Episode Transcript
00:10 - Kerly (Host)
Hello, welcome. You're listening to seasons one of Narcolepsy Navigators brought to you by Naps for Life Narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Keri Boger, the founder of Naps for Life Narcolepsy, and welcome to our stories. Hi everyone, and welcome to Narcolepsy Navigators. Today we are interviewing Natalie, from Germany, and she is a mother and a teacher, and hosting today is myself, kierley and me, liz. So, liz, how was your week?
01:00 - Liz (Co-host)
My week was good, thank you. I've actually just started a new job, so it was a very tiring week. There was a lot of naps after work, a lot of yawns throughout the day. It was very full-on, lots of processing of information and learning everyone's names. But I'm feeling a bit more rested now. I've had a very quiet weekend. How was your week, caroleoley?
01:22 - Kerly (Host)
my week was productive, back at college, getting back into sort of the swing of things, because after christmas I was unwell, I had this bug that was going around so I hadn't been back to class, and then I had some bereavements in my family, so then I wasn't back at class, so it's like getting back into the study mode of everything. Yeah, and I started new medication this week. I'm on wednesday, I'm on wicket, oh nice. Yeah, it's just the only medication left that I haven't tried, so I'll see how that goes how are you finding it?
01:52
yeah, they said it takes a while to kick in, so it's only been a few days are you on the lowest dose? Yeah, I'm at the lowest of seven days of one tablet, then the next week two tablets and the next week three tablets, until you get to four tablets. Yeah, I've never seen tablets so small.
02:07 - Liz (Co-host)
They're so tiny, yeah they're like this big, so quite interesting. Well, I hope it works for you. Yeah, me too. And how was your week, natalie?
02:15 - Natalie (Guest)
oh, my week was very busy. I had a lot of appointments, my daughter had a lot of things to do for school, so I basically just slept the last two days.
02:25 - Kerly (Host)
Oh, that's nice catch up, yes me too.
02:28 - Liz (Co-host)
Whereabouts are you from in Germany?
02:30 - Natalie (Guest)
I'm from the south. It's quite chilly here right now, but no snow, as you might think.
02:35 - Liz (Co-host)
Can you tell us a bit more about your journey with narcolepsy and when you were diagnosed?
02:40 - Natalie (Guest)
My journey with narcolepsy probably started when I was 28, 29. I'm now 42 years old, so about 14 years of having it. I do not really know what was the reason why I got it, but I lived in Mexico at the time where the swine flu broke out and I don't know if I maybe had it because it was a quite chaotic time when nobody knew what it was and how to diagnose it and all those things Kind of similar to what we've been through all over the world in the last couple of years. But since there is people who got the proof that they got narcolepsy or their outbreak of narcolepsy because of the swine flu vaccination, I probably had a virus and that's what set it off.
03:27
I wasn't diagnosed for the first 11 years of having it. I just got more and more tired. It was all getting more difficult. I was not able to work full-time anymore. I was always annoyed, always exhausted, and since I noticed that I fall asleep whenever I sit down, I didn't sit down anymore. So I basically burned myself out to some extent. I got diagnosed in 2021 after having been to a sleep lab, being diagnosed with sleep apnea but not having any improvement in my symptoms after having had that apnea treated. My sleep doctor didn't have any clue what he could have looked for other than that, and I listened to a I think it was a psychiatrist that talked about different sleeping disorders, and five minutes of his time he spent talking about narcolepsy, giving names to the symptoms of narcolepsy, and every single word he said was like an eye opener for me, because it was like oh, I have that. Oh, that's how it's called. Oh, wow, I have that too. So I looked for a sleep lab that did the MSLT and I was diagnosed with textbook narcolepsy.
04:49 - Liz (Co-host)
Wow, what a journey. And what was that like having a relatively sort of normal able-bodied life until your late twenties and then suddenly experiencing the symptoms of narcolepsy.
05:03 - Natalie (Guest)
I consider myself very lucky that I had 28 years of being able to do basically whatever I wanted to. I always worked hard. I told my friend the other day that I can't believe that my school bus left at 6.30 in the morning. How I managed to get up and go to the bus, drive to school for more than an hour and then spend all day there is beyond me, because it's unimaginable nowadays. But it was the reason why I got a successful school. I have my graduation. I was able to study. I became a teacher. I worked as a teacher for two years and then things got gradually difficult.
