EPISODE 1 -TRANSCRIPT
Welcome to episode one. My name is Emma Cooksey, and I'm your host. Today I'm going to be sharing a little bit about my story with sleep apnea. I thought that this would be really helpful just to introduce myself but also so that you can hear that I'm a normal person just like you. And I'm just struggling with sleep apnea, and trying to live my best life and get some good night's sleep. So again, I'm not a doctor, I'm not a sleep specialist, but a woman living with Sleep Apnea. I got diagnosed 12 years ago, and I've been living with it every day since then, and I feel like I've made some really great progress, and how I feel and how I'm coping with having a chronic sleep condition, so hopefully me sharing my story will help some people out there to realize that they should consider whether they have sleep apnea, or just people who are newer in their journey, maybe it will help to hear how much better my life is now than when I was first diagnosed.
Normally when I share with people that I have sleep apnea, I usually start from when I was diagnosed 12 years ago, when I was 30, and I kind of skip over the whole of my 20s. I think the reason that I do that, is that my 20s were kind of bleak, when I'm looking back on them now. I clearly had all of the symptoms of sleep apnea, I had brain fog, and I honestly don't really remember a lot of it in my 20s because I just kind of never got enough restorative sleep, so I was really just tired all the time. Like a lot of women, I think, I suffered with anxiety and depression. And a lot of that now I'm kind of realizing was linked to having sleep apnea. But at the time, when you're looking for answers and you go to doctors, they will zero in on the fact that you're anxious and depressed. Nobody really asked me, you know, are you having headaches in the morning. Are you sleepy all the time? Do you want to fall asleep like, you know, every afternoon? Because I definitely had all of those symptoms. I think if somebody had asked those questions, I would have got to having a sleep study and figuring out my sleep apnea quicker, but nobody really did. I just went in said “I feel anxious and depressed”. I was really kind of asking for help with that and so I definitely had a lot of really good therapy, and, you know, a lot of what I went through and to deal with my own anxiety and depression probably really helped me overall in my life. If you haven't had any therapy, I strongly recommend that just for dealing with life in general. Obviously that didn't help with the underlying sleep apnea problem though!
So, for an example, I always think of when I was 22. This just kind of illustrates what my life was like at that point. I was traveling, I went backpacking after university, and I was working for a law firm in Sydney, and I was sharing a house with a bunch of other backpackers. I had to get up, I was working a really different schedule from everybody else in the house, so I had to get up at 6am every morning. I slept horribly. I was sleeping on a mattress on the floor, and would have that anxious pounding chest feeling every morning from stopping breathing all the way through the night. I would just drag myself into the shower and I would just cry in the shower every morning, which now is so bleak, in the retelling but that's just how I was coping I was just crying every morning. To the point where one of my housemates came in while I was in the shower one morning and asked, “Are you crying?” and I said, “Yeah, I've been crying most mornings”. This seems so ridiculous now, it's like there's something clearly wrong, but at the time, you just do whatever you have to do to survive, and you don't know any better, you don't know you have this underlying sleep problem.
During my 20s I lived in Glasgow, Scotland, and I met my husband there. He's American from Florida originally, but he'd been living in Glasgow for a number of years because of work. So I met him and we got married in 2005. Then in 2007, we moved here to Florida (we live in suburban Northeast Florida.) I also got pregnant with our first child, Katie. That was the year before I got diagnosed with sleep apnea. I was having a pretty tough time, not sleeping well but also had no friends and had just moved to a new country and I was pregnant, and I was a really pukey pregnant person, and I just didn't feel well the whole time I was pregnant. So I was adjusting to a new place and everything and then when I had my baby. Obviously that brought a huge amount of joy, but I still felt anxious, and a bit depressed. Of course when you just had a baby, everybody you know thinks that you have postpartum depression, which maybe I did have some of that too but I definitely think that not sleeping well was not helping me at all.
When my baby was about six months old, she started sleeping through the night. I had this nagging feeling like there was something wrong. I still wasn't sleeping well, and my baby slept all night so I was kind of thinking like, why do I keep waking up all the time when the baby's having a big long stretch of sleep and I need to sleep so much. So I started to kind of just consider maybe there's something going on with my sleep. In my family growing up, we had a bunch of snorers, and I never really heard of people going for sleep studies or having a sleep disorder unless it was very extreme. I think I knew the term narcolepsy, and I knew that that wasn't what I had but I still just kind of thought well maybe I should start doing something about it. However, of course I had a baby, I was really busy and I didn't really get round to it.
So then cut forward, Katie was 6 months old, and we had been over in Orange Park visiting my mother in law. I was driving back across the Buckman Bridge, which is this huge really wide bridge in Jacksonville, and I got about halfway across, and I had a distinct feeling like I can't keep my eyes open, I'm going to fall asleep. And if you've ever been in that situation, it's really scary and I was looking in the rearview mirror at my sleeping baby, just trying to hold on to get to the other side of the bridge. So thankfully I got to the other side of the bridge, but I definitely had what people call a micro sleep, where I was behind a truck, and I was probably like 30 or 40 feet behind a truck. And I just had that momentary thing where I suddenly was aware that the truck was a lot closer than I had been, and it was like I'd had this tiny, mini sleep, and it was terrifying. So then, fortunately, nobody was hurt, and I pulled off as soon as I got off the bridge, and I just pulled into a parking lot and I slept for 20 minutes. Just enough to be able to make it home, and of course I was really upset because I was thinking about what could have happened to my baby and what could have happened to me. So, that afternoon, I called my doctor and I said I really thought I needed a sleep study, because I really had no idea what was going on with me but that something was going on and I was that tired. So that's when I made arrangements to have a sleep study.
