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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.”
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 automatically because of my autonomic system contract, and it prevents my blood pressure from dropping really low or prevents the pooling of my blood down below my heart.
And in people who have difficulties with our autonomic system in this way, that doesn’t happen. Those vasoconstrictions, they just don’t work. I shouldn’t say vasoconstrictions, I should say artery constrictions don’t work. And you get a lot of pooling down below the heart. And so that’s part of what, the heart has to work really hard to bring that heart rate back up to try to pull the blood back up towards your brain, which is one of the reasons why they use the heart rate to really figure out that and make that diagnosis. So I feel like that’s just helpful because maybe there are people who don’t know much about POTS.
So we talked a little about what your everyday experiences, and what types of symptoms you have, and how much it impacts you. I’m just curious, I wanted to ask for everyone involved, what causes POTS? Some people talk about that or ask, might be thinking about that rather. What caused your POTS to kick in?
Jackie: Well, it’s totally a mystery. So there’s several ways that you can get POTS. One is hormonal changes. So a lot of people get POTS right around the time that they become a young woman, because nine out of 10 times, it’s a woman that gets POTS or girls. So hormonal changes can cause it, or pregnancy. Getting a concussion can cause it. Having a large major surgery can cause it. Something about the anesthesia or just the changes. No one’s exactly sure.
Concussion, surgery. Sometimes it can be just a big life stressor, something huge that’s happened to you, although that is more rare than some of the other subtypes. And then the biggest one, I think where a lot of people get POTS is they get something like Covid and they become long haulers and develop POTS. And there’s a huge overlap between long Covid and POTS, and the symptoms there. So an infection.
And for me in particular, all of those things were true except for… Well, I guess life stressor too, because I got it during COVID. So I had a surgery, a little tiny foot surgery. And one week later I woke up and was just never the same. But I had recently had a concussion. I had recently had a baby, the world had just shut down, so we were trying to work from home with our two little kids. So who knows? But right after surgery is when it came on for me.
Katy: Yeah. And that’s what I was wondering if you felt like the surgery was kind of like the straw that broke the camel’s back, so to speak, for your autonomic system. Yeah, it seemed that way history wise. Yeah. Yeah. I think that one of the things that I feel like is interesting about Covid that’s happened is that I feel like it has started to shed some light on things that had been obviously pre-existing around POTS, some of the, EDS, things like that. But now we’re really seeing a lot of people having more difficulties with those. Or especially in the world of POTS, you’re having people diagnosed for the first time. So it’s just really shedding a lot of light, and it’s really bringing it a little bit more to the forefront, which I think is a good thing. I mean, it’s unfortunate that that’s what it took to have more awareness, but I do feel like at least there’s more awareness coming because of that.
Jackie: Oh yeah. I remember four years ago while I was trying to get diagnosed, I would go visit my primary care physician or someone within that office as he was off caring for Covid patients. Every week for six months, I would go in, and I understand the system, and I was determined. I had these two little kids and I was crawling around my house, unable to participate. My dad took time off to come move in with us and help care-take. I couldn’t do anything, and I would just take myself to my doctor’s office. And I would have to take driving breaks and put my legs up. And I had no idea why. And I was just sure that I was dying, just sure that no one could figure it out. I took myself to the ER multiple times. Nobody had a clue, just like, “Lady, these symptoms are not connected. What are you even talking about? Could you just pick one of these symptoms, please, and we’ll go with that today?”
And it took my next door neighbor’s dad who lived in Massachusetts and a FaceTime call where he talked to me, bless his heart, for two hours, and I told him everything. And at the end of the two hours, he was like, “You have something called POTS and you need to go see this kind of doctor and they’ll be able to help you.”
And unfortunately, I know this podcast is specific to Vermont. One of the really tricky things about being medically complicated is that we’re a small little state and we cannot support all of the people that have all of these types of illnesses here in our state. So my care team really consists of you Katy, who knows about POTS in the state of Vermont. And then outside of Vermont, I travel, sounds ridiculous, but I travel all the way to Arizona, to the Mayo Clinic to receive good care. And I have to do that on a yearly basis and head out to Arizona. And without that care team there, things would be much harder for me. So they manage my care there because it can’t be managed here in Vermont.
