Episode Transcript
POTS Diary with Erin
[00:00:00] Jill Brook: Hello, fellow POTS patients and super duper people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of The POTS Diaries with Erin. Erin, thank you so much for joining us today.
[00:00:14] Erin: Hi, thank you so much for having me.
[00:00:16] Jill Brook: So we're excited to learn some basics with you, and it's funny because when we were talking two seconds ago, you phrased this question better than I did, so I'm going to phrase it as you did. Erin, what's your deal?
[00:00:26] Erin: Well, I am a newly graduated student, if you will. I graduated from Maryville University just a couple months ago, and now I am starting grad school, so I'm just hopping from one adventure to another.
[00:00:45] Jill Brook: Congratulations.
[00:00:47] Erin: Thank you! It's a scary time, but it's overwhelming, but I'm very excited, and I am a lifetime New Englander, so I am from Connecticut, I was born in Connecticut, grew up in Connecticut, I have not ever lived anywhere else, and that's been okay with me, I love it well enough.
[00:01:07] Jill Brook: What is your town known for?
[00:01:09] Erin: I'm from Wolcott, Connecticut, and I did find out just on a whim that the father of Louisa May Alcott, who wrote Little Women, was born here. And I thought that was something interesting
[00:01:25] Jill Brook: Really
[00:01:25] Erin: about it, because besides that, there's not much I can say.
That's
[00:01:30] Jill Brook: okay,
[00:01:30] Erin: a very interesting idea.
[00:01:32] Jill Brook: perfect, okay. How would your friends or family describe your personality?
[00:01:36] Erin: I'm very bookish.
I
am pretty much reading or writing every minute of every day. I'm definitely more introverted, but I would say that, you know, a lot of people do tell me I present extroverted. you know in certain social venues even though in my mind I think that that is not me at all I think I'm very introverted. sO I think that my friends think that if I'm in the right space I can come out of my shell a little bit and I'm you know very talkative.
[00:02:08] Jill Brook: Okay, so you are always either reading or writing, so I have to ask you about any book recommendations. What's your favorite book? Or if you were stuck on a desert island, what would be the book
[00:02:18] Erin: oh gosh. I have so many, it's so hard. I do have a bookstagram. I'm a very lazy bookstagram, but I do have one and I talk quite a lot on there about all the books that I read.
But I'm definitely a lazy bookstagrammer. It's not a perfect aesthetic or a perfect spread. It's just me rambling about books on Instagram.
[00:02:40] Jill Brook: is Bookstagram?don't even know what this is.
[00:02:42] Erin: Oh, bookstagram is basically just a community of book lovers, just like there's booktalk on tiktok, bookstagram is just the little corner of instagram dedicated to people who love to read, so just basically posting pictures of books and talking about books and bookshelves and everything you can think of, that's basically all it is. I love it. I just started one on a whim and I've met great people as well through that little community.
[00:03:11] Jill Brook: Wow. That's fantastic. I am in love with Terry Pratchett books. He writes the Discworld series, and it's kind of a fantasy series, but it's just kind of commentary on the real world using fantasy. And it's hilarious. Like, every sentence is hilarious. And the reason I like it so much is because I don't sleep that well, and if I wake up in the middle of the night, the crucial thing for me is to not start thinking.
And so I play his books all night, and I can always count on wherever it is in the book when I wake up, I will be amused, and I will want to pay attention to every single word because I feel like there's just a gem in every sentence of his. But he has like 40 books in the series. And I've finished them and I've gone through them a second time and even a third time.
And they're kind of not keeping my attention anymore. And so I'm on the lookout for the next series of things that can keep me keep me not thinking throughout the night. So that's why I'm always looking for book recommendations.
[00:04:16] Erin: I love reading for escapism. I get it. I don't want to think. I just want to read. It makes so much
[00:04:23] Jill Brook: Okay, so besides reading and writing, if we make you brag about yourself, what are you good at?
[00:04:30] Erin: I hate to say it but I'm quite good at school. I've always been that kid who just,don't know, that was what I was good at. I don't even mean it in a way of like, oh, I'm so good at getting good at school. Because I don't really feel that way, but for some reason, I felt like it's just something I could do. And did well in it enough where I was like, oh, like I guess this is gonna be my thing for a bit. This is cool. And obviously it's tough to kind of separate that from what I already said that reading and writing. good at time management.
