Belle from Canada, saline and physiotherapy helped her walk across her graduation stage

Belle Dodds / POTS Diaries Jill Brook: [00:00:00] Hello, fellow POTS patients, and magnificent 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 are speaking with Belle. Thank you so much for being here today, Belle. Belle: Hello. Thank you for having me. I'm very excited. Jill Brook: We're excited to have you. Okay, so tell us some basics. For starters, where are you? Belle: Well, right now I'm in a little city called Camrose in Alberta. It's a farming town. Jill Brook: Canada, right? Belle: Yes, Canada. Jill Brook: Okay, excellent. And how old are you? Belle: I'm 20 years old. Jill Brook: And you have neat things behind you like art and Christmas lights. Is there any story there? Belle: I'm an environmental science student, so I have a lot of nature posters and scientific posters on my wall, and I really love cute and cozy things, so you can see that I'm a little bit of a nerd. Jill Brook: Okay. What else should [00:01:00] we know about you? What else do you enjoy? Belle: Well, besides being a nerd, I love nature, love animals. I absolutely love to read, and one thing I've been getting into lately is advocacy. That's exciting. That's what kind of brought me here. Jill Brook: Yeah. Okay. And if we were to force you to brag about yourself, what are some things that you're good at? They can be big things or little things, doesn't matter. Belle: Well, I do think that I'm pretty decent at art. I make jewelry and I sell that as kind of a side hustle. If I had to brag about myself, I'd say that I am pretty compassionate. I like to try my best and I volunteer in an animal shelter sometimes, and I like making things. Jill Brook: Very cool. Okay. And if we asked your friends what other personality traits you have, what would they say? Belle: I think every single one of them would probably say that I'm goofy. I like to make jokes and I think I [00:02:00] try my best to be a kind person. Try to be a kind human in this troubling world sometimes. Jill Brook: Yeah. Oh, that's so wonderful. Okay, so have you had POTS your whole life or did you have a life before POTS? Belle: I did have a life before POTS. Now that I think about it, I definitely had some signs and symptoms that there was something going on that I wasn't too sure of. But when I was 16 is when my life with POTS started. Jill Brook: Okay. Can you give us a snapshot of what you were up to in that year, leading up to that time? Belle: Yes, so I was in grade 10. I just started high school and I was so excited to go on my very first international trip to Greece. It was for school and we were gonna go for 11 days. And it was my first time ever leaving North America. And while I was in Greece, that's when my symptoms [00:03:00] started severely. And that's kind of when I figured out that something was not normal. Jill Brook: Ah, okay. So that sounds very far from home. It sounds exotic. I am just having these visions of like you face down in a bowl of hummus. But what did it look like? What was your first sign that something was off? Belle: Not far off of that actually. The first time was after I was on a ferry boat. And this was an eight hour ferry boat to get to Santorini the island. And I was on it and I had hit my head from an incident on the boat and things just started to spiral. The first time I like fainted, fainted was I was in a little coffee shop and everyone's getting hot chocolate and like frozen drinks and I'm just on the floor, in a foreign country. So you were close with the food thing. There was a frozen hot chocolate all [00:04:00] over the floor. My teacher was super confused, not sure what was happening. Jill Brook: So how long did it take you to figure out that you had POTS? Belle: It took me about a year and a half to two years. Jill Brook: What was that like? Belle: Difficult. I was in Greece and we knew something was wrong, and of course I had never had anything that severe before. I was fainting all throughout the trip and stuff was going wrong. I get to Canada, my parents shipped me off to the hospital. We're trying to figure it out. And then it just gets delayed and delayed and they're not sure what's happening. And then two years later, I finally get the little result test that I have POTS and that I have something. Jill Brook: Wow. Belle: So it took a long time and it was a lot of my parents advocating for me and a lot of me doing my own research. Jill Brook: So can I back up and ask how much time you spent in Greece with POTS, but not knowing what it was and what was that like? Belle: Yeah. So the trip was 11 days and the kind of the [00:05:00] first part of it went well. I wasn't feeling too great cuz you know, traveling on a plane isn't everyone's cup of tea and foreign country, foreign food, foreign experience. And so I thought it was just that. I've always been a little bit susceptible to not feeling good when there's