Katy: Yeah. And that’s one of the things I wanted to talk about was just what has been your experience in Vermont about having, with a diagnosis like POTS. And I know firsthand for you that it’s been very difficult.
Jackie: Yeah, I mean, I feel like I should add… So I have POTS, and that’s the primary thing we’re going to chat about today. But I feel like I should add what I have in addition just to make it really clear to people.
So I also have something called pelvic congestion syndrome, which is basically, my veins were narrowed inside of my pelvic region and causing blood to back up there. And it was really adding to my POTS symptoms. So I actually have a stent placed in my left iliac vein to help the blood pass through. It was 98% blocked, something like that.
I have autonomic neuropathy. I had cancer on my right eye, so I have reconstructed right eye. I have an aneurysm in my right leg. We don’t know why. I have some sort of connective tissue disease that we’re in the process of trying to figure out, possibly MCAS. I have some symptoms of that, which is called mast cell activation disorder. And then I don’t make enough carbon dioxide in my body so it can cause hyperventilation. So I have to do a lot of breathing work every day to keep my body regulated with its normal breath that everybody else doesn’t have to think about.
All of these things are sister disorders. They go together and they’re commonly seen as comorbid. (I don’t think I can say that word, comorbidities for folks.)
But when you have this cluster and you’re trying to figure it out, you really need specialists to be able to tease it apart to say,
“Well geez, you don’t have any of the risk factors for someone for an aneurysm, and you’re pretty young, and everyone else that has it is an 85-year-old man plus. So let’s figure that out.”
And our team here in Vermont just isn’t able to do that for me right now.
I’ll add though that since my diagnosis when I used to say POTS four years ago, no one knew what I was talking about, but you Katy, and just a few other people. And now when I go to the doctor’s office, I will say that folks seem to have heard of it because of COVID and Long COVID. They still might not know how to treat it, but they have heard of it. And so that’s progress. And the diagnostic delay was seven years to eight years, and I think it’s going down. I don’t want to say exact, I think it’s maybe five and a half or six years now.
Katy: Specifically for POTS?
Jackie: For POTS, for a POTS diagnosis. So long diagnostic delays.
Katy: For sure, in Vermont specifically. Yeah. So let’s talk a little bit about, well, let me ask this question since we’re talking about Vermont healthcare as far as just POTS is concerned. If you had anything to say, if you wanted to say something to the medical community at large here, do you have any advice as far as where do we begin for doing better with, well, let’s just stay with POTS, specifically POTS. Where would you start with that?
Jackie: So that’s a great question and I would ask you the same one, because I’m so curious. I think that a lot of times, the symptoms of POTS can make doctors think this person is anxious. And we now know, there is enough research that POTS does not come from an anxiety disorder. POTS is not an anxiety disorder. I will say sometimes if I feel like I’m having a heart attack, and I can’t breathe, and I’m grasping for air, and at the same time I can’t get up because if I get up, I’m going to pass out and I’m crawling to the bathroom, those symptoms might make me feel a little anxious. But POTS in itself is not an anxiety disorder.
But when you walk into a doctor’s office and you look like a healthy 39-year-old woman who can mask her symptoms well. So I come in and I’m dressed, I am showered, I have makeup on sometimes, and I look healthy. And I walk into a doctor’s office and I talk about some of the symptoms that I’m experiencing. I often get someone slaps me on the leg and says, “Oh honey, why don’t you take a week off work? Go drink a glass of wine, relax.”
And what I want to say to those doctors is listen to those patients, listen to their experiences. I have far better things to do than going and visiting a doctor all the time. And when I’m there, if you rule everything else out, maybe it is anxiety, and I’m happy that we’re talking about anxiety. I feel like that was ignored for far too long. But it should be only diagnosed as an anxiety disorder if everything else is ruled out and not be, “I have no idea what this is, and so I’m going to label this person with anxiety.” And I think oftentimes, these chronic health conditions are young women who look healthy, and they shouldn’t have to prove that they feel sick.
