Jill Brook: [00:00:00] Hello, fellow POTS patients, and lovely people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Bria. Bria, thank you so much for joining us.

Bria: Thanks for having me.

Jill Brook: Okay, so let's start by just getting to know you a little bit. What is, what is the basics about Bria?

Bria: Okay, well, yeah. My name's Bria. I live in mid Wales. I'm currently pretty much living where I grew up, but I've lived across different parts of the UK and also abroad. I currently work for a disability rights charity, um, but my background is in like theater and arts.

I live with my partner and my cat and yeah, live with lots of different weird and wonderful health conditions and yeah, I'm excited to be here to, to talk about it and to yeah, contribute to, I guess, a community that's I've received a lot of support from. So happy to be here.[00:01:00]

Jill Brook: Yeah. Oh, we're excited to talk to you. Okay. So maybe first tell us a little more about you. What would your friends and family say is your personality?

Bria: Oof. That's a hard question. What do people describe me as? Quite driven, which is, is weird for me because I think I don't necessarily see myself as very driven. Empathetic, caring, um, but also I guess, over the years, you know, I think in some ways having long-term health conditions, like really does impact us as, as people, so I'd be curious to ask 'em again what they, what they think if all those things are still true.

Jill Brook: Okay. And if we make you brag about yourself, what are you good at?

Bria: Oof. I'm good at lying down horizontally. I'm good at looking after my cat. She's my whole world. Am, I think I'm good at my job. I'm good at talking. I'm good at [00:02:00] talking about, to listen to people and their problems and help them solve them, and especially if they're like around health and fitness and things like that, because I feel like you, you get, you gain so much knowledge when you live with longterm health conditions.

So I do love talking about that with people. I think it's like I get a special buzz from helping someone else because obviously, you know, I've received a lot of help in the past myself, so it is nice to, to do that back to someone.

Jill Brook: Oh, that's so nice. That's lovely. Okay, so, so I had asked you before we started if you had ever had a life before POTS, and you said you did. So I'm wondering how long ago was that and can you describe what your life looked like, say in that year before POTS entered your life?

Bria: Yeah, so I mean, for me the, the journey's kind of been a really strange one. So I think the first time I had symptoms was in my final year of [00:03:00] my bachelor's degree. So at the time I was studying at a drama school, an acting school. I was super active, probably the most, yeah, active I ever was in my life.

And I just, you know, when I think back to where I remember one time I had, I went out for lunch and I had like a super carb heavy meal, and then I remember trying to walk home and I remember feeling this really strange fatigue and like this inability to walk. I felt like my limbs just weren't my own. And I remember thinking, but I'm a student, I can't afford to get a taxi back. Like, how am I gonna walk home? And I look back from that now and I go, oh, I think that was the first time I ever had symptoms. For me, like, then I had, I had symptoms, but they really weren't every day. They didn't necessarily impact my life.

So I, I went on to do my master's degree, um, in theater directing, and I did that in in the Czech Republic. Um, but I, that was [00:04:00] around the time when I started realizing what it was. And I think the only reason I made the connection between what I was experiencing was because I also have hypermobility. You know, I knew a lot of people with hypermobility had this condition and the, the symptoms were similar. So, but like I said, it was, it wasn't until I think 2020 that my symptoms started to become daily and really sort of impacting my life. So I had quite a few years where it, it kind of, I, it didn't bother me so much and I kind of could ignore it, um, which was useful because you know, I wasn't getting diagnosed. I think the first time I told a, a doctor, like, I think I have this condition, they said, well even if I diagnosed you with it, like there's nothing you can do about it, so let's not bother. And at the time I didn't know that that wasn't necessarily the truth.

So, I didn't pursue a diagnosis until much later. Um, and overall it took me eight years from the [00:05:00] moment I learned the word POTS to officially getting a diagnosis. And unfortunately I had to go private at least two times to get that diagnosis, which I think had I not done that, I might still not have had a diagnosis today, to be honest. Um, I only got access to medication, um, at the beginning of this year, so it was even longer to get you know, sort of a treatment plan started. So it's been, yeah, a, a kind of wild ride, but something I think the majority of people with this condition have experienced. And it is weird for me to think that I've had this for eight years, but, you know, at least like four of those were completely different to what my, my kind of day-to-day life is now. And that's really hard to deal with, I think, when you can like look back and go, well, I did have POTS then, but I could walk for hours a day. I could do a master's degree. Things I just [00:06:00] couldn't do now.