I don't know. I can micromanage to a crazy degree. And I guess that's, that's my big secret. That's how I get things done. I don't know.
[00:05:17] Jill Brook: I won't probe into this, but you sound almost apologetic.
[00:05:20] Erin: A little bit tiny bit.
[00:05:23] Jill Brook: Okay, so what are you passionate about?
[00:05:27] Erin: Well, writing is my entire life. Passionate to the point of it that like I can't really live without it. I wake up every day and that's what gets me out of bed. That's what gets me moving. That's, you know, how I almost frame time and segments of my life of when I was working on certain things and different projects.
It all ties back to writing in a very surreal way. And writing is a bit of an... Isolated profession or an isolated endeavor, I know that. But so it is a little hard because you do kind of live in your own world and you live in your own head and you work on your projects and then you have to come back to reality every once in a while and look around and be like, okay, get your bearings. I'm here. And, you know, talk to people.
[00:06:13] Jill Brook: But how neat, yeah, but it sounds like you have a super rich inner world though.
[00:06:19] Erin: I do. I will blame it on being a Pisces. I am a Pisces sun and moon. That's a very live in your head kind of zodiac sign. If I'm ever gonna read into astrology, that's when I do. I'm like, I am through and through that is my personality type. It's very busy up here in my brain, and I definitely, yeah, I live in my head, for good or ill.
I don't know. that's just how it is.
[00:06:44] Jill Brook: Certain kinds of writing you like to do more, or do you do all kinds, like fiction, nonfiction?
[00:06:52] Erin: I very much Prefer out of everything short fiction. I love short fiction as a medium. I just love it so much. I feel like there's so much versatility in it. It's so, so fun. And you have a sense of accomplishment, being able to make something. It's a little glimpse into usually just one emotion or one theme or one image, and you just kind of are able to give someone a very, very vivid glimpse of something.
And I think there's really great power in that. And I am working on a novel, but that is such a long term project that you know, balancing that with life and school is very hard so I do favor short fiction. It makes me feel like I'm getting stuff done, and I am creating, and I'm making things that, you know, are meaningful, and I can share them, and I've, you know, made lots of connections with people just through writing and a love of writing and storytelling .
[00:07:41] Jill Brook: How neat.
[00:07:42] Erin: right now. Yeah, it's my favorite.
[00:07:44] Jill Brook: So are you going to graduate school for writing?
[00:07:47] Erin: I am. I got my BA in English. And now I'm getting my master's in English. I definitely, I debated getting an MFA, you know, in creative writing, because I love it so much. But ultimately, I don't know, I think that I still wanted to stick with what my original game plan was which was just to get a master's in english which is still incredibly versatile and really broad actually I mean the amount of opportunities and courses and you know how I can apply writing is way more it's more advantageous to a career and I do still love it it's not that I I am completely dedicated to fiction.
I do love writing non fiction and all other genres, so I wanted to continue with that versatility and learn more and more and dedicate myself to this. And yeah, so I just kicked off grad school and it's kind of terrifying, but also exciting.
[00:08:43] Jill Brook: Well, okay, so let's move on to POTS. Did you have a life before POTS? And if so, how old were you when you got POTS? And what did your life look like when POTS entered the scene?
[00:08:58] Erin: When POTS entered the scene, I was 21, and POTS is really actually a secondary diagnosis. I originally had a lot of autoimmune issues and was diagnosed with lupus, and that was in my late teens, early 20s. And so POTS kind of hit me out of nowhere because I was already locked in like, oh, I have lupus, and this is what's happening, and , I'm going to work with this, I'm going to do what I have to do to function and to feel better. And then POTS came out of left field. I did not see it coming at all, because it was a completely different animal. I had never experienced POTS symptoms like that. It was very shocking, it was very scary. And when that came along, it definitely changed things for me.
I think that even when I had the lupus diagnosis and I did have, you know, chronic things that were frustrating and difficult, I was still functioning quite well on a daily basis, I still was able to get out really. I still really had more of a life, you know, outside of my room, outside of my own little space here, but POTS did kind of trap me a bit.
It's been very difficult, too begin to try and figure out how to, you know, get back to normal quote unquote, when dealing with this kind of issue. So,
[00:10:20] Jill Brook: Yeah, so like what was your first sign? Did you have a moment where a symptom came on or was it kind of slow and gradual or what happened?
