POTS Diaries with Reilly, nurse and world adventurer

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Jill Brook: Hello, fellow POTS patients, and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Reilly. Reilly, thank you so much for joining us today.

Reilly: Yeah. Thank you for having me.

Jill Brook: So for starters, let's just hear some basics about you so that everyone can kind of imagine where you are, who you are, your basics. What should we know about Reilly?

Reilly: Yeah, so, I live up in a small town called Terrace, which is in northern British Columbia, up here in Canada. I'm 29 and I live here with my dog, Molly. And yeah, I was born and raised here in Terrace, which is on Tsimshian territory, the traditional Tsimshian territory. And I work as a director of nursing for the First Nations Health Authority.

So that's a little bit about me.

Jill Brook: Wow. Okay. So what does that mean to be the director of nursing? Like what, what do you do?

Reilly: It's a very interesting position. I work closely with our, our nursing and nutrition team, and [00:01:00] so we have a regional team, and then we also have 14 point of care facilities up here in the north that support rural and remote Indigenous communities to access health services, which are primarily nursing services.

So we have a big team. I think my department's about 65, 70 folks. Yeah. And we try to, you know, the goal ultimately of our health authority is to increase accessibility and, and really improve quality care for, for rural and remote Indigenous folks up here.

Jill Brook: Neat. Okay. All right, so tell us a little bit more about like your personality. What would your friends or family say are your traits.

Reilly: Oh gosh. My friends and family. They probably all tell me I'm very type A. I I really love to be organized. I'm very planny. I like my lists. Yeah, I, I like that level of control, so that's, that's probably pretty accurate for how they describe me.

Jill Brook: Well, that sounds great for your job because if I had a broken leg out in the remote area, that's, that's the person I'd want planning my care. Okay. Alright. [00:02:00] So when you, I guess, did you have a time before POTS entered your life, and if so, what was like the last year of your life looking like at that time?

Reilly: Yeah, so I was diagnosed just last year, but my symptoms started back in 2022. And before that, you know, I was, I was pretty active. You know, I, I've been playing soccer all my life, so I played soccer regularly. You know, I was still able to go to the gym three or four days a week, going on longer walks.

I was never a big hiker, which lots of my friends are 'cause we live in the mountains. But but I was definitely a lot more active and active when I traveled too, like, I did a lot of backpacking trips, a lot of, you know, hiking and walking around in different countries. And so, it, that definitely has shifted over the past few years.

Jill Brook: So what are some of the places where you've backpacked?

Reilly: My first kind of bigger trip was in Peru, which was really cool, and I went with a volunteer organization called Operation Ground Swell. [00:03:00] And so it was a really interesting kind of seven week part volunteer, part kind of tourist trip. And we did some really amazing hikes. We walked all the way up to Machu Picchu and did a, a bunch of really cool, yeah, the views there are

stunning. So that was really kind of my first big trip. And then, you know, I've been to Nepal, I've been to some really great countries, you know, like Greece and Italy and the UK and so I think I'm up to 18 or 19 countries now, but I have a lot left that I'd like to see.

Jill Brook: So I have to laugh because a minute ago you said compared to some of your friends, you're not that big of a hiker, but you've like hiked to Machu Picchu, which I believe is like 15,000 feet altitude. So, so I don't know who you're comparing yourself to...

Reilly: That was pre POTS, that was pre POTS, so I'm not sure if I could do it anymore, but, but yeah, I really did enjoy some of those trips when, before I, before I was diagnosed.

Jill Brook: Okay. Alright. So what was your first sign that something was off?

Reilly: Yeah, so I actually, I had mostly [00:04:00] cardiac symptoms to start. And it was about two weeks after I had a COVID infection that I started getting, you know, chest pain, heart palpitations, extreme fatigue. I could feel my heart, you know, racing. And so because endocarditis was in the news at that time and there was a lot of, you know, speculation around how either the vaccine or the disease itself is affecting cardiac function, they were a little bit worried that, that maybe it, it looked like an endocarditis or something, which, you know, it, it didn't.

