Navigating Life While Living With Long Covid- An Interview With Brianna Beasley

It's episode 12 of Carrie's Always Talking! At the top of the episode, Carrie discusses the choice to make this 12th episode the last of the season. She thanks her listeners for following along for the last couple of months and encourages anyone who wants to come on the podcast for season 2 to reach out. 

In this episode, Carrie chats with Brianna Beasley, who graciously shares her experience with Long Covid. Brianna discusses life before her diagnosis in 2021 and the changes she's been forced to make in her life because of her health concerns that developed in the months after her acute infection. She explores the concept of "pacing" in order to learn one's limitations when living with a chronic illness. Brianna also discusses her doctors and some of their theories around how long covid develops along with the treatments that have been most helpful for her thus far in her bid for recovery. Her story is one of resilience and determination, and the hope is that listeners learn more about this diagnosis and also gain a better understanding of what challenges individuals with disabilities can face in day-today life. Anyone can become disabled at any time, and Brianna does an amazing job at providing useful information while being vulnerable in sharing her story. 

Brianna's story is not intended to be medical advice, she encourages those listening to do their own research. She does provide some references that have been helpful for her, and those are included in the notes below. 

Resources mentioned in the podcast:
https://www.cdc.gov/covid/hcp/clinical-overview/index.html
https://www.yalemedicine.org/news/what-is-long-covid
https://covidinstitute.org/https://www.healthrising.org/blog/2023/10/12/septad-chronic-fatigue-syndrome-pots-long-covid-kaufman-ruhoy/
https://www.youtube.com/watch?v=v8HWt9g4L0k

If you have a story you'd like to tell, send me an email at carrie.always.talking@gmail.com. I'd love to hear from you.

Facebook group- www.facebook.com/groups/carriesalwaystalking/

Transcript

Carrie McNulty (00:02)

Hey, welcome back. This is Carrie's Always Talking and I'm your host Carrie McNulty. This is episode 12 and this podcast is all about stories and connections. I believe that when people share their stories with one another, it helps to build empathy and humanity and that's something I think we need more of in the world today. You know, I've been doing a little bit of thinking and I've decided that I'm gonna end this first season with 12 episodes and I'm probably gonna come back with more

closer to winter. That said, if you are interested in coming on the podcast, please still do reach out to me. My email is the best way, and that is in the show notes, as always. I'd love to hear from you. even if we record sometime in the next couple of months, eventually the episode will come out when I resume. And if you've been listening and following along this whole time, I do really appreciate you. And I hope that you have enjoyed this first set of episodes that I've done. And today,

for the episode that I'm going to be releasing. I recorded with somebody who I really, really enjoyed speaking with. Her name is Brianna Beasley. She goes by Brie And she is somebody who is living with long COVID. Now I know that COVID can be a polarizing subject and that it is something else that has been made to be more politically charged when really it shouldn't be. is an

illness that is still present to this day. know some people want to believe that it isn't, but I'm sure you know somebody recently who has been sick and likely with COVID and it has some long-term consequences for a subset of people. Brie was kind enough and generous enough to come on and talk about her experience. And as I said, I appreciate that because I know that it costs her a lot in terms of energy and...

As you'll hear in our episode, she speaks about the fact that she really wanted to do this, but she knew that it would take her a couple of days to recover from even speaking for about an hour. And, you know, that's a really tough thing to adapt to and to live with. And so again, I think it was incredibly generous of her to come on and talk about her experience. I think we can learn a lot from her. I know I did in listening to what her situation has been like. COVID affects about 10 % of the adults who are infected with COVID.

And it can look like any number of things because COVID is vascular. That means it can infect and affect any part of our bodies. and so that could mean issues with an ongoing cough. could mean, dysautonomia or pots symptoms. That could mean heart issues. It could mean also many different things. And a lot of the times people will be sick for a number of months and sometimes people will be sick for a number of years.

I am not a doctor. must give that disclaimer. I don't play one on TV. I don't aspire to be one. But this is a topic that not a lot is known about. And even in the medical community, because it is still so new, there are very few people who specialize in treating long COVID. And because it can look like so many different things, oftentimes people who are presenting with symptoms are getting passed around from specialist to specialist and not necessarily having any treatments that can work long term because this is so new.

So if I can do my little part as a vessel to share this information, that's what I want to do. That's what this is about for me, is people telling their stories and being able to share this information because chances are if you yourself have not been impacted by this, you're going to know somebody in your life that has because people are getting sick every day still with COVID. And unfortunately, as I said, there are subset of people who continue to feel

sick and feel unwell for years at a time afterwards. So I want to share all of this information with you. And I hope that even if it's something that you don't necessarily want to hear a lot about, that maybe you'll listen and give it a chance because it could be a very valuable and always I think it's valuable to hear somebody else's experience when it's not the same as yours. In the show notes, I will have some of the resources that Bri talks about. And I will also include the CDC's definition

on their website of what Long COVID is in case anybody wants to learn a little bit more about that. And that'll be there for you to check out. As always, for those that listen, I appreciate it. And I'm going to go ahead and transition us into the discussion with Brie now.

Carrie McNulty (00:01)

Hi, Brie Thank you so much for coming on and joining me and telling us, telling me your story. You're going to be talking to us today about your experience with long COVID. And I know that has been all encompassing in everything you're dealing with in your life. So I am really grateful that you're willing to come on and talk about it. I think it needs a lot more exposure. And I'm glad that you are willing to be one of the people to step up and do that. So thank you.

Brianna (00:03)

Hi.

Yeah, thank you for having me. Thank you for spotlighting an issue that is very much hidden.

Carrie McNulty (00:36)

Yeah. So tell me, give me your professional description of what long COVID is. By the way, neither Brie or I are doctors. But obviously, she's living with this and so is as educated as one can be about her own experience and about what this has been for her. And I have a special interest in this, so I tend to know more than the average person about it. So what have you experienced long COVID to be as opposed to what the very broad definition is right now?

Brianna (01:06)

So my personal definition would be a post -viral illness that encompasses a wide range of symptoms. Right now, people are seeming to be diagnosed with long COVID after just a couple months of sicknesses. And that can include respiratory issues, heart problems, neurological problems. Those can also end after six months. And then you also have people in my group.