changes. I figured out why that is now. But then the latter half of the trip was a lot of it unconscious. A lot of it was me loving Greece, but also me not remembering a lot of it. I had to teacher glued to my side and we were finishing the trip and I made it through it and had wonderful experiences. It was a lovely time, but I definitely gave my teachers a run for their money. Jill Brook: Oh, okay. So you got back to Canada. It still took a year and a half, did you say, to get a diagnosis? Belle: Yes. Jill Brook: And how much did it help to get a diagnosis? Were you able to improve a lot [00:06:00] thanks to that? Belle: The like sigh relief, I just took, thinking about the diagnosis says a lot. I remember not knowing what was going on. I was really fearful. Wasn't sure what was happening. Had like a lot of loops through the doctors and then I got my little paper, we got the call, we had the little diagnosis sheet, and I, it was scary to know that I had a chronic illness, but I felt so much relief knowing that I had something that I could have something tangible that I could finally tell doctors and we could finally get back to at least trying to have some sort of normalcy, even though I know that that normalcy was never gonna be the same that I used to have. But yeah, it was. The relief in my system, in my mom's system, in my dad's system was huge. Jill Brook: Was part of that relief because during that whole year and a half, you had worried, you were just imagining it or you were worried you had something [00:07:00] worse or what, what was that relief specifically? Belle: I was worried that I was imagining it. I saw quite a few professionals who didn't quite believe a teen girl had a major health issue who looked healthy from the outside. There was a lot of the big words of anxiety, even hypochondria were thrown about. Lots of those kind of big scary words, which is scary for a teen girl to go through when you're going through something and you're not sure what's happening and then in your brain, you think you're not being believed and you're feeling a lot of turmoil and hormones. I mean, I was a teenager, so that's an extra layer. But when you finally get one professional listening to you and telling you, Hey, we believe you, and we finally found out what was happening, just that's what all that relief was from. Fear that I had a chronic illness, but thankful that there was a name to it and it wasn't this big, scary unknown thing. Jill Brook: Yeah, it's funny. Have you ever either read the [00:08:00] book or seen the movie of Lemony Snicket's, A Series of Unfortunate Events? Belle: I have, yes. Jill Brook: So I know that everybody loves that story, but I have to say that I watched that movie with my husband a couple years ago and I could not stand it because the kids kept not being believed by the adults. And it was at that moment that I realized that I had such pain around that concept that I couldn't bear to watch it, and I had to turn it off. And anyway, I thought about that as you were talking that, that you kind of had relief like that was over and finally you had something that you could name so people would have to believe you. Belle: Yeah, that, that's like an amazing point. That's exactly how it feels of, you're like told when you're younger, if there's something wrong, you go to the hospital. If you're ever in danger, you go to a medical professional and they'll help you. And then you do that and they don't and they don't believe you. That that's exactly like the movie. Like [00:09:00] you just said it perfectly. Jill Brook: I'm like, How can anybody enjoy this movie? Aren't they just so bothered by that? Belle: Yeah. Jill Brook: Aw. Okay. So did you find treatments that made a big difference? Like what helps you now? Belle: I did. I found treatments. It took a long time. I was wheelchair bound for a good part of it, trying to figure out what was happening. Unfortunately, when I got my diagnosis, I thought, Wow, it's gonna flip around. Everything's gonna be great. Life's gonna go back to normal. Obviously that didn't happen. I mean, a lot of people probably with POTS can relate to that. It's a lot of trial and error. I mean, POTS is so complicated and causes so much grief. It takes a lot to get back to anything that was kind of normal and I still haven't gotten back to normal before my diagnosis. Now it's just me and I'm good with that. We did medications and physio and things weren't really sticking until, for me personally, we started [00:10:00] doing saline infusion. And then we coupled that with therapies like physiotherapies and then fludrocortisone medication. That was really helpful for me, mixed in with some other medications, and that's when I finally got to see some progress. Jill Brook: Ah, okay. And you had mentioned that you're not all the way back to normal, but you're fine with that. Can you talk about that process? So how did you get fine with that? Were you