But yeah, it was mostly cardiac symptoms, which were scary because that's not the normal. And as a nurse, you know, I, I typically don't take myself to the ER for anything. And so it was that fine line of like, what's going on? But yeah, the chest pain, it was, it was pretty substantial at that time. And so that, those were kind of my first few symptoms, those first few weeks when I was trying to figure out what was going on.

Jill Brook: Yeah. Yeah. And so do [00:05:00] you, so, so when a nurse has chest pain but doesn't wanna go to the ER, what does one tell oneself?

Reilly: You just tell yourself that it'll pass and you know you'll be fine. You kind of give yourself a bit of a time limit. You know, how long, how long do I let this go on before I, I become the patient, not the provider. So, and you know, sometimes it would just last two or three minutes and then I would be okay and other times,

I've had episodes that last upwards of 30 to 40 minutes straight of the chest pain. So it, it really varied. But but yeah, I was kind of, I, I never took myself to the, to the ER for, for that, so whether that's a good thing or a bad thing, I'm not sure.

Jill Brook: Yeah. Can I ask about like what was the evolution of hypotheses you had in your head about what was going on?

Reilly: I think for me, like I was, I was pretty convinced at the start I also had maybe a, a presentation of endocarditis or, or something along those lines just with how the timing was post COVID infection. I'm very [00:06:00] fortunate to be one of the few folks in my area who still has a, a family doctor, and so I was able to check in with her right away and we started working on

a slew of tests and, and blood work and everything. So I think if I didn't have a, a primary care provider at the time, I probably would've maybe taken myself to the emergency or, or, or elsewhere. But I felt confident enough that, you know, I was, I was gonna get it looked into fairly fast compared to maybe if I didn't have, have a family physician.

So I kind of just stuck to that route at the beginning.

Jill Brook: So how long did it take you to figure out that it was POTS and how did you figure it out?

Reilly: From the time my symptoms started to, the time I actually got diagnosed was just over two years. And so I spent the first year working with my family physician doing, you know, a holter and an echo and, and all the testing. A bunch of lab work. Couldn't really figure out what was wrong as

probably most people go through. And so then then I moved [00:07:00] through internal medicine and then I moved over to an endocrinology specialist. Still wasn't really getting any answers. And so, it's difficult in Canada because the wait times are so, so long to see specialists and so you wait six months, you see your internal medicine doctor, maybe you don't get the answers you need or, or it's not the right avenue, and then you're kind of starting that whole process over again.

So I actually feel very fortunate it only took two years. But it was a very long two years of having to, to advocate for myself to finally move in the right direction for sure.

Jill Brook: So were you working during those two years and gutting it out, or what was life like during that

Reilly: time?

I was, yeah. So I had actually just finished my master's degree and I was looking for more of an admin leadership role within my, my realm. I kind of left bedside nursing partly because I could not handle the shift work and I knew that I wanted to get into health leadership and COVID kind of presented an interesting [00:08:00] opportunity for a lot of younger nurses where

there's a, a plethora of management and leadership roles that nobody really wants to step into. And so I kind of was able to fast track myself into where I'm at now. But I was already kind of working towards an admin heavy, you know, desk job where I wasn't on my feet for 12 hours a day. So luckily I was able to, you know, other than the odd day or or whatnot, I was able to, to still work throughout the, the whole process.

Jill Brook: And then what did it mean to you to get a diagnosis? Did that open up a lot of things that helped.

Reilly: I think, yeah, it was very interesting because the first thought was how validated I felt to finally know that I wasn't just making it up or it wasn't just anxiety, and that the advocacy I had for myself and, and the people around me that had been supporting me. Like it was, it was a very surreal kind of feeling to be like, okay, this is what it is.

This is kind of what I thought it was. And then the second thought I had after that was, oh, well this isn't really something you can cure. [00:09:00] This is not something that's ever gonna go away. So then it was kind of like that, that uneasy feeling of knowing that it's gonna be something, you know, you have to live with and, and figure it out as you go.

And so it was definitely mixed emotions, but I think for the most part, I was just happy to finally feel like I was heard. And to get that diagnosis really kind of propelled the, the last year of my life in a, in a better direction.

