Episode 2: Living with sleep disorders

Join me in this episode in sharing how living with sleep disorders can affect the quality of one’s life. This is a very personal episode and I share my own experience as a patient as well as a caregiver to a child with sleep disordered breathing. 

Transcript

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Have you ever been so tired that nothing feels like helping refresh you anymore? The kind of exertion that follows you everywhere. Hello everyone, and welcome to the podcast. If you're new here, welcome. And for those who've been here, welcome again. My name is Marianne. I am the host of uh this podcast. I speak mainly about sleep and sleep disorders. Thank you for spending this time with me today. This episode is going to be a very personal one because today I want to talk about something that quietly but profoundly affected my life, and that's uh the poor quality of sleep. This is not just a story about being tired, but rather how disrupted sleep impacted my health, especially um while I was pregnant, and also later on into motherhood. I watched my child uh struggle with sleep issues of his own, and that kind of woke me up, or rather, made me aware of the emotional exhaustion and the confusion, and to some extent, the level of helplessness that I was experiencing trying to fix the sleep issues, like for both for myself and my child. In all that, I got to confirm for myself how sleep is not really optional, but rather a very essential part of our lives. Before pregnancy, I thought I knew what being tired was, you know, the occasional nights out with friends, busy days at school or at work. But um, pregnancy introduced a totally different level of exertion. What surprised me was how nothing seemed to be available to make the situation better. My OBGYN said it's normal. Even um people around me or like anyone or anywhere you'd search, most of the time it would be la, it's normal to be tired. And yeah, during pregnancy, or rather it's part of being pregnant to to experience fatigue, you know, to just be tired, be sleepy all the time. It it was normalized, or it was it's it was it's it's known to be normal. I was so tired to an extent that mostly even at work I wouldn't come through the day without having to take a nap. My lunch breaks were mostly just for napping, but it was also my point of privilege because I was working in a sleep lab, so a place to sleep or a place to take my naps was easily available. But what struck me at some point was how my symptoms were similar with what many patients were presenting, especially patients who had uh like OEC obstructive sleep apnea, they were presenting with these quite similar symptoms like what I was experiencing, the tiredness, the frequent awakenings at night to go to the bathroom, uh to visit the bathroom, and the this um constant fatigue and irritability, you know, the restlessness, um, especially while trying to fall asleep, or even after falling asleep. So I we had a discussion with the physician at my lab, and I did a test. I had previously been doing uh several tests. I mean, working in a sleep lab, also with curiosity, most of the time, either testing for new devices or just to know how my sleep looks like, I would be doing sleep uh tests, and most of the time I I never had anything that was like to talk about there was no sleep apnea, there's nothing eventful in my sleep. But during this time, the results confirmed or rather showed that I had developed uh obstructive sleep apnea, and of course, again, as a point of privilege working in a lab, I had the resources to and the knowledge to start a treatment, and so I started using a CPAP machine, which um is mostly like the one of the options for trip during sleep apnea, and also for this um for my situation, also during pregnancy, I didn't want to explore other options because I the CPAP was like the easiest and most available option for me to use, and also with not much uh things input or you know, um external. I mean, there was just a mask I put on sleep, you can adjust it according to your needs, or you can use it according to how much you can use at night. But the moment I started, I easily could use it throughout the night and easily could fall asleep, and it was fascinating to see how I immediately felt a difference after starting the treatment. I not only slept better at night, but I no longer needed to nap during the day at work in order to get through my tasks. The fogginess and the the much effort I needed even to carry out simple tasks were no longer there, and this experience has opened also doors and also raised curiosity in the lab general where I work on how women, especially pregnant women, get cared for during their pregnancy, and what can be done uh for this um group of uh population, or rather for women when they're pregnant, what can be done? Can we just say that yeah, it's normal to be tired and to sleep poorly during sleep, or can we actually do something to make the experience more lighter and more hard? I mean, being pregnant is already hard enough. So, how about we fix something or we do something that can make it a bit lighter? And I was surprised how that period of poor sleep made me see myself differently, and also