E141: POTS Diary with POTSpouse Stephen

POTS Diary with POTSpouse Stephen [00:00:00] 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. Today we have Stephen, who is a POTS spouse. Thank you so much for joining us today, Stephen. [00:00:16] Stephen: Thank you. I'm glad to be on. [00:00:17] Jill Brook: So for starters, a little bit of background basics. Where are you? What's your age? Who do you live with? [00:00:24] Stephen: My name is Steven. I'm 26. We're living in Utah in a rural city called Payson, and I live with Becca, my spouse who has POTS. [00:00:36] Jill Brook: We asked you to be on here because Becca spoke so lovingly, and we know that a lot of people can get kind of overwhelmed by POTS, and it sounded like you guys were making nice lemonade out of some lemons, and so we were excited to talk to you. But for starters, we wanna know a little bit more about you personally. So tell us what makes Stephen tick. What are the basic things we should know about you? [00:01:02] Stephen: I will say life has changed a lot since Becca and I have gone through this journey together. So there's kind of an interesting world of like being somebody and then kind of being somebody a little bit different, since her symptoms have gone worse, we're trying to figure things out. But in general, Love to play tennis. Becca and I met playing tennis, love to run and do triathlons, and we've done a lot of that. I honestly work a lot. I know that's weird for some people. I work in marketing and we have a little girl named Faith who's how old is she now? 19 months. And another kid on the way. Being a parent now has been awesome and obviously takes up a lot of time. I love reading and doing stuff like this, just having good conversations with people. I think that's a good summary. [00:01:44] Jill Brook: Can you tell us any more about how you met Becca? [00:01:47] Stephen: We met in was 2014. We both had just graduated from high school and were apparently in a rush to get out of our parents' houses cuz we both went to the summer terms, like our first summer term of college together and met at freshman orientation. Crazy like beginning to it all. We didn't really like start dating until three or four years later. But always kept in touch and yeah we met I think it was like a carnival activity or something. [00:02:16] Jill Brook: Oh, very cool. Okay, so tell us, what would Becca say is your personality? [00:02:21] Stephen: my personality, I wonder if you asked her this question already. she'd probably say kind of a go-getter, always wanting to be involved and really active in a lot of different activities. and, I try to have a fun time and kind of laugh and not take things too seriously . [00:02:37] Jill Brook: So you had mentioned kind of a life that you had before Becca's POTS symptoms got bad. Can you give us a snapshot of what kinds of stuff you did together and what that was like? [00:02:47] Stephen: Yeah, absolutely. I said we met playing tennis and we'd play tennis a lot. we actually got engaged at the end of a half marathon, so we'd go running together. She was way more active than me. she was the one like, Hey, let's go to the gym every day. So that was a big part of our lives together was being out, being active. And just having fun . She was like really into pranks and like messing with people and we'd go to Walmarts or whatever and kind of do funny stuff or she really liked video editing and making videos and dancing and kind of all of that. yeah, We did all those things together. [00:03:23] Jill Brook: Did you say pranks? [00:03:25] Stephen: Yeah, just kind of silly things. I think we both kind of grew up in that YouTube era where pranks really big. You'd watch a video and someone would, we'd be doing something dominant, get it on video, right? They'd like set up a camera, and that's still big now, but I think there's something special about early YouTube days, let's say. she was a lot more this way than me, but she'd love to just go and either do silly things in public and try to record them or just do them for fun. [00:03:50] Jill Brook: Very nice. I love couples that can do dumb stuff together. Then from your perspective, how did POTS enter your life? [00:04:00] Stephen: Yeah, it was kind of an interesting progression. I sort of have, I feel like memory loss a little bit about how everything has happened. But pretty soon after we got married there were just kind of Progression of symptoms, one after another. We've been married four years now. Wasn't obvious probably until a year and a half ago, two years ago, that there was some form of dysautonomia going on and doctors started talk about it. But she's always had a lot of funny things with her body that were really hard to explain with her. So it kind of, it kind of just slowly progressed and it's probably about the worst it's ever been right