Ep060: Invisible Disability: How to Live With Narcolepsy with Iris Lorena
WHAT WILL WE LEARN
There are more than 70 different sleep disorders that people might experience and one of those is narcolepsy. In this episode learn more about this sleep disorder and how you can help yourself and other people that might have it.
● 03:03 What is narcolepsy type 1?
● 05:38 How many years does it take for people to be diagnosed with narcolepsy?
● 06:50 Iris Larena and her first experience of having narcolepsy
● 09:09 What she did to figure out she has it?
● 10:12 Test you need to undergo to know if you have narcolepsy type 1
● 12:09 Iris’ struggles after being diagnosed
● 15:05 Medication is not the only solution
● 16:35 How support can help people diagnosed with narcolepsy type 1
● 17:54 How narcolepsy medication affects the mental state
● 18:22 Educate family members and make them understand
● 22:23 What is brain fog and its symptoms?
● 23:54 The impact of brain fog to a person suffering from narcolepsy type 1
● 27:32 Accept, adopt, because it’s ok to be different
● 31:51 Let the people know you have narcolepsy and stop worrying
● 34:54 Sleep is a privilege
● 37:09 Understand what sleep is
● 41:36 Empower everyone so that nobody feels alone when suffering from this sleep disorder
TODAY’S GUEST
Iris Lorena was diagnosed with narcolepsy type 1 in 2017, she was just 28 that time. But she started experiencing the symptoms at the early age of 15. According to her, part of the symptoms are losing muscle controls especially when you're having strong emotions. She felt embarrassed and scared of having it. In this episode learn how she embraced the journey of having this kind of sleep disorder and what she did to overcome it.
“I think, if I could go back to her, I would just tell her to calm down. This is not a cure. I think it's the fact that we have to accept. I don't like using the word normal, but it's the only thing I can use. You're not a normal functioning person. So, just accept that” - Iris Lorena
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Transcripts
Dr. Yishan Xu 0:00
Hi, welcome to another episode of deep into sleep podcast. I'm your host Yishan. I remember in my first episode I mentioned there are more than 70 different sleep disorders out there, one of those is called narcolepsy. In the United States, every 2000 people, one may be impacted by narcolepsy. So that's over 3 million people around the whole world. So what is narcolepsy? And what is the difference between narcolepsy type 1 versus type 2? How do you know you have it or not? And how it can change your life. Today, our guest Iris Lorena from London will share with us her life journey of getting the diagnosis and how to deal with it afterwards.
Dr. Yishan Xu 0:57
Hi, Iris. Welcome to deep into sleep podcast.
Iris Lorena 1:02
Thank you for having me.
Dr. Yishan Xu 1:04
So glad to have you. So I actually read your stories online. I knew you were diagnosed with narcolepsy type 1 disorder.
Iris Lorena 1:16
Yes, I was diagnosed in 2017. I think I just remember I was 28. That was a long time ago.
Dr. Yishan Xu 1:25
Do you want to share with us, with the audience a little bit of your journey? And what led to the diagnosis?
Iris Lorena 1:34
I think the most interesting part is the fact that I actually am now looking back. And I realized that I started having symptoms at 15. So that was 11 something years.
Dr. Yishan Xu 1:50
It took time to find the answer. What are the symptoms around age 15?
Iris Lorena 1:55
Well, this is so strange because I saw it very separately when I was 15 until about 20, I started having lots of muscle control. So I would laugh and my face would tremble. I didn't know why. And sometimes I felt like I wanted to laugh, but the laughter sound would not come out. I thought it was just me, you know, something that is very strange to say, but it was very subconscious. I just didn't think that I should tell anybody about it. I was embarrassed, so I would just avoid laughing and avoid getting scared or avoid any of that thing. Feeling strong emotions, basically.
Dr. Yishan Xu 2:38
That sounds really hard at age 15 between 15 to 20 years old, which was the most fun time, your young teenager makes you excited, you cannot laugh, you try to hide it. And I know laughter is one of the most significant triggers for narcolepsy.