Katy: Yeah, I agree with that.
Jackie: What would you add to that?
Katy: I would add, so it’s basically what you just said, but I think there’s four pillars. If I were to get real specific, I think there’s four pillars. And the very first pillar is that really, I think as medical professionals, we need to do a better job at listening and trusting our patients. If you have someone sitting in front of you that is complaining about symptoms, start with believing that those are the symptoms that they’re actually experiencing. And it’s not just in their head. Because I do find so many of my patients will come back from a doctor’s visit and say, “I think my doctor thinks I’m crazy,” Or, “My doctor kind of alluded to this is all in my head,” or, “I was in the emergency department and they just sent me home and said there’s really nothing wrong with me. I must be anxious.” Just like what you just said. The amount of patients that I see in the clinic that say,
“The doctors think I’m crazy!”
I can’t tell you how many times I hear that. So I think it’s listening and then trusting that the experience that they’re having is the experience that they’re having.
Then I feel like education. I feel like we could just do such a better job educating our doctors, our upcoming doctors, and anyone in the medical field I should say about these, we’ll just group together these silent illnesses where people look really healthy, but they’re not doing well on the inside for whatever reason. So autonomic disorders, autoimmune disorders, things like that that don’t always appear like someone’s sick. And then in addition to that, even neurodivergence. That needs to also be brought into that mix for sure.
And then the other piece is access, because I think we really need to increase our access in Vermont. Those are the three, I feel like the big, big things that really need to happen. And I think really if we were to educate doctors, I think if we were to have better ability to hear a subjective report and really believe their patients, I think that we would already get better access by those two pieces.
Jackie: I think it’s all of those things 100%. But I also think it’s okay to say, “I don’t know. I’m sorry this is happening to you. I don’t understand it. I’m not sure why. Let’s get you to someone who can help you. I know of these bigger medical centers that have people who have expertise in this.” It’s something like there’s only 70 doctors in the United States who specialize in dysautonomia or autonomic nervous disorders, and they’re very hard to find.
In fact, I was just looking for one. And the waiting time is one year to get in to go see those doctors, and it’s because there’s such a shortage of them. And so I’m doing my best to access things that I can find online. I go to Dysautonomia International’s recorded webinars, and I listen to those experts talk and I learn. I probably have spent thousands of hours watching webinars trying to help myself, because really the closest autonomic expert to us is in Boston.
Katy: Yeah. So with that said, I think that leads us really well into, I think we should talk a little bit about, what have you found that works well for you? Let’s talk about some strategies. There are some good, tried and true things in relationship to POTS that I feel like everyone should know. And then there’s some cool hack things that I feel like you might be able to share with us. So I feel like we should talk about some tried and true basics, and then some of the cool hack things that you know.
Jackie: Yeah, so the basics are salt and water because people with POTS have a lower blood volume, and so you want to build your blood volume. It’s like if you had a water bottle and you had it sideways, all the water would be at the bottom. And when you lift it up, the water’s not touching the top. And so you try really hard with salt and water together to be able to fill that water bottle all the way to the top. And that would be the equivalent of enough blood reaching your brain.
A lot of the symptoms of POTS are because not enough blood is reaching your brain. So salt with water is huge. Compression, ideally compression underneath. Whatever you’re wearing all the way up through your abdomen is the best. Socks help a little bit. And you want it to be a little bit tough to get into it, but I find for me personally, I’ll wear them with fidelity if I wear Spanx and that works for me.
And then exercise. And that’s the hardest part I think. I mean, I went from being a very fit human who enjoyed going on long mountain bike rides or skiing for a full day to not being able to walk.
And so what I found was going through this exercise routine, which is called the Levine protocol. The first three months, you get worse, not better, and you use all your energy for a whole day in 10 minutes or less of working out. And it was the hardest thing I think I’ve ever done in my life. And so I paired it with something funny to bring some humor to it. So I watched Schitt’s Creek while I went through the entire Levine protocol because if you don’t laugh, you cry.
Katy: Yeah, totally. I don’t think I knew that. That’s great. I love Schitt’s Creek.