always, did you have to work at it? Belle: I had to work on it. I was in high school when I first had my health issues and I was so focused on getting back to what I used to have. I was so sporty. I was so involved in hiking and doing a million things, clubs, all that. And when I was sick and in my wheelchair and going from appointment to appointment. All I could think about was I need to get back to that. And then when I got my diagnosis and we started to put the pieces together and I started [00:11:00] feeling a little better, me and my mom actually had a talk and she was like, Pick a goal. My goal was I wanted to walk across the stage for graduation. That was my goal. And so me and my physiotherapist worked really hard. We did step by step. It started with five steps, six steps, 12 steps of trying to get across a stage of trying not to faint, not to feel bad, and I focused on that goal so hard that I realized that I'm okay with this. I'm okay with not having what I used to have because if I keep chasing that, if I keep chasing when I used to have, I'll never be happy. Like I just don't think it would work out. So I started picking little goals in my life, like walking across the stage doing more crafting, going for small walks outside, going for walks with my mom, and slowly that started to build kind of like into my life, if that makes sense. And that's when I started to appreciate that this is my life now and I can either be really [00:12:00] upset and sad about it, or I can take it slow and figure out how things will go in the future day by day, if that makes sense. Jill Brook: Yeah, and it sounds like that's worked that well for. Belle: Pretty much. I mean, of course there's bad days. Of course there's problems. I mean, I am going to university with some chronic illnesses, so that's gonna be tricky. But I'm going to university, so that's what I focus on. I mean, I couldn't even imagine that like three or four years ago. Jill Brook: Excellent. So I just have to ask, were you able to walk across the stage for your high school graduation? Belle: Sadly, COVID happened and we didn't get a graduation, but my school did do a like a photo shoot outside and I got to walk up and grab my diploma. So I got some of that and I still got to wear my pretty dress and my pretty hair. And my parents took tons of pictures and it was, it wasn't as, it wasn't what I expected, but I think that kind of sums up my entire life right now.[00:13:00] So I think it was pretty perfect for me. Jill Brook: That is a great point. Nothing bad about learning to be adaptable, I suppose, cuz life will just keep on throwing you surprises. Belle: Mm-hmm. Jill Brook: Okay, so what's university like? Belle: It's scary, and really exciting. I'm so fortunate for my university, I have accommodations that allow me to do school. So, It's just such a great experience where I get to do something that I've dreamed of since I was a little kid, and it's hard, I'm not gonna lie. It's really challenging. There's been a few days where I've been a little down in the dumps thinking about, is this really what is good for me? But I'm still here and I'm still doing it, and I enjoy it pretty much. Jill Brook: What kinds of accommodations help you? Belle: My big one is I get to be a full-time student even if I don't have full [00:14:00] classes. So that just means that to be a full student, usually you need to have like four to five classes. And because of my illness, sometimes that's really hard to balance so many classes. So if I take less classes, I still count as a full-time student. So I can still get grants, I can still go through school. So that's the big one for me. I also get time and a half for my exams cause I'm sure a lot of POTS patients know that brain fog is not fun. And when you're trying to do university, like even harder. So I get time and a half, so I get to take my time. I get to do it in a separate area. So if I don't feel good, I need to get on the floor quickly, I need to do anything like that. I have my private area where I don't feel judged. I don't feel like scared or worried. It feels like a safe place. And that's, I think a big part of it too, cuz I mean, to succeed in school, you gotta feel safe so. Jill Brook: For sure. Yeah. Oh, that's great that you're making it work. Belle: [00:15:00] Mm. Jill Brook: Is there anything that you know now about living with POTS that you wish you had known sooner? Belle: That's a good one. I think if I could go back to Little Belle who's in high school not knowing what to do, I think I would really wish that, like I knew that yes, it's not like... you're not gonna get cured. It's not gonna be a magic cure. But you can, You're gonna have tools and you're gonna have help, and you're gonna get these like tools and you need to use them. Because there was a time in my life where I was kind of almost embarrassed that I needed all this extra help. And I think if I just would've taken a