Carrie McNulty (01:08)

you

Mm

Mm

Brianna (01:34)

that lean towards more the ME -CFS, which is the acronym myalgic encephalomyelitis, also referred to as chronic fatigue syndrome as an easier label to say, even though it's a little misleading in the name. But there are people in...

my group that have been sick for years and have tried many and many solutions to that. And it encompasses a lot of different symptoms like extreme fatigue, like people cannot even begin to imagine. I read one doctor mentioned that to experience the fatigue that we experienced, you would have to stay up for three days straight.

Carrie McNulty (02:22)

my gosh.

Brianna (02:23)

with no sleep. Yeah, it's insane. So for people, it's hard to say fatigue and tiredness because people are like, yeah, you know what tiredness feels like. And it's not the same. And it doesn't mean that you don't feel tired. You definitely do feel tired. It's just not in the same category. So there is a wide range of symptoms.

Carrie McNulty (02:42)

Yeah. Yeah, for sure. With the symptoms that you have, just so maybe to help people understand a little bit more that the fatigue that you're talking about is not taking a longer nap or taking more naps in the day or sleeping longer does not take care of that, correct? Yeah. OK. Yeah, that would be nice, right? Yeah.

Brianna (03:01)

No, I wish. No, that would be so nice. if only naps could be enjoyable now. They're just stressful now, because I know that I'll wake up and feel exactly the same. Or when I lay down. Yeah.

Carrie McNulty (03:16)

Mmm.

Yeah. So when exactly were you diagnosed? Do you have an idea of that? OK.

Brianna (03:27)

So, I do. I have a pretty solid timeline. Not everyone gets that, you I don't know if you call it a luxury. I got COVID January 2021, and that was right when they were rolling out vaccines for everyone. So was right before I got the vaccine. The vaccines were out, but teachers and me being a sign language interpreter at that time, I did not.

Carrie McNulty (03:33)

Mm -hmm.

Hmm.

Yes.

you

Brianna (03:54)

qualify for that original wave of vaccines. So I got the virus in January and I was sick for about a month. It wasn't too bad. I would say I was pretty sick, but I didn't feel that bad. I would say I've had the flu and it was worse than that.

Carrie McNulty (04:16)

Mm

Brianna (04:19)

But the whole month I was really out of breath and like, man, like just so foggy. And because I had a tendency to get pneumonia in my childhood, I was put on a nebulizer just to prevent that fact. But besides that, it was pretty uneventful. I returned to work. I felt a little weird. Wondered if it was just like my body's still recovering a couple months go by.

I start having more symptoms. So a couple months in, I started having these weird, like, brain buzzing feelings. So feels like there's, like, ants crawling around in my brain. And then those would follow with, like, this intense dissociative state of absolute...

Carrie McNulty (05:00)

Hmm.

Brianna (05:10)

Like, it was almost as if I was passed out, conscious. Like, just sitting there, like my husband would be trying to connect with me, like touch me, and I would just like, nothing. Like, nothing's there. I literally, I can't move. I don't know what's wrong. And so those started happening more and more frequently as the months went by. And then I started having these moments where we would be out walking.

Carrie McNulty (05:22)

Hmm.

Brianna (05:38)

and I'd be like, man, I'm so tired. I need to lay down. And we'd be like outside in the middle of like a dog park and I would just like lay down on the ground, which is not sanitary. So if you can imagine like how tired you would have to be to like, you're like, yep, like this is my best choice right now.

Carrie McNulty (05:46)

Mm.

no, no.

To want to lay down in a dog park, yes.

Brianna (06:02)

And those would just happen and so we would just like okay, I guess this is a new normal and I started looking up like my gosh like did I get narcolepsy from COVID or this cataplexy episode like was researching so many things like how could my symptoms match up?

Carrie McNulty (06:11)

Mmm.

Brianna (06:20)

Couple months later, I have an extremely strong allergic reaction. Half my body was covered in hives. And I went to the hospital and my arms and legs were numb. And I was having trouble walking. And the hospital was like, what's wrong with your legs? And I was like, I don't know. This is not normal for an anaphylaxis reaction. And they were like, no. And I was like, OK. And that was it.

Carrie McNulty (06:46)

And right, also, that's part of the reason why you're there. You're hoping they'll tell you what's wrong with your legs, right?

Brianna (06:50)

Yeah, yeah, let me clear that like ERs are great, but they're great for emergency medicine, not for like anything that I needed in the way of lieu of long COVID of anything. So

Carrie McNulty (06:56)

Right.

Yeah.

Brianna (07:05)

Honestly, still to this day, I've never gotten an answer on what happened that day. I still don't have answers for a lot of symptoms specifically, as many people with long COVID and especially people with chronic fatigue syndrome, which I am, aside, I'm thankful that this...

Carrie McNulty (07:09)

Hmm.

Brianna (07:27)

long COVID experience has shined some light into a disease that is so misunderstood and denied constantly. And I am hopeful that me, along with a lot of other chronic fatigue syndrome sufferers, will receive the help that we finally deserve. So continuing on, I was still working at this time.

Carrie McNulty (07:37)

Mm -hmm.

Right

Brianna (07:56)

and I was starting to experience some sharp chest pain. Like, not just like a achy. It was very sharp and then it would kind of change places but it was all centered around my heart. I would get multiple EKGs with nothing. and I went to one cardiologist who was absolutely terrible. We did a bunch of testing for it, and didn't find anything but when I asked the doctor

Hey, what do you think are the other possibilities of why I could be having this sharp chest pain? And his response is, I don't know, anxiety. Which is like, okay, yeah, first of all, first of all, you know that's not your specialty. And second of all,

Carrie McNulty (08:29)

Hmm.

Of course. Well, you're a young woman. What else could it be? Right? Must just be anxiety.

Brianna (08:49)

Like your job is to think about other possible possibilities. Like we run all the tests. Okay, is there anything else? Okay, so never went back to that.