Jill Brook: Wow. Okay, so there's a lot. Again, but can I just confirm that you said it took you eight years after you knew you had POTS

to get a diagnosis?

Bria: Yeah. Eight years.

Jill Brook: Wow. Okay. So can you talk more about what you just said about your symptoms changing? Have they gotten worse despite you maybe now having more support and access to treatments?

Bria: Yeah. It's a real mystery and I don't know why, but and I, you know, I think about it a lot and I, and I, you know, I run all these, my own experiments at home and I try and replicate like, what, what was I doing you know, in before 2020 that I don't do now? But nothing has kind of really changed the severity of the symptoms. You know, my hypermobility has also gotten worse. I also got diagnosed with endometriosis around the same time. So I kind of wonder if [00:07:00] there was just a general kind of, I don't know, increasing of those conditions that led to the POTS becoming the symptoms becoming so prevalent that I was, you know, very aware that I was living with it rather than before that it was something that would hit me every now and again. It's, yeah, it's, I don't know why, and it is really frustrating. So I've had to really learn how to live with this condition only really in the last sort of four to five years. But it's been a, a steep learning curve for sure.

Jill Brook: So can I ask, what kind of symptoms are your most debilitating these days?

Bria: So I think the one that bothers me the most is the extreme fatigue and brain fog. So about at midday every day, and I, this again is a mystery to me why this happens, I'll suddenly feel extreme fatigue. And sometimes I'll look at the clock and I go, oh yeah, it's, it's midday, it's about about the time this will happen. And that usually is, you know, when I'm at work, so I'm sat down. [00:08:00] So for me, it wasn't obvious at the time that that was a POTS symptom because I was so used to that being heart palpitations and low blood pressure, high heart rate when walking or standing, et cetera. But for me that's probably the one.

If I could, you know, wish one symptom away, it would probably be that because it can really obviously impact your ability to concentrate to work even, you know, when you're relaxing and you just wanna read or watch tv. So that's, yeah, really frustrating and the kind of impact on my ability to like move around, I would say is really hard as well.

Like, I used to love going on really long walks. Like I live in a really beautiful part of the world. There's lots of like amazing walks to go on and I used to go on sort of like hour long walks with my dad. I remember when I was writing my dissertation, and I think back to that now, I think, I don't know if I, I couldn't do that every day.

I can like, you know, walk five minutes and then my, my vision starts to go blurry. So, yeah, it's those things that can be [00:09:00] really, really hard to adjust your life to, but I think I'm in a place now where, you know, I, I know my body a lot better and know what is gonna trigger it, and I can kind of, you know, find you, you, you learn how to find workarounds to still, you know, kind of do the things you enjoy in life.

Jill Brook: So what kinds of things trigger you nowadays?

Bria: Definitely walking, definitely eating heavy meals, um, which is hard for me because I love to just, yeah, I love to eat. But I've definitely learned that to like kind of split my meals up into smaller portions throughout the day, which is easy for me 'cause I work from home, and I think, but I also, so I often think like, if you don't have access to your fridge, that's just, you know, sort of downstairs, like how people deal with that. I like even just sleep, like if I have even just like seven hours instead of eight hours I really notice the difference and it makes you kind of [00:10:00] feel like, I don't know, like a princess that needs, you know, lots and lots of sleep, but that definitely has an impact on my life. So I really do work hard to kind of look after myself in all the ways that I can, can control, um, so that I give myself the best chance to kind of not have too many symptoms during the day. But that in itself is like a full-time job. You know, like managing all of those things, thinking about what you're going to eat, planning your day ahead, making sure you've got time to rest.

It can also be just as exhausting as the condition itself.

Jill Brook: Yeah. Yeah. So can I ask in addition to trying to get enough sleep, what else helps you the most these days?

