationship, probably hasn't shift, changed that much. And then yeah, with friends, I feel like at the moment my friends are all dotted about and I don't have a core like, group of friends that I spend a load of time with so yeah, I guess in that sense.

[00:32:29] Amelia: Hasn't really changed much. Again, I think it's just like from my own side of things of not necessarily going to everything I would like to, and maybe feeling like I'm a little bit like flaky or which I dunno to be fair, I haven't asked like friends if that's something that they like feel, but I think yeah, that's probably like the main element of just not necessarily going to things that have been like planned by friends and things.

[00:32:49] Kerly: I think you don't have to worry about 'em thinking that you're flaky. This is when you know that they're thinking you're flaky. When they stop inviting you to stuff, that's when you, so if you stop being invited, you're good here. [00:33:00] It's when you stop getting invited and you start to worry that then they're thinking of things. They definitely think of things.

[00:33:05] Liz: Yeah. 

[00:33:05] Kerly: So as long as they keep inviting you, then that's good. 

Coping with Unsupportive Family

[00:33:08] Liz: The situation with your family sounds quite difficult. And I'm wondering how you manage that. 

[00:33:14] Amelia: Yeah, I think it is really sad 'cause it's the, it's something that I now like with certain family members just don't talk about.

[00:33:21] Amelia: Which I think is so sad because it's such a big part of my life and everything. And I think, yeah, even I think just like comments about, and I think it, and I think it is, it's those kind of comments of oh, are you still feeling tired? Or saying that I'm on medication and just such a negative response or things like, alluding to the fact that in a few years time it might be different 'cause my body's different and whatever.

[00:33:42] Amelia: And yeah, I totally agree that things change and, but realistically, like I do have narcolepsy and I think it ha yeah it has got to the point where other than logistically where it's like. Maybe we are together for the day and they know that I'm gonna need to take a nap, that's fine.

[00:33:55] Amelia: And like that we'll get spoken about. But otherwise, I think it is really sad, but it's just like [00:34:00] something that we don't speak about. And I think I'm someone that like really appreciates, like being able to talk about things and talk through things. So I think that's like a sad place to be in really.

[00:34:11] Kerly: So you've tried giving them like literature and stuff like that and they don't wanna read it? 

[00:34:15] Amelia: I think very early on, I the, it was just so negative from so early on that I, to be honest, I haven't but I don't know that it would help. I feel like it's more like a, not even like interested, not interested in also like having a view of what it means to have narcolepsy. That I feel like probably wouldn't change, but it's a good, it's a thought. Maybe I actually, maybe it is something I should do. I was just 

[00:34:38] Kerly: wondering because some people, when you tell them something, if they don't come to the doctors with you, they seem to have their own opinion or whatever.

[00:34:45] Kerly: Or maybe they might look it up and go to the wrong source for the information. And so by you giving them the correct literature, if there's someone who I did not, 'cause not everyone has a different type of brain. Some people think they're on things. Some people are [00:35:00] very into facts. They're people that are like that.

[00:35:02] Kerly: So you know, you might tell them something and they might see it as your opinion, but if they read it factually in a article or a journal, they'll be like, oh yes, of course this is right.

[00:35:12] Liz: But yeah. 

[00:35:12] Kerly: That must be very frustrating though. 

[00:35:14] Liz: What advice would you give to someone who has the same experience where their family just.

[00:35:19] Liz: Don't understand and aren't really making the effort to. 

[00:35:23] Amelia: Gosh. I think it's so dependent on like the relationship in the first place and things like that. I think I, I definitely do think that sitting down and like trying to have that conversation of like actually what narcolepsy is, what that means for you specifically. Like how I think as well and I think even I tried saying how much it had impacted me, the response that I had ha had been given.

[00:35:48] Amelia: And so yeah, I think it's probably quite a unique situation that I went through I mean I think the literature idea I think is a good one. I think, and I think as much as possible trying to have those [00:36:00] conversations if that's like a relationship where that is possible, to have someone like sit down and explain to you actually, like how it does affect you. But yeah, again, I think probably so dependent on like that relationship. 