Jackie: Those are the tried and true first line of defense. And then there’s medicines. So I take propranolol, which is a beta blocker, and it really lowers my heart rate to make it manageable for me to function. And when I get sick, I might need more than on a day that I’m feeling fine.
I think changing positions, there’s lots of things that your PT could help you with around position changes to teach your body to be able to go from laying down to sitting up, sitting up to standing in a way that’s more methodical than the average person so that you could eliminate some of those things.
So I’ll give you an example. When I’m laying down on my couch at night watching TV with my husband, if I go from laying down to sitting up and then I go walk directly up the staircase, my heart rate will reach 200. I will be really uncomfortable and I’ll sit and do deep breathing exercises for a long period of time.
But if I know that the show is coming to an end and I have not fallen asleep, then I will sit up. And I might even walk around the first floor, get myself a drink of water, and just regulate my body to being upright for several minutes before I try to do that staircase. And on a really bad day, I like to crawl up the stairs or [inaudible 00:26:36] yeah. I think those are the tried and true things.
Katy: Yeah, for sure. I think you covered that really well actually. Yeah. It’s special. I feel like you have tricks.
Jackie: I think one of the biggest complaints that POTS patients talk about is air hunker. It’s something that happens to me frequently is just this feeling like you can’t breathe, but when you check your oxygen, you’re at 100. And there’s a lot of research actually this year going into why, why do people with POTS have air hunger? And there’s a lot of guesses as to why that’s happening, but there’s no, “This is why this is happening,” yet.
But one of the primary research articles that I read recently is about low carbon dioxide in your body and how that can, I don’t know how, but for whatever reason, that is directly connected to air hunger. So I have these airborne tablets that are just the airbornes that put in your drink if you’re feeling sick. And if you break them and you bite them a few times, which would be something you would want to chat with your doctor about, but you can breathe over the carbon dioxide, and it has the same effect as breathing into a paper bag when you’re hyperventilating. And it gives you back that carbon dioxide that your body is lacking. And oftentimes, that air hunger sensation goes away.
And sometimes I’ll notice I just start yawning and I can’t stop, and 20 minutes later I’m still yawning and I’m like, “I don’t have enough carbon dioxide right now,” and I’ll do one of the airborne supplements and get that carbon dioxide back. So that’s always with me wherever I go is just a little bottle of airbornes.
Katy: Yeah, that’s a great one. That’s a really good trick.
Jackie: Katy comes to my house every other week for home PT. And when Katy is with me, we often do some craniosacral work. And it is amazing. After a few weeks of not seeing Katy, I have these snowflakes in front of my eyes and it just looks like it’s snowing all the time, and things are a little blurry. And Katy will come in and she sort of puts her fingers behind my scalp in a particular place. And it’s gentle. It doesn’t hurt. And oftentimes by the end of that session, it’s like the veil gets lifted and everything is clear.
I will say a lot of people with POTS are also hypermobile, and I am hypermobile. And so I often can’t feel myself in space. And so I might be leaning this way and Katy will say, “Hey, did you know you’re crooked right now?” And so really working with a physical therapist to align my body, to train my body, to make sure I’m not injuring my body has been the one consistent thing over the last four years that has made a huge difference in my ability to function and function without a tremendous amount of pain. So thanks, Katy.
Katy: Oh, you’re so welcome. Oh my gosh, that’s great. You just made my day. That’s nice. Yeah, and I think there’s more and more PTs. I feel like PTs are definitely… I think if people were watching and they’re like, “I feel like I want a PT, that might be a great resource.” I think there’s a lot of physical therapists that are kind of on the cutting edge of these types of things. We’re seeing a lot of Long COVID, and we certainly see a lot of connective tissue disorder things because it comes out so much in the physical. There’s so much physical, right? Someone who’s hypermobile, obviously they have dislocating joints or subluxing joints and pain, so it’s not uncommon for them to go to a physical therapist. So I feel like we’re seeing a lot of that. I saw we collectively as physical therapists. So that’s a good place. That’s always a good resource to try. If people haven’t tried that, I think that that’s a good option.