05:49 - Liz (Co-host)
And how did you find that it affected your career?
05:54 - Natalie (Guest)
The biggest issue is not even the falling asleep. The biggest issue is the cataplexy. That's the one symptom that I hate with passion, more than anything. It didn't start until 10 years in, so I only have it for the last three, four years, but it gets worse and worse.
06:13 - Kerly (Host)
Very interesting because a lot of people don't realize that you can develop cataplexy later. They feel that so when a person is diagnosed, you should have had cataplexy at diagnosis. That so when the person is diagnosed, you should have had cataplexy at diagnosis. So that's like someone being diagnosed with narcolepsy type 2 and then not realizing and then later on developing cataplexy and then a doctor or a physician saying no, you can't have cataplexy because you have narcolepsy type 2, when it just was a late onset and then it came I think I'm the best proof for that.
06:43 - Natalie (Guest)
Yeah, had I been diagnosed earlier, they would have called me a type two. It started with very, very small buckling of my knees when I was laughing out loud and I didn't make much of it. I thought maybe it has to do with my veins, because they're not the best ones, and then the blood pressure is changing, or something like that, once and then the blood pressure is changing, or something like that. I don't know what I thought, but I didn't get worried until it was worsening.
07:13
And I'm not at that point where I fall down or where I'm paralyzed for half an hour, which is those are stories that just horrify me. But I do notice that there are more emotions evolved. I do notice that when I get angry fast, for example at school, something really annoys me and I speak to my students, I have to stop talking because everything drops while I talk and I just I hate it that there is positive emotions mostly in my case, positive emotions being connected to it, because it just seems so unfair how someone would suffer for laughing, for being happy. That is something that I'm struggling with.
07:58 - Liz (Co-host)
And, would you say, for you. So the cataplexy has a bigger impact on your daily life than sleep attacks or fatigue.
08:08 - Natalie (Guest)
I do think that over the course of the last 14 years I changed my life a lot. I made a lot of accommodations in any possible way, without noticing or without knowing why I do that, and so I have the sleep attacks under control. But if I skip naps, for example, because I often have to take them when I have the time for it and not when I feel like I need them Whenever I skip them, my cataplexy gets worse immediately. So that is something that backlash is very quick.
08:46 - Liz (Co-host)
I need to to make sure that that doesn't happen and, as a teacher, do you get time for planned naps in school?
08:55 - Natalie (Guest)
a couple of years ago they put me on partial disability I think that's the best way to put it. So I only have to work 50, but I get a little bit more money than that because otherwise I couldn't pay everything that I have to being a single mom. And my principals, who are the ones doing my schedule, they quickly understood that it's a win-win situation if they give me some accommodations, that it's a win-win situation if they give me some accommodations. For example, after two lessons I have a break. I mean, as a teacher you cannot just take a 15-minute break, so it's a whole lesson that I have nothing in, that I can go to a quiet room where there is an armchair where I rest, where I fall asleep in. But if they didn't do that, it would backfire because I couldn't follow teaching or on the bad days I probably wouldn't even be able to go to school at all. And so we found a way how to balance that, how to distribute my hours evenly so that there is enough opportunity for me to rest.
10:07 - Kerly (Host)
That's really good.
10:09 - Natalie (Guest)
Yeah, I'm very, very lucky.
10:16 - Liz (Co-host)
And what is the general attitude towards or understanding of narcolepsy in Germany?
10:22 - Natalie (Guest)
I was shocked, not only here and in my country, but having met so many narcoleptics from all over the world or from mostly from countries like England, america, australia how many sleep doctors have no idea what narcolepsy actually is.
10:40
If I go to my GP, I can't expect him to know every single detail about that disorder.
10:46
If I meet someone on the street or my relatives, I cannot expect them either to know everything that I know, but that sleep doctors dismiss symptoms, don't even know what an MSLT is. That is so sad and happens way too often, and it was the reason why my diagnosis was ultimately delayed for three more years as well. If I speak to my friends, my family, people that I confide in, they are usually, I think, sad, like they wish me to be well. They don't understand that something can connect to emotions and make you get symptoms that are connected to what you feel like or what you feel, and they thankfully accept when I tell them that I've reached the end of what I can manage right now and I need a break that's good, so you feel like the people around you, your immediate family and friends have some kind of understanding of it and can support you in that they will never know how it is to have narcolepsy, because I'm convinced that only narcoleptics can really understand what it feels like but they are understanding enough.