now. we're still trying to figure stuff out, but, it's been an interesting journey. [00:04:43] Jill Brook: So a lot of POTS patients report that they go through a phase where people just think they're crazy or they're lazy, or making it up. Did you ever suspect that was going on with your wife? [00:04:58] Stephen: I think we h ad to have those discussions on and off together, because doctors would bring it up too. They'd be, oh, like you're in the hospital. Well, it's probably just anxiety. It'll calm down. And I've always trusted doctors a lot. My dad is a doctor he's a surgeon. It's a little bit different. Yeah we'd have those conversations from time to time and we're like, okay, well maybe we need some anxiety medication or something. And we think about that for a while and we're like, no, this doesn't seem like anxiety. I think we kept talking ourselves into it and then talking ourselves out of it. but it's tough. I mean, we're still trying to figure out. We have a diagnosis of POTS and EDS, but there's something else underlying too that we just don't know about. So I think we're trying to search for whatever diagnosis we can hold onto for a little bit. [00:05:42] Jill Brook: Has this changed your view of the healthcare system and how much doctors are able to do and how many answers you're able to get? [00:05:53] Stephen: Yeah, absolutely. At the end of the day, just an interesting moment when you realize you've been into so many appointments before that No one is going to care about your health more than you. I don't know how to say that, but like, you know, at the end of the day you're a 30 to 40 minute appointment on the calendar and they have lives too. And like, I get it. Like it's crazy. At some point really realized, man, we just gotta take this in our own hands and try to figure things out. They're just not good at diagnosing really complex cases. Like break a leg, have a heart attack, maybe go into the doctor by all means. But it's been tough, with what Becca has going on. [00:06:34] Jill Brook: I had kind of a funny situation happen the other day with my husband because I have asked him in the past to come to doctor's appointments with me because I think that sometimes I get taken more seriously if there's a second person, especially a man. And we had this funny moment where I wanted him to get his prostate checked just cuz he has prostate cancer in his family. And he was like worried that it was a thing that I expected to come with him to his doctor's appointment. And I was like, no, no, no, no, no. I just want you to come with me. I don't have to always go with you. You And so I was just wondering, what is it like to attend the doctor's appointment of your wife? Is that awkward? Is it weird? Have you ever been gaslighted? Do you get it? [00:07:24] Stephen: It's been really, it's been interesting. I think it's especially interesting because, right now like Becca's symptoms have flared pretty bad. And so she gets breathlessness just from talking or from trying to eat food. So she actually, whether a doctor's calling or we're going into appointment, she actually can't do basically any of the talking. And so they very rightfully turn to her first and ask a question. And I think they're actually surprised. And I'm the one who answers, and then I have to explain like, actually she can't really talk right now, so she's typing stuff out. So that aspect has been pretty interesting and I've had to learn and I still need to be better at this, how to be a better advocate for her and say exactly her thought. What she's experiencing and try to communicate the best that I can, especially when it's hard for her to communicate. I love being at the appointments, but the overwhelming feeling that I've had is just frustration that like, you know, we go in and this doctor, their only recommendation is hydration, right? Or something. And then we can reschedule for three months later, and things aren't gonna change between then and now. so anyways, I think it's been good. I think some of like our sweetest moments of a couple has been either going to an appointment or coming back for an appointment and just trying to think about it and face, face things head on during those moments? [00:08:44] Jill Brook: Wow, that's such a nice orientation to have. Have you had experience in your past helping anybody with their health, or is this new to you or how do you feel like you arrived at this? [00:08:59] Stephen: Well, It's definitely all new to me. And like I do want to say up front, if I had to like grade myself, I'd probably be like a C or a C minus, especially when it gets really hard. I'm generally like a very optimistic just kind of good natured, I don't know if that's the right word, but like easy to be around maybe. But it's been really interesting to see how, although I've tried to continue