Vermont-based physical therapist Katy Gamelin talks with CDCI’s very own Jackie Feiss about her experience of having POTS: Postural Orthostatic Tachycardia Syndrome.

Jackie shares how she copes with this largely unknown chronic illness that affects all major body systems, along with the symptoms that led to her diagnosis, what it was like trying to get an accurate diagnosis, and some of the life hacks she’s developed in order to manage her life as an educational consultant, wife, and mom.

“So, what three things am I going to prioritize today? I call it my ‘energy envelope’. And each day I might have a different amount of energy that I can give, based on my symptoms. So I really have to plan, you know? I wake up in the morning, and it’s like, ‘What can I do today?’

…It’s not that I want to be flaky, it’s just sometimes I can’t. I physically can’t. And that’s a hard pill to swallow.”

https://youtu.be/nIL7seKJ14U

A full transcript follows below.

Katy Gamelin: So, hi everyone. This is Green Mountain Disability Stories and I am joined here today with Jackie Feiss. I will be your host. My name is Katy Gamelin. And just a brief description of myself before we turn it over to Jackie. I’m a physical therapist. I work at a clinic, outpatient clinic called Essex Physical Therapy, and that’s in Essex, Vermont. And I am a 50-year-old white female. I have probably shoulder-length blonde hair, wearing a blue shirt with a black sweater, and I’m sitting in my home office to record this right now. So let’s turn it over to Jackie and get to know Jackie a little bit.

Jackie: Hey everyone. My name is Jackie Feiss. I am a 39-year-old white woman with brown hair that’s about shoulder-length. I’m wearing a black blouse and a pink sweater, drinking my cup of tea this morning. And I have a funky pair of glasses that are blue and brown.

Katy: Nice.

Jackie: I work at the Center on Disability and Community Inclusion as an educational consultant with the Vermont I-Team. And I know Katy because she’s my PT and she’s wonderful.

Katy: So let’s talk about your work, what your life looks like on a day-to-day basis.

Jackie: Yeah, so I live in Jericho, Vermont, and I am married, and I’ve got two little kids, two little girls who are nine and six. And my day to day looks drastically different based on how I’m feeling, but I am visiting schools, and seeing kids and teachers, and working on best practices and inclusive education. And I’m at home. Sometimes I am skiing, I am biking, I am outside. I am swimming in a pool or in the lake. Just being in nature is what our family enjoys doing. And on this side, I teach a dance class. I teach it now in an adapted way, but I’m able to do that again, which I really enjoy.

Katy: That’s awesome. That’s great. So let’s talk a little bit about, you mentioned how your day-to-day looks different based on how you’re feeling. And that is because of what we’re here to talk about a little bit today. We’re going to talk about POTS as most people know it. So let’s talk a little bit about that and your experience with that disability.

Jackie: Yeah. So I got diagnosed with POTS four years ago, and it was a life-altering diagnosis. Prior to having POTS, I had limitless energy. It was like, all right, I’m a mom of two young kids. I am married, in the thick of it. I’m working. And you just go, go, go, go, go. And you don’t even think about it. And you might be really tired at the end of the day, put your legs up and you’re just done.

But you don’t have to manage and think about,

“Okay, I can only manage three tasks in a day before I need to lay down. So what three things am I going to prioritize today?”

I call it my energy envelope. And each day I might have a different amount of energy that I can give based on my symptoms. And so I really have to plan. I wake up in the morning and it’s like,

“What can I do today and what do I have to give up and in order to be able to work and what can I do for my family while managing my work?”

So it’s definitely something that is ever present, always on my mind, and something that I really have had to learn to manage over the last four years. I’ll say it affects every body system for me.

And so it might present as light sensitivity, sound sensitivity, smell sensitivity. It might look like blurry vision, or I often tell Katy that it looks like there’s snow falling in front of my eyes. And that can be really disorienting when you are in public trying to navigate a very bright space.

Sometimes it looks like pain, chest pain, feeling like I’m having a heart attack, but I’m not having a heart attack. Just pressure and pain. Sometimes it looks like tingling in my fingertips, numbness. It might look like a tremor. Sometimes a big tremor, sometimes a not noticeable tremor. It looks like my heart is speeding up really fast.

So I had COVID a few weeks ago and my resting heart rate was about 120. And then you get up from there and it gets up to 200, and it can be very uncomfortable. It feels like you’re running a marathon while you’re trying to do simple everyday tasks like brush your teeth.

Oh geez, I can go on. But it’s digestion. It’s getting a really big belly sometimes. I look like I’m nine months pregnant. And then the next morning it’s shrunk again. It affects everything that I do. Sometimes I slur my speech or I have brain fog and I can’t remember the word, and I’ll describe it. “It’s on the roof, and it has electricity, and it lights your house, and it makes your power bill less money.”

And my husband’s like, “Oh, what are you trying to say right now?” So it’s getting creative too.

Katy: Yeah, definitely. And you brought up just talking about how many different symptoms you have and all the systems that it impacts. I feel like that really touches on, that’s an important piece to note about dysautonomia in general. That’s part of the issue with these dysautonomias and also autoimmune disorders, that everyone looks different, no two patients look the same. And even within one patient you might have from hour to hour, even minute to minute, you might have a really different presentation.

And I think that that’s such a key important thing. I’m going to say this out loud right away. I think that’s such a key important thing for healthcare practitioners to recognize because I think that’s part, and we’re going to get into this more I think down the road here in this interview. But I think that’s one of the challenges in the healthcare side of things is really understanding how much a diagnosis like this can encompass.

I feel like we should take a step back and talk a little bit about what POTS is, just define it a little bit. Is that something that you feel like you’re comfortable doing?

Jackie: Yeah, you want to do it together? I feel like between us, we could probably do it.

Katy: We could do it together. Yeah.

Jackie: So POTS is postural orthostatic tachycardia syndrome, which Katy said earlier, and it affects your autonomic nervous system. So all of the things that you regulate without thinking about it. Your blinking your blood pressure, your heart rate, your hormones, your digestion, all the things that your body does without you thinking about it.

Katy: We often say autonomic is like automatic. That’s how you learn it. That’s how you can remember it really easily. The automatic system or the autonomic system.

Jackie: And it’s typically treated by a cardiologist or a neurologist are the two people who tend to know more about it, but it is considered a neurological disorder. One that really impacts your, well, all your body systems. We talked about primarily, it’s diagnosed by an increase in your heart rate of 30 beats per minute change when you change position. So from laying down to sitting up, sitting up to standing up is really the only measure that they use to diagnose it, even though it affects everything.

Katy: Yup. And then 40 beats in kids. So if you’re under 18, technically in pediatrics, it’s 40 beats per minute for the change. Yeah, and I think the mechanics behind that, in case that’s helpful for people to know, is just that the autonomic system, the blood vessels should contract. I do not have POTS, when I stand up, my blood vessels automa...