I want to ask a little bit about your job. I feel like you work already, so you are already working with the I-Team with the Vermont I-Team and working with children with disabilities. And I am just curious. I don’t know if we’ve ever really talked about this, but I’m just curious how… We talked a little bit about how that, it can impact your job because it does sometimes impact whether or not you go in the field or whether or not you do more online meetings and things like that. I’m just curious how your own disability has impacted or informed your work.
Jackie: Yeah. Well, I think I’m just about the luckiest human alive to be working at the Center on Disability and Community Inclusion and on the I-Team and develop a disability while working for this particular organization. It was just such a gift. So the first six months, I had no idea what was happening and I could not sit up. And nobody batted an eye, just, “Okay great. Work from your bed.” And I would run IEP meetings in a laying down position with my camera off.
And as we figured out what it was, my colleagues without me asking went and Googled it, looked at all of the accommodations, sent me accommodation lists, just put into place:
“All right, Jackie’s going to be in the beginning part of our meeting today. We’re going to do anything that involves her first so that she can go rest.”
They just made it possible for me to keep working.
And then I started to figure out as… And this is all happening by the way, during COVID lockdown. I think it would’ve been different had we not been stuck at home working. Then all of a sudden I wouldn’t have been able to go in the field and maybe that wouldn’t have worked.
But the timing of how all of this landed the first full year of me having POTS, we were home, working from home. So in that way, the timing was kind of a blessing. And then I started to figure out that my symptoms were, for the most part, cyclical, revolving around my [menstrual] cycle. And so now I can sit down and make my own schedule for the most part. So I can schedule myself in the field at schools during the part of my month where I feel capable, and I’m able to drive, and I can go to schools.
What that looks like is still hard.
When I’m at a school, the lights bother me, the sounds bother me, the smells bother me. So I have to really show up prepared. I might be wearing a baseball cap or glasses that are really not fashion-forward. They’re bright orange and heinous looking, but I wear them. It might look like I have a fan with me to cool me off because I turn bright red. And a lot of people use air freshener-like scents that trigger what I call a mast cell reaction where my whole face turns bright red and I feel like I have the flu. So when I’m out in the field, I have to prepare for that. I always have to have those things with me. Might mean I use a walker or I use a cane, or if I’m feeling good, I don’t need those things.
And then on the weeks that are lower weeks where I have more symptom load, I tend to work from home, and I’m able to do that and have virtual meetings with folks in schools. And then sometimes, it’s a nice combination balance that I’m still learning. I get excited. I want to go do three schools in a day. And I know that at the end of that day, I’m not going to have much left to be able to give to my family. And so I prepare for that. I know next Monday, I’m going to be at three schools for the day.
So I have a frozen dinner that I just picked up from Richmond Community Kitchen, and I’ll thaw it on Sunday night so that on Monday, I just have to stick it in the oven or my husband can just stick it in the oven.
And I use my energy planning or my energy envelope to say, “Okay, if I’m going to be going to schools this week, what can’t I do?” Well, I don’t want to go grocery shopping, so I have my groceries delivered. And I use my resources within my community to support planning and budgeting my energy.
Katy: That’s great. And it’s kind of like you use the word ‘energy envelope’, and some people call it the spoon theory, if anyone’s ever heard of that. Right? It’s kind the same thing where you only have so much energy during the day. You only have so much energy for the whole day. How many spoons do you have for a day, and how are you going to use those, or how much is it in your energy envelope? And how can you use that so that you’re not completely putting yourself behind the next day? Because once you’re out, you’re out. Yeah, you’re done.
Jackie: The last thing I’ll say too is I think it’s about, for me, it was a big journey of letting go. I am a planner. I love to plan. I would plan weeks ahead of time, and I would be so excited to know all of the fun things that I’m doing. And I would tell my kids about, “We’re going to go do this weekend, and then this, and then this.” And I really can’t do that anymore. I have to go with how I’m feeling in the moment.
And I was so excited. I took my daughter to go get her hair done this weekend, and we were at the hair salon for the very first time together, and I was feeling miserable. I just felt terrible. And I keep playing this thing in my mind, “I can do anything for 10 seconds. Here I go, I’m doing it.” And I just kept that playing in my mind quietly while we were at the hair salon.