[00:10:29] Erin: It was dog days of summer. I mean, really hot, you know, stifling summer. And I was definitely not feeling great, but in my mind I thought, you know, hey, I have lupus. I'm gonna flare sometimes, I'm gonna feel bad sometimes. It's no big deal. You'll be fine.
Eventually, I think I just had never had, what I now realized was I was having like pre syncope and I didn't know it at the time. I didn't really know what I was experiencing, but I was so severely lightheaded and weak. I mean to the point where I could barely stand up, I was really just bedridden, super dizzy, super out of it.
And I had no clue what was going on. I thought I was on my deathbed. I thought things were grim. I was like, oh no, this is not going to be good for me. Yeah, very scary, very different than anything else. it was somewhat sudden. Like one day it seemed like it all hit, like just something hit me.
And I will say I've always been deemed, even when I was a child, and even in my teens from doctors, you know, they kind of said, you're a very sensitive person. Which I almost kind of took offense to. I was always like, Hey, like, what do you mean? And they're just like, oh, you're just sensitive. It seems like your body's just sensitive and you just sometimes can't handle things. And yeah, I don't know I've never been able to handle mornings my whole life. Always quite sick in the mornings Just little things that started to add up in my head where I was like, wow, maybe I always Did have a form of this to some degree and then obviously now it's it's a bit of a beast, but you know, I'm managing so
[00:12:10] Jill Brook: Oh, good, good, good. So with having a lupus diagnosis, you know, so many patients say that their POTS didn't get diagnosed for a long time because it was just attributed to anxiety or it's all in your head. I mean, did yours get attributed to your lupus? I mean, did it help that you already maybe had a... Dr. Network to go to who knew you or
[00:12:30] Erin: Yeah, definitely because I I was no stranger to the world of chronic illness, that's for sure. That was not new to me. So that is somewhat of you know, a good thing.
I originally, yes, I was you know, I think I went to the ER twice that first time that I mean I was so so sick I couldn't stand up. I mean I was falling over I was so out of it and I think at the time yeah they probably looked at my medical history looked at my chart and they probably said oh like you if you have lupus if you have this history of stuff then no you're probably just having some type of flare or some type of reaction or something just is amiss but it's probably just autoimmune you're fine you know. Go home and rest and drink some water and maybe you'll be better obviously that wasn't the case but I did get very lucky you because it was my rheumatologist who I had gone in maybe a week after I'd been at the ER. Was still very sick still couldn't do much and she had you know jotted down like I think you might have POTS and brought it up just on a whim and sent me to a cardiologist who then sent me to a different specialist and I started that thing until I did get diagnosed. So I do kind of owe a thank you for kind of luckily... Just seeing the state I was in and maybe just having that inkling that maybe it was this Which set me on the right path.
[00:13:53] Jill Brook: so before we go on with your POTS story, if you don't mind me asking, what are the things that you're supposed to do lifestyle wise to manage lupus? Because the reason I'm asking this is that we're kind of familiar with one corner of the chronic illness world. But lupus is a big deal. Is lupus like POTS where you have all these things you're supposed to do every day to manage it? Or what?
[00:14:19] Erin: Definitely not as much every day as with POTS.. My experience with POTS is it's like a full time job You gotta monitor like mad and be on top of everything your heart rate, your blood pressure, What you ate, how much you're eating, how much salt, how much water, it's constant. It is a constant tracking task to to have to work every single day.
Lupus was not really like that. Lupus was very muscular for me. I had a lot of joint pain, muscle pain, muscle weakness, muscle wasting, you know, I lost a lot of weight. I felt sicker, but I was not debilitated to the same point I have been with POTS. It was a very different, very, very different experience.
And I did work with a naturopath for lupus. And it largely, I feel like, turned it around. I mean, my blood work did a complete 180. It was much better. She did wonders for me, so I felt like... Just working with supplements and exercise and more broad long term, shifts did a lot for me, you know, even within like a six month period, did a lot for helping with lupus. POTS is just up and down, up and down. It's a bit of a roller coaster, it's different.
And yeah, and it is daily, way more daily management. But either way, I still think that naturopathic work is really, really helpful across the board you know for POTS or for lupus.
[00:15:43] Jill Brook: So, once you had a diagnosis and knew what was going on, did that help you find things that made you a whole lot better?