Carrie McNulty (08:52)

Yes, yes. Yes, it's so normal, by the way, to ask for a differential diagnosis. That's something that they're supposed to be able to provide you with no matter what doctor you're seeing. So you did the right thing by asking that. Unfortunately, it doesn't sound like you got a real answer. Yeah.

Brianna (09:05)

Yes.

Yeah, no. So I have never bent back to that cardiologist, obviously. Not helpful. So I had to take matters into my own hands because the sharp chest pain was quite literally 24 -7 at that point. So I would go into a job and as it would get worse, I would take a break, call the ambulance to get me an EKG just to make sure I'm not having a heart attack.

Carrie McNulty (09:14)

Hmm.

my gosh.

Brianna (09:38)

And then go back from my break and go to work. And I would try not to like make a big deal about it. like, people would be like, did you just call the ambulance? Like, no, I totally didn't. I'm fine. Because as far as everyone was telling me, I'm fine. So after two straight weeks of 24 seven constant sharp chest pain, I decided I needed to take a break from work and

Carrie McNulty (09:55)

Mm -hmm

Brianna (10:09)

I stayed in bed for two weeks. It took two weeks for the chest pain to stop. Two weeks of staying in bed. And then after that, getting out of bed, it was like a wave of vestibular symptoms racked me, which I didn't know at the time. But luckily, around that same time period, I got into contact with

Carrie McNulty (10:11)

Hmm.

Mm.

Brianna (10:36)

three doctors. The first one said there's nothing to do about long COVID. Even if you have it, there's no point. You might have a mental illness. The second doctor said after me telling my story, looked at me in the eyes and said, and what would you like me to do for you? A third doctor said, I can't do anything for you, but I need you to go to a long code clinic. And that was the most helpful thing that I ever received.

Carrie McNulty (10:42)

Mm -hmm.

you

Mm -hmm.

Brianna (11:06)

because it was at the Long COVID clinic that they sent me to a vestibular rehab. I was then diagnosed with essential vestibular disorder. That vestibular therapist said that they had seen many patients like me in my condition that were exhibiting concussion -like symptoms. So it was basically like some type of brain injury.

Carrie McNulty (11:12)

Okay.

Mm -hmm.

Well, right. Yeah, because COVID crosses the blood brain barrier, which is not an easy thing to do, but it does. So when you say vestibular, just so people, they don't understand what that means, what were those symptoms?

Brianna (11:37)

Mm -hmm.

yes. Yeah, that can mean a lot of things. So mainly when we talk about vestibular, people are mainly talking about inner ear problems, balancing problems. We're talking about like our nervous system that connects to the balancing and coordination.

Carrie McNulty (11:55)

Mm

Mm -hmm.

Brianna (12:04)

In my condition, it was kind of the opposite. It was mostly my eyes. So we also have a vestibular system connected to our eyes, which is why, you know, when we close our eyes, it's harder to balance. It's that kind of thing. So mine was not directly any... This is gonna be hard for me to explain because I'm not a doctor, but I wasn't having any...

Carrie McNulty (12:13)

Mm

Yes. Yeah.

Brianna (12:32)

balancing issues in my inner ear. Like my reflexes were all still there. Like if you told me to stand up straight, I could. However, I was very dizzy.

Carrie McNulty (12:34)

Mm -hmm.

Brianna (12:45)

and was all in my eyes, like it felt like it's like this huge burning sensation when I get dizzy. And that's very common apparently in long -COVID sufferers. And so I was diagnosed with a central vestibular disorder, which means it's all in your eyes. And so my inner ear is fine. No problems till this day. Yeah.

Carrie McNulty (13:04)

Okay. Well, that's good, right? Yeah. But still, still confusing, right? Cause it's more complicated. Like you said, it's even harder to explain to people exactly what that means. So harder, I'm guessing to know how to treat it. It's just another one of these symptoms where there's multiple, again, multiple specialists kind of involved that are trying to treat these different symptoms. Yeah.

Brianna (13:12)

Yes.

Yes.

Yes, and I got so lucky being in Dallas at that time, where there was an established long COVID clinic that was run by, I don't know if it was a neurologist or a neurosurgeon, but someone up there in their field that was like, you know what, I'll run the long COVID clinic. Because there's no one else that knows anything about long COVID. There's literally no one.

Carrie McNulty (13:32)

Thank

you

Yeah. And still to this day, unfortunately, most doctors don't even consider it as being a reason for these vastly different symptoms that people are coming in with not connecting the dots that one thing could be the cause of all of this.

Brianna (13:57)

Yeah.

Carrie McNulty (14:11)

different systems of your body having issues all at one time. And you said your experience was you got COVID, you seem to get better. And then a couple months later, all of these symptoms showed up. And I think that's really important because the message around COVID right now is that the acute infection is not a problem. But it's just like a cold, it's whatever, without people realizing that the symptoms of this, the issue is not the acute infection so much as it has been for people in the past. People can get very sick from their acute infection and die.

Brianna (14:31)

Mm

Carrie McNulty (14:42)

More often than not, these symptoms are showing up months later and people aren't putting the two together. They're not realizing it's coming from that initial COVID diagnosis.

Brianna (14:47)

Yes.

Yes, it was very confusing at the beginning, but I think I had that strong connection because I was like, I was not feeling this way last year. And so the only difference could be that I got COVID. And that was easy for me to make that connection, but it is a lot harder for other people. I mean, there are still people that come on to the...

Carrie McNulty (14:53)

Yeah.

Mm -hmm.

Yeah.

Right.

Mm

Brianna (15:14)

Long COVID Support Forums and they're like, hey, do y 'all think this is long COVID? Because the doctors are not up to date and doctors are extremely busy. And so like we are coming together as a community and saying, hey, we're not diagnosing you. We're just saying, I have those symptoms, you have those symptoms, a doctor diagnosed me, they might diagnose you.

Carrie McNulty (15:19)

Hmm.

Yeah. Sure.

Yes. Yeah, or just trying to direct them to who to go to. I feel like the network of go to this doctor, but maybe don't go to that doctor. You might get more help here than you would there. That's so useful. I'm sure a lot of that happens in your community.