12:08
I was advised strongly against sharing my diagnosis, though, with my principal, my students and their parents, and that's why they all don't really know oh interesting, so even though your school have given you reasonable adjustments, they don't actually know.
12:26 - Liz (Co-host)
Oh interesting, so even though your school have given you reasonable adjustments, they don't actually know the main reason for those adjustments.
12:32 - Natalie (Guest)
With my principal. I've been talking with her that I have an issue with tiredness, with daytime sleepiness, and since COVID I figured that people are quite more understanding when you talk about exhaustion because long COVID or the people who have long COVID they got hit with a problem that that was not their fault, that just appeared out of nowhere and it's a little bit like what narcolepsy can be like. I don't want them to start to Google narcolepsy and figure out what cataplexy is. I don't want them to think that I have nothing under control anymore.
13:17
And most of all, I don't want them to think that I am under amphetamines or something like that, because the topic of medication is quite sensitive one the parents of our students. I think that issue exists with teachers worldwide nowadays. We get attacked for everything, we get blamed for everything. There is so many things that they try to make us not only feel bad about, but they go to our principals, they go to the police, they go to the highest departments of education to proclaim about single teachers and in many, many cases, the reasons are either non-existing or minor, and I don't want to offer more possibility to be attacked that must be really difficult to feel, like you can't be open with your um, your team at work it.
14:22
It kind of is. I mean, there is two of them that know what's going on. Those are the ones that are. They're not co-teaching with me, but whenever I leave their classroom they come in and vice versa. So, um, I feel better knowing that there is someone who knows that, for example, if I should ever fall over and have cataplexy, not being able able to move anymore, that it could be something else but a stroke or whatever.
14:51 - Kerly (Host)
So, Natalie, do you have any children?
14:55 - Natalie (Guest)
I have a 14-year-old daughter.
14:57 - Kerly (Host)
yes, and how does she manage with your narcolepsy? How does she cope with it?
15:09 - Natalie (Guest)
she manage with your narcolepsy? How does she cope with it? Again? I think not only me but only also her were kind of lucky that for the first years of her life it didn't affect me as much. I can imagine having a baby or a toddler around me now. That depends on me being alert at all times. She struggles a lot. She's got issues with her mental health. She was diagnosed with autism spectrum not long ago. So she needs me quite a lot and at the same time she needs to. I accept that sometimes I'm just not able to do what I want to do or what she needs to do, that I'm not in control of being. I don't know able to sit down and study with her at 9 pm. Maybe I can at 11 pm, but not at a certain time. So it's getting harder.
16:04 - Kerly (Host)
It's getting harder for me and it's getting harder for her you think it's getting harder for you because you think the narcolepsy and the cataplexy is changing and it's getting worse it's been gradually getting worse since I started having symptoms.
16:18 - Natalie (Guest)
so not only the cataplexy coming into play, but also how long I need to nap or what I can still do or how far I can still go away from home with safely coming back home and stuff like that. So it does get worse, but also I need to accept that my boundaries are changing, that I need to say no or that I need to make less plans or that I cannot visit who I want to if they live too far away, those kind of things and, frankly speaking, sometimes that's depressing.
16:58 - Liz (Co-host)
That's true. Yeah, I completely got that.
17:00 - Kerly (Host)
Yeah, I agree.
17:02 - Liz (Co-host)
And have you found any medication to support you in that? From what you said, it sounds like there's almost a stigma against certain medications in Germany, particularly from your employers.
17:18 - Natalie (Guest)
I wouldn't say that there is no stigma against medication, but I mean, we all know that the medication for an epilepsy are the big guns which are under some certain laws. I don't know how they are called, but yeah control drugs.
17:35
I think me as a teacher, I have to be even more careful. Whom I tell that I take that, because they don't. They wouldn't necessarily understand why it works different in a brain like mine. My personal issue with medication in general is that I've never taken any drugs. I've never taken any medicine, I've never drank any alcohol and I never even smoked a cigarette in my life, so my body is not used to a lot of those things.