But other days, I’m still feeling good at the end of part one of our adventure. Great. Let’s go on to part two. And so not saying ahead of time, “Yeah, we’re going to go out and get our hair done and get ice cream,” but really letting that be a game-time decision.
Katy: Yeah, that’s a really good point actually. I bet that was a hard thing to transition, because that’s kind of who you were, and then that’s a big piece of what you had to change. I bet yeah, that’s hard.
Jackie: There’s power in letting go.
Katy: For sure. Absolutely. Do you feel like you show up at work differently as far as just not so much with regard to your disability, but in relation to your clients, I should say? I bet that has given a totally new viewpoint.
Jackie: I will say yes. I have several folks that I work with that are questioning if they have a POTS diagnosis. And there is particularly between hypermobility spectrum disorders or Ehlers-Danlos syndrome and autism, there’s a big correlation that is being studied right now.
And also, the autonomic nervous system and the sights, the sounds, the smells are something that has always affected many of my students that are on the spectrum. And I have this feeling of maybe this person can’t tell you that the lights are bothering them. Maybe they can’t tell you why they’re taking off their shoes, because it is physically painful to have those shoes on, but let’s just work with what they’re showing us. They’re showing us that it’s too loud, they’re showing us that it’s too smelly or whatever it is.
And I did not understand how painful lights could feel in particular. Lights pierce my eyeballs, and they hurt. For a long time, my husband actually wore a headlamp in our house while he was trying to grade his math papers because I could not have the lights on. We just lived in the darkness for two years. So it really gave me a new perspective on wow, this really hurts. And we have to really respect that it hurts and not teach you to tolerate it, but what can we do to accommodate it for you?
Katy: That’s great. And you were probably already doing that to some degree, but you have this next level of compassion and understanding, a little glimpse of understanding of that. That’s awesome. One of the things I feel like I want to say before we move into anything else is just that I think it’s important to note your journey where, because people have heard you having, now you’re teaching dance, and you can ski sometimes, and you can go for walks outside, and you’re working sometimes in the field and sometimes at home. And those things are hard and they’re an effort. You have to consider your energy envelope.
But that’s where you are now. And where you started from was you literally couldn’t sit up, you couldn’t walk. You were crawling around, you couldn’t tolerate light.
And the only reason I want to just point out that spectrum is because I feel like you’re a good example if someone is hearing this when they’re in the beginning stages, and it’s really hard. I think it’s really a great, just to see how you can evolve, and it can improve, and there are things you can do to improve your situation, and to have a little hope to getting stronger and better. And I feel like that’s just an important note to make sure everyone’s catching that piece, because it has been a massive journey for you over the course of the four-
Jackie: And Kate, I think that that’s true for so many people with these particular constellation of chronic illnesses is over time, things get less scary. Yesterday, I was in a meeting and my chest felt like it was going to, I don’t know, break. It hurt so bad. And rather than focusing on it, “What am I experiencing right now? What’s wrong?” I’m calm about it now. I’m not freaked out anymore.
And so I’m able to just take a deep breath in and be like, “I’m in pain right now. Maybe in an hour from now, I won’t be anymore.” And you learn, you learn how much energy you have. And it takes time. There’s no magic bullet here, but over time, my life has evolved to be just as beautiful as it has always been. And would I wish this on someone? No, I would not. But now that I have it, this is just life. And I’m grateful for every day, and I am so excited when I can go do fun things, both little things, little adventures like bath time with glow sticks for my kids or big adventures going to the local fair this weekend. So I think it’s just about where you are in the journey and knowing that this particular journey takes time, and learning, and patience, but that you’ll get there over time.
Katy: Yeah, that’s great. I feel like that’s such a good message. And then I just want to ask you, because we talked a lot about your I-Team work, and clearly you have educated yourself. You’re very informed about your diagnosis and have a great understanding. You also are doing some coaching as far as chronic illness and things like that. So can we talk a little bit about that as well?