I'm sure we're going to have to talk a little bit about the American healthcare system. But at that time, my husband had an employer with an excellent health plan. So it was no problem at all. They just said, we'll send this technician over and they'll hook you up so I had the sleep study in my own home, and they hooked up all sorts of electrodes on my head. Then somebody in Texas was monitoring my sleep all night. They had a laptop that they set up, and it has a webcam so they're watching you, which is a bit creepy. But when it came back, they said yes, I definitely had moderate sleep apnea, and I was stopping breathing multiple times all night. The sleep specialist told me I would need to get a CPAP. One thing about being diagnosed is you have a sense of relief because I knew what was wrong with me, you know, no wonder I've been feeling terrible because I haven't been getting enough oxygen into my brain.
Things have really improved for me since I started using my CPAP. I definitely have daytime sleepiness. I mean I could always take a nap. I can take a nap at any point, but it's a lot better than it used to be and I can tell that I'm getting more oxygen in my brain at night. I have one of the CPAPs that links up to an app that tells you how many times your sleep is disturbed an hour, and I think it was stopping breathing in my sleep more than 20 times an hour. Now that I have a CPAP It's not usually zero but it's normally one or two times, so that's a big improvement.
I think the point I want to get across to you is that whatever treatment you use, you still are going to be living with a chronic sleep condition.
So some people just can't tolerate the CPAP, and they try but it's too uncomfortable and they feel claustrophobic. They just can't do it. So there are a bunch of other different tools you can use. So hopefully during the podcast we'll speak to people who are using some of those other alternatives. So for instance there's an appliance where you can go to the dentist and get an oral appliance fitted, and that helps by keeping your tongue from blocking your airway when you're asleep so for some people that works really, really well. Then there's also a new Inspire implant that some people are using so I know one of my first guests on the podcast is going to be discussing that.
I'm interested to find out what the other alternatives are but I think one of the biggest things that's helped me to deal with sleep apnea is just adjusting my expectations. I think reaching some level of acceptance is really important because that way, you don't get frustrated that you know you're using the CPAP and you're doing all the things, and you still are having some really crummy night's sleep. Well that's gonna happen, but I think if you focus on the things that you can take control of. In your overall health and well being, things like exercise and eating nutritious food. You know, surrounding yourself with loving family and friends doing things that you enjoy, all those kinds of things that you have control over you can really make a big difference to your life. Then if you have a couple of bad night's sleep in a row, you don't get hung up on the idea that your treatment isn't really working. You just kind of get really grateful for the nights that go really well and you wake up energized and you can have a full great day.
If you are using any of the alternatives I talked about, I would love to hear from you to discuss on the podcast how that's going for you.
I wanted to leave you with some practical advice for anybody who's new to their journey or hasn't been diagnosed yet, that type of thing. And when you wake up in the morning and you've had disturbed sleep or you stop breathing, multiple times all night and you're going to feel like a bear has been chasing you. There's so much adrenaline and cortisol coursing through your system. For years I would wake up and just think I was an anxious person who was really scared of everything. But now, when I wake up with that feeling, I take a moment to stay still in bed to do breathing exercises to center myself. So one of the things you can do is just a simple, breathe in for four, hold for four and out for four. While I'm doing that, I'll think to myself I don't say out loud because my husband would be annoyed! I think to myself, “You are loved. You are safe.” I do that for 10 minutes before I even get up, and it makes a huge difference to how I feel the rest of the day because I haven't started my day with this really tense anxious feeling. That feeling dissipates. Just stay there, do some breathing exercises.
The next thing I always do is I walk, usually for 40 minutes every morning. So it's about two miles or something. I don't want to go most mornings, most mornings I want to go back to bed and sleep more. If that's how you feel, I totally get where you're coming from. It's terrible. I found that I feel like a completely different person once I’ve walked. And so I really recommend that you try that as well. One of my favorite podcasts is “Armchair Expert” with Dax Shepard, and I can't remember who he was interviewing, but he came up with the most profound thing. I think about it every morning now, where he said, “no matter what you're struggling with, whether it's addiction, or depression or just any chronic illness.” He said, “I don't want to talk to you until you exercise for an hour a day. Because exercise is so transformative.” I think that's really true, it has a huge impact on your mental health. It makes a difference to your ability to manage sleep apnea.
The other thing I do every morning is eat a healthy balanced breakfast. And I know that's not the most exciting thing. I have oats and almond milk and fruit and nuts every morning. It makes a big difference even if the rest of your day is about to go off the rails. Having the breathing exercises, walking, and the healthy breakfast together, really helps you to get over that first hump of getting through the morning.
The very last thing I want to leave you with today is the silver linings that have come from having sleep apnea. I know that if you're in the middle of really suffering, it can be difficult to see any good that might come out of the condition but I've really found over time that I have become healthier because I'm trying to deal with it. So I think that's because I really want to get a good night's sleep. I do a lot of things to stay healthy and active, eat good food and meditate. I do yoga, and, you know, acupuncture, all the things. I'm not sure if I didn't have sleep apnea, I don't know if I would actually go to the effort to take as good care of myself. So I see that really as a silver lining. I'm way more in touch with my feelings, my emotions, and just what other people are going through, because I think when you deal with a chronic condition, it makes it easier to relate to other people because everybody's got something, right? Like there's just a lot of things that people have going on. So, it makes you a much more empathetic listener, I think.