[00:15:52] Erin: yes yes I I think that the first step was compression socks definitely. I think once I realized that I could do a little something to try and counteract all you know the blood pooling and try and get more blood up to my brain and not all in the bottom half of my body. That that would help , just in the tiniest bit from when I wake up. And then salt, tons and tons of salt, just crazy amounts of salt. I never in my life would think that I would be ingesting as much salt as I do. And how much of a difference it makes. It's completely integral to my daily life.
I wouldn't be able to... Do anything without these little things. It's crazy. Yeah, so definitely there were all the basic things that do help. But still frustrating, you know? 'cause you get tired, you get tired of the management, sometimes you slack off a little bit and then you pay for it.
And so once again, it's ups and downs and ups and downs and I did, for the most part, feel like I got about three months between like very bad flare ups. Just for me personally, I feel like when I started to track it or try and just be more aware of when I was worse and when I was slightly better, seemed about three months. I'd have three months of like, okay, you know, not so bad, you're doing all right.
And then I would just fall apart for two weeks, two and a half weeks, sometimes three. So once again, it's a rollercoaster. It's
[00:17:18] Jill Brook: tough.
What does falling apart mean for you?
[00:17:21] Erin: It means you're largely being bedridden for the most part. Now that I'm aware of it and I know what it is, so I don't have to like panic about how I'm feeling, I'm like, oh, here we are again.
That does help me turn the dial down a little bit on being overwhelmed by those periods of time. Say that the POTS weakness and, you know, that lightheadedness is really, for people who haven't experienced it, is very, very, severe. and you really can't do anything.. you can barely lift an arm, and when you lift the arm everything feels so heavy and so tired.. I do have friends and family that have been so, so supportive. When you do get to that spot, which is falling apart, as I call it, you know, when you fall apart, you need, you know, a little help, just, usually just with, like, little things, with food, and just little things when, you know, being on your feet for any stretch of time is way more difficult than it usually is, so, eventually, you get way back up.
[00:18:39] Jill Brook: Yeah, so I'd love to hear about the intersection of POTS, brain fog, or other issues of the brain not getting enough circulation, and your writing, and both directions. How does POTS affect your writing? How does writing affect your pOTS or living with POTS? And I'm not only curious about like you know obviously brain fog makes it harder to find words and things but I don't know do you feel like you write differently when your brain is maybe a little starved or...
[00:19:12] Erin: it's been, it's very strange, because, in a way, I feel like, yes, right when you're in the thick of it, yes, it's hard to find words. It's hard to to do much of anything. You're kind of living in a haze. Everything's very disorienting. But writing has always been this way for me to find so much clarity about My life and especially things that are very difficult to deal with. Feelings of grief, feelings of frustration and are very consuming if you don't have an outlet and writing has always been the outlet. It's funny because I had these two different diagnoses from two kind of different points in my life and both of them I had written short stories. Right around the time that I was diagnosed for each of those.
So I wrote one right after I was diagnosed with lupus, and I wrote one right after I was diagnosed with POTS. And both of those really were, I think, the most clear I'd ever been about what I was experiencing and both of those were published. One of them was published in an anthology that came out. It was officially published in february of this year. And the other one was published in art wife magazine And it was just kind of surreal that I was able to take these pieces that I wrote and what I think of as the hardest parts of my life. the darkest parts where I was really mentally really struggling and to then be able to create something and have it come to something, and, just almost felt like very full circle for me.
So I think I've been using writing all this time to find those full circle moments, is how I would describe it, that's how I've been thinking about it, and it just happened naturally almost. I did a free write and then you draft stuff and it just It just comes together, and then I was able to almost move on a little bit with my life.
Yes, I do still write about chronic illness quite a lot. I write about all of that very much because, you know, it affects my life. Obviously, it's a very common theme in a lot of what I do, but I was, in a way, able to then move on and say, I want to tell other stories now. I want to write other things.
I want to... Expand. I want to think bigger. I don't want to be limited to that even though it has been so so so important in healing for me to be able to to create I think is is huge to
[00:21:57] Jill Brook: So when you say that it comes full circle, I was trying to figure out exactly what you mean by that. And it doesn't mean that kind of you experience something really tough, but then maybe you make that mean something by turning it into some of your best work. Is that a little bit of what you think that maybe like the artist's struggle is that we hear about sometimes being helpful?