Jill Brook: So it's a little bit interesting that it sounds like you had all the normal feelings that patients go through, even though you are a healthcare provider. So that like, that doesn't protect you from worrying that you're just having anxiety or making it up in your head.

Reilly: Yeah. No, it, it was a very interesting feeling. 'cause for the most part in, in my life, I've been very fortunate to have very good physical health and so I hadn't really had to navigate the system too, too much. But then trying to investigate this, going through different service providers, going through different specialists you [00:10:00] know, hitting a lot of dead ends along the way, and then having to kind of start from square one was a very, it was a very insightful opportunity for me to realize like what patients navigate, how much health literacy you have to have to navigate the system right now. How much advocacy you have to have for yourself which is exhausting for patients for sure, and especially in, in, in the Canadian system where we have these excruciating wait times just to see someone.

Yeah, it was a very, it was a very interesting shift from kind of how I had seen the healthcare system as a, as a nurse, and then going into it as a patient. It was quite eye-opening for sure.

Jill Brook: Wow. Well, okay, so, so I was gonna ask you this later, but maybe I'll ask you now. Does, does this experience change the way that you think about your patients or treat your patients, or do you think it's changed you as a healthcare professional?

Reilly: I think, I think I have a lot more empathy for the [00:11:00] logistics that surround healthcare. You know, it, it's more, it's not just about, you know, the provider patient interaction. It is not just about the medical information and especially living up here in the north like we have poor access to specialists and different types of testing and all of these things.

So sometimes folks have to, you know, sit on a plane for an hour and a half to two hours just to go to Vancouver, just to see a specialist. And all of those logistics, transport, leaving your family, finding childcare for some folks, like that all really adds to the stress of going through the system and navigating it.

And I think it's just so much more than what's going on physically. It's all of those operational pieces too. So I, I definitely have a lot more empathy for not just the patient, but also the family and their support system that have to navigate all of those pieces as well. Yeah, it's been, it's been really interesting to see how that, that works.

Jill Brook: [00:12:00] So once you were able to know what was going on with you, did you find anything that helped a lot.

Reilly: I definitely found a few things. So one of the things, like I started on propanolol which is a beta blocker, which really helps my resting, my resting heart rate. I was already kind of doing a lot of salt and water leading up to it just because I, I kind of suspected that, that I did have POTS from, from my own research.

And then I think for me, what actually was the, the biggest shift was knowing that it's not necessarily just something I can overcome mentally. Like, it's not like, oh, I just need to push myself to walk that extra 5k, or to push myself through a heat wave. Like my body will physically shut down on me.

And so I think after getting diagnosed, I realized that I don't need to constantly push the boundary because what's happening, like the symptoms that are happening inside me are very much real. And so I think if anything, this past year, I've really learned how [00:13:00] to navigate that in a good way, have good boundaries with myself, with my friends and family, knowing what I'm capable of, but still wanting to

kind of live life. And I think too, not being scared that, you know, if I did get chest pain, my heart's gonna explode or anything like that. Like just knowing that, you know, it's just a symptom of the POTS and I just need to find, you know, different strategies to work through it. I think that's probably been one of the most helpful things since getting diagnosed.

Jill Brook: So did you learn that the hard way? Like did you try to just

push through on a few hikes and things? How did that go?

Reilly: Yeah, it wasn't good. So, while I was kind of in this testing phase, a couple months before I actually got diagnosed, I was in I was in Belize with my partner at the time and some of our friends, and I'd always been a bit of an adrenaline junkie, like I loved skydiving, bungee jumping, all the things.

And so we had booked a a day excursion where there was zip lining and there was cave tubing, and it was really warm and I [00:14:00] probably hadn't hydrated enough. And I just thought, you know, I'll just push through it. Like I love zip lining, it's gonna be a great day, and my body completely caved on me by the end of that day.