being aware of some of the consequences of poor sleep. Of course, I'm at the beginning I I didn't really much pay much attention to it, but I saw myself being more irritable, more sensitive, feeling overwhelmed real quick, and of course, the sleepiness during the day. I'm not the kind of person who used to take naps, or I don't really take naps. So seeing myself that time needing naps was quite interesting to observe, and like I said, pregnancy is already hard, a really hard experience. So add on to sleep deprivation to that, that that's really hard. Things like forgetfulness are also clearly worse when sleep deprived, and of course, that uh with pregnancy it comes along. Normally we say yeah, yeah, motherhood um dementia, but maybe or just maybe it could be as a result of the poor sleep or the developing of uh sleep apnea, and I think um I'm I strongly believe that all women probably develop sleep apnea during pregnancy, if not at the beginning, then at the end, because the changes that women go through, the weight gain, everything, they are really quite similar or parallel to what people typically experience when they have full-blown obstructive sleep apnea. And if this could be fixed, just the sleep or the sleep could be optimized. I believe this could go a long way to save a lot of women's life. And yeah, I enjoyed the rest of my pregnancy with the treatment, and I was glad that at the end of the day that I had gone through that experience, and I'm hoping that some of the things and the projects we are now launched into this will go a long way into serving other women out there, not just in my surroundings but everywhere, that women will have a different experience during their pregnancy, and that more attention will be paid during this time and not just brush things off as normal. So that was my very own experience from my own body. Then later on or fast forward post-partum, the baby was there, everything was okay, and of course, the first nights or the first initial months are typical. I mean, the sleeplessness or the the um disrupted sleep are normal and quite expected because the there's a new human trying to adjust to a new environment, everything is new for both of them, and I think even for the mother, just having something somebody new in your room. It's hard to go through the night just sleeping deep. One is always worried about where are they did they fall, did I sleep on them or are they still breathing? So those those were there, but they were bearable. And uh what changed our experience was at about six months, I noticed um the baby was a bit more restless, and uh the actually the restlessness came later, the breathing, you know, the way initially when the child is sleeping, you would not even find them in a room, or you wouldn't know a child is in a room if you entered because their breathing is quite soft and slow and you know paced. But um, at around six months I noticed their breathing was a bit loud, or rather, you could easily notice where they are, or easily know that there's somebody here just by how they breathed, and that um of course um it caught me a bit curious, and we had a bit of checkups with the doctor because uh with time the breathing was not only loud, but they were also a bit restless, so I was thinking maybe cold or so during the cold season, you get to think that maybe they've got a cold or maybe they have an infection. We went through the doctor, I mean a few pediatrician checkups and all everything was they were saying, Yeah, it's okay, it's normal for a child to be to have or rather it's the experiences and breathing and all those things that it's normal. The child is adjusting to the environment and all those things, but somewhere in my instinct I didn't feel that it was normal, much as yeah, it was during the cold season, but it didn't feel normal, the restlessness grew more, and the the breathing, the volume of the breathing got louder, and interestingly, I'd also had an an um a test or rather a study where we were analyzing the sounds of sleeping, if they are any relatable to any I mean if there is any direct relation to the breathing sounds and sleep apnea, and of course, from that study they are washed, so that's why at that point again. I think my privilege of being in a sleep medical environment made me not just settle and say that this is normal. I still tried to look for solutions for my child and made a few more visits to the specialist because you know there are some things you can't just go and say this is what I want. Sometimes you have to go through the specialist for them to confirm to rule out things. So I at some point after I wasn't really satisfied with what the specialists from the child's side, and like the pediatricians were seeing, I consulted with the physician at the sleep lab because, of course, this was again not just the breathing, but also with the sleep. It became became more and more restless and also more disrupted. That to a point that I also was getting disrupted, or we were getting uh more disrupted sleep, taking turns to sleep to watch over the child. But nine, I had to at some point like even sleep, like in shifts, because the child was really struggling. And when I presented this information to the physician at