Iris Lorena 3:00
Yes. Because I have narcolepsy type one. So type 1 is narcolepsy with cataplexy. And type 2 is without cataplexy. And cataplexy is basically, the loss of sudden, loss of muscle control. When you experience strong emotions, there's different levels. You know, I think mine. I consider myself very lucky. Mine is just a face and a little bit, sometimes knees. But there are people who actually have a whole episode as if they were, you know, epileptic attacks, and they can drop on sore and shake, and they really can't control themselves and other people completely blank out. And they will kind of look as if they're dead. So eyes closed, can't move, but they're completely conscious. But my cataplexy do vary depending,
Dr. Yishan Xu 03:55
Right? So for you, mostly, it's facial muscles and your need to buckle.
Iris Lorena 04:01
When I'm awake. When I experience my sleep paralysis, that's the hallucinations. And that's another thing that I started experiencing at 15. And I did not realize until now, because now you join up the memories, and they start coming back to you. And I remember my friends, I had a very, very good friend, she's Nigerian. And she would say, Iris you need to go to church, you're possessed. You keep seeing things. I didn't think I was possessed, of course. But now I remember just because she said that it made it memorable. And so now I remember that I had that when I was 15. And I didn't realize
Dr. Yishan Xu 04:43
So that's a long journey to really figure out an answer right? To connect all the dots. Those are random, weird things happening in your life.
Iris Lorena 04:53
Exactly. That you just don't feel like they're connected. How are you going to connect something like, feeling loss of muscle control. When you feel something funny or sleeping badly or seeing maybe a ghost. And you think, Oh my god, there is a ghost in my house, there must be. Something like excessive daytime sleepiness, which is what I started experiencing when I was about 21.
Dr. Yishan Xu 05:23
So symptoms after the other across the years, you just start experiencing quite a lot. Very different symptoms without knowing narcolepsy, what that is. It's very hard for us to connect all those together as one category.
Iris Lorena 05:39
That's why there're so many people that I mean, they say the average of people being diagnosed is 6, 8 to 15 years. That is why people take so long to be diagnosed because it's not something that you connect together. They're not symptoms that seem connected or have a sequence. And mine was from 15 to 21. I didn't start sleeping until I was 21.
Dr. Yishan Xu 06:02
Then when you eventually get diagnosed, it must be a hard journey.
Iris Lorena 06:11
It was terrible. I mean, I really had a difficult journey. Because at 24, I moved to Angola, which is where I'm from, Angola in Portugal. And basically, there is a very hot climate. And that affects a lot of your sleepiness. And I think that triggers that actually, because I didn't sleep before. I started sleeping at work, I would sleep in meetings with clients. It started really affecting my personal life. But I think the catalyst was probably the week I had two very dangerous incidents that happened. And one of them was when I was driving at 12 o'clock in the afternoon, with my friend in the car, thank God. And I suddenly just felt myself shutting down. It's as if somebody is literally putting a blank cover view of your mind. I couldn't even tell her, I'm shutting down, my hand just starting to lose controlling the wheel. And then we'll start going to the right, and she thought the car would turn. And that's why she was like, she shouted Iris, wake up. So that was one and then two days later, I went home. It also works at 6pm you know, how you go home, you make a snack. And it was something really basic, I think it's new. And I sat down on the couch. And, that's the last thing I remember. Sitting down. And when I wake up, I just have this smell of smoke. I hit my nose. And basically, the whole porch was like, catching on fire. If I'd have waited a few more minutes longer, then could have been very disastrous. And I thought that is not normal.
Dr. Yishan Xu 08:07
Yes, that was very dangerous, two life threatening events.Fall asleep, just like that. I would assume, no matter how much you slept the night before, or you try to get to sleep, or try to rest won't help. It just happened.
Iris Lorena 08:28
Not at all, where sometimes I would go to sleep super early, I would make sure I would sleep super early. And then I remember every single morning I had a mantra. I was like today, you are not going to fall asleep, Iris, you will not fall asleep. You're going to wake up, you're going to do a lot. I would have little things like if I owe myself kind of getting a bit hot. Go up, get up and go get a cup of water, go to the toilet, and still is. I had no control.
Dr. Yishan Xu 09:01
So after those two events, you decide to do what to figure it out?
Iris Lorena 09:09
Myself.I'm a big researcher. I think the internet is the answer to everything. So I started just typing up stuff on Google. Like, oh, why can't I stop sleeping at work? And I eventually got to the word narcolepsy. And as soon as I read all the symptoms, I thought, Oh, my God, that is me, they are speaking about me. So I just hang obviously, because in Angola, they do not have neurologists, they do not have medication, nobody knows what narcolepsy is there. Because it's still a third world country. And I did actually book a meeting with a neurologist but she didn't know what narcolepsy was. Luckily, I had the conditions to have a family to support me and buy a ticket. So I went to Portugal, where my mom was. And I had the diagnosis there, which is the sleep study. So I basically stayed there, did the exams and it was confirmed.