Brianna (15:51)

Yes, recently I found another doctor in Dallas, I live in, I don't live in Dallas anymore.

Carrie McNulty (16:00)

Yeah.

Brianna (16:02)

But I recently reconnected with a doctor in Dallas because there is apparently someone who is writing books about long COVID and their theories on what that could be. If anyone wants to check it out, it's Dr. Groysman in Dallas. And it's interesting because very few doctors are even touching the subject, but this doctor seems to be like, this is my special interest now. I'm going to dive into this and

Carrie McNulty (16:12)

Mm -hmm.

Mm.

Yeah.

Brianna (16:32)

if I can have a theory on it. And he does have a strong theory on what the mechanisms are in his mind. There are also other doctors that I wrote down that have a strong mechanism understanding. no. Not here.

Carrie McNulty (16:50)

Yeah.

I mean, we can definitely come back to that. I'm curious if you could tell me. So you alluded to you were working prior to getting diagnosed and that right now you're not living where you were before. So how has life changed for you since you got this diagnosis or even what was life like prior to and the difference now if you want to talk about that?

Brianna (17:17)

good question. Yeah. So I was working full time. I was working full time when I got sick. I was working full time when I was sick. I would just come home completely exhausted. I would have these like, I can only describe as ticking sessions. After every workday, I would come home and it would just be like...

Carrie McNulty (17:37)

Hmm.

Brianna (17:42)

It's not a seizure, but it basically looks like a seizure. And it's just like for 30 minutes. And that was my body, I guess, releasing so much of what was built up throughout the day of working full time. So I was doing that. And then after realizing that I could no longer work, I then...

Carrie McNulty (17:47)

Hmm.

Yeah.

Brianna (18:10)

almost immediately lost my ability to drive because of the dizziness, because of the vestibular symptoms. Every time I would get in the car and try to drive, it would be so overwhelming. Visually, it would get blurry. The room would feel like it's spinning. The car would feel like it's going back when I'm just sitting there. And that's not safe.

Carrie McNulty (18:13)

Hmm.

ooh

No, that's so scary.

Brianna (18:37)

Yeah, and so for the sake of myself and other people on the road, I decided it was unsafe for me to drive anymore, which was severely limiting on my independence. We were in a city where none of our family lived with me and my husband. And so I was not working, staying home, trying to just take care of myself. He was still working full time.

Carrie McNulty (18:47)

Yeah, of course.

Brianna (19:06)

After a while, the depression started kicking in, the isolation, and we ended up moving to Austin and then moving to San Antonio after that, which is where most of my family are because we realized how debilitating my illness was becoming.

and how much help we needed. I was slowly beginning to struggle to care for myself in the ways of showering and in the ways of feeding myself. requires too much energy still to this day to do everything on my own. I do not do all my own cooking or cleaning.

Carrie McNulty (19:54)

Mm

Brianna (19:59)

I do it when I can because I love that independence and I love cooking so much actually. I love finding new recipes and stuff but that is not in my ability right now. So we did have to move in with my in -laws.

Carrie McNulty (20:14)

Yeah.

So you or how old at diagnosis?

Brianna (20:24)

That was...

it's 2024, 2021. I know this seems like a really simple problem but like so bogged down in my brain that like it'll take me a second.

Carrie McNulty (20:33)

meh.

No.

No, think that's, and again, this is the perfect example of how something that you might have known before without a thought is more of a challenge now. So I think it's.

Brianna (20:51)

Yeah, I'm like, okay, my birthday was recently. So before I'm 28 now I was 27. So when I got sick...

Carrie McNulty (20:57)

Mm

to like 24 -ish.

Brianna (21:06)

Yes. Yes.

Carrie McNulty (21:06)

Okay. And so you were living and working independently with your husband and then now we're having to live with family.

Brianna (21:13)

Yes. yes, I, within a year I went from working full -time to being bedbound and having people bring me food and water.

Carrie McNulty (21:19)

Yeah.

Wow, that's such a huge shift. That had to be such a challenge. And as you're still trying to figure out what's going on with you, trying to accept that at the same time had to be, I can't even imagine how overwhelming.

Brianna (21:40)

I don't even think I could describe it like without like breaking down like that was such a stressful time for me but also extremely stressful for my husband who was watching this fast deterioration in the person that he loved the most in the world and

Carrie McNulty (21:46)

Yeah.

Mm -hmm.

Brianna (22:06)

It is so tough for patients, but it is also so tough for caregivers. To watch that and see.

Carrie McNulty (22:12)

Absolutely. Yeah.

Brianna (22:19)

the light literally go out from someone's eyes and just like utter exhaustion and like no hope.

Carrie McNulty (22:27)

And right. And they are helpless to know exactly what to do. They can try the best that they can to support, but there's no indication of when this gets better or if, right? Yeah.

Brianna (22:38)

Exactly. Exactly. No one knew anything. I mean, no one knows anything now. Two years later.

Carrie McNulty (22:43)

Unfortunately, yeah, yeah. Right. And as you said, and kind of as we've alluded to, the reason that you wanted to come on here and the reason I wanted to have you on here is because more needs to be understood about.

long COVID because it isn't going anywhere. Yes, there are people who get better in weeks or months after with their symptoms, but there are also a huge subset of people who continue to struggle years later. And it's not clear if that's going to continue to be a lifelong thing or if at some point that clears up, but the, not knowing that, you know,

I, speaking from my own experience as somebody who's had cancer, yes, that is something that can become chronic that you live with. But initially, if you're diagnosed in an earlier stage, the thought process is you're going to go through your treatment and you can count that down. You know when that's going to end, right? Being in a situation like this, you don't really know what that looks like and you have to adapt. And so my guess is that you are a hugely resilient person who has come up with these ways to adapt to this uncertain.

you know, future of what things are exactly gonna look like. And you've already had to change the picture of what you thought it might be and are trying to move forward from here. So I look at that as a huge resiliency, you know?

Brianna (23:58)

Yes.

Yes.

I think it is those of us that are still kicking and still fighting for a way to live a life. And I specify a life because none of us are thriving.

Carrie McNulty (24:09)

Mm -hmm.

