In this solo episode of the Spoonie Ninja Podcast, host Tess (the Spoonie Ninja) addresses the practical, day‑to‑day challenges that arise after a POTS or dysautonomia diagnosis—a gap she calls the "diagnosis gap" where doctors provide a label but no lived‑experience guidance. She offers concrete, lived‑experience strategies for managing the condition, beginning with the fundamentals: consistent hydration, electrolyte balance, and liberal salt intake as structural support for low blood volume. She explains how compression garments work, emphasizing the need for appropriate pressure levels rather than simply “wearing something tight.” Tess then delves into pacing, urging listeners to schedule rest before fatigue sets in and to view pacing as negotiation, not quitting. She discusses shower and temperature management, recommending shower chairs, cool water, fans, and loose clothing to prevent vasodilation‑induced crashes. Brain fog is described as a blood‑flow issue, not a loss of intelligence, and she normalizes its impact on conversation and memory. Throughout, she stresses the dynamic nature of dysautonomia—daily fluctuations in symptoms driven by sleep, stress, hormones, temperature, and infection—encouraging listeners to accept variable limits and practice self‑compassion, rejecting the “perfect patient” ideal. The episode ends with a preview of a future discussion on the emotional grief, identity shifts, and relationship changes that accompany living with a nervous‑system disorder, reinforcing that progress is a loop, not a straight line, and that every small adaptation counts.
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Welcome to the Spoonie Ninja Podcast, Living on Borrowed Spoons. This is a quiet, honest space for living with chronic illness, parenting through it, and finding humor where we can. Hi, I'm Tess. Also known as the Spoonie Ninja. I'm a chronic illness advocate, author, and mom, and I live with multiple chronic conditions. Living on Borrowed Spoons is a space for real conversations about illness, mental health, parenting, relationships, and surviving systems that weren't built for us. You don't need to be strong here, you just need to be human. Thanks for spending your time with me. Now, let's dive into the podcast. Episode 3, POTS and Dysautonomia: Survival Basics the Doctors Don't Hand You. If you've ever been diagnosed with POTS or dysautonomia and then sent home with a pamphlet and a prayer, this episode's for you. Because somewhere between the diagnosis and real life, there's a gap. A big one. And most of us fall straight into it. Here's how it usually goes. You finally get a name for what's happening. Your doctor explains, it's in medical language, and you nod. Then you leave. And when you get home, you realize that no one told you how to live inside this body. They didn't tell you how to grocery shop. Which may seem silly, but those lights in the store are killer when you don't know that. Or shower, or stand in line, or exist upright without your heart trying to escape out of your chest. So you improvise, which is how most of us become experts in our own illness, by necessity. Let's start with the basics. POTS and dysautonomia are not just feeling dizzy. They're nervous system conditions. Which means the system that's responsible for things like your heart rate, your blood pressure, temperature regulation, digestion, fatigue, and brain function, they've all decided to stop following the rules. How your body doesn't transition well from lying to sitting, or from sitting to standing, or from resting to doing literally anything, it's not dramatic. It's mechanical. Here's the first survival truth: you're not lazy. Your body burns more energy just trying to keep you upright than other people burn running errands. Standing is cardio now. That's not a metaphor. That's real. Doctors often tell you, drink more water, eat more salt, wear compression, exercise carefully. And all of which is true, But they don't tell you how to apply that advice in a life that still expects you to function. So let's talk about what actually helps. Hydration is not optional. It's structural support. But water alone is not enough. Electrolytes do matter. Not because it's trendy, but because your blood volume needs help. If hydration feels like a full-time job, that's because it is. Build it into your day. The way other people build in meals. And no, coffee doesn't count. I know, I'm disappointed too. I'm sorry. Salt is not your enemy. If salt helps you feel human, then it's doing its job. Ignore anyone who has lived to tell you otherwise and has not lived in your body. Your nervous system doesn't care about diet disclosure. It cares about stability. Compression is about strategy. Not suffering. You don't get a medal for wearing the tightest thing possible. You wear what helps. And there are definitely