18:11
Effects that I get when I take medication, especially when it's the normal dosage, are often very strong. So I did try Vakix two years and I had a horrible reaction to it. It was almost anaphylactic, like the whole range of side effects that were listed in the paper, and I didn't understand why. Now I think I do know, because I developed a histamine or a mast cell activation issue and Vakix works with histamine. So that would be basically the only medication that I couldn't take besides Cyram, because probably no one would give it to me because of the sleep apnea. But I haven't tried something else yet. But I haven't tried something else yet and I think the most important issue would be something that controls the cataplexy rather than the sleepiness. I do have an appointment with a specialist, an arculopsy specialist, at the end of March. I have to travel through half the country for that sleep in a hotel so that I can be there on time, and I hope that he can give me some information about which kind of medication would make sense for me to try out.
19:41 - Kerly (Host)
Oh, good luck with that. I look forward to hearing what he says.
19:45 - Natalie (Guest)
Thanks, it's just. My kind of insurance requires me to first of all go to the doctor and get the follow-up recipe, to go to the pharmacy and order the medication that they often don't have on stock, then to go pick up the medication, to pay for it by myself even if it's four or 500 euros a month and then send in the bills from the pharmacy to two different insurances in order to get the money back. Wow, and to do that every couple of weeks, plus to think about taking the medication every day at the same time. To think about taking the medication every day at the same time that is something that quite honestly overtaxes me, even thinking about it, because once you start it, you cannot mess it up. You cannot just stop taking it or forget about it or whatnot.
20:38 - Kerly (Host)
So I yeah it's crazy that there's so many barriers to getting the medication I was gonna say you'd think that they would have it so that once you filled out the first forms then that would be it. But to think that every month you'd have to do the same process over and, over and over again, it doesn't really seem to make a lot of sense. Yeah, we're very lucky here in the uk, aren't we liz? That we don't have to do that.
21:04 - Liz (Co-host)
Oh my gosh, that would be so stressful every every month, oh my god and it's so trial and error with medications as well, so you can go through all that effort and try a medication and then actually after a couple weeks or a couple months you realize it's not for you and then you have to start that process again with trying something else. And at least for us in the UK it's a lot easier because you have a doctor or a pharmacist that you're in constant contact with or regular contact with. But it sounds like, yeah, that's much more of a challenge in Germany, where you'd have to jump through all those hoops.
21:39
Yeah, it is oh, and how do you find it managing your own needs and your own energy levels?
21:58 - Natalie (Guest)
whilst also being a parent at the same time. I'd like to quote a friend of curly and mine, bernadette, for that, because she said something very wise. I don't know if it sounds arrogant it's not supposed to be arrogant at all but Bernadette said something, or someone knew that I'm the only one in my family who would be able to handle all of that and that's why I was the one getting the narcolepsy, and not my kids or parents or spouse. And I say the same.
22:29
I consider myself a strong person. I am used to roll up my sleeves and just do the things that have to be done. I have a high drive of pushing myself to do things that are necessary, even if I don't want to or I can't. But the narcolepsy is like hitting the brakes. I often feel like I'm a robot that gets shut off and on, because while I sleep or I have to sleep for an hour I'm like shut off from the world and everything around me just goes on. And then I get turned on again and follow doing what I was doing until I need to plug in or or shut down again, and that is.
23:11 - Kerly (Host)
That is just yeah that's a really good analogy. Yeah, I never thought of it like that before. But yeah, wow, a robot.
23:18 - Liz (Co-host)
Yeah, being turned on and off have you found any strategies that work for you whilst you're not taking medication?
23:26 - Natalie (Guest)
I have, in fact, changed my whole life around to 180 degrees over the past couple of years. I've been divorcing from my toxic ex-husband. I've been changing workplaces closer to home. I've been changing to part-time instead of full-time. I've been changing my diet drastically. I've been looking for answers to the comorbidities or the other health issues that I have. I've tried to fix my nutrient levels. Those were an important part of it, because they were so abysmally low that I was probably more tired because of that than anything else. I've tried to get a support system where I could, which now sometimes that's easier than other times and I've tried to set priorities. My house is not the cleanest one because my household is not number one on my priority list I think all people with narcolepsy can relate to that.