Mm -hmm. Mm -hmm. Yeah.

Brianna (24:26)

We're all in various stages of surviving. One person in particular that anyone who listens to this podcast can go and learn more about instantly is on YouTube, the physics girl. She is the most famous person that

Carrie McNulty (24:29)

Mm

Okay.

Brianna (24:47)

I've come across that is suffering from long COVID and she is in, still to this day for the past couple years, in the same position that I was when I was bed bound. Absolutely, in bed 24 seven, dark room, if not a...

Carrie McNulty (24:50)

Mm

Hmm.

Brianna (25:12)

If not a dark room, then an eye mask. Very, very low stimulus. There is something about this illness that just wreaks havoc on our nervous system and so that we cannot handle any stimulus. And so, and they talk a lot about it. They even did a whole YouTube...

Carrie McNulty (25:16)

Yeah, so very low stimulus. Yeah.

Thank

Brianna (25:37)

live stream to fundraise. They were actually able to fundraise, I think, over $100 ,000 for the foundation. And I'll have to share it with you later so we can include that later.

Carrie McNulty (25:38)

Mmm.

Yeah, yeah, yeah. Give me that info and I'll put that in the show notes, as well as the link to her YouTube page. And then also the, any doctors that you thought were actually helpful that you were going to share that info. I'll put that in the show notes. So we don't have to stress about that. Yes, we don't have to stress about that. I'll put that in at the end.

Brianna (26:04)

yes, that'd be so helpful, yes.

Carrie McNulty (26:10)

You mentioned that there's a lot of different medicines and lot of different treatments that you've tried. What are some of the things that you have to do now? How do you work your life around the treatment that you have to do now? What does that look like?

Brianna (26:21)

Like, what does my treatment look like kind of now?

Carrie McNulty (26:23)

Yeah, so do you have to take a lot of medications? Are there still a lot of doctor's appointments that you're having to go to? Are you kind of at the place where you, OK, these are the things that work enough to keep me functional in a way? How does that look day to day?

Brianna (26:40)

Yes. Yes. So in this past year, I would say things have seen a noticeable improvement. I am not bedbound as much. I would say I still have... Let me see if I can try and put a number on it. I probably still have...

Carrie McNulty (26:50)

good.

Brianna (27:02)

about a third of the days of the month that I stay in bed all day, which is a significant improvement from before. And many of those things are medications. But first, I want to highlight how important I'm going to use a word for it and then I'm going to describe it, pacing.

Carrie McNulty (27:26)

Okay, pacing, okay.

Brianna (27:28)

So pacing as a word can mean a lot of things, but pacing in reference to long COVID and chronic fatigue syndrome, one of the doctors actually from that YouTube live stream mentioned it as it's not necessarily pacing, it's a sacrifice. So pacing is sacrificing. And so when we refer to pacing, we are really analyzing how we feel in our body. For example, after this podcast,

Carrie McNulty (27:32)

Mm

Mm.

Mm -hmm.

Brianna (27:59)

talking for an hour straight I will know that my chest will start hurting I mean it's even starting to hurt right now and so I will know that I need to lay down until I am back in my green zone which is like my current baseline and so pacing is so important and it breaks my heart when new people

Carrie McNulty (28:02)

Yeah.

Hmm.

Yeah.

Brianna (28:23)

are new to this condition and they hear from doctors and from their family members or even just from their inner ableism honestly that they can just push through and be better and that is quite literally the opposite with condition unfortunately. There are so many conditions that are helpful with exercise and this condition is so detrimental to exercise and so

Carrie McNulty (28:32)

Mm -hmm. Yeah.

Brianna (28:50)

a lot of us who are like ambitious people and go -getters, we kind of are the ones that get like really deep in the trenches of bed bound because we think that we can just push through. So that is why I first and foremost want to highlight if anyone is even thinking that they might be suffering with long COVID or chronic fatigue syndrome, that like they listen to their body and trust.

Carrie McNulty (28:53)

Mm -hmm.

Hmm.

Brianna (29:14)

what how they feel and wait until they get back into some kind of baseline or green zone to where they feel at least a little relief from feeling worse because from my experience and others you will get worse and I did get worse at the beginning.

Carrie McNulty (29:15)

Right.

Yeah.

Wow, that sounds like really invaluable advice to people that it's, it's, it's a hard one in our society that, the expectation is that we go, go, go, go, go. And that the more you do, the more you're praised for what you do. So the idea of what you're saying is so powerful because you're saying actually, no, you have to, you have to take many, many, many, many rest breaks and really listen to what your body's telling you and not what everybody else is saying, which is a really hard thing to do. Rest some more. Yeah. Yeah.

Brianna (29:35)

Yes.

Yes.

Yes, if you think you rested enough, you haven't. Yeah.

Carrie McNulty (30:01)

Yeah, I don't know if you I'm guessing you've heard of this and this has been around a long time but the spoon theory and that for people with chronic illnesses that we start the day with a certain number of spoons so if we say like 12 spoons every activity that you do be it have breakfast get dressed take your medicine each of those things takes a spoon and by the time you get to the end of the day your energy level you're usually deficit in terms of the spoons you have left and what you're expected to do so what you're saying is with this it's almost like that theory

Brianna (30:07)

Yes.

Mm

Carrie McNulty (30:29)

on steroids, right? Like, yes, okay.

Brianna (30:31)

Yes, yes, precisely. And if you were to start your day with a certain number of spoons and use all of it, say, I need to do laundry today. I need to cook. I need to clean. That may go through all of your spoons. And then.

Carrie McNulty (30:37)

you

Mm -hmm. Mm -hmm.

Mm -hmm.

Brianna (30:50)

you realize, I need to take the dogs for a walk. If you do not have any more spoons left and you put yourself in a negative spoons, that means you will start tomorrow with less. And so you really have to be, yes, yes. Spoons is actually a really, the spoon theory is the easiest, clearest way to describe that like.

Carrie McNulty (30:57)

Mm

Yeah, your baseline gets lower. Right. OK.

Brianna (31:12)

you pacing yourself is literally sacrificing, okay, what can I take out of my day to day to make sure that I don't make myself worse?