Dr. Yishan Xu 10:11
I see. Yes, for lack of narcolepsy diagnosis, you do need an overnight sleep study. And you also need further different types of tests normally like two days and I think in Europe they do even more different types of protocol.
Iris Lorena 10:26
I only did two. I did this as the one who sleeps and then the one where I stay awake during the day. So they control how many times you wake up. So they will come in for half an hour. So you have to go to sleep. And then after half an hour you get an hour to stay awake, an hour sleep an hour awake, and they test how long it takes for you to fall asleep. And I think the average person they said if they sleep takes about 15 minutes. I took about 3.5.
Dr. Yishan Xu 10:57
Wow, less than eight. That's the cut off? I don't know whether you have sleep anxiety REM. And that's something sometimes they look also directly into REM sleep. So sounds like you're really on top of this. Do you kind of like, start questioning yourself if this is not normal? There must be an answer. I need to figure this out. it's even amazing, just by googling all the information, you could find this word narcolepsy.
Iris Lorena 11:29
Yes. But you really kind of think, I don't know, I love research. I always say that YouTube is my teacher, my psychologist, my counselor, my everything. Because everything that you want to know is there. And I just I always never understand how people don't understand, like the gift that we've been given with Google.
Dr. Yishan Xu 11:52
Great. But that's still that took you from 15 years old to 27 years old. That's such a long time. But finally, I'm so glad that you got the answer. Again, you got diagnosed. Is that the end of the story?
Iris Lorena 12:09
No, unfortunately, not happily ever after. I think I suffered more after my diagnosis than before. It's a lot harder. Because once you get diagnosed you know, I basically was still living in Angola. So my doctor prescribed me the pills but she was in Portugal. And every time she said, when I needed to prescribe me six months, and every six months, she would give my mom the medication. My mom would have to then find somebody who'd be going to Angola to ship it off. And I had no supervision, no daily monthly, no supervision, no support. And the medication can have a lot of different side effects on your body. Especially in terms of, panic attacks, palpitation, even your mood swings, everything. So I feel like I changed a lot after my medication. And people who didn't understand, that was the difficult part because even I didn't understand what was happening. And nobody really warned you about that.
Dr. Yishan Xu 13:24
Right. And supposedly, typically, we take the medication, we have follow ups with doctors, once in a while, adjust it and see how you're doing. But this is the living situation in that country. And these whole difficulties just stop you from getting the follow up care.
Iris Lorena 13:46
Completely. And that's why I mean, I let them go live for last year in October. And then I lived in Portugal for a year. But I now know, because I left Angola in two days. I decided in two days, and I went to Portugal. Because of my hallucinations. I had the worst hallucinations you can ever think of that lasted three days. So I thought my house was infested with bugs.
Dr. Yishan Xu 14:18
Wow. That's scary.
Iris Lorena 14:21
Yes, I was working a very stressful job. So I was basically leading 10 people within the events industry. And I was sleeping about four hours a day. Not eating, not doing anything. And just taking the pills and that's it and I think the pills really just kind of what I depended on to be normal. But they also take away your appetite. So you can go the whole day and you don't know how to remember food.
Dr. Yishan Xu 14:58
So I know for narcolepsy treatment medication is not the only solution. It only can do so little for you. There are a lot of other behavioral techniques and lifestyle changes that you need to follow.
Iris Lorena 15:15
Yes, exactly even dietary changes. Because I know that a lot of you have tried the keto diet as well, they say that's very good, taking out the carbohydrates, which is very true. Because if you notice, on a Friday night to eat something really big and then full of carbohydrates kind of makes you sleepy, even if you don't have narcolepsy. So it is definitely carbohydrates but I think that is the actual problem. Nobody tells you what the solution is and you have to figure it out on your own, all the time. Every single person that goes through it, figure it out on their own. And I was in such an isolated country, in terms of information and technology of everything. People don't really take it very seriously. They don't take sleep seriously. So they think you're just kind of exaggerating. But I think it was when I started having hallucinations. And my sister went to my apartment, she was like, there's nothing here. I was like, Yes, could you see them? And she was like, Okay, this is not normal. I packed up my whole house and today sold everything and went to Portugal. And then this year came to the UK. Now it's been a lot better. I think in terms of information of support groups and finding project sleep this year was my saving grace is just that emotional support connection with other people that go through it makes all the difference.