Jackie: I just feel like this journey is really unique when you have a chronic health condition that’s invisible. And it really helps to talk to other people who have experienced it. And I’ve had a lot of really giving, amazing people who have POTS, who I’ve reached out to and have graciously just given their time to me to have a conversation, to support me with tips and tricks that work for them, to give me hope, to problem solve with me. Because there are so few doctors, and you can’t call your doctor on speed dial, a lot of this community just supports each other and raises each other up. And I want to do that for other people.
And so right now, just on the side, as people reach out to me, I’m doing a little bit of health coaching. It doesn’t have to be around POTS, but just chronic illness in particular, and just supporting folks to find those resources that they need in their community, and taking things one step at a time.
Katy: Yeah, that’s great. I think that’s really exciting. I think we really need that here. And I agree. I think what I see so much is that really, it’s the community helping each other really figure this whole thing out just because we’re struggling in the medical community here in Vermont. So great. This was great conversation. Is there anything else that you want everyone to know? Is there, yeah.
Jackie: I wrote down some notes, and the last thing that I wrote down that I didn’t say, and I want folks to know this, is it can feel really uncomfortable for people in the community to know what to do or how to help people that are living with this invisible illness. And for the people who are living with it, there’s so many times that you’re questioned that you want folks to know,
“I’m sick, I’m sick, I’m sick. Just because I’m having a good day, doesn’t mean that I’m all better. And it doesn’t mean this is going to go away. This is a forever thing.”
And it’s this weird place that you’re in where you’re like,
“I don’t want to have to prove that I’m sick, but I also want people to talk to me about other things that don’t have to do with my illness.”
So just, I think for folks that are trying to understand and support someone who is living with any of these types of invisible illnesses, you don’t need to say, I’m so glad you’re doing so much better now. Things seem so much better for you.” Or making comments about how you perceive their progress, because the progress is going to ebb and flow. And for me in particular, it’s ebbed and flowed in a nice upward trajectory, but there are days that it doesn’t feel that way. And then there are days that it totally feels that way.
So just acknowledging like, “Hey, things seem good today. Yay, that’s exciting.” Rather than making blanket statements about, “Oh, you must be fine now.” I think that’s an important thing to know.
Katy: Yeah, I think that’s a really good thing to know. And yeah, actually, you brought up a really good point. I actually had this on my notes and I’d forgotten to ask, but about allies, POTS allies. I mean, you just gave a really good suggestion there. Is there anything else? I’m sure there are people who are listening to this that don’t maybe have POTS, but they’re allies of people who do. Is there anything you feel like would be helpful for them to know outside of that? Anything specific outside of just recognizing that, just looking, taking a day by day, and not making the blanket statements?
Jackie: I think I’ve been so fortunate with all the people in my life that have really stepped up for me since I’ve had POTS. I had folks that would come over, and pick me up off the ground, and put me in a chair when I couldn’t get myself up. And just being there for me, and just being okay with living within this realm of, “Okay, we’re going to make plans. We’re going to say that we’re going to go out for Thai food on Thursday. And if that doesn’t work for you or something comes up and you’re not feeling good enough, we’ll reschedule. Don’t worry about it.”
Because 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. So I have a lot of friends who will be like, “Oh, you’re not feeling good enough to go out? Let me come to you.” Or just the flexibility of, “Let’s plan. We’re going to hang out on Thursday, and if that means we’re going to lay down and watch TV together, or we’re going to go out to dinner, who cares? We’ll figure it out on Thursday.” And those are the people who live in the trenches with me who I just couldn’t live without.
Katy: Yeah. That’s awesome. I love that. That’s a really good message I feel like for allies to hear. And just remember, it’s not because they don’t want to hang out with you. Right? It has nothing to do with you. They may not just may not feel up to it. Yeah. That’s great. Well, I’m so glad. This was great conversation. I loved this.
Jackie: Thank you so much for doing this, Katy. I really wanted to do this with someone who knew me, and knew me well, and has been a part of my journey, and I’m so glad you were able to do this today. Thank you so much.
Katy: It’s an honor that you asked me, honestly. It really was. I really appreciate it. Yeah, thank you. Okay.
Jackie: All right. Sign off.
Katy: Signing off.