Carrie McNulty (31:18)

Mm

Yes, and so that's where the sacrifice comes in, right? Because you may have an idea of all these things that you want to do or things that people want you to do with them, but you're having to pick and choose, like you said, even doing this podcast, which I'm so grateful that you're doing. And it makes me sad that it's going to cost you so much to do it, you know? But you deciding like, OK, this is what then my weekend looks like, or longer, depending on however long it takes me to get back to my baseline. Yeah.

Brianna (31:27)

Yes.

Yes.

Yes, and it varies. It varies from person to person to like before this would have taken me out for a week. Right now I think this will take me out for maybe two days. So improvements.

Carrie McNulty (31:46)

Mm

Wow.

Yes, improvements, but still so overwhelming, right? And so frustrating when your brain wants you to do more, but your body's like, You know, like, mm -mm. This is not an option. Can't do it. And learning to listen to those limitations is really hard in a society where we value people pushing themselves to the limit all the time as a measure of success. Yeah.

Brianna (32:06)

Mm -hmm. Mm -hmm. Yeah.

Mm -hmm. So after pacing, what has worked for me was mainly getting a solid grasp onto what conditions came out of Long COVID. And for me, that is pots.

Carrie McNulty (32:24)

Mm -hmm.

Mm -hmm.

Brianna (32:40)

and a possible MCAS diagnosis. MCAS is MCAS or mass cell activation syndrome.

Carrie McNulty (32:43)

Okay.

Yeah.

Right.

Brianna (32:51)

It is notoriously hard to diagnose because you have to be tested while you are in a flare -up to have notable higher histamine levels or higher mast cell levels than normal. So that is why I don't have that diagnosis yet, but I have some...

Carrie McNulty (32:58)

Mm -hmm.

Yes.

Right.

Well, the hives initially would give you an indication that you were having histamine dumps and things like that going on. And it sounds similar to an autoimmune disease in that if you're not having an active flare up, if you do the blood work to test that, it doesn't show up. But meanwhile, symptoms can still be present, just not at a high enough level for your body to give what they need for the official diagnosis. Yeah. Yeah.

Brianna (33:14)

Yes. Yes.

Mm -hmm. Yeah, so for me, when I finally went to an amazing cardiologist...

and they diagnosed me with POTS, I was able to be put on a POTS medication, which I went from like going to the doctor's office, I mean, looking like hung over and like I couldn't even look them in the eye to being like this, like I am now, I am able to be present, I am mentally clearer. And so that medication was...

Carrie McNulty (33:39)

Mm -hmm.

Okay.

Yeah.

Brianna (34:03)

significant. And then putting myself on an antihistamine on a daily. I was never someone who had allergies, so that is new for me. I know there's a lot of people who take like a Zyrtec every day. So that has also helped as well as just getting on a really good like B vitamin.

Carrie McNulty (34:03)

Yeah.

Mm -hmm.

Yeah. yeah. I'm a Daily Zyrtec and Flonase girl myself. Yeah.

Mm -hmm.

Brianna (34:31)

as well as a super high fish oil. And the craziest thing that I'm on is I am on 10 grams of salt a day. takes... Yes. I was just laughing with another POTS person last night about how I don't like the taste of pickles. And so getting in my salt intake, I just went with the pills form because I don't like dill pickles.

Carrie McNulty (34:34)

Mm

Okay, well that makes sense for the pots. Yeah.

Mm -hmm.

It's easier. Yeah. It's easier. Too bad you could just drink that juice and be good to go, but you can't do it. Yeah.

Brianna (35:02)

I know

Carrie McNulty (35:09)

Yeah.

Brianna (35:10)

Yeah, that's kind of everything. There are a lot of experimental supplements and experimental drugs that I've tried throughout like LDN. That's a big main one.

Carrie McNulty (35:19)

Mm -hmm. Mm -hmm.

Brianna (35:22)

And I recently got off of it because I had some problems in my labs. And so my doctor wanted to take me off of it to see if that would improve. I'm hoping I can get back on it because it seems to be a little helpful. I would not say it's a significant, huge change, but it does seem to help. And it does seem to help a lot of people recover, which that does happen. Some people have recovered. Side note.

Carrie McNulty (35:33)

Mm.

Hmm.

Yes, yes, yes, definitely. I mean, it is a spectrum, right? And that's again, what makes it, everybody's different with this. So there is no standard protocol for long COVID, right? So it's very hard to know one, if you have it, two, what you need to do to treat it and finding providers that can guide you in that is also hard because your symptoms could literally be anything. Yeah.

Brianna (36:01)

Yes. Yes.

Yeah. Yeah. So I would say that is pretty much all the medications I take. I do take a couple.

herbal medications for migraines that did start after COVID. I do not have them as worse as other people do. So the herbal medications right now are a lifesaver. And I hope to keep it that way.

Carrie McNulty (36:25)

Mm -hmm

enough. Good. Good.

Brianna (36:39)

Current running theory for me is that like we need to take care of our like underlying conditions and I don't even like saying they're underlying conditions because I feel like they literally all are long COVID. But

Carrie McNulty (36:50)

Yeah.

Brianna (36:52)

For example, one thing that I learned from the YouTube live with the physics girl was that she has been bed bound for an extremely long time, longer than normal. And their personal theory is that they cannot get her MCAS, her MCAS under control. They cannot find a diet that does not put her in another flare up. And so in my mind, that made sense to why I was able to escape from that hell of

Carrie McNulty (36:58)

Mm

activate. Okay.

Mm -hmm.

Brianna (37:22)

bed bound is because my MCAS is not that bad. So yes, I would totally agree with that theory of like, can we just manage what we can diagnose? If we can get diagnosed with POTS, can we manage that? Can we get that under control? Can we get the MCAS under control? Yeah.

Carrie McNulty (37:26)

Yeah.