Bria: I've been kind of playing around with some, like different supplements and I'm still sort of like tracking those. It's hard for me to say like whether that they specifically help with POTS or just help me manage [00:11:00] symptoms like the fatigue symptoms. Um, definitely also things like I've, I've explored like low histamine diets or reducing gluten and dairy. Again, it's hard to know if that's just helping things like my endometriosis and, and overall wellness rather than kind of addressing like the kind of root cause of POTS. Um, like movement is definitely a, a, an important part of my life, but it's really hard to do obviously with POTS. I think in some ways because I was super active when I was like first to had POTS, it was kind of easier for me to maintain some sort of like ability to be active, um, whilst my condition got worse. And I kind of, I'm still working out what that sweet spot is between doing some sort of movement that helps manage, manage my POTS, but [00:12:00] that isn't too much that, that then I experience, um, fatigue from it. And also I know how important sort of like strengthening my muscles is for my hypermobility, so that is really important to do, but sometimes it feels like it's very hard to do when you have a condition that you know, you know, I can be like doing a leg press and suddenly, you know, my vision goes and it's like, okay, I'm helping one condition, I'm making the other one worse, but we'll take it.

Those are some of my main go-tos. Obviously things like electrolytes. Medication wise is a hard one for me. It's, I'm, I'm, on it on some now, but I don't think it's had a huge impact to be honest. If anything, since being on it I think my symptoms have been the same. So that's definitely something I haven't explored all my options there, but definitely something I might find something that works better for me in the future.

Jill Brook: Yeah. Yeah. So you had talked about such an intriguing past that I, I would love to hear more about too. [00:13:00] You had said that you majored in arts and theater and then you got a master's in theater directing. But then I think you mentioned that you're now working in patient advocacy.

Is that correct? And, and did your own health kind of guide that career decision or how has this affected your, your work?

Bria: Yeah, I think it's a strange one. I think after my master's degree I was always doing kind of projects that had a real strong kind of social justice political foundation. And I think after many years of doing that, I kind of decided I just wanted to do the kind of helping other people thing, not necessarily through, um, art in an explicit way.

And I also think at that time, you know, my POTS wasn't so bad, but my, the, the kind of like living with chronic pain was pretty bad. And I think that also played a [00:14:00] part in that decision of, you know, is this kind of life of running around and making theater with not much money, like actually accessible to me at that time. So I kind of decided to pivot to work for charities because I felt like that was a direct way to kind of help people. And then over the years I've been really lucky to kind of, focus that on now working for, for a charity that specifically works to, uh, fight for kind of rights for people, for disabled people. And that obviously really closely aligns with my own experience. And yeah, it's definitely kind of the most fulfilled I felt in a role. And I specifically work in the, in, in campaigns. So we, we campaign for, you know, to improve, um, legislation or conditions and things like that. So, um, yeah, it's, it's definitely super rewarding and I really love doing it. And I'm [00:15:00] also currently training to become a counselor. And that's something that's a very long-term project. I'm nowhere near qualified, but it's a kind of hope for the future. And I'd really love to maybe like specialize in helping people with long-term health conditions and how you deal with that from an, a kind of mental health and emotional perspective.

Something I'm really interested in doing in the future as well.

Jill Brook: That's great. That's so wonderful. You know, it's funny 'cause you've made me think about how I think POTS has some unique parts to it that make it in need of some of the things that you do. And so here's my example. Like everybody understands certain kinds of disabilities, and if you need a wheelchair that's not, you know, a big deal and if you need a ramp or whatnot, but for example, I'm, I'm deathly afraid of getting called into jury duty because I could not sit upright

for even one [00:16:00] hour, much less eight. And I don't know that that would be understood by anybody. And like for the Mast Cell Activation Syndrome, I don't think I'd be able to sit there if anyone were wearing perfume or fragrance. And that's another accommodation that nobody ever talks about. You never hear about it.

And I just worry that because our little family of conditions is not well understood that it, it doesn't yet have accommodations of the type that would actually help us in some ways.

Bria: Yeah, absolutely. That's the kind of thing that I think about. That keeps me up at night and I feel really lucky that I work in a place where they're so supportive, they, you know, make all the accommodations that you need, and they, there's no like questioning about it. And you know, when you have these kind of weird and wonderful and invisible conditions, then you know, [00:17:00] you, there's always that dread moment of trying to explain to someone like, why you might need a seat when, especially, you know, if by other kind of perception you look you know, quote unquote well. And when you work in a place where they're so, they, they really, you know, work hard to give you those accommodations you realize, oh, this is how it could be. And it's actually not hard and it doesn't take a lot of time, and it doesn't take those more resources.