Dr. Yishan Xu 16:54
Yes, it's so important. Sometimes when we struggle with something so difficult, so challenging and sounds like no cure, no good solutions. Have someone there that is going through similar things or at least understand.
Iris Lorena 17:12
I think, especially people I feel with narcolepsy, you can. I wrote my blog as a way to, hopefully really tell people what you go through, in depth. To actually display it all out there. And especially for my family, I'm not going to lie. I think I owe it to them, most of them. And even reading it even knowing people who don't go for it daily. They forget. So they know they support you. But then tomorrow, they'll be like, Oh, well, you know, what's wrong with you? Like, why are you being weird? Why are you being in a bad mood or, and they forget that you're taking pills every single day. That affects your moods, that affects your, you know, everything, you know, your mental state. And I just don't think it's talked about enough as well.
Dr. Y
How to Live With Narcolepsyishan Xu 18:08
Right. I know, as psychologists, when we're going to help support. sleep disorders, such as narcolepsy, there is a part that involves educating the family members. How do you support people diagnosed with narcolepsy because it's not something that comes naturally. It requires a lot of understanding. What this is, what it may look like, and how family can really offer you support and that is really helpful.
Iris Lorena 18:39
Yes. I think it's completely understandable. I mean, you're trying the same way you're adapting, they have to adapt to something that they have no idea what it is, and they don't feel it's not in their DNA, you're forced to that because you do feel it, you feel the difference. But they have to adapt because you've told them they have to. And I think there's a big difference in that because you can't force somebody to understand how you feel. And you can't really expect them to, I guess. And I think sometimes we do, we're like, oh, I feel like crap today. Well, yes, you should just know, no you shouldn't know. I have to explain it to you, but you have to be open to understand that I think I've been learning that with my family, Because the first time my sister actually was witness to one of my cataplexy attacks was this year. And it was really funny actually. Because I was actually the worst one I've had yet but I think I hadn't eaten breakfast. So I woke up in the morning and she was in the kitchen, and I don't know what I wanted to say to her. She said something and it just made me really angry but laughing at the same time and I just felt my knees give. So I just fell on my knees in the middle of the kitchen. And my sister was so panicked. And she's like, Oh my god, and I think you know, where you just use instinct. She just comes and sits on the floor with me. I'm like, Well, I need you to actually help me up. I don't need you on the floor. She was so shocked. So, I think sometimes they do forget, you can see in this moments,
Dr. Yishan Xu 20:20
Right. So after that moment, do you feel like your sister starts understanding more?
Iris Lorena 20:31
No they still forget. Because I feel like sometimes, if you haven't imagined, sometimes I have a bad day. But there are times where I have a bad week, or even a whole bad month, you don't know. And I feel that sometimes people might feel that you are using it to your advantage. Because they don't quite know how much it can paralyze you. I mean, there were days where I would every single day five days, no matter how much I tried, I have responsibilities. I could not get out of it. All I would do was sleep, even with the pills. Sometimes the pills when you're in a state the pills do nothing. Nothing.
Dr. Yishan Xu 21:17
Yes. So that's a lot of really hard challenges. Sounds like you are really trying your best to adjust your living situation, mental support, taking the treatment as best as you can. So you're in the UK right now. I know the UK has pretty good sleep specialists, sleep doctors.
Iris Lorena 21:42
Yes, the UK has another whole type of support, not even Portugal compares; it has a very, very good support system. It does.
Dr. Yishan Xu 21:52
So you are able to have follow ups with sleep doctors now.
Iris Lorena 21:57
Well I've only been back for a month so I'm still waiting to be referred. But I have. I actually met a few friends through Julie from project sleep. So she gave me a few contacts here in the UK. And they referred me to hospitals I should go to. I have a completely different support system here. Completely.
Dr. Yishan Xu 22:20
That's great. That's very important. Another thing I noticed, you mentioned on your Twitter is the symptom of brain fog. Is that something you also experienced during this course of your own journey?