[00:36:13] Kerly: Yeah. Some people have a way of, if you're going through something and they, and you tell them, they they listen and, but they're not really listening. And then say they meet someone else two weeks later and that person tells them the exact same story and they'll be like, oh my gosh, I can't believe that happened to you.

[00:36:31] Kerly: That's so sad. And it's like the same thing that you told them like, like two weeks earlier, but somehow they couldn't hear it when you were saying.

Beyond the Main Symptoms

[00:36:38] Liz: What would you like your family to know about narcolepsy? 

[00:36:42] Amelia: I think probably, and to be honest with everyone, I think it's like how much it impacts you outside of those like four symptoms. Cause I think it's very easy to go online and be like, okay, you have excessive daytime sleepiness and you have cataplexy, et cetera, et cetera. But I [00:37:00] think there's so much more to it. And I think, for me, I think, as much as obviously I get those like bouts of tiredness and really struggle without a nap and whatever, like I think it's the knock on effects of that.

[00:37:13] Amelia: So not being able to like fully concentrate, like not being able to fully focus, like when I was doing my PhD, if I had like really bad brain fog. It was almost like the words were just like blurry. And I still, to this day, I am like not sure if like partially they were blurry or if it was literally in my head or, and I think it's, no, it wasn't in your head.

[00:37:33] Amelia: Okay. Good to know. And I think it's like all of those things coming together that actually make things so difficult. And I think, yeah, as I said, I think it's very easy to like, see symptoms on a page and while feeling tired is obviously exhausting and so frustrating.

[00:37:48] Amelia: I think the, like all of those things coming together just make it sometimes so hard to just like function or get on with tasks that shouldn't, for other people aren't, are pretty [00:38:00] simple. , I think it's that, I think it's like all of those different things that come with those like full initial symptoms, and then again, I think the knock on effect of I think if you tell someone that you're like really sleepy during the day or you don't sleep very well at night, everyone can everyone's had that experience at some point, right? Or they've stayed up all night or they've struggled to sleep.

[00:38:18] Amelia: But then if you think about the fact that for, I don't know, 20 years or whatever, it's been like that every single day I think it's really hard for people to put themselves in that position because they've just not been in it. But I think again, it's like seeing outside the box of what the symptoms are and actually that is huge and impacts everything.

[00:38:35] Liz: Yeah. It's so much more than just, like you say the few main symptoms. It's our every day that we have to deal with it. 

[00:38:43] Kerly: And that's why I am like, not we're trying to make a new pamphlet because the, we've got to put in the other symptoms out there so people know it can't just be those symptoms that people think that it's about.

[00:38:57] Kerly: It's, you mentioned ones that it's [00:39:00] very impactful in people's life, like the concentration, the memory, the the brain fog. I remember we interviewed someone who had narcolepsy type two, and they don't have cataplexy, and this is what bothers them the most, not the sleeping, it's the brain fog, the tiredness, the not concentration. That is what is most disruptive of their life than feeling sleepy. 

[00:39:21] Liz: Yeah. 

Mental Health and Low Mood

[00:39:22] Liz: Has narcolepsy impacted your mental health?

[00:39:25] Amelia: Yeah, I would say it probably impacted me more before my diagnosis. Just in the sense that. I think it was like not really knowing what was going on. And I think feeling tired all the time, but also sleeping when I needed realistically to be doing. I think again, like going through academia, like I knew I needed to be doing things and I was just like sleeping.

[00:39:48] Amelia: And I think part of it comes from like just like being harsh on myself at those times. Part of it from not knowing what was going on. I think probably for a time during school and like a levels just was a bit of [00:40:00] lack of rubbish time. And during that time made me feel quite like low and feel like there was like something just not quite right or like I wasn't.