24:30 - Kerly (Host)
Yeah, sometimes you have to choose. It's like do I cook dinner or do I wash the dishes, do I have a shower or do I clean the litter? You have to choose and yeah, sometimes it's very obvious which thing has to go first. Do I iron my clothes, or I stopped ironing my clothes after the last time I ironed. I just buy clothes that don't need to be ironed anymore. And when I think back when I was younger, I used to love ironing. I would spend all Sunday like ironing. I enjoyed it.
24:58 - Liz (Co-host)
And now you couldn't even beg me to iron something, no, I forgot to do it yeah, I want to know more about the nutrient side of things as well, because I think I do hear quite a lot that people with narcolepsy should cut out carbs. But I find that quite hard because I, firstly, love carbs and secondly, the medication for me makes me lose weight and makes me hungry all the time.
25:21 - Natalie (Guest)
So, yeah, it'd be good to hear from you, like what you've kind of found out about all of that what carbs are, in my case, probably having to do with the weight, because I'm overweight, but they are not what makes me tired. When I was still able to eat sweet, I could eat chocolate and not get tired after that, but when I ate a salad I fell asleep because there is stuff in green salad that actually makes sleepy and I don't make that up. You can look it up if you want to.
25:52
So, those are things that I didn't know.
25:54 - Liz (Co-host)
Wow, that's amazing. So that's a good excuse for me not to eat salad Well at least not if you have to be alert and full of working right now. So what is it in those foods that makes someone more likely to feel sleepy?
26:09 - Natalie (Guest)
Well, I don't know if everything that is valid for me works for everyone else, because I do also have that histamine issue. But when I first changed my diet I cut out wheat, but I do well with rye and salt. I cut out the sugar, the sweets, as much as I was able to. I started to eat a lot cleaner. So I did not buy yogurt with fruit, for example, I bought natural yogurt and put my own fruit in it. Or I don't eat processed food at all anymore, like the most processed things that I eat are pasta that I cook by myself, but everything else has as little ingredients and as organic ingredients as possible.
26:56
And the histamine issue is a very complicated one, like sometimes I'm really struggling with it because, for example, strawberries and raspberries are high in histamine but blueberries are not. Those are things that you cannot just logically remember. You really have to dig into it and find out. But since I eat low in histamine, my tiredness got better as well. Oh wow, high in iron helps a lot. And I try to eat not later than 6 pm Because, as I learned, that Oryxin mess in our brains can also mess with digestion and all those things having to do with it, and so I would get a stomach ache in the middle of the night and not be able to sleep because of that, which, as we all know, is the least you need when your nights are that messy anyway.
27:53 - Liz (Co-host)
Yeah, so because you have the histamine condition, foods that have more histamines in affect your tiredness more.
28:02 - Natalie (Guest)
That right not only the tiredness there is a whole, a long list of symptoms that are possible when I eat something high in histamine but also the tiredness. So it would be like a a positive effect when I cut it out, that it also didn't make me more tired. And when I eat salad, I indeed only eat it when I can sleep afterwards, when I have to so you have that kind of extra complication of trying to work out how to manage both conditions together yeah, and it makes me even more sensitive to medication, which is definitely an issue like.
28:46
I'd had to cut way kicks in two and as you just figured out how tiny they are.
28:53 - Kerly (Host)
It's so tiny impossible wow, if you can't imagine trying to cut that little tablet into yeah, I can't even get them out the bottle.
29:01 - Liz (Co-host)
Sometimes they're so small wow, yeah, those are the things that are extra complicated that I don't really need, but I have to figure out how to deal with it yeah, and I think quite a lot of the people that we've spoken to do have other comorbidities or conditions alongside narcolepsy and it can just, yeah, make it more, more complicated. You kind of wish that narcolepsy. You know you have that and that's all you have. That's all you have. You're not given any other problems to deal with.
29:31 - Natalie (Guest)
But, yes, it's not always the way, unfortunately that's something that, yeah, I've I've struggled with as well, because when I was getting diagnosed with narcolepsy, I already had the diagnosis of sleep apnea. So it was clear that I have both, and my doctor made it sound like I was one in a million that that happens too. But, as I figured out, most of the narcoleptics that I personally know do have sleep apnea and narcolepsy, and a handful also have restless leg syndrome.