Iris Lorena 22:37
Yes, I think the brain fog is something that gets worse with time. In my experience, at least. And it's just the brain fog. The only way I can explain it is when you wake up in the morning, right? Imagine it's freezing outside 5:00 A.M. And the first second that you wake up and your head is kind of disoriented. And you're still trying to make out wait, what day is it? That's brain fog. That sense of being cloudy and feeling like you know what's going on, but you can't quite concentrate, can't quite focus is a very strange sensation. But most people with narcolepsy do experience brain fog, and it's just not considered its own symptom. And I think it should.
Dr. Yishan Xu 23:29
Yes, that's interesting, because when I took the sleep board exam, when I studied narcolepsy, brain fog, this word was not there, not hearing something similar. It's not as, at least it's not as a diagnostic that criteria we have to be aware of. And I talked to a limited number of people with narcolepsy. They haven't used this word yet. So I'm very curious. You and the people you know what that looks like for you? How does that impact your life?
Iris Lorena 24:03
Because I think for me brain fog is one of the worst personal narcolepsy because I can actually be awake. It's fine. I know. There's also this brain fog. And then there's automatic behavior, right?
Dr. Yishan Xu 24:17
Yes.
Iris Lorena 24:18
The automatic wave is another symptom. But I find that it's very, it happens when I have brain fog. Imagine I was working in a shop earlier this year before Corona. It's just such a feeling like you need to sleep so bad. Your brain needs to shut down. But you know, you can't. Because you're working or because you're in a public place or because you're somewhere so physically, you know, you cannot do that. But your brain is so gone. That a part of it shuts down. And you can still continue to do normal things. I'll use yesterday's example I was painting last night and I do not remember. Because it's like a part of you continues doing what you're supposed to be doing. But that other side of you something in your brain switches off. And it's just us like you're in a dream is very, very strange. I experience it a lot. I do.
Dr. Yishan Xu 25:27
Just imagine that part of you constantly doing something and you don't remember part of that?
Iris Lorena 25:36
Yes. it's gotten me in trouble. Even in Angola it used to happen at work. I remember the first week of my new job. My boss pulled me into a meeting to host a new client. It was like 3:00 PM, and it's just the worst time for me because that's after lunch. And literally, I was just like, oh, my goodness, you're going to sleep, do not do that. So I was so scared that I was gonna fall asleep. That I continued writing what he was saying. And my eyes were open. It was all scribbled. I do not remember anything. It's just, it's like, a survival part of your brain. That keeps you physically awake. I don't know.
Dr. Yishan Xu 26:24
It really feels like a zombie. Right? Opening my eyes doing things. But my brain is not connecting with what I'm doing. I was now surprised. This kind of symptom, of course, is gonna get us in trouble in life with people we know. At work especially if you do something you don't remember and your brain is not there.
Iris Lorena 26:48
For most clients. And they don't make sense.
Dr. Yishan Xu 26:56
So over the journey, anything you find that has been really helpful, so far. Sounds like you're taking medication, even though there are a lot of side effects, the mood really got impacted. Sounds like you find some support group really helpful, anything overall, you find that is quite helpful. Or if we change it to another way, if we go back to this, when you're 27 in 2017, when you're first diagnosed. What would you like to tell the older version of you to be prepared all these years?
Iris Lorena 27:31
I think, if I could go back to her, I would just tell her to calm down. This is not a cure. I think it's the fact that we have to accept. I don't like using the word normal, but it's the only thing I can use, you're not a normal functioning person. So, just accept that. And I think that was very hard. I only accepted this year. And I only told people this year. I've lived years without telling anyone. And when I published my blog, that's when I came out. Because I was so embarrassed by the illness and I thought that is something else to say no, don't be embarrassed, don't be ashamed. You're different. You're not normally functioning. But you just have to accept that you cannot. You have to adapt to life. Unfortunately.
Dr. Yishan Xu 28:34
I totally love it. I think this year is COVID. Everyone was forced to adopt to a new norm, right? The world is not normal anymore. Life is different. We all need to adapt to it and you are adapting to a newer version of yourself. And the more you accept yourself, the possibly less stress.