Like I had one of the worst kind of like POTS episodes I had ever had. You know, laying on the rocks in front of a group of tourists, like not even able to move. So I think after that experience, which was so embarrassing for me at the time, but I think after that day, you know, I was like, okay, this is very real

what's happening. It's not like a mental thing that I can just push through. My body is physically saying, like, you can't move right now. And so I, I think at that point, even though I hadn't got the diagnosis yet, I started taking, you know, what I was feeling a little bit more seriously and kind of weighing my options when it comes to what my limits might be.

So yeah, that was not a fun way to, to figure out my limits. But in hindsight, it was one of those kind of aha moments where I started taking those limits a little bit more [00:15:00] seriously.

Jill Brook: Wow. You know, your story is making me think about, I forget who the researcher is, but there's a couple researchers who have published papers, honestly saying that they have a hypothesis that POTS is just a phobia of being upright. And I think about people like you who are zip lining with POTS and like,

and it's so clearly, I mean, it's, it's, to me, it's so laughable that POTS would be a phobia of standing up, being upright for a million reasons, but especially when people like you talk about what they do for fun. So I, I hope those people talk to some people like you.

Reilly: Yeah. Yeah. It's definitely not just me being scared of it. It would, it is something I had enjoyed, you know, many years before I, I, I got my diagnosis and so it's a little bit disheartening knowing that I may be, you know, maybe skydiving is not something I'm gonna do in the future again. But but yeah, [00:16:00] I also think that I've been through enough situations trying to push myself where I know what the consequences look like and I'd much rather respect my limits.

Jill Brook: So how much can you do now? You know, if, if you, if you are really good about your hydration or whatnot?

Reilly: Yeah, it's slowly getting better. I would say right now I could probably do a 30 minute walk, no problem. Which is even an improvement from last year where I was doing about 10 to 15 minutes and then needing to sit down. So I walk my dog every day. I like to go golfing, but again, sometimes I'll get a cart if I'm not feeling great. I'll try and walk a little bit of it.

So just trying to modify those things. I'm definitely slowly getting there though, and starting to monitor my heart rate a lot more and getting back to a point where I can be in the gym more regularly. As long as I'm, you know, staying hydrated, eating well, feeling like it's a good day to, to do that.

And so over the past year I've definitely made strides, but I think I still have a long way to go in terms of, of where I'd hopefully like [00:17:00] to see myself.

Jill Brook: And so do you know if you have any of the common comorbid conditions like MCAS? And the reason I'm asking is because I can see where you scratch yourself on your neck.

Reilly: Yeah, it's funny 'cause I mean, as a nurse I'm constantly reading, you know, new literature. I read every POTS article I could find, but as of right now, haven't been diagnosed with anything. I'm kind of just taking it one step at a time and trying to get a handle on some of the POTS symptoms, but I don't think it's out of the question.

I think there definitely might be, you know, one or two other things going on, but it's something I'll, I'll have to explore over the next year. So.

Jill Brook: Yeah. So is there anything that you wish you had known sooner?

Reilly: Good question. I think, I think going back to, you know, the limits are real, the boundaries are real, and not trying to supersede those just because I think I can. It definitely put me in a few really crappy situations where I was completely like, like [00:18:00] zero left in the tank. And in some pretty unfortunate spots too, where maybe I couldn't get to a bed or a couch or a, a chair pretty fast.

So I think I probably, if looking back, I wish I would've taken that more seriously and not pushed myself as hard in some of those situations.

Jill Brook: Are you talking about more like outdoor adventures?

Reilly: Yes.

Jill Brook: Do you wanna talk about this?

Reilly: You know, being in other countries maybe going on a walk and getting further and further away from the hotel or the Airbnb and then realizing there's a whole other half of the walk back to do. Like,

I definitely tried, maybe not pretended like nothing was going on, but, but really thought it was more of a mental thing for me and that I just had to, you know, stick it through. But really that that wasn't the case 'cause my body had a clear message saying, nope, nope, you're at your limit for the day.

Jill Brook: Has it been hard, socially to shift? It sounds like you probably did a lot of like really active, outdoorsy, [00:19:00] athletic stuff and you probably hung out with people who did that kind of stuff and have, have you had to make a shift?