[00:22:23] Erin: yes exactly no yeah that's exactly right I i think that at least for me I've always had a bit of a hang up with chronic illness because there's a huge sense of inadequacy, I think, that is not talked about a lot, about when you're dealing with a chronic condition that, you know, makes your daily life look very different than from a lot of other people's lives, it's just, this feeling, really annoyingly, of inadequacy about Your life about what you're doing that is quite damaging and it can be really really hard to eventually get to the point where you're like wait, no. Like no, nothing is wrong.
There's nothing wrong with me to you know, to that degree, I think that it all got a little too Mixed up in my like identity. The illness became so so so ingrained and how I was thinking about myself that writing helped me get away from that and be like no that's not the sum total of your existence. You're still able to create you know meaningful things and it helped temper that a bit because I do struggle with that inadequacy.
It's hard to get away from it. It really is. We all struggle with comparing ourselves and our realities to other people's. I think that just gets heightened quite a bit when all of a sudden you're... You know, thrust into a very, very different reality than maybe you were expecting because of things like POTS and other chronic conditions.
[00:23:59] Jill Brook: Yeah, for sure. What is the biggest life change that you've made because of POTS, do you think?
[00:24:05] Erin: I would say it's also what I miss the most, really. It's the biggest life changes, you know, not being able to like walk everywhere and be on your feet all the time and go for walks around town and hikes, being in nature a lot to that degree. So having to accommodate quite a bit, based off of not being able to just on foot, just take on the world, and that's okay.
I'm now realizing it's okay to be able to have to stop and say, like, hey, I still want to experience this. I still want to do things. But I'm gonna accommodate myself here, because that's not where I'm at. And that's fine. And I know that it's an ongoing discussion a lot with the POTS community about eventually kind of making the leap in saying, you know, I am gonna use a mobility aid because I need one, and that's okay.
You know, I might not need it every day. I might not need it all the time, but to start to get to that point, because it is it is hard to to do that especially when you're in your teens or your 20s or people might be like what are you doing you don't need that. But just because you know it's an invisible illness. It doesn't it's not apparent to everybody that you might require this. But whatever is most helpful and helping you get back out there is warranted and totally fine and totally worthy. Yeah. But I do, I would say that's the biggest change is everything revolves around like, oh, how much time can we spend standing up? You know, whether that's cooking, cleaning, walking, hiking anything like that. So, yeah.
[00:25:43] Jill Brook: So I'm going to take advantage of you being a writer again and feel free to pass on this question, but as someone who has done so much writing and tries to convey compelling stories, do you have any thoughts on How the POTS community can help itself the most when telling our stories, or when talking about POTS, or when trying to get other people to sort of understand. Is there any advice about how we communicate about that?
[00:26:19] Erin: For me, I would say that I think the lesson that I got from trying to take, you know, a POTS diagnosis and then write, especially write about it, write about experiencing POTS is You kind of eventually have to, and this is kind of a lesson for all writers in general, you have to eventually get to the point where you have to be really vulnerable. Like writing is quite vulnerable.
It's a very vulnerable , act really. It's very difficult to a point where you have to be like, all right, I'm gonna leave it all out there. I'm gonna say what I have to say on the page and that's what's gonna happen. And you're gonna second guess yourself.
You're gonna think like, oh, but maybe someone's gonna read this or maybe they'll think of it the wrong way or, oh, wait, no. And I think that my writing has always been about, and I've always been trying so hard to make it be as authentic as I could make it. And I think that With POTS, it's difficult because I know that there's a lot of people out there who, you know, really grapple with this in a way where it does feel, in a way, like it is not able to be communicated fully, and I get that.
I get what it's like to feel like what you're experiencing, like you can't fully communicate to someone else, especially someone who's not familiar. But writing has always been my way. I feel like that's the way I've always been able to do it. Yeah. So vulnerability, authenticity.
I think that would be my biggest takeaway of the POTS community. Just lay it all out there. Let's just be honest. Just go for it. Yeah.
[00:28:05] Jill Brook: yeah, that's great, although I do have to laugh because you're reminding me of the first time that I think I tried to be so honest and vulnerable about some of my POTS symptoms, and it was with a POTS doctor, but I was kind of new to this whole thing about being a patient, and so The POTS doctor was a neurologist and I decided to kind of like be super honest and open about all my GI symptoms and the reason this was a big deal for me is because my husband was there and like I had a bunch of really embarrassing GI symptoms that maybe he guessed but we had separate bathrooms so who knows and this I did it.
