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 f...

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