Right. Well, and it's so hard because all of this is dependent on our immune system. And when people get COVID, that's the number one thing that is suppressed and attacked. So it leaves the door open from what I understand. Again, not a doctor here, but you know.

when an immune system is suppressed, that's when autoimmune issues can show up. That's when all kinds of things can start to wreak havoc on your body. And MCAS, I would guess, is connected to your immune system as well, that if that could be underlying for people when they don't have an activated immune system or it becomes overactive because of a COVID diagnosis, that then these symptoms can start and it's a really hard diagnosis to get. And like you said, it's a spectrum. It could be that people have higher allergic reactions to things and it can be as extreme as people

Brianna (38:24)

Mm

Carrie McNulty (38:28)

have to completely eliminate things from their diets in order to try to get this under control. And sometimes they can't. So I think it varies so much. If that is a big part of it, I can understand why it's hard for certain people to achieve a level closer to their baseline.

Brianna (38:47)

Yeah, and there's different doctors. I can touch on that right now since we're talking about that. Dr. David Kaufman is the one that he's one that originally studied HIV. And so he kind of like then leaned into long COVID autoimmune issues. And

Carrie McNulty (39:00)

Mm -hmm.

Yes.

Brianna (39:11)

So I have two doctors right now that I'm gonna talk about. One has a theory on the septad is what he calls it. And the other doctor that I'm gonna refer to in Dallas has a theory on the four causes of, not the four causes, the four main issues that you might be having with long COVID. The first one, I'll talk about the septad by David Kaufman out of...

Carrie McNulty (39:32)

Okay.

Brianna (39:38)

The seven, he says that along COVID and chronic fatigue syndrome patients that he sees have many of these symptoms, have many of these issues in their bodies. One of them being Ehlers -Danlos syndrome or a form of hypermobility. The second one being dysautonomia and POTS, which kind of go hand in hand.

Carrie McNulty (39:56)

Mm -hmm. Mm -hmm.

Mm hmm.

Brianna (40:08)

next one being mast cell activation syndrome or MCAS, which we already talked about both of those. The next one being any chronic infection and one of them being EBV, which is pretty common. It can reactivate.

Carrie McNulty (40:16)

Yeah. Yes. yes. Yes, COVID can do that. It's like a little key that unlocks previous viruses. And that's why we have so many more people getting shingles at such a young age after, you know, because that's chickenpox that lies dormant in your body and then later on can show up as the shingles virus. But that's happening more and more for younger people because, well, we assume COVID because it does that. It reactivates things. Yeah.

Brianna (40:26)

Yep.

yes.

Yeah, so much we don't know.

Carrie McNulty (40:46)

Mm -hmm.

Brianna (40:46)

The next one that he talks about is gastroparesis or a small intestinal bacterial overgrowth. So basically serious gastrointestinal issues. And then the last one being neurological conditions. And he lists out it could be tethered cord syndrome or EGLE syndrome, even cranioscorbic instability. So if you have those, especially if you have them before COVID, you're

Carrie McNulty (40:50)

Mmm.

Yeah.

Mm -hmm.

Yeah.

Brianna (41:15)

probably already going to get, you're probably definitely going to be more susceptible than the average normal person to get long COVID. And then we have the other doctor, Dr. Groysman, who says, okay, if we can heal...

Carrie McNulty (41:23)

Right.

Brianna (41:33)

what you are having in long COVID, one of the four things that I think you are having a problem with.

Okay, so the first one is mitochondrial dysfunction. The second one being gut dysbiosis. The third one being MCAS or histamine problems. And the fourth one being dysautonomia.

If you remember the other ones that I said, there's already two overlaps between the two doctors having those theories. An MCAS, a histamine problem, and the dysautonomia, the POTS problems. So it is interesting to me that there's already doctors out there that have these similar theories. And so we may be getting somewhere. Maybe.

Carrie McNulty (42:04)

Yes.

Mm

Yeah, I mean, that has to feel a little hopeful too that people are doing their own separate research and coming up with the same things that are overlapping, you know? So hopefully figuring out how to get those things under control for people the best they can leads to a better quality of life overall and hopefully a complete at some point abatement of symptoms if that's possible. Yeah.

Brianna (42:28)

Yes.

Yes.

Carrie McNulty (42:42)

So from your perspective, Brie, is there anything else that you want to share about either your experience with long COVID or just about long COVID in general that you really think it's important that people know?

Brianna (42:56)

I think it's really important for people and you know this might be a preaching to the choir kind of thing because people that listen to an educational podcast like this are already going to be open -minded but we really have to keep an open mind and not even an open mind but we really have to withhold that judgment and that prejudice. For example, I use a wheelchair now. I can walk.

Carrie McNulty (43:05)

Right.

Brianna (43:26)

that is very confusing for people to wrap their heads around. People love to point out like, you're a faker. you shouldn't be walking. you're too young to be disabled.

Carrie McNulty (43:29)

You

my goodness. People say this to you.

Brianna (43:41)

They have not said it to my face, but they have said it online, which is very easy and very common. So I ask people to...

Carrie McNulty (43:50)

sure.

Brianna (43:57)

just let disabled people be even if you think they are not disabled. If you see someone parking in a disabled parking lot, has a disabled license plate or a placard and you do not think that they look disabled, let it go. People do not understand the amount of conditions that we do not know that are present.

Carrie McNulty (44:00)

Mm -hmm.

Yeah.

Brianna (44:23)

that in the human body that can debilitate us at a varying level. And one of those labels is called a dynamic disability.

Carrie McNulty (44:33)

Mm -hmm.

Brianna (44:34)

So I believe my disability would be considered a dynamic disability. I would rather not use my wheelchair. So if I have a really good energy day, if I'm not feeling dizzy, if I'm feeling very clear -headed, I will want to go out in the world with just a cane with my husband and go out.

If I go to that same place the next day and use my wheelchair, there is a reason for that. My symptoms are worse. It is not because I am trying to take advantage of the system. First of all, there is no advantage to the system. I am getting no benefits. And so I want people to be aware of that misconception that just hold back.

Carrie McNulty (45:05)

Right. Yes.

Absolutely not.

Brianna (45:28)

save your rage, just let people be, because the amount of people that are faking a disability is much less than you think. And I can say as a disabled person, I would much rather the 1 to 10 percent of people that are faking it get away with it than be harassed as a disabled person that you perceive as not disabled enough.