It was a calculated risk to say this in front of my husband and the neurologist, because I thought maybe this is going to be the set of clues that gets me an answer, that gets me help. And it turned out that at least not with this neurologist. This neurologist just kind of looked at me like,only do neurology.
And so it took me a long time after that to be vulnerable again. But I had to learn to do it smarter. Bring up the right symptoms with the right doctors in the right situations. I'm over it now, but at the time I was like, I can't believe I did that in front of my husband and I got nothing out of it.
[00:29:23] Erin: The little POTS overshare, no big deal, it's no problem, it's all good.
[00:29:29] Jill Brook: Are you up for doing a speed round where you just say the first thing that comes to your poor oxygen starved brain?
[00:29:35] Erin: Why not? Sure, let's give it a go.
[00:29:39] Jill Brook: What's your favorite way to get salt?
[00:29:41] Erin: Just completely raw, just mouthfuls of salt, right from the bag.
[00:29:47] Jill Brook: Oof, hardcore. What is the drink that you find the most hydrating?
[00:29:51] Erin: Right now, drip drop the drip drop zero sugar is my, is my go to.
[00:29:59] Jill Brook: What's your favorite time of the day and why?
[00:30:02] Erin: Oh, I'd say like, like night time, like right before bed. I'm a night owl. So, I feel the best at night. I don't know, I feel very zen. I just feel like I've made peace with the day. I'm ready to go to bed and all is well. And then you wake up in the morning and you're like, oh, not again.
No.
[00:30:21] Jill Brook: Where is your favorite place to spend time and why?
[00:30:26] Erin: I've made quite a haven of my room, so I'm going to say first my room, because I've made it my personal little just safe space, and I love it. If not that, I would say my grandmother's backyard is beautiful.
[00:30:39] Jill Brook: How many other POTS patients have you ever met face to face?
[00:30:43] Erin: None.
[00:30:44] Jill Brook: What is one word that describes what it's like living with chronic illness?
[00:30:49] Erin: In one word? Or can it be a
[00:30:51] Jill Brook: Actually, can we, well, it can be three. Okay, give me your three, and then I have a follow up question.
[00:30:56] Erin: I would say bracing for impact, is how I've always thought of it, like you're always bracing for impact, would be my
[00:31:03] Jill Brook: yeah. And would you answer that question differently if you were given one word what it's like to live with lupus versus one word what it's like to live with POTS?
[00:31:14] Erin: That's tough.
I think they're very, I would say it's the same. I wouldn't differentiate them in
[00:31:22] Jill Brook: Yeah, yeah, interesting. What is some good advice you try to live by?
[00:31:27] Erin: I go back quite a lot to a quote that was in my late grandfather's office. He had it hanging in his office for years, and I think it's from some writer who is Buddhist, maybe, or I can't remember her name, but the quote, I actually have it hanging now above my desk, and it's, every moment is enormous, and it is all we have.
[00:31:47] Jill Brook: Oh, nice.
[00:31:49] Erin: my thing.
[00:31:50] Jill Brook: What is something small that brings you comfort or joy?
[00:31:53] Erin: My first thought was my cat, because he is quite small, he's a tiny little lanky thing, and I love him to death, so, my cat.
[00:32:01] Jill Brook: Awesome. Who is somebody that you admire?
[00:32:04] Erin: My mind went right to James Baldwin, one of my favorite writers, I,wish that he was alive when I was alive, I wish, because I would have done anything to have a moment to talk to him. He's just an amazing, amazing, amazing, amazing writer and person, so, James Baldwin.
[00:32:21] Jill Brook: Ooh, okay, I just found my next book to try. A nice author. What's a food you like to eat a lot of?
[00:32:28] Erin: pie.
[00:32:29] Jill Brook: What's something you're proud of?
[00:32:31] Erin: I'm proud of being published in a book was monumental for me. I'm incredibly proud that I was able to do that, so.
[00:32:40] Jill Brook: Do you have a link you can share with us that we could put in the show notes if people
[00:32:43] Erin: I do actually yeah I do have the link that because it's
[00:32:46] Jill Brook: Okay, we'll put it
[00:32:47] Erin: have the link to the story yeah
[00:32:49] Jill Brook: Awesome. What's an activity you can enjoy even when you are maximally POTSie?
[00:32:55] Erin: writing. It's easy. You can write in bed. You can write on the floor. You can write anywhere so still writing yeah
[00:33:03] Jill Brook: What helps you fall asleep?