Iris Lorena 29:00
I mean, to be honest, it was definitely me. Because I've actually contacted, I wrote my blog, my first post, and then I contacted Julie on Twitter. And I thought, Oh, my God, this woman would never reply to me, she's the president and CEO. And she replied straight away and invited me to do The Rising Voices of Narcolepsy Writing Program. And then eventually, she invited me to be part of The World Narcolepsy Day Committee. And that has made all the difference. Because regardless of what goes on in my normal life, I feel like I'm doing something that matters. So for me that that's that has saved me, keeps me going.
Dr. Yishan Xu 29:46
Yes, because life can be very meaningful. And I'm so happy you are totally transformed from this experience. Into finding meaning in life and telling your story, helping other people and inspiring more people. Help everyone find hope, if they are going through similar things if they are the older version of you.
Iris Lorena 30:13
Yes, because you don't want people to have to go through what I went through. I mean, I had a very bad batch with medications, where as a change in all the time, you know, with narcolepsy, you cannot stay on the same medication all the time. Because they lose effect after a while. And that's the worst part. And you have to take medication, to stay awake. Medication for the cataplexy, medication to go to sleep, medication. And I have nightmares, nightmares, hallucinations. And I feel like, you need somebody that's going to sit down and say, Hey, I'm going to explain how your life is going to be now, okay? Because you just think it's just sleep, you know, nothing's gonna change, everything's gonna change, even the way your relationships are, is gonna change the way people deal with you is going to change.
Dr. Yishan Xu 31:07
Right? So have this expectation. Be ready, be prepared to help us or set ourselves first and help other people, it can really help other people to interact with us better.
Iris Lorena 31:22
Definitely. Because I was I mean, when I published my book, I was shaking. I think I was literally so shaking, not physically, because of what people are going, what I'm going to be accepting. But it was such a cathartic moment, I think. And definitely after that, my life changed after that. It was me before blocking off the book.
Dr. Yishan Xu 31:45
So after that, my question I want to ask, you worry so much, you hide this for so long? Because you must worry how other people would react right? After you start writing and getting out all this to the world? Did those things you worry so much really happened to you? Do people just give you negative feedback?
Iris Lorena 32:11
People are amazing. I mean, I can't even there's people that I haven't spoken to, in years that came out and actually, said, Oh, my God, like, I'm still here for you, supporting you, this bosses that I had at work that actually wrote to me and said, I'm so sorry, I did not realize you had this. Because usually I got in trouble for stuff. And obviously not neither did I. But it's completely changed. I think it makes people understand you nothing that's vital. It really is. I mean, hiding, it is not going to help. You just need to tell people and I'm still very unsure about going into a new job, how I would obviously act and how I would decide to do this. But I think with people in your past life and everything, they're more open about it because they need to understand they don't know they're not mind reader's, they don't know they need to know.
Dr. Yishan Xu 33:12
So this is very important for whoever is listening, right? If you have similar conditions, you have narcolepsy. Really seek support and help from people around you, to understand what you're going through.
Iris Lorena 33:29
Yes. Because I think people sometimes get so caught up inside their own heads, that they think that nobody can understand them. Well, that but people have, everybody has their own stuff. They don't, they're not in your body. They don't know what you feel. And I've really recently been talking to a lot of people and not just with narcolepsy, but with hypersomnia with fibromyalgia with invisible diseases, let's say how we like to call them. And that's exactly it. They are invisible. So how are you? How do you expect people to see them? You can't. You have to tell you have to speak it.
Dr. Yishan Xu 34:10
Right. Don't expect people to just understand automatically or start supporting automatically. We need to let people know. when you reach out to get the support and understanding ourselves.
Iris Lorena 34:25
Yes, because I always tell people it's like me asking you, okay, can you describe what air is like? And you're trying to describe? You know if I don't know what air is? How would you describe it to me? Would it be easy? Would I be able to understand even if you did, that's how I like to think of it.
Dr. Yishan Xu 34:46
After listening to all this. I also really like a quote you write on your Twitter. You said sleep is not a right is a privilege.
Iris Lorena 34:59
Yes. This actually came from this linkedin post that I had seen somebody else write. And it's this woman that I follow and I love her. She's very sheffy. She's a sleep psychologist as well, something she was writing about the fact that if you're normal, you wake up, you eat you pray to sleep. Anything that you have, you don't appreciate. If you have hands, you don't appreciate your hands. You think that just like that, and I think sleep is something like that we forget how important it is to the human body is vital. But not everybody has it. People that don't have legs, they can appreciate legs. And I think that's what the disability is. And people don't see sleep is not a stability. Because last week and so it's funny, I actually had this guy come around as a technician. And he actually asked the funniest question that I think I've heard in my narcolepsy days. And I was because I love to talk to everyone about it, even the technician, from a cable. And he asked me, he said, he's like, I'm sorry, I don't mean to be rude. But that's not really isn't a disability, something that's wrong with your body? I said, yes. We have a lack of hypocretin in our brains, which is the chemical that controls the sleep wake cycle. But people don't see that. They just think sleep is just a habit. It's something you do.