Reilly: I think I have had to make a shift for sure. Like my friends and family and my support system has have been great over the past few years, noting what I can and can't do and, and really respectful of, of my boundaries. But yeah, life looks a lot different. Like I, I can't walk an 18 hole, you know, golf course anymore.

I can't, you know, walk 10 or 15 K at once, especially in the heat. I'm really temperature intolerant, kind of always have been as a kid, but it's definitely gotten a lot worse. And so it's really hard in the summer because everyone's super social. Everyone's going to the lake and, and floating around and doing all these fun things.

And I feel it, it definitely hits harder in the summer for me that I, I, I usually can't participate in some of those things, especially if it's, you know, getting warmer. But, but yeah, my friends and family have been, have been great about it, [00:20:00] but it, yeah, it, it, it feels exclusionary sometimes. Right? And I don't wanna put myself in the position where I'm like, oh, I'll be fine,

and then, and knowing that I probably won't. So it, it, it's harder in the summer for sure I would say for me.

Jill Brook: Do you have any I don't know, insights or tips for patients? So since you're a healthcare provider who has also been the patient who has had the weird thing that nobody can figure out what it is and the tests are coming back normal and you're trying to convince everyone to keep looking and to keep working on your behalf, and you don't wanna look like you're just making it up in your head and you don't wanna look like you're just anxious,

like, strategies or any ways that you talk to healthcare providers or any, I don't know, what was your approach?

Reilly: Yeah, that's a great question. I think, you know, it just comes back to you have to be your own best advocate and really making sure that you're highlighting, you [00:21:00] know, the, the high stress pieces or, or those those bigger pieces. You know, you say chest pain to any provider, they're gonna take that pretty seriously.

And so, I did have some of those kind of more red flag symptoms that they had investigated. But then once those came back, those testings came back, you know, pretty normal, there was definitely a, a decrease in, in how urgent they, you know, I was seen or had referrals for. And so it was a fine line between being patient and, and being a great advocate for yourself, knowing that something is still wrong.

And I honestly think the other part of it for me, I just was very fortunate to have a high level of health literacy. I could read my own lab results, I could read my own lab reqs. I kind of knew what direction they were going in and I recognized that most patients don't have that, that level of of knowledge.

And so even like I remember I had to do a sample of some sort at the lab, and the [00:22:00] lab req that they had printed out was actually from three weeks before I was getting the same test, but three weeks later. But there was a little bit a, a, a slight change in the, in the testing. So they would've processed it wrong

if I couldn't read my own lab req and told them that it was the wrong one and that there was a newer up to date one, I would've had to do the test again. So it was one of those situations where I was so lucky that I, I had good health literacy and read my own requisition and knew that it was wrong, and then they printed out the right one and it was all great.

But for the average person going through the system, that probably wouldn't have gotten caught and they would've had to repeat the test. So I just, there was definitely points in it where I think I got diagnosed and I say as fast as I did, even though it took two years, but honestly, because I could read some of those results myself and advocate for myself in a good way.

And my family physician took me pretty seriously knowing that I had, you know, a good level of health literacy and, and could really, you know, speak to what I was feeling from both a patient [00:23:00] and a provider standpoint and using that kind of medical terminology. It's definitely advantageous in, in the system here.

Jill Brook: So did you say that you figured out or you suspected you had POTS before your doctor did? And if so, how did you bring that up? How did you nicely mention that?

Reilly: Yeah, so my family physician, she actually mentioned it maybe within that first year of looking at, at my symptoms, but we did a bit of like a, you know, a poor man's tilt test and my blood pressure was relatively stable and so they, they ruled it out right away. They said, you know, you don't have POTS because your blood pressure isn't changing as much as we would see.

And when I actually got diagnosed by it by a different specialist, they said, you know, we would call this atypical POTS where you have, you know, 90% of all the other symptoms, but my blood pressure still doesn't change as much as, as, as most people with POTS does. And so I think the, the education for nurses, physicians, whoever is so limited because they look at it and they're like, oh, [00:24:00] well you don't have one of those key findings.