30:04
Yes, so when I started to have nerve pain in my feet a couple of months ago and I slept even worse at night, I was like no, please, please. If you have the trifecta of sleeping disorders, what can you still do? How can you still be able to go to work in the morning? How can you not go crazy from from sleeping, uh, from sleep deprivation? So that was something that I really hoped that would not be the case, and a couple of weeks ago I figured out why my nerve pain was that bad, which was a reason that had nothing to do with either of it and was so surprising. But I'm so happy that I got an answer oh, well done.
30:48 - Kerly (Host)
Is it something that you'll be able to fix?
30:50 - Natalie (Guest)
yeah, you wouldn't believe it, but it's electromagnetic radiation from all the electronic devices around us. When I turn them off, I don't have nerve pain wow, I've never heard of that either. That's, that's so interesting well, it's kind of annoying because of course it's everywhere around us. Everyone's got more than a handful of electronic devices and everywhere in the air, that is. But if I have my wireless on and my daughter with all her electronic devices and I have a cell phone in my hand. It gets worse, a lot worse.
31:26
So at least I can do something about the amount of radiation that is in my own apartment.
31:34 - Liz (Co-host)
Yeah, and is there a good community around you in Germany of other people who have narcolepsy as well? Are there things like conferences or meetups that you can access?
31:46 - Natalie (Guest)
There is a Facebook support group. There are several local groups that meet up. I did go there before I met everyone else, before I went to Facebook and looked for a group, before I met everyone else, before I went to Facebook and looked for a group. But the lady who organizes it she's got the worst case of narcolepsy that I've ever seen, and so she didn't respond anymore to my emails when I asked when or where they would meet up or how that would work, because for an amount of time they met online when everything was closed, and so I was very, very, very happy to find an alternative, and even more happy when I found Curly, that's so nice.
32:25 - Liz (Co-host)
Yeah, I think it's so important as well to connect with other people who have narcolepsy, because it just just have that shared understanding instantly.
32:38 - Kerly (Host)
Yeah, and like when you were saying that your doctor made you feel like the having narcolepsy and sleep apnea was like a rare phenomena, which annoys me a lot because I have five sleeping disorders. And I remember when I said to my when I started to get more, and I said to my doctor what is happening. And he says to me yeah, when you have one sleeping disorder, you're, you're very likely to have more. And I said, well, why didn't you say this to me when I was 18 years old? And he's like, why would I say that to an 18 year old? Why not? Like, why are you holding the information to yourself?
33:11
Yeah, and then later on, when I think the narcolepsy is getting worse and I have to go and have another sleep study done, then you're like, oh look, you've got sleep apnea now. Oh, look, you've got restless legs now. Oh look, you have rare behavioral disorder now, you know. Oh, look, now you have product limb disorder. Oh, who knew that there were more and more and more that could be added to this list? Like, seriously, I think they should be more honest and say that there is a possibility that these things can happen, so that you're not like in shock when they do.
33:45 - Liz (Co-host)
And also maybe looking out for side effects of other conditions as well.
33:49 - Natalie (Guest)
I think one of the main issues is that, even if it's a specialist, even if they get visited by, let's say, hundreds of narcoleptics over the course of their career, mostly doctors meet one, five, let's say 50 narcoleptics. Some never do the amount of information that they get I mean plus many doctors, let's be honest, they treat us like we don't have anything to say in that process. But I do think that doctors and patients have to be a team, because the doctors are the ones who hopefully can provide us with their medical knowledge, but we are the ones who can provide them with the knowledge how it is to live with that disorders.
34:36 - Kerly (Host)
How are you feeling on a?
34:38 - Natalie (Guest)
if there were more sleep doctors joining the support groups. I think the biggest one that I'm in has got 30 000 narcoleptics and their families worldwide.
34:49 - Liz (Co-host)
That is a pool of knowledge that is gigantic and they could learn so much I heard a really cool phrase the other day when I was doing a training at work about learning disabilities, and the phrase was expert by experience. And so basically, when you have a health condition or learning difficulty or anything really that makes you an expert because you are the one experiencing it, which I thought was a really cool way to talk about that.
35:18 - Kerly (Host)
Yeah, you become a patient expert?