deep breath and used the tools that I was given and really like focus on all the help that I needed, I think that would've given a big relief. So I think that if that makes sense. Jill Brook: Yeah, just kind of get over yourself and do what you need to do. Belle: Yeah. You know, it's okay if you have to lay on the floor in a public area. You gotta do what you [00:16:00] gotta do. Feet up, back down, you know? Jill Brook: Yeah. Have there been any silver linings to having POTS at all? Belle: I've met an amazing community. I mean, I found this podcast, I follow all these amazing accounts on Instagram. I even made some really good pen pals and close friends. I have some internet friends that I met through chronic illness who have chronic illnesses, have POTS, have different illnesses that know what it's like, which is probably a big thing for me. I have a lovely family and I have like an amazing roommate who really like helps me and all, and I have amazing friends. But to have someone who's been through it, who's been through the medical system is just such a relief and it just made a stronger community and it's, it's made me really realize that to get through some of this, you kind of need people and you need a community. Jill Brook: Yeah. Yeah. Are you up for doing a [00:17:00] speed round? Belle: Sure. Jill Brook: Okay. First thing that comes to your mind, and no judgment, what is your favorite way to get salt? Belle: Pretzels. Jill Brook: What is the drink you find the most hydrating? Belle: Nuun electrolyte tablets. Jill Brook: What's your favorite time of day and why? Belle: Oh ah, that's a hard one. Nighttime, cuz I can get cozy and I can lay down. Jill Brook: Where is your favorite place to spend time and why? Belle: Probably at the library because so many books. Jill Brook: Excellent. How many doctors have you seen for POTS? Belle: Ooh I don't think I have enough fingers on either of my hands or enough toes to tell you that. Jill Brook: How many other POTS patients have you ever met face to face in person? Belle: Oh, not a lot. I think a couple, and I didn't even know them personally, they just [00:18:00] asked me what was going on and I found out they also had POTS. Jill Brook: Ah. What is one word that describes what it's like living with POTS? Belle: Tough. Jill Brook: What is some good advice that you've ever heard that you like? Belle: Lean on others. Jill Brook: Hmm. What is something small or inexpensive that brings you comfort or joy? Belle: Pillows, so many fluffy pillows. Jill Brook: Any particular favorite kind? Belle: Uh, well I have one. You guys can't see it, but it's this fluffy round pillow that's just big and fluffy, and anytime you're sad or you don't feel good, you can just put it right on your face and pretend that you are out of this world a little bit or, and you can just squeeze it and it's just fantastic. Jill Brook: Very nice. Who is somebody that you admire? Belle: My mom. Jill Brook: Why? Belle: Because she had to advocate for me to some [00:19:00] really like impressive doctors that have scary amounts of paychecks and like schooling, and she had to walk right up to them and tell them that something was wrong with me and that they needed to figure their stuff out. And I, I couldn't imagine doing it. She's one tough lady. Jill Brook: Aww, yay mom. What is something that you're proud of? Belle: Me. I'm just, I'm so proud that I'm here today that I get an opportunity to be on a podcast that I get to go to school that I even got up in the morning. I mean, not to like stroke my own ego, but go me. Jill Brook: Yeah, right on. What is the toughest thing about POTS? Belle: Ooh, I could throw a whole thesaurus at that. There's so many tough things with POTS, but I think the biggest one for me is loneliness. It can be really isolating and really scary, and even if you don't [00:20:00] know anyone else with chronic illness or you're not being believed, you, you feel like it's just you against the world, and that's really scary. Jill Brook: Yeah. Yeah. That's a good answer. What's an activity you can enjoy even when you're feeling really POTSy? Belle: I was gonna say reading, but sometimes reading can be tough too. I do find just throwing on like some cute dog videos or some cute animal videos on the TV and laying down. That's a good activity. Jill Brook: Nice. What is the thing that you look forward to the most every week? Belle: This one's probably cheesy, but my dogs. I have a couple of floofs at home and they bring me so much joy. Jill Brook: What helps you fall asleep, if anything? Belle: I like to listen to rain sounds. You like put it on your phone. And weighted blankets. Jill Brook: What helps give you energy when you [00:21:00] need it? Belle: I do find having some salty snacks and a good electrolyte drink can give a little bit of pep in my step. That's usually helpful for me. Jill Brook: What is a gift that you would have sent to every POTS patient on earth