We rule it out. And so we didn't even think about it for, you know, six months after that. And then I had started to revisit the idea. And my therapist actually was one of the ones who was like, remember when, you know, your doctor was talking about that, like, have you looked more into it? And so that's when her and I, you know, kind of started talking about it.

And I had, I had actually stuck out a, a, a private clinic down in Vancouver that I took myself to, to get diagnosed because I wasn't getting anywhere in our, in our normal healthcare system. And that's also a privilege to be able to access, you know, pay for service.

Jill Brook: Oh, okay. Interesting. And that's, it's also interesting that I think different providers have different ideas about what blood pressure should do in POTS. I know that here in the US they mainly talk about the heart rate changing, and they talk about the blood pressure not changing too much. And if the blood pressure does change too much, then they either call it hyper adrenergic POTS or just some [00:25:00] various kinds of hypotension.

And so I think that, yeah, that makes it hard. There's maybe some confusion about that, 'cause I hear people all the time talk about blood pressure in POTS and I, they're not always saying consistent things.

Reilly: Yeah, and it seems to almost be the opposite, whereas they were not very concerned with my heart rate, which would go from like 80 to 130 with change in movement. But, but the blood pressure is what they were kind of hung up on. And they kind of ruled it out without further investigation because, because of my blood pressure being relatively stable when changing positions.

So yeah, it's, it's interesting the, the level of education and knowledge that the, that the providers have, even just across Canada.

Jill Brook: Yeah. Well, I guess it's, I don't know if it's, it's heartening or disheartening to know that the healthcare providers don't have some special access or some special in that the rest of us don't have. Gosh. [00:26:00] Has anything at all positive come from having POTS?

Reilly: Oh, that's a good question. I think one of the things for me is seeing what, you know, one of our patients would go through and navigate especially when it comes to chronic disease. Or, you know, something that's not super acute. We're a very, like, downstream approach to healthcare in Canada, especially post COVID.

And so we're often very in a place where we're, we're looking at these urgent, acute cases. Whereas folks with chronic disease or, you know, long-term issues, it takes so, so, so long and so much advocacy and so much education to get to the same place. And so it's given me a lot of empathy for, for how clients navigate the system, especially being from somewhere up north where we don't have easy access to specialists and diagnostics and things.

And even just how much money that can cost to fly yourself down to, to a center like that. [00:27:00] So I think I do look at the patient experience a little bit differently, which is probably a good thing after going through it myself. So that's, I think that's been one of the positive things for sure.

Jill Brook: So if you were to kind of like remember your past self at your very worst in terms of POTS, like at your absolute toughest time, what would you say to that version of yourself now that you have more experience?

Reilly: I think for me it's, you know, don't give up. Like the, the symptoms are real. What you're feeling is real. And you just have to keep going through the steps and seeing the different doctors and doing the different tests to get to where you wanna be. And then once you have that validation and you have that, because, you know, education is power and so the knowledge of of what your diagnosis looks like is only gonna help you navigate it.

And then you're not feeling so in the dark about what's going on within your own body. [00:28:00] Yeah, I, it definitely felt very discouraged many times. There was a lot of tears had over those two years, you know, trying to figure out what was wrong with me and is it all in my head. And so I think, you know, as hard as, as those two years were, like, I'm definitely in a much better place now.

And I would just, yeah. I would tell my, my past self, you know, just, just don't give up. It, it is real, and you're gonna get answers. You just have to keep going.

Jill Brook: Yeah. Are you up for a speed round where you just say the first word that comes to your head?

Reilly: Sure. Okay, let's do it.

Jill Brook: Okay. What's your favorite way to get salt?

Reilly: Oh, goldfish. I love goldfish crackers.

Jill Brook: What is the drink that you find the most hydrating?

Reilly: I just drink a ton of water, just plain.

Jill Brook: What is your favorite time of the day and why?

Reilly: Oh, probably like noon. It's usually, you know, midday is when I feel my best. The mornings are usually my hardest part of the day.

Jill Brook: Where [00:29:00] is your favorite place to spend time?

Reilly: Anywhere that my friends and family are.

Jill Brook: How many other POTS patients have you ever met face to face?

Reilly: Zero.