It just takes an attitude shift in the most part. And suddenly, you know, I feel super empowered to ask for the things I need, and then I'm able to kind of get on with, with what I wanna do and what I love to do. And I think, yeah, your example of jury duty is exactly that. Like you might really wanna do jury duty but how would you, yeah, go about tackling all of those individual needs when you know that that might not be something anyone's ever raised before to them, so they wouldn't even maybe begin to [00:18:00] understand how to, to help. But I do think things are shifting in some spaces, which is great. And I think connecting online and in and through like these kind of like this podcast is definitely a way that, you know, is all about spreading messages as well. And I think it all does help in the long run.

Jill Brook: Yeah. Yeah, and that's great. Can you talk more about what you do with legislation, because that sounds really important.

Bria: Okay. Well, yeah, I mean, so currently we're, so in the UK there are proposed cuts to disability benefits that have been proposed by the current government. So we've been working really hard to kind of campaign against that and build support, yeah, against it. It's, yeah, it's, it's a big, kind of big campaign for us and obviously really concerning and you know, I know there will be people with POTS and with I like what you said about [00:19:00] family of conditions,

I think that's a really great way of explaining the kind of conditions that come along with it, who will be impacted by those. So, you know, it's, it's also feels quite personal to me as well to be working on something like that.

Jill Brook: Yeah. Is there anything that you know now that you wish you had known sooner living with this?

Bria: Many things. I think I saw this really nice sort of phrase. Someone said DIY healthcare. And it was someone, it was like a TikTok video of someone saying they had, I think they had Mast Cell Activation Syndrome. And they said like, you know, they, someone, they saw someone else on, on TikTok and they were using this specific antihistamine and they tried it.

And so, and it's like really helped 'em. And I was like, that's exactly how I've learned all my best tips and tricks is like through the internet to be honest. And so I'm, so, yeah, I kind of wish I got on TikTok sooner because there's so many things I've learned and there also are things I've tried that haven't helped [00:20:00] me either.

But you know, there's something about sharing those tips that also like, helps build the sense of like not being alone as well. So even if it's just like a type of electrolyte or you know, a time of day to eat or avoid eating or you know, when's best to put on the compression socks. And people just like trying small things.

And I always say that sometimes I'll find something and it will improve my symptoms by like 2%, which seems like nothing. But actually when you live with a chronic health condition, that 2% can actually mean everything. And if you find like 10 things that help you by 2%, that's 20%. So, it can make a huge difference.

Yeah, just this, there's so many things that, you know, I didn't even know about electrolytes for many years, to be honest. Like I said, I only was diagnosed in 2024, so, officially so, you know, I wasn't really onto the basic stuff. [00:21:00] So even just having that information years ago could have really helped.

Jill Brook: So it sounds like you didn't have a really obvious trigger. I mean, that's my situation where it kind of came on slowly over years, and I can maybe guess at a trigger, but it's hard to know. Is that, is that what your situation is?

Bria: I think so.

Jill Brook: Yeah. Yeah. And that's always that always makes it harder 'cause you just don't know, I'm guessing you don't know the underlying cause of your POTS.

And so when you're experimenting, it's almost like you have to say, well, let's just pretend I have autoimmunity and do the things for that this month and see what happens. And next month I'll just pretend I have MCAS and do all the things that, that are good for that. And is that kind of how you're approaching things?

Bria: 100%. I have so many spreadsheets, Jill, of so many failed experiments. Me and ChatGPT every week scheming to find some new angle. I started [00:22:00] doing like at home testing now for things like, I think I did recently. I mean, it's not like super conclusive, but one for like histamine levels. And that came back like fairly normal.

So I was like, okay, maybe, you know, putting all my effort into looking at like sort of lowering my histamine levels might not work. Um, yeah, I recently had an MRI on my neck because I was kind of wondering if there was a structural, something structural that was maybe making my POTS worse,

'cause I was also experiencing a lot of pain. And it turns out I have early degenerative disc disease which is very much probably just like genetics and linked to the hypermobility. I asked the, the surgeon like, so you don't think it would relate to my POTS? And he was like, no, no. He was like almost sorry for me because he was like, I know you want to like have

something to kind of go, ah, that that's what it is. And he was like, it's probably, you know, people with hypermobility are very likely to have POTS. It's probably, you know, that connective [00:23:00] tissue kind of root cause, which obviously is very, you know, I don't know of a way to address that apart from managing the symptoms.