to be that person, There are moments when it's really tough, like you start to feel these classic symptoms of depression or something else where it's just like you can feel more irritated or more like disconnected. So I wouldn't say like I'm doing amazing, but, yeah, it's been pretty interesting so far to try to do my best, I guess. [00:09:46] Jill Brook: How much support do you have from people outside, like family or friends? [00:09:52] Stephen: Yeah. So we've been really lucky. We have Becca's parents living within half an hour and her mom is here two days a week helping with our girl just because Becca can't take care of her right now and, we have been in a good position to hire a nanny, so we do have a nanny helping three days a week in addition to that. So that's all been really helpful just from like a childcare and day-to-day cleaning and stuff. and we have like plenty of other family members who are always texting or calling, Hey, what do you need? What do you need? How can we help? So I think we've been really, really lucky. . and even as lucky as we've been, it's still really hard and that's crazy to think about. Like I'm sure there's people listening who like, yeah, it's just uh, hard to imagine doing it without a lot of help. You know? [00:10:40] Jill Brook: Yeah. So does your daughter know that her mom is sick? [00:10:47] Stephen: I don't know if she's old enough quite to understand it completely, but she's really special. Oh, sorry. I don't want to get So emotion. [00:10:54] Jill Brook: No, I really appreciate that you're talking about this and I think, you know, probably what makes it so hard is that you care so much. And I also think it's funny when you grade yourself as a, you know, a C, I think of the Dunning Kruger Effect. You know what the Dunning Kruger effect? [00:11:15] Stephen: No, it sounds familiar [00:11:17] Jill Brook: that's the famous curve where people who are new to a situation are so confident that they know everything, but as they get more experience, their confidence goes down, down, down, and then maybe when they're like a super old pro at it, their confidence comes up a little bit. But I imagine kind of a similar thing that I think the sign of somebody who is really in this for real is that they don't give themselves an A, because I don't think anybody's getting an A, I don't think there is a way. this is just too hard of a situation to feel like you're acing it. [00:11:56] Stephen: Right, right. Y eah. I mean, especially when no matter how well I do, right? Like, Becca will always be, or for now if she had to greater her health, would probably be an F. Right? And how could I be doing good when she's not, kind of a thing? but to your question on Faith Faith's awesome. I don't think she quite understands it yet, but she sees mom on the bed, right? Or a recliner. Becca spends most of her time in a recliner right now and stops by and gives her hugs and, you know. We'll do like little like things. If Becca asks her to like, Hey, go get this for me or this she's really sweet. I think there are times when you know, Faith wants her to read a book or wants to climb up all over her, and those can be really draining for her. And so Faith is still kind of learning that, but it's been interesting to try to figure out how to help her realize. But she'll say sometimes she's like, oh, mama's sick. I think that's, She gets that on some level. [00:12:53] Jill Brook: So, what can you guys do for a nice family time these days? That's within Becca's abilities. [00:13:00] Stephen: for better or for worse, it's TV . So we have a tv, as many people do, it's all binge, binge binge these days and there's like a few shows that we watch that are like, One comes out a week, right? And it feels like an event and something you can look forward to that day. right now it's like the bachelor's series. That seems to be our reoccurring whatever version of that's on at the moment. especially because there's like, like a lot of action in dramatic movie. Really affect her, like heart rate and like some things. So I was never a romantic comedy guy, but now that's kind of the things we watch. [00:13:38] Jill Brook: I get that I've had to go that direction too, because otherwise the adrenaline just gets too high. [00:13:43] Stephen: Yep. So we've seen most of 'em. Let's say that. [00:13:48] Jill Brook: Do you feel like this has taught you any lessons, this whole experience? [00:13:54] Stephen: Oh definitely. It's so interesting cuz it's like sometimes we get stuck in thinking about like, the way things could have been and the way seriously, like life would be perfect with Becca and I without POTS, let's say, but if we were living that version of life, I wouldn't know that people are home bound. There's so many people who have so many different conditions. Yeah, just I feel like opens up a