garments out there for compression that tell you how much compression it actually has. Yes, that does actually matter. Some days socks help. Some days leggings. Some days it's nothing because your nervous system already hates you. All are valid. Now let's talk about pacing, because this is where people get stuck. POTS does not respond well to pushing through. Let's just say that every time you push, your body takes notes. And it invoices you later, usually at night, or the next day, or during something important. Pacing is not quitting. It's negotiation. Here's something else that no one explains. You have to plan rest before you're exhausted. I know it feels backward, but most of us were raised to rest after effort. But that rule no longer applies. Rest is preventative care now. Showering? Showering's a whole thing in itself. Hot water dilates your blood vessels. Standing is already hard, so yes, shower chairs are not giving up their engineering solution. I fought this one too for a really, really long time, but after I used one for the first time, I decided that I was never going back to standing while showering. Cooling strategies matter too. Fans, cool water, loose clothing, because if your body overheats, it panics. And then everything else follows. Brain fog? That deserves its own mention because it's not just forgetting things. It's losing words mid-sentence. It's forgetting why you walked into a room. You feel slow in conversations that you used to lead. It's not intelligence leaving your body. It's blood flow. You're still in there, I promise. But here's the hardest part to accept. Your limits They may change daily. What worked yesterday might not work today. But that doesn't mean that you're doing it wrong. It means your dysautonomia doesn't run on consistency. You do the best you can with the body that you have that day. That's the assignment. And yes, everything does change day to day. People are going to tell you to listen to your body, which sounds helpful, Until your body's sending mixed signals and screaming in Morse code. Listening doesn't mean obeying every sensation. It means learning your patterns, and that takes time. Be patient with yourself. If you're newly diagnosed and overwhelmed, hear this: you don't have to master this all at once. You learn it in pieces. You do learn to adapt. You learn to adjust, and slowly, Quietly, life does become livable again. It's different, but it's livable. You're not falling apart or failing because your nervous system needs support. You're not weak because standing is hard, and you're not alone in figuring this out. Most of us have learned it by trial and error, and we're still here. There's something I wish that someone had told me early on. You don't have to be the perfect patient. To deserve care. You don't have to track every symptom flawlessly, and you don't have to optimize your life into a spreadsheet. You don't have to explain yourself well to be legitimate. You are allowed to build a life that looks different than the one that you planned. Some days will look like success just standing, and some days look like— Sitting. While other days it may look like you're staying horizontal and choosing not to make things worse, I oftentimes get vertigo and my day is very much spent in bed, not being able to do anything, because if I slightly move, I become so dizzy that I pass out. But none of that is failure. It's just an adaptation, and adaptation is a skill. It's one that you're learning every single day, whether it feels like it or not. I do want to say this clearly: if you've ever wondered why you can't do something one day and you're able to do something the next, it's not all in your head. This condition is dynamic. It responds to sleep, stress, hormones. Temperature, hydrating, infections, emotions, and timing. When I'm stressed out, I will get the worst vertigo, and I will be down for days. You didn't undo your progress. Your nervous system just recalculated. Progress with dysautonomia isn't a straight line, it's a loop. And every time you come back to yourself faster, That counts. If you're listening to this while laying down, good. If you're listening to this while pacing your energy, even better. Take a breath, check in with your body, not to judge it, just to notice it. You're doing the work, even on the quiet days. Yes, rest counts. In the next episode, I want to talk about the emotional side of living with a nervous system condition, the grief, the identity shifts, and how relationships can change when your body has different rules. You don't have to rush. You don't have to catch up. You're already here. I'm glad you're here. Take care of your nervous system, because it's doing its best. Until next time, my amazing warriors, I'm sending you spoons. Sharpen, Or spared, depending on the day. Thank you for being a part of my ninja clan.