So, it is frustrating. I'm very much a data person and I like to have answers. So it it does, bother me. But in a way it keeps me going in that kind of like, I'm always like hopeful that I'll find something that will that will help, and whether that's delusion or resilience, I don't know, but

Jill Brook: Yeah, I relate. It's like you are a part-time detective, but being a detective's not an uninteresting job.

Bria: I think maybe I should like, maybe like sidestep into detective work, 'cause yeah, the investigations are endless. And I think I must enjoy doing it 'cause I'm like smiling, talking about it. So at least it's, that's probably my hobby now when people ask me, what, what are your hobbies? I just say investigating. I won't

tell 'em

what.

Jill Brook: I have been doing the same thing with ChatGPT. Have you found any particular [00:24:00] model to be the best for your needs?

Bria: I don't know if I know about models. I just I just use, yeah, I just have various threads for all my conditions and tell tell them all my, every neurotic thought I have. And today I noticed this thing, and yesterday I did this. Is there a connection? Sometimes there is, and you know, sometimes we figured this stuff out.

Like, I think recently I, I knew I was having some sort of gut problem, like, and there were, you know, there's so many different, like gut health is becoming like quite a, I don't know, prolific thing. And I was kind of thinking of going to see a gut specialist, but was, you know, like I might need to sort of save up money to do that.

And I just, you know, from inputting loads of information, I was like, right, what's the most likely of all of these these gut problems might I have? And he mentioned what he, I call him, he, which is terrible, I know. Then I was like, okay, what, what would be the first like sort of treatment option and [00:25:00] spoke about a specific probiotic and I started taking it and actually I have my symptoms have, have like almost gone away that was experiencing specifically for that. So that was one of the first times my investigations has actually worked. So I'm living on that high at the moment. Um, so I mean that's like one of 20 different interventions I've come up with. And that has, you know, only that one has worked, but you know, a win is a win.

Jill Brook: Yes, absolutely. And I've been playing around with different models and the ChatGPT with the Deep Research is the one that has blown me away. And same thing as you, like 20 times a day, every thought. The one that I just did on nutrition was I thought, you know, I could do the work to see what are the commonalities in the foods that I either tolerate or don't tolerate, but I'd rather just

give it to the, give it to ChatGPT and see what they say. So I said, okay, I tolerate all these things. I do not tolerate all of these things. Here's the conditions I have. Here's some symptoms I have. Does this [00:26:00] make sense from a FODMAP standpoint? What are the next foods I should try if I want to test out some theories?

Could this have anything to do with, you know, salicylates or oxalates, or histamines and it was amazing. And in the end it ended up giving me its theory about what was happening and some next steps I could try. And then I had it make me a a week long menu out of the foods that I do tolerate. And I told it how many calories I wanted it to add up to per day.

And I thought, oh my goodness. Like, I, I'm not, I'm not recommending this, you know, everybody at home, you know, check with your medical team, but doing this little playful experiment first, I think it brings up so many important points and especially when it comes to just the busy work. Like anybody can go look up what foods are in this category or that category and you know, is there a theme to what you're tolerating or not.

But that takes a lot of time. That's a pain in the neck. But [00:27:00] ChatGPT does it in seconds. And. Anyway, I, I am just agreeing with you that that is an interesting new thing to try and that's fascinating that it, it, did it find like a particular probiotic strain or a particular probiotic brand that you should consider?

Bria: Particular strain and it was like one, because I have tried probiotics before and it was, I didn't realize that this one specifically was, I can't remember, but it like works slightly differently to how most probiotics work. So it was, you know, potentially just something I never would've come across had I not, you know, used ChatGPT.

And I think, I think you're right, like there's obviously it can't replace medical advice, but I also think there's something about having a place to dump all those thoughts that's also just really therapeutic, you know? And I think, know, I, I share all my thoughts with my partner and he's incredibly patient and listens to them, but I [00:28:00] think it's like helpful for me to have someone else to dump all this information, and obviously they remember it as well.

So, I definitely, I'm hearing what you say and I found it really helpful.