Carrie McNulty (45:31)

Yes.

Right, right.

Well, right, disabled enough, right? Because certain things, criteria must be met in order for you to be considered that, guess. Society is so strange.

Brianna (46:04)

Yes. Yeah.

Carrie McNulty (46:07)

Because as you said, there's no, you don't feel like you're benefiting in any way, right? This does not feel like a benefit. The fact that you've had to change your whole life, the goals that you had for yourself, the plans, everything has had to change because of this illness. So obviously you do not feel like this has been a benefit to you. And so it's interesting that you bring this up because it's a common theme and what I've been doing in this podcast, which is people can be curious about things, but notice that own curiosity in yourself. You don't have to speak that.

Brianna (46:15)

No.

Carrie McNulty (46:36)

out to a person that you're coming across in public, right? Or if we could just find a way to have more compassion for people in general and understanding that even if somebody is in the position where they might be acting disabled when they're not, there's something probably going on with that person, right? And so why not have some compassion for that as opposed to the judgment that you might feel? Because it's not hurting you or taking anything away from you.

Brianna (46:39)

Mm

Yes.

And more than likely, that person genuinely is disabled, just not in the way that you perceive is enough, like you just said.

Carrie McNulty (47:10)

Exactly. It may not be obvious to you, but that doesn't mean that's not a real or valid experience for somebody. And it's not anybody's responsibility to, in the middle of a grocery store parking lot, explain what's going on in their life. You're just trying to live. You don't, you know.

Brianna (47:16)

Yes.

Yeah. Yeah.

Yeah, I had a couple experiences that I can touch on specifically at the beginning before I got my wheelchair. I was using a cane, but grocery stores were hell.

Carrie McNulty (47:44)

Mm.

Brianna (47:46)

absolute vestibular nightmare. There's so much stimuli, yes, so much stimuli, so much noise, and we have to make choices to get our groceries. And so I would always, yes, so I would always choose to use a scooter, which by the way, I'm a little too light to use. I hope they change the safety restrictions on those seats because I would be hopping up and down.

Carrie McNulty (47:48)

yeah, the lighting, the, yes, yes, yes.

Quickly.

no.

no.

Brianna (48:15)

trying to get it to engage. Anyway, besides the point, I would be using those and sometimes, a lot of the times, they're not charged. So I would try and look for one that's charged and that I could sit in that would work. And so I would have people pass by me and laugh and say things like, are you just messing around? You're just playing around with it? And like...

Carrie McNulty (48:25)

Mm -hmm.

Brianna (48:44)

Even though I have my cane with me, they don't see that at first. And even if I didn't have my cane, just... why do we need to say that? Another instance is I was out in a motorized scooter, walking my dogs with a family member, and this guy pulls up...

Carrie McNulty (48:45)

Mm -hmm. Mm -hmm.

Why? Right, why?

Brianna (49:09)

and rolls down his window and he looks at me and he says, I guess someone didn't feel like walking today.

And I didn't say anything at the time because I was just genuinely flabbergasted, like... What... What are you possibly trying to get out of the situation? So... Just keep those thoughts to yourself. If you genuinely have a question about someone's disability, then first of all, it can't just be the first thing out of your mouth.

Carrie McNulty (49:22)

Alright. Wow.

Bye. Yeah.

Right.

Brianna (49:46)

And second of all, I am more open than most. Anyone can ask me about my disability. One, because I want to bring more awareness to long COVID and the effects that it can have on our body.

But disclaimer, don't go up to disabled people and ask them what happened or what's wrong. That is incredibly invasive. And most people have gotten that question over and over and over and over and over. And I'm sure you can imagine if you were asked the same question every time you went out in public, you would lose your patience a little bit.

Carrie McNulty (50:13)

Yes.

Yes, you would probably not want to be out in public very much.

Every person is different. also, disability doesn't look like any one thing. And it doesn't happen to just anybody of a certain age. And I guess if we're going to bring this, if we're going to tie this up in a little bow at the end, the thing is long COVID can happen to anybody. It can happen at any point after an acute infection. You don't have to be a certain age for that to happen.

Brianna (50:38)

Yes. Yes.

Carrie McNulty (50:57)

and symptoms can look like any number of things. And if we all just keep an open mind about the fact that this is a real thing that people deal with, people are still struggling to find resources. And unfortunately, anybody could be in the position where they're trying to find resources for this. This doesn't discriminate. This is an illness that can happen to anybody. That if we, yeah.

Brianna (51:14)

does not, does not. And the more times that you have COVID, it increases your chances of getting long COVID.

Carrie McNulty (51:22)

Absolutely. Yes. Yes, every time. It makes you more vulnerable. And we're still learning about why. Almost five years out, we're going to continue to learn about, hopefully learn more about why. Hopefully there'll be more doctors like the ones that you mentioned who really want to make this their specialty and really dig into this to figure more out about it.

because that's what we're gonna need. As we as a society continue to get sick over and over again, this could literally be anybody. So trying to come as always from a place of compassion and letting people just live their lives the best way they can live their lives, that's never gonna be the wrong choice.

Brianna (52:00)

gosh and don't ever give them medical or advice no advice no advice no advice hardline no advice

Carrie McNulty (52:02)

yes, yes, I've gotten lots of that. That's fair, that is very fair. Well, I am so grateful that you joined and that you came on and that you are willing to do this and I really appreciate it and I hope that you found it worthwhile too.

And for anybody listening who might be dealing with us or have people in your life who also have long COVID, I hope that you found it helpful. Even if it's something you don't know anything about and you happen to listen to this, I hope that it makes you curious to learn more because it's something that is happening and is continuing to happen and we need more awareness around it. Absolutely.

Brianna (52:45)

Yes. Thank you.

Carrie McNulty (52:47)

You're welcome. Anything you want to leave us with, Brie.

Brianna (52:52)

No, no. Thank you so much for highlighting this issue. I really hope that people give this a listen. I hope I didn't ramble too much. Dig into that curiosity and do some research into organizations that are looking into this.

Carrie McNulty (53:01)

You

Absolutely. Until we meet again next time, everybody be well.