Jill Brook: What is one word that describes what it's like to live with a chronic illness?

Reilly: Tiring.

Jill Brook: What is some good advice anyone ever gave you?

Reilly: One of my favorite pieces of advice is if it's not gonna matter in five years, don't spend more than five minutes worrying about it.

Jill Brook: Oh, nice. What is something small or inexpensive that brings you comfort or joy?

Reilly: I take a lot of bubble baths, so I, I spend some money on really nice, like bath products 'cause that's like my, yeah, it's like how I, how I calm myself down after a, a long day at work.

Jill Brook: Who is somebody that you admire?

Reilly: My mom.

Jill Brook: Do you wanna say why?

Reilly: Oh, she's just, I know everyone says this, but [00:30:00] she's just like the best mom I could ask for. She's so strong. She raised me and my three brothers you know, alongside my dad, did a fabulous job. And she put her dreams on hold and then once we were all out of high school, she went and got her master's, which was one of her big dreams in life.

She just got her MBA the other year. And so, she was really able to, to juggle it all and yeah, I can't thank her enough.

Jill Brook: What is something you're proud of?

Reilly: I think I would say my career. You know, I got my degree in nursing, got my master's, and then have worked my way up pretty fast to get to, to where I am right now.

Jill Brook: What is the toughest thing about POTS?

Reilly: Ooh. I think the unpredictability of it, not knowing how you're gonna feel every day. Makes it hard to plan, and I'm a planner.

Jill Brook: Oh yeah. What helps you fall asleep, if anything?

Reilly: Mm. I usually listen to like a bedtime, like a bedtime story like a meditation kind of story, and, and try and turn my brain off.

Jill Brook: What helps you [00:31:00] get energy when you need it?

Reilly: Ooh, fresh air, usually, if I go outside.

Jill Brook: What is a gift that you would have sent to every POTS patient in the world if you had infinite funds?

Reilly: Oh, that's a good question. Goldfish. I think everyone should have a bag of goldfish in their purse just in case.

Jill Brook: Nice. What is something that you're grateful for?

Reilly: Mm. My support system for sure couldn't have gotten through the last few years without all of them.

Jill Brook: Okay. Can you finish this sentence please? I love it when...

Reilly: I get to have a good night's sleep.

Jill Brook: Oh yeah. I hate it when...

Reilly: It's really hot outside.

Jill Brook: Okay. Last couple questions. Have you ever had to sit down or lie down in a weird place because of POTS? And if so, where was it besides that one rock in front of all the tourists.

Reilly: Yes, I've definitely had to sit down, you know, like in grocery stores or yeah, while traveling, like on the curb of some [00:32:00] random street in the middle of a, a country that I don't know the language. Yeah, the Belize one was probably the worst.

Jill Brook: So you you haven't let it stop you. You, you still are traveling and you are sitting on curbs around the world as needed.

Reilly: Yes, it just looks a little bit different. And I take a lot more taxis than I probably did before, but, but yeah, I still love to travel.

Jill Brook: Good for you. And last question, is there anything that you'd like to say to your fellow POTS patients out there who may be listening and or is there anything that you just wish everybody knew more about POTS?

Reilly: Oh, good question. I think, you know, there's a bigger community of folks with POTS or who know about POTS than at least I thought at the beginning. And so don't feel like you're all alone, don't feel like you're isolated in what you're going through, especially the process of advocating for yourself and getting diagnosed.

It's something that I think the vast majority of POTS patients have had to do is, is navigate that system for [00:33:00] months or years. And so, you know, find Facebook groups. Find, you know, this podcast, find, find ways you can connect with people even if you live, you know, in a small town like me and, and maybe don't get to, to see other folks with POTS face to face.

Jill Brook: Well, Reilly, thank you so much for sharing your story and all of your insights and tips with us. We so appreciate it and I know that everybody out there listening is really pulling for things to only get better for you going forward.

Reilly: Yeah. Thank you so much for having me. This was great.

Jill Brook: Okay, listeners, that's all for today. We'll be back again next week, but until then, thank you for listening, remember you're not alone, and please join us again soon.