Jill Brook: Yeah. Yeah. And I guess, okay, one more time. For legal reasons, we're not recommending this anybody. This is probably dangerous, terrible advice. You know, work with your, your medical providers. But I have to say, one additional thing I like about working with ChatGPT is that at the end, if it does come to a conclusion that here's some supplements to consider or something like that, you can do the next step and say, okay, well I'm really sensitive to a lot of excipients.

Find me the brands that have the fewest allergens or the fewest excipients, and then it can do all that busy work for you too. And I mean it's, it's like getting, I mean, so many hours with either, you know, a professional who might do those things for you, or if you had to do 'em yourself, it would take so long.

Bria: Definitely.

Jill Brook: So that's really smart. So, okay. I've been wanting to ask you this since the beginning. Can you tell us more about your [00:29:00] home? Because did you say you live in Wales?

Bria: Mm-hmm. Yeah. I live in mid Mid Wales.

Jill Brook: Okay. Mid Wales. So can you just talk more about that? My, my vision of Wales is that it's just so green and beautiful and lush. And I don't know, is that correct? Can you tell us more about your hometown?

Bria: Yeah, I mean, it is not, not everywhere obviously, that we have cities and towns and I live in a, in a kind of small town. But you know, even just my back garden backs onto a woods. And so, you know, I wake up every day with birds singing, which I, I find like maybe that's something I've also feel like helps calm my nervous system and definitely helps with POTS, so I feel really lucky to have, yeah, to be living around so much nature. And yeah, I mean it's, you know, if you'd ask young Bria like, or told her, you know, you'd be living back in Mid Wales as a, you know, as a teenager I would've laughed at you, but it's funny how we kind of, get drawn, drawn back home and there's a [00:30:00] specific Welsh word that I don't think has an English translation and it's hiraeth and it kind of, uh, if you were to try and translate it, it's like the specific longing for home that you get with Wales. So I think there's a magic there that brought me back basically, and that's hiraeth.

Jill Brook: Wow. Okay. And one more question. So as somebody with a master's degree in theater, what do you consider to be like top theater productions that people should see if they wanna see just amazing theater.

Bria: Well, I might disappoint you here because the kind of theater I did was like alternative and kind of more installation and artistic. The one downside of living in Mid Wales is that there isn't really any theater. So I haven't really seen much, yeah, I haven't seen been to the theater in a long time, unfortunately.

So I don't know what's, what's good anymore.

Jill Brook: And one more funny, just commentary. So my [00:31:00] husband who's like, you know, he's an engineer and a computer guy, and very much like in that world, he always talks about how the one summer he spent doing theater in high school and learning theater games was like the most helpful, productive thing he ever learned in his whole life.

And he always talks about this 'cause it helped him, I think, like know how to bring energy to meetings or presentations or, or things like that. And I was just, you know, I've always thought that that was interesting that that that meant so much to him. But, but I don't know, what does that mean to you?

Like, what do you, do you, do you feel like you gained certain skills that you use every day?

Bria: Yeah, definitely. I think I'm not a super confident person. I'm not really an introvert, but I'm definitely not an extrovert. But I do, you know, notice the difference when I'm say like in a working environment with maybe people who have done theater and who [00:32:00] haven't. And like I think if you haven't done theater, you can still be super confident and amazing presenter. But there I do feel like that kicks in and helps me when doing like presentations or speaking. I find myself, you know, I always get nervous to do things, but kind of, I don't know, I've, I've done worse things than stand up and, you know, kind of give a speech or something as myself. So there's always that to compare it to, and it kind of helps me be maybe a bit more brave to do things.

Jill Brook: Yeah. Okay. So back to POTS. Do you feel like it has taught you any life lessons?

Bria: Yeah, definitely. I feel like I'm going through a real, like transformational time with, with it at the moment. Like, you know, we're kind of talking about all these experiments and you know, trying to find ways to improve the symptoms, but there's also a part of me that's trying to find ways to accept it.