lot of perspective on kind of the way that life really is for a lot of people and definitely is like a huge pressure test for myself. it's really interesting too, like I actually think I've gotten a lot worse over time as a person. Like I think I'm less optimistic and less like that way. But Becca has gone way more empathetic and understanding. I think there are certain things I'm learning about myself about handling pressure and stress and just trying to care about people. I think you kind of have to tell yourself those things when you're going through really hard things, right? Like you have to find some sort of meaning, if you want to get through them. [00:14:57] Jill Brook: Can I ask what you do, if anything, to keep yourself going while you're dealing with all of this extra challenge? I know my husband always says that ever since my POTS came along. It's really important for him to keep his blood sugar steady. He says he can no longer afford to have unsteady blood sugar. Is there, I don't know, anything like that or I don't know anything like you've kind of said, okay, life demands more of me now, so I have to do these things to keep myself going? [00:15:30] Stephen: So you mean he has to have a constantly high level blood sugar, is that what you mean? [00:15:34] Jill Brook: Well, I think he doesn't eat anything that would give him a blood sugar rollercoaster because I think he thinks that he cannot be in a bad mood. He cannot have low energy. He kind of has to almost treat himself like a bit of an athlete to kind of keep up with it. [00:15:52] Stephen: Yep. I think he's in a way healthier place than me right now. Then, I agree. That seems like the ideal is like, I love the way you just said that, like, treat yourself like an athlete. I'm still trying to figure out the right balance between sort of I'm gonna use these terms like wrong, but sort of like fight and flight, right? I think like I've balanced a little bit too much towards the, okay, well things are hard right now, so I'm going to eat these sweets, or I'm going to play this game, or I'm gonna watch this movie or something. Right? It's more of like a distraction or escape. So I think I've balanced a little bit too far that way. The times when I'm doing the best, I'm working out every day. I'm going running especially At nights when Faith is down right and Becca's comfortable. I know if I can exercise every day and I have time. To myself a little bit. it doesn't have to be anything crazy, but when I'm not working, just a little bit time to myself and at least like maybe once a week, some interaction with a friend or something, especially face-to-face if I can get outta the house. I think those are a few things that really keep me centered. the hard thing is like when things are the toughest that they get. None of those things feel like they're really possible anymore. Like it's hard to eat healthy and cook healthy meals. It's hard to spend the extra time working out or meeting with friends. but the more I've like been through the cycles of like being in a good spot and being in a bad spot, I've realized like those are kind of non-negotiables and that gotta figure out a better way to, to fit those in. Those might be different for other people, but that's kind of what's worked for me. [00:17:28] Jill Brook: I'm reminded that my husband's been living with this now for like 20 years. What do you wish more people knew about being a caregiver. Do you use that term to define yourself? [00:17:42] Stephen: I'm doing a Google search about anything, I have to use the word caregiver. I don't know it still sounds weird to call myself that. but yeah, I mean, that's a good way to put it. This is something that I heard early on. I don't even remember where I heard it from, but that it's not about time management, it's about emotion management, something like that. so like Figuring out a way for me to save some hours here, there, or a way to really perfect my schedule so that like we can figure stuff out, like really doesn't do that much. If I can just stay in a good place doing those things I talked about earlier that makes a way bigger difference. so anyway, emotions rather than like the time management of it. I think more people probably just need to realize that POTS exist, that there's lots of conditions that can, people homebound that require full-time care. It's interesting cause it's not so much that people don't care, it's that they don't know. [00:18:39] Jill Brook: what is the best support that people can give you these days? What helps you the most? [00:18:44] Stephen: I think just people reaching out... either in stopping by or just messaging me. I think that's some of the best support that I've gotten is just checking in. I know that could probably come off as kind of insincere sometimes if someone's just like, Hey, how are you