the sleep lab, he, of course, like many doctors, wanted to know more. Actually, let me not let me say that he wanted to know much more than what the previous doctors wanted to know from us. He wanted to know how he sleeps during the day, how he sleeps at night, how it looks like, and of course, the narration alone at times is not enough to say, and that's when he asked me to have um like a video recording of the child while sleeping because during the day it's hard to see those struggles that we experience at night, and it's at that point that um previously most doctors were saying, Yeah, there could be a problem, but you know, being a baby, most of the time we let them adjust up to at least one year before that there's nothing much can be done. But after the physician at the lab saw this, he immediately referred us to uh um H O H O is um the specialist for the ENT HNO I said it in a different way, but the ENT specialist he referred us to also I liked how he dealt with our case because he not only assessed the child based on the information we presented him with at that moment, but also asked about the history how the child has been and also the recordings at night because these are things when you go to the doctor during the day, they cannot see from the child immediately. But when they saw the child, how they were breathing there, and the recording immediately they say the child had to um had a surgery because um things like uh CPAP were not helping, and also I mean, uh CPAP also can only help if there is a level of tolerance, but we had also tried this, and the child wasn't tolerating this. And I think after maybe the body after struggling long enough, it could have even been from the time they were born, but um the fact that we noticed it much later, probably the body was already very irritable. That adding something on them at night was just annoying and irritating them, so they couldn't take any other thing, and that's why the decision to have uh the tonsils like that's the diagnosis was that they had really enlarged tonsils that were blocking the airway both during the day and at night because you could easily hear them breathe during the day. So the decision to have him go through surgery was really really really difficult but necessary at that point because we were all struggling and we couldn't wait longer to get a remedy or to wait for the child to get to like later on for whichever reason. So and at this point the child was extremely fussy, sleeping all the time, um rather sleepy, but really not able to sleep. They would try to fall asleep and would wake up due to snoring, irritable, uh feeding, all those things that come along when like you can imagine as an adult, if you've not slept well, how it can feel for a child. They're adjusting to the environment and also their body, so too much going on. And uh, what struck me most was to see how familiar it all felt observing from my lens, having gone through poor quality of sleep, it was like looking in a mirror. The deep fatigue and the impact it had on him during the day was quite hard to process. So, this journey taught me several lessons that I wish more people talked about. First, snoring, whether in adults or children, is not always normal. It can be a sign of an underlying issue that requires attention. Secondly, daytime sleepiness is not laziness or a character flow, it's a signal from the body that something isn't right, and this can both be for babies or for adults. Of course, we know babies sleep a lot, but there is a level of sleepiness that you can look at in a child and notice that it's not normal. And thirdly, advocating for yourself and your child really matters. Ask questions, seek specific tests you think could lead to a proper diagnosis and also trusting your instincts, those can always help you make life-changing decisions or uh differences. And finally, if you're in a position to get yourself or your loved ones to something better for them, do so. Don't hesitate to feel guilty of taking advantage of privileges you have. I can say I was privileged to be who have been already working in a sleep lab so that most of these both of the experiences we could easily have um attend to them or get solutions faster and not having to go through a long process. It still took time, but you can still still see how knowing somebody who is a specialist around me helped, and so I thought I would share this experience so that maybe not everybody is always in such a position to get that. Maybe from this you can learn, you can know what to do when you see some of the appointers I've mentioned, and not having to go through hundred specialists before you get to your answer. If you're listening to this and relate to the story, whether for yourself, your child, or a loved one, I would like to assure you that you're not weak and you're not overreacting. Sleep is important to our health, emotional well being, as well as for a good quality life. So, thank you for spending this time here today and for listening and for allowing me to be vulnerable and to share this very personal journey. Feel free to like. subscribe or share with someone who might need to hear this. And until next time, take care and don't underestimate the power of good sleep