Dr. Yishan Xu 36:36
Yes, I think that's similar to what I do. Like mental health, mental disorders and sleep disorders. They're invisible.Well, I treat insomnia a lot of the time because insomnia is more psychological. And sometimes I help people understand, to reduce anxiety. Your body is not broken. Your body knows how to sleep. But I think narcolepsy is different. Our body, our sleep mechanism is broken.
Iris Lorena 37:05
Yes, exactly. I think if people understand, what makes you sleep? What is it that controls the sleep, they would understand that it is a broken thing? See, I never actually knew that about insomnia. That's interesting. Because my sister has it.
Dr. Yishan Xu 37:23
Yes, that's why I think now the first line treatment for insomnia is called CBT for insomnia, that's cognitive behavioral therapy for insomnia. Not all insomnia for sure. But mostly insomnia it's psychological. Help people understand what sleep is what normal sleep is. And understand we don't have to control sleep. And we can also change our sleep habits and lifestyle in a way and reduce the unnecessary anxiety towards sleep. When we don't care about sleep as much. We don't want to force our body to generate sleep. A lot of time we can sleep better. So that's insomnia.
Iris Lorena 38:06
Yes, that makes so much sense. She's only been having insomnia for the last few years. So it's something that's developed as well, it wasn't always there. But I think it's interesting. because, I think sometimes that understanding of Oh, but you know, I don't sleep either. So, insomnia is one of my symptoms, too. I don't sleep at night. But then daytime sleepiness is my symptom,disrupting night's sleep. I mean, when I did my sleep test, they found out I woke up 34 times during the night. I don't sleep, my brain never shuts off. And I think sometimes she gets confused with insomnia. She's like, I know, I feel you know, I don't sleep. No you don't.
Dr. Yishan Xu 38:55
Yes, there's a difference there.Yes, that's when we say the surface level symptoms are similarly but deep down. There are different mechanisms there.
Iris Lorena 39:11
I mean, if you think about it. I've been researching while doing my little research on the effects of sleep and memory. because I feel like my short term memory is just going slowly. I forget the most ridiculous things and if you think about it, it's impossible to not affect your memory but I don't think I don't know maybe it's just me.
Dr. Yishan Xu 39:36
Yes, but I think it's amazing that you've been through this journey, but you never give up, you keep on doing research, keep on learning about trying to understand now you are doing more public speaking and trying to help more people to understand narcolepsy better.
Iris Lorena 39:57
I think especially this year, with pandemic, we've had a lot of time, we have time, people have time as well to listen. I don't know what it is about this year, but it's actually not been that terrible year for me, I'm not going to lie. Probably the only person in the world that can say that. But it's been a good year in terms of self reflection in terms of understanding myself and the quarantine helped with that, I actually didn't have so much pressure for me to. Because when I came out of Angola, I wasn't in a good state, I did go through a bit of depression, I did go for anxiety, I, I really didn't know what to do. Because a 30 years old, moving back to your mother's, and you know, leaving a job in your country or everything, you kind of get a bit like a midlife crisis, like, Oh my God when I do. So I think focusing means you know, having perfect sleep and all that really helped me re-focus, my aim. And what's important. Because honestly, I don't think there's any other better job you can do than to help people. So that's what I'm focused on. That's it. As many as I can, even if it's one at a day, then I'll try.
Dr. Yishan Xu 41:19
Amazing. So if our listeners right now, who want to learn more. Do you have any final wisdom to everyone who's listening? And who is possibly struggling with their own struggles?