doing? Is there any way I can help? Like, I usually don't need actual physical help, as much as I just need to know that there's somebody who's thinking about us. Those have been good moments. [00:19:13] Jill Brook: Do you know anybody else who's in a similar role as you? Like, do you have anybody that you connect to because you're living a similar situation? [00:19:24] Stephen: I don't, I don't know any other caregivers besides, I guess moms maybe like stay-at-home moms or stay-home dads. [00:19:30] Jill Brook: my husband and I were toying around with an episode of the POTS cast where he leads the discussion with three or four other POTS spouse husbands and calling it something like POTS Bros. And, because I think that he too has never talked to anybody else who is in a similar situation. And I know that everybody's needs and challenges are so different, but I imagine that the thing that you have in common is sort of... this weird position of trying to be husband, but also helper and just so many roles at once. [00:20:13] Stephen: yeah. First of all, I love the name. It's a great podcast. So we'll hop onto that one after this. [00:20:21] Jill Brook: Okay. [00:20:22] Stephen: Yeah. And, and on the support side, it's like Becca has probably in like 20 different Facebook groups at this point, has probably read posts from a million different people with POTS in every other condition possible. I don't know if she's met, really like deep connections with anyone on the support level. But yeah, I think it's a little bit easier for her to, to kinda have those connections. But yeah, for whatever reason, I just haven't Met or know anybody on the caregiver side. [00:20:50] Jill Brook: If a POTS Bros episode would be interesting, would there be things to discuss? [00:20:55] Stephen: yeah. I think so. I think so. [00:20:59] Jill Brook: you know, it's funny that you had mentioned that you are watching TV shows that do not raise the heart rate because that's even one of those things that I never thought of and I never talked about with anyone before, but it's just kinda nice to know there's other people watching. [00:21:13] Stephen: I know it. It is. And there's so many funny moments like that where Becca will finally read a post by somebody or listen to a POTScast episode and be like, oh, there is somebody who has the same symptom as me. And yeah, it's funny, there's a lot of little quirks that people wouldn't understand. [00:21:33] Jill Brook: As we start to wrap up here, can I ask. What is the hardest thing about having POTS in the family? [00:21:41] Stephen: There's some quote that's like, you can do anything really, really hard for 10 seconds or something. and I think the hardest thing for me personally, like again, the hardest thing for Becca is being in pain and like having a bunch of terrible stuff going on with her body. So like that's... that's the most terrible thing. But like in addition, I think it's the question of will it ever end? Will it ever get a little bit better? is there a possibility that could be completely better? And kind of the sinking suspicion over the past four years as things have gotten worse, that things won't get better right away. Or this might be the new normal for us. and I think that's a little bit difficult to think about, especially her and I definitely thought of a very different life together. And so, yeah, just kind of the, the endless nature of the chronic, endless nature of it. if you think about it too hard, I think can drag you down. [00:22:42] Jill Brook: Yeah, that's a good point that I think when most people think of chronic illness, they think the illness is the nasty word, but chronic is maybe a nastier one. [00:22:53] Stephen: right? Yeah, that's a great point. It's a great way to put it. [00:22:56] Jill Brook: Can I ask why did you agree to let us share your story today? [00:23:00] Stephen: I didn't think about it too hard, honestly. [00:23:03] Jill Brook: you're just a nice guy and we asked. [00:23:05] Stephen: Becca just sent it over and I was like, yeah, you just did this and I'd love to be a part of it too. And yeah, I don't know if other Caregivers are listening or, I mean, I'm sure they are, but yeah, I obviously hope in some small way, maybe there's something that could, could help them too. When you're, when you're at home most of the days there's not a lot of better things to do than hop on a podcast with Jill and talk about POTS. [00:23:32] Jill Brook: Well, thank you so much. We so appreciate all of your words of wisdom and your sharing your experiences, and I know that all of us and all of our listeners just wish you guys the best going forward. [00:23:47] Stephen: Yeah. Thank you so much. It's been good. [00:23:49] Jill Brook: Hey listeners, I hope you enjoyed today's conversation. 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.