[00:33:05] Erin: I meditate every night .I'd say meditation guided meditations I think insight timer is the best app I use it every night so that puts me right to bed.
[00:33:13] Jill Brook: What's a gift you'd send to every POTS patient in the world if you had infinite funds?
[00:33:20] Erin: oh there's so much I'd want to just send A huge care package, I guess I'll say just really, really, really nice like compression socks and compression stockings, especially ones that you can like wear out, you know, it's very hard to dress up compression socks, I've learned, but I'm still trying to figure out the fashion of that, but yeah,
[00:33:44] Jill Brook: What are you grateful for?
[00:33:46] Erin: My mom, my mom.
[00:33:48] Jill Brook: Okay, please finish these sentences. I love it when...
[00:33:52] Erin: I, oh my gosh, my first thought was I love it when I wake up without like crippling existential dread. Happens every once in a while, doesn't happen all the time, but every once in a while you wake up and you're slightly refreshed for the day. Doesn't happen often, I know, and as POTS people, mornings are tough for us, but yeah.
[00:34:14] Jill Brook: yeah, I think there's lots of people right now nodding their heads like existential dread. That's what that feeling is. Thank you for putting a word to it. Okay, another sentence. People might suspect I'm a POTSie when...
[00:34:26] Erin: I slowly just like collapse to the floor, or you find me sitting on the floor at all times in weird spaces. I call it floor time, it happens every day, you'll just find me sitting on the floor.
[00:34:39] Jill Brook: that's the next question, where's the weirdest place you've ever had to sit down because of POTS?
[00:34:43] Erin: I think it was like one of either like a Walgreens or a CVS or, you know, like some kind of drugstore, they have like those carpeted floors, yeah, fun time, loves it, yep, yep, good times,
[00:34:54] Jill Brook: Nobody appreciates floor cleaners like a
POTSie.
[00:34:57] Erin: yeah, I know,
[00:34:59] Jill Brook: Okay, so I just have a couple more questions. What do you wish more people knew about POTS?
[00:35:04] Erin: I would say that it quite literally changes from day to day, I think there's like an expectation. Like, you don't look sick, and then the next day it's like, oh, I'm so sick, and also the unpredictability of it. It's hard to make plans when you have POTS. It's really, really hard, especially in advance.
If you tell me like, hey, I want to make plans six weeks from now, I'm like, I don't know about that, because who knows what I will be like on the day. I have no clue. It seems risky. So yeah, I wish people knew how hard it is. It's really hard to make plans. You just never know what you're going to get on any given day,
[00:35:39] Jill Brook: That's a good point. I actually had thought the other day that people have no idea how risky we are sometimes like, like sometimes my actions, for example, probably make me look like I'm not a very big risk taker, but they don't understand that, you know, sometimes on a hot day just going for a long walk to the farmer's market, that's a big risk.
[00:36:02] Erin: That's, yeah, that's like the Olympics. That's serious. That's intense.
[00:36:07] Jill Brook: I'm a wild and crazy person if you
[00:36:08] Erin: Yes.
[00:36:09] Jill Brook: my perspective. Yes. Okay, last question. Is there anything you'd like to say to your fellow POTS patients out there who are listening?
[00:36:18] Erin: What came right to me immediately and what I've been using almost as kind of like a mantra, almost, I think that POTS can be really disorienting in life. I think it can kind of shake your foundation and it can make things tough.
I would say that my like little mantra to share would be to just focus on what's in front of you. That's how I've been, you know, getting by this year in particular. I think that's just been my, just on repeat in my head is just focus on what's in front of you and nothing else. That's also helpful when you're like having a very symptomatic day and you're quite dizzy and you're quite just off. Just focus on what's in front of you. Nothing else is going to matter, you know, and just move forward from there. That's what I've been doing. And I'm getting by. So it's happening. I'm alive. Working out every day, I guess. So, yeah.
[00:37:16] Jill Brook: Fantastic. Well, Erin, thank you so much for sharing your story and your insights with us. We will get your links and put them in the show notes in case anybody wants to read your writing. We're excited for your future and to see what else you write. And we thank you for being here.
[00:37:35] Erin: You so much for having me. It was awesome.
[00:37:37] Jill Brook: Okay listeners, that's all for today, but we'll be back again next week. Until then, thank you for listening, remember you're not alone, and please join us again soon.