And I think that is a real learning curve and it's teaching me a lot about myself. Um, I'm kind of [00:33:00] trying to hold two truths at the same time. One that, you know, I wanna keep working to, um, find ways to, to, to treat my condition, but also find ways to live with it and to accept it and to not make it the enemy essentially. And one of the ways I kind of have been doing that is by thinking about, okay POTS, yeah, you know, the fatigue, the brain fog, the heart palpitations suck. Like that's, uh, objective. But actually what has, does it give me anything positive? And actually, you know, when you meet people with these kind of family of conditions, like I definitely notice similarities in our personalities. And some of those are amazing things. Like almost all, everyone like is highly empathetic. You know, I always got called sensitive as a kid, but actually I learned that's just being able to empathize with people and that's to me is, is such an amazing quality.

And I think, [00:34:00] you know, I'm really interested in in evolution and genetics and stuff and I sometimes I wonder, you know, does my body react like this because I'm living in an environment that isn't, you know, like doesn't suit me. But in a different kind of context, maybe not all of these symptoms would come as, you know, like would be an illness.

It would be, you know, a power. You know, our ability to sense changes in our environment is a type of intelligence. It just, you know, it does happen to suck most of the time, but but I do think there's something there, and at least, you know, if it's not, it doesn't really change anything. But it does help me reframe how I feel about having POTS and having my other health conditions as well. And I think, you know, it is a part of me that I want to learn to kind of accept and find the power in it, and find the strength in it as well. But that doesn't mean that every day I won't get upset and I won't get frustrated and I won't [00:35:00] maybe grieve like, uh, you know, the life I, I used to have.

And I, and it's how do you kind of exist in the world and have both those things be true at the same time and it's really challenging. But that's something I'm learning and want to, yeah, continue to kind of learn more about.

Jill Brook: Yeah. Yeah. Okay. Well, are you willing to do a speed round where we ask your poor oxygen starved brain to just spit out the first word that comes to mind?

Bria: Sure.

Jill Brook: Okay, great. What is your favorite way to get salt?

Bria: Oh, it has to be my LMNT salty, spicy mango I can't remember what they're called, specific electrolytes. It tastes like a margarita without the tequila which is pretty good.

Jill Brook: Okay, so next question. Is the drink you find the most hydrating? Is that the same?

Bria: I guess it's just, yeah, just, I, I've been a drink like 10 liters of water a day [00:36:00] girl, since I was like 14. Probably not 10 liters anymore. So, uh, I always choose water over anything else. So I've gotta go with with, with H2O.

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

Bria: Probably like seven o'clock. And I've noticed quite a lot of other people who have come on the podcast have said, the evening, and I, I have this theory about like maybe we're vampires and maybe we're supposed to operate in the evening and the night. Maybe not the night, but like the evening. Um, because I was like, oh, okay, it's not just me because midday for me is, is danger zone. But then come six, 7:00 PM I feel like, oh, I could do all these things I definitely couldn't do a few hours ago. So, yeah, I find that really interesting. So I'd say 7:00 PM.

Jill Brook: Interesting. Okay. Where is your favorite place to spend time and why?

Bria: Ooh. I love a hammock. I don't have one at the moment, so if I put a hammock in my garden [00:37:00] and be there with a, on a sunny day reading a book with the bird singing and maybe my cat joining me, that would be, yeah, close to perfection.

Jill Brook: How many doctors have you ever seen for what turned out to be POTS?

Bria: Too many and probably not enough, I think. Yeah, I, to be honest, the, the, the best healthcare professionals I, I see are like I've got like my, my physiotherapist and my, my counselor who I, I see privately. Shout out to them. They're the ones that see me like as a holistic, like whole person and not interested in all of the different symptoms. I don't really get to see like, sort of doctors on a regular basis, unfortunately. So, um, not enough doctors, I guess.

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

Bria: You know, I think it's only one. Yeah, and that was quite recently, so, I never met [00:38:00] anyone with the same conditions as me until recently. Yeah.

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

Bria: Confusing, I would say, because you don't have all the answers and you want the answers, and you just kind of go in the, the loop of guesswork. That can be very confusing.

Jill Brook: What is some good advice you try to live by?

Bria: I am trying to live by like, I guess the mantra of, of Let it Go. People keep saying this to me and so, I think it's good advice. I haven't quite mastered it, but I'll say, Let it Go.

Jill Brook: What is something small or inexpensive that brings you comfort or joy?

Bria: Ooh. My heated blanket or something like that. I feel like even in like, it doesn't get too hot here in Wales, although it's quite warm at the moment, so I can kind of have that comfort. And also use it as then like a pain you know, like heat pack. So it's multifunctional.