if you had an infinite budget? Belle: Oh, wow. I feel like I would send them, first of all, all the compression socks cuz they are too dang expensive. And second of all, all the salty snacks cuz you can never have enough. Jill Brook: Yeah, I've always thought that there should be some sort of a compression stocking exchange because I don't know about you, but I had to try a lot before I found ones that actually fit me properly. And that was expensive too. And I figure there's a lot of other people out there who have lots of expensive compression socks that didn't quite fit right, sitting in their closet. Belle: Yes, I agree. Like a secret Santa, but just for POTS patients and just for compression socks. Jill Brook: Right, right. We just keep trading till everyone finds the [00:22:00] one. Belle: Yeah. Until you get the perfect fit. Jill Brook: What is something that you're grateful for? Belle: Ooh. My family and also the community of people who also have POTS. Everyone's always so nice and so like I remember just going on some forums and being like, Hey, I'm not feeling great and I don't know what to do. And people just like throw love at you and it's just such just some supportive community. Jill Brook: You know what's funny is I went to a little cocktail party the other night and it was my first one since COVID, and so it's been like three years. And so I've been used to interacting with all of the communities and online and being with the other patients and stuff, and I guess I kind of got used to that because I went to this actual in person cocktail party and my feeling was people are not as friendly as I remembered. And then I was like, Oh, wait a second. We're outside the patient community. I feel like in the patient community, everybody's so kind to everyone else, and it's a little bit of a shame that it's not like that in the real world too. Belle: [00:23:00] Yes, I agree. Like 100%. Everyone's always so kind here. Jill Brook: Yeah. Okay. Can you finish these sentences? I love it when dot, dot, dot. Belle: I love it when it's been a really long day and you just peel off those compression stockings and you just crawl in bed. Jill Brook: I hate it when, dot, dot, dot. Belle: Ooh. I hate it when you're trying to have a conversation with people and you start to not feel good and you get POTSy symptoms and you have to excuse yourself halfway through. Many awkward conversations. Jill Brook: Yeah. Okay. People might suspect I'm a POTSie when, dot, dot, dot. Belle: I'm in the middle of a mall and I'm on the floor and my feet are against a wall. Jill Brook: All right, so this next question you might have just answered, but have you ever had to sit or lay down in a weird place because of POTS? And if so, where's the weirdest place? Belle: [00:24:00] Oh, huh. So the answer is yes many, many places. It's another thing I had to get through is not be embarrassed. I think the weirdest place either when it was my first symptoms, was in, I had to sit down in the middle of a boarding terminal while boarding a plane. That was a little awkward. And also at a concert, I've had to kind of remove myself and sit on the floor with my feet up. That, that's, that was also a little awkward. Jill Brook: So it sounds to me like you are well acquainted with sticky floors, concerts, airports... Belle: Always bring a backup jacket. Always bring a backup coat and just lay it on the ground. Jill Brook: Right on. Okay, I just have a couple more questions. What do you wish more people knew about POTS? Belle: I wish more people knew that it's so complex and that just because I look like I'm doing okay and I'm having a good day, I'm [00:25:00] probably not. I'm probably fighting through some stuff and just be gentle like, man, I just wish that people were more kind to each other, especially when you have a chronic illness, it can be really tough. Jill Brook: Yeah. Okay. And last question, is there anything you'd like to say to your fellow POTS patients out there who are listening. Belle: I believe you. I believe all your wild and wacky symptoms. I believe you when you say that you have a weird quirky symptom that doesn't match up. I don't think it's in your head. I think that you are a hundred percent going through something and your feelings are a hundred percent valid and I wish I could just give everyone a hug cause that's what I needed. Jill Brook: Oh, that's beautiful. Well Belle, thank you so much for sharing your story and your insights and your goofiness with us. We really appreciate it and I know everybody listening wishes you only the best going forward. Belle: Thank you for having me. This was a really great opportunity and I just wanna say you're also really [00:26:00] kind and wonderful and I believe you too. You're just, ah- Jill Brook: Thank you. Oh, that's why I love this community. Right on. Hey, listeners, I hope you enjoy today's conversation. We'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.