Iris Lorena 41:37
I think don't keep it to yourself. Sometimes we're afraid to speak out or afraid that our problem isn't as bad or, or that we're just mony. This is one thing, because I'm actually in the process of changing my blog now. Your story matters, your story matters. And it's so weird, because we know that statement as a fact, when we think of other people. But when we think of our story, we can. What have I been through, you know, sometimes you're just like, no, I gotta look, I don't have a story. You do. And I think to get help too, to anything, it's just communication is everything in life. So reach out to people to reach out to groups on Facebook, if you have narcolepsy, if you have any type of invisible illness, especially, and especially in the countries that, they don't have as much of a support, like Angola. And even Portugal. In Portugal, I was shocked we have a Facebook group of 27 people. So I think, you know, we need to definitely join our forces. And that's, that's what I wish to do, hopefully, join forces all over the world. And just empower everyone so that nobody feels alone.
Dr. Yishan Xu 42:54
Yes, that's lovely. I really love it. So every single voice matters. Every story matters. Everyone is unique. So listeners, if you're listening to this, hopefully you get a message, write your story matter, your life matters. And get help, seek support and speak up. So Iris how can people find you? If our listeners want to read more about your stories, get in touch with you or follow you. How can they do that?
Iris Lorena 43:27
I've got my I'm on Twitter, I'm on Instagram, all that. So on Instagram, which is basically where I'm a bit more present, and they can go to life inflashes blogger altogether. Life in flashes is my blog name. And if they wish to read my blog directly, then just go to https://lorenairis.wixsite.com/lifeinflashes. But hopefully, you guys can put an insight because I wouldn't get that either.
Dr. Yishan Xu 44:03
No problem. Everything, all the links, I will put it on our show note at deepintosleep.co. So when people listen to this episode, they will be able to find the show notes. It will go directly to all your sites. Thank you so much, Iris for coming to the show today. This is very inspiring.
Iris Lorena 44:26
No, thank you so much. I cannot believe it, even for me, I think that's amazing.
Dr. Yishan Xu 44:33
Like you said, everyone's story matters. And your story is important, I think to let more people know. And also your upcoming presentations with Project Sleep, right? If you have a poster or anything, I would love to put it on the website for you.
Iris Lorena 44:50
Yes, because I'm currently doing The Rising Voices. I did The Rising Voices of narcolepsy writing program, which helped me a lot with my blog. And now I'm going to do the speaking one. So hopefully, I don't have anything yet, because I just started last week. But as soon as we have any information I'll definitely let you know when I'll be putting on my Facebook or my Instagram, Twitter everything and there's gonna be a Facebook Live on purchase leap.
Dr. Yishan Xu 45:19
Cool so everyone's listening if you follow Iris to any account, later you will know when the events are gonna happen.
Iris Lorena 45:27
Or even if you follow Project Sleep that's where the lives is gonna be it's not gonna be on my page.
Dr. Yishan Xu 45:32
Yes, or Project Sleep we interviewed the president of that before in our show. So I will link that episode to your episode and also link them together. Yes, it's a great organization. It's similar. Yes, that's all together. United together. Yes, make a support.
Iris Lorena 45:58
Yes, that's why I'm here today because of Julie Flygare. And if it wasn't for her, honestly, she changed my life. And she knows that. But I have to say every time.
Dr. Yishan Xu 46:08
Amazing. Yes, I'm sure she would love to hear that. Thank you, Iris for coming. This is a great conversation
Iris Lorena 46:17
You too. Thank you.
Dr. Yishan Xu 46:19
Wonderful conversation with Iris. So if you have narcolepsy, please make sure you get diagnosed, get treatment and follow up with your doctors. It's an ongoing, lifelong treatment. Don't think medication or any single method can just cure you forever. But you can definitely learn how to live with it, how to manage your life in a different way. If you want to read more about Iris' story, you will find all her links on our show notes at deepintosleep.co. I really want to take time to thank our listeners. I received some really warm and encouraging reviews from you. I really appreciate that. Thank you so much for liking our show and finding it helpful. And please feel free to let me know what I can do to make the show even better, even more helpful to you. If you have any questions I'd love to hear from you. You can either email me or leave a voicemail on the website at deepintosleep.co. Next week we will talk about ADHD and how that impacts our life and sleep. Stay tuned, I will see you next week.
47:43
Sleep is an individual thing. We all sleep differently. And there is so much we can do to improve sleep quality. Keep hope and carry on. This podcast is for general informational purposes only and does not include the practice of medicine or other health professional services. The usage of the information we share is that the listeners own risk. And our content does not intend to be a substitute for any medical and professional services, diagnosis and treatment. Please seek professional health services as needed.