[00:40:09] Amelia: Like enjoying life or I wasn't really enjoying what I was doing. And I think there are so many different factors in that, and I think part of that you also just like really wasn't enjoying a levels and whatever at that time. But yeah, I think definitely. And then I think I guess like day to day everyone has like ups and downs, but I think like definitely in terms of just I guess all the time to an extent.

[00:40:32] Amelia: Like just not, yeah, I don't know. I guess it's the kind of feeling when you like wake up after having been asleep for a few hours or I think it definitely impacts me. I'm probably quite lucky in that, like I still really enjoy a lot and like I'm able to get out and do fun things and but it definitely gets, I guess gets me down is probably a good term for it.

[00:40:52] Amelia: I definitely get quite low I think it is quite often that it's like missing things or like spending a lot of time [00:41:00] asleep and then waking up and just feeling really like crap and low of like what my like doing.

[00:41:06] Liz: How do you deal with those harder times?

[00:41:08] Amelia: To be honest, probably haven't fully found a way of I guess dealing with that. I think I'm lucky in that I. Do you have people I can talk to? I also I live with my partner. And so I think I'm still able to do other things and do fun things and talk about it. But to be honest, I think I've not like fully found a way out of that. 

Finding Joy and Balance

[00:41:29] Amelia: at the moment I'm still doing kind of some projects outside of work. They're related to my PhD and I think that I'm finding really hard 'cause I'm having to do it out of work time.

[00:41:39] Amelia: And for me what probably is really important is in the evenings and on the weekends, like doing things. That I enjoy and that give me life. And at the moment I'm just not quite able to do that. And I've realized more recently how important that is. And so I think that once I can get other stuff just like out the way, I think that will just be so important.

[00:41:58] Liz: I actually like that you said [00:42:00] that sometimes you just feel low and you don't know how to get out of that, or you haven't found consistent ways because I think a lot of us feel like that. So it's really nice to normalize that actually sometimes you do just feel bad because you've had a bad day or you've had you're feeling extra tired and it's okay to just , allow yourself to feel that way and not feel like you have to fix it. Like just feel the feelings.

[00:42:24] Kerly: Yeah, definitely. A hundred percent. I gonna say, my doctor last year, she was saying to me , if I had low mood, and I've had narcolepsy since I was 15 and I'm 41.

[00:42:33] Kerly: So I was saying to her, no, not really right now. I wouldn't say that I'm depressed, but yes, I have an underlying low mood. Naturally it comes with an narcolepsy. It's absolutely fine. I can live with it. It's no problem. And she's oh, no Kerly, we can make you happier. And I was like finding it very funny.

[00:42:52] Kerly: I was just like, why does she want me to be happier? I'm not depressed right now. I'm doing things, activities that I enjoy and I'm getting on [00:43:00] with my life. So I actually am not depressed. But there is an underlying low mood. It is naturally comes with narcolepsy and I don't see that I need to do something or take medication to up my moods to make me happier.

[00:43:12] Kerly: I don't think that's necessary. It's okay to have this as part of narcolepsy. You are not sleeping at night. You can't be happy all the time. This is how the function of chemicals in your brain work. 

[00:43:23] Liz: Yeah. It's so true. I also think, I like how you both said about doing things that you enjoy because I think a lot of people work that out as they get into like their late twenties.

[00:43:34] Liz: We've all tried really hard to go into careers and then it's actually I just wanna have a nice work-life balance and do the things that I enjoy and it's the little things that like really do make me feel good. For people with narcolepsy or any kind of chronic illness, I feel like you work that out a bit sooner because you have. Less time and less energy. So it's really about doing these little things that just fill you with joy that you can access.

The Red Button Question

[00:43:58] Liz: So I like to [00:44:00] ask all the guests this at the end of the show. If you could press a red button and never have experienced narcolepsy or cataplexy, would you press it and why?

[00:44:09] Amelia: I feel like you probably want the answer to be that I wouldn't press it and I've made my life narcolepsy and 

[00:44:17] Kerly: No, you want your honest opinion. Whatever it is, there's, no judgments here.