Jill Brook: Who is someone that you admire?

Bria: [00:39:00] I would say my partner, because they're incredibly patient and hardworking and don't, didn't know anything about, you know, POTS or hypermobility and worked like super hard to learn about it so they could help me on this journey, and yeah, that I, I think it's really important to have people like that in your life.

Jill Brook: Ah, yay. Shout out. Thank you. What is something that you're proud of?

Bria: Hmm. Maybe doing this. Maybe like, you know, being here and talking about it in a positive way. And not giving up. And not giving up. Yeah, fighting.

Jill Brook: What is the toughest thing about POTS?

Bria: I think, for me, the toughest thing is that one minute, you know, I can feel like I don't have POTS, and the next I can't walk, and I have to be in bed. And I think that's really hard to deal with, that kind of up and down. You know, you had plans at X amount of time to go for a walk and then suddenly you can't, but [00:40:00] another day you might be able to. It's really hard to, to organize and plan your life and to get your head around. Um, and yeah, I think that's always gonna be quite frustrating.

Jill Brook: What's an activity you can enjoy even when you're feeling really POTSy.

Bria: Probably like reading and even or if I, like, the physical act of reading is hard, like I really enjoy listening to audio books. So, and they can be quite distracting as well. So definitely leaning to that when I'm not feeling good.

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

Bria: Magnesium. Eye mask. Not too hot of a room, not too cold. And breathing. I really forget to breathe sometimes. It does work. I promise.

Jill Brook: What helps give you energy, if anything?

Bria: Sometimes like a small movement, like even if it's just being on the floor and like sort of moving my body in a like [00:41:00] purposeful way can really, sometimes it's, it is the hardest thing to do because when you're feeling terrible, but actually, if I can get myself there and do that, I'll almost always feel a bit more energized afterwards.

Jill Brook: Have you ever had to sit down or lie down in a weird place because of POTS, and if so, where was the weirdest?

Bria: Oh yeah. I mean before, yeah, gigs just sat, sat down, been, you know, the early days where you're learning, you don't quite know what your, your limits are. It's always like the stripping off the layers and it's, well when you get over heated, that's a good one. Um. But a lot of, yeah, a lot of crouching in, in train stations when there's no um, seats.

Probably not that weird, but stuff like that.

Jill Brook: So, last question. Is there anything you'd like to say to your fellow POTS patients out there listening, especially the ones who might be having a rough day today?

Bria: I think, reach out to people. [00:42:00] And even if that's just in online spaces. I think it can be really hard, like I, you know, we were saying before, I hadn't met anyone with POTS before until recently. And I think it really made a difference when I, you know, met people online that, you know, had the same similar experiences to me. And it doesn't necessarily change anything, but it definitely makes you feel less alone. And to remember that this is a big part of our lives, but we are both, you know, it is both part of us, but also it's not the whole picture. And that we can kind of reframe it, but it's also okay to have days where you, you're angry and frustrated, but but you can also have days when you, you feel strong and resilient and both things can be true at the same time.

Jill Brook: And you know what, I have to ask you one more question. Since you are a professional patient advocate, what do you wish more people understood about POTS?

Bria: That it's dynamic. That just because [00:43:00] someone has has it doesn't mean they're gonna be the same or present the same every day. And to, yeah, I think when I was going through my diagnosis, you know, I always had this fear that people wouldn't believe me because one day I could do something and the next day I couldn't. And I remember when I got got my diagnosis, you know, I, I was trying to pay for parking in the hospital and I was just bawling my eyes out. Like, and I remember saying like, I, I wasn't making it up, you know? And even though I knew for eight years I wasn't making up, I think that was a part of me that, you know, kind of let that thought, you know, fester a bit. Um, and I think that causes so much pain for people, you know, to to live in a world where people maybe don't believe them or make them feel kind of, not believed. So I wish people understood how complex the condition was so that that could kind of be stopped from people's experience of it.

Jill Brook: Amen.

Well, [00:44:00] Bria, it's been so lovely talking to you. Thank you for all of your insights. Thank you for sharing your story, and I know that everybody listening is really pulling for you to just have the best possible future. Thank you for being here.

Bria: Thank you, and thank you for having me.

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.