35:20 - Natalie (Guest)
Yeah, I mean I don't go to a doctor because I want to be entertained. I go there because I hope that they know more than I do. They provide me with the knowledge that I need. But if they don't know what's going on with me because they don't listen or they don't ask, or they only know what I tell them and not what basically every other person with narcolepsy would say as well, then there is a an important part of information missing yes, and then you feel almost like your time's been wasted doing that.
35:57 - Kerly (Host)
It's like you think, oh, do you know how much energy it took me to get up to shower, to take the train or the bus to get here? I'm super tired, I'm exhausted. And then this is what you have to say, like seriously, like you don't have more information than this yeah it's hard.
36:13
We need more research in the area of narcolepsy and medications to know how to best support everyone and yeah, and also listening just them listening and really listening to what people are saying, what they're living through, and really taking that information on board, because you know that is the key but that's why I am so glad that those support groups exist.
36:37 - Natalie (Guest)
I think it's a blessing that we are able to communicate with people all around the world, and even if you live in the tiniest village in the middle of nowhere, you can talk to someone that is somewhere else having the same medical issue than you do, and it makes me happy how many people got answers that got them closer to being diagnosed or closer to being able to deal with one of those issues. Then they leave with more ideas or knowledge or addresses or whatever than they came with, and so that support group is really what it's called a support group yeah definitely.
37:16 - Liz (Co-host)
I was hoping to ask you a question which I have also asked Carolee in the past and a few other people on the podcast If you could remove narcolepsy from your life by pressing a big red button, would you do it? And if so, if not, why?
38:05 - Natalie (Guest)
That is an interesting question. I think I am the happiest, like really the happiest, when I can lay down in my bed, shut off the light, don't have to set an alarm clock and go to sleep. So sleeping is not a a curse. The only curse is that I cannot choose always when I need that or when, how, how long I need that. So I think I keep it with Bernadette rather me than the people around me that I love beautifully said, and is there anything that you're grateful for from having experienced narcolepsy?
38:25
I've learned to listen to myself and to my body because for years on end I ignored everything that came from it. I just pushed on, I just kept going, tried to push down everything that felt uncomfortable. And now I am so in tune with myself because I have to listen to even the tiniest signs of getting tired or overdoing things and then getting cataplexy, or how I have to take care of myself that I'm able to leave the house and get back safely, and those are things that are much more healthier than what I did before.
39:09 - Liz (Co-host)
I agree. I think that's such a gift that having a long-term health condition gives you that. Other people who are able-bodied don't necessarily learn, or it takes them a long time to learn. I see a lot of the people around me just getting burnout or overexerting themselves, but it's something that we've all had to learn very quickly and the hard way that actually that doesn't serve us when we do that to ourselves. We have to have strict boundaries and put ourselves first a lot of the time. Yeah, because otherwise, if we don't look after ourselves, we have to have strict boundaries and put ourselves first a lot of the time. Yeah, because otherwise, if we don't look after ourselves, we can't look after other people. Right, that's true.
39:46 - Natalie (Guest)
I think there is just those. That one thing that I wish would change in our society, because we are always more faster, better, expecting ourselves and the people around us to do even more than is humanly possible. I don't exactly understand why. I don't know how it came to this, especially because there is so many people in this world who could share the same job and not one person killing themselves for it. Or there is machines taking over so much of the things that we used to do by ourselves, and anyway, we just overdo it so often, and if someone can't if just it's not a question of wanting to my body decides what I can do, not me. Sometimes I wish people would be more understanding that we do what we can, everybody does what they can, and if they don't, then it's because they cannot yeah, definitely yeah well said, nats.
40:55 - Liz (Co-host)
Well said well. Thank you so much for joining us on the podcast today. It was really nice to hear your story and get to know more about how it is for you over there in Germany as well and in your profession as a teacher and role as a parent too.
41:11 - Natalie (Guest)
Thank you for having me and for listening.
41:14 - Kerly (Host)
You're welcome, auf Wiedersehen. Auf Wiedersehen, you're welcome, auf Wiedersehen.
41:18 - Liz (Co-host)
Auf Wiedersehen.
41:21 - Kerly (Host)
Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice. Thank you for spending time here with us at Narcolepsy Navigators. I hope you learned something new. Please share the podcast with others. You can find us on all platforms. See you next time when we delve into another person's story.