[00:44:21] Amelia: Do, you know what, I think I would probably press it. I think that there's not much that's happened because I have narcolepsy or there's not any kind of like route that I've taken in my life because of this, or and I've definitely like thought about doing things that are related to, advocate for people with narcolepsy or writing a blog or would love to also do something like that.

[00:44:44] Amelia: But as of right now, unfortunately a lot of my narcolepsy experience is just that, the negatives of it. And I think very much have learned to live with it but I think if I could not have Narcolepsy, I would probably choose not to have narcolepsy.

[00:44:59] Amelia: I'm sure a [00:45:00] lot of people will relate to that answer. 

[00:45:01] Kerly: And you also have to give yourself grace in me. You're only five years into your journey. 

[00:45:05] Liz: That's true. That is true. 

[00:45:06] Kerly: Yeah. 

[00:45:07] Liz: Yeah. When you're 25 years in Kerly 

[00:45:09] Kerly: Yeah if someone had asked me five years in, I would've said, yeah. I wouldn't even have blinked. I would've been like, of course. Yes. 

[00:45:17] Liz: Get rid. 

[00:45:17] Kerly: Get rid man.

What Narcolepsy Has Taught Me

[00:45:23] Liz: Is there anything that you have gained from Narcolepsy, do you think?

[00:45:27] Liz: And again, no pressure 

[00:45:28] Amelia: I think as of right now, probably like nothing that I like, really feel like I've gained. I think it's given me like a very interesting perspective on like disability and on how different people navigate life and how I think, had probably quite like a just quite I guess had quite like a sheltered upbringing of things going right being there for me.

[00:45:53] Amelia: And I think. It's super interesting to just have this kind of perspective of like disability. I'm [00:46:00] in a very lucky position where I'm able to work and I am able to do most like function and do most things that I wanna be able to do. But I also have met a lot of people who do really struggle to work or actually that is too much for them.

[00:46:13] Amelia: And I think things like, even just like on the like narcolepsy kind of Facebook group seeing like the different like struggles that people go through and like actually how difficult it is for people to even prove that they have narcolepsy or get a diagnosis or get their, like disability approved.

[00:46:29] Amelia: I think, it's definitely a very different perspective to be able to see that. I think be also have just met so many really like great people through narcolepsy that I would never have met before.

[00:46:40] Liz: Like me and Kerly obviously Yeah.

[00:46:42] Amelia: Through like different groups and things, but I think in terms of like how it's impacted my life and things generally so far feels quite negative. But we will see, as you say, we're only a few years in. 

[00:46:56] Liz: Thank you so much for sharing your story with us. It was really [00:47:00] interesting and it's really nice to hear just different people's opinions on all these different things. So thank you. , Thank you very much. 

[00:47:07] Kerly: I, as I always say, it's, that's what's beautiful about hearing everyone's different story. ' cause everyone that's listening. Comes from a different walk of life and you might think, oh, my story's not being someone else or whatever, but there's something about your story that's gonna resonate with someone else out there.

[00:47:21] Kerly: And and that's why it's, that's why it's always good to share your story because there's someone out there that's, they're gonna be like, oh my gosh, that's me.

[00:47:28] Amelia: Thanks for having me. 

[00:47:29] Liz: Oh, you're welcome. We like to end the show by saying, happy, napping everyone.

[00:47:33] Liz: So we'll say it all together after three. 1, 2, 3. Happy napping everyone.

[00:47:39] 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 [00:48:00] have access to Narcolepsy, navigators, discord server, where you can chat with other navigators, find support, and ask questions.

[00:48:08] 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 naps four life.com. Thank you very much for your support.

[00:48:35] Kerly: 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 [00:49:00] website www.napsforlife.com.

[00:49:04] 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 narcolepsy navigators@gmail.com. You can also support us by donating at the websites. Happy napping everyone.