Navigating Summer with Chronic Illness: Nicole's Journey
Nicole lives with multiple chronic illnesses, including adrenal insufficiency, POTS/dysautonomia, Ehlers-Danlos Syndrome, Mast Cell Activation, Lupus, and Pulmonary Hypertension. Each day brings unpredictability, requiring her to find the right balance between embracing life and managing her health. Summer, once her favorite season, now poses significant challenges due to her heat intolerance and temperature instability. Yet, Nicole has found ways to adapt and still enjoy the season. Continue reading to learn more about her strategies and experiences.
From Summer Lover to Heat Intolerance
I used to love everything about summer—the warmth, the long days, and spending time outdoors. But my dysautonomia has completely changed how I experience this season. Now, with significant heat intolerance and temperature instability, I have to be extremely cautious. What once felt like a refreshing day in the sun can quickly turn into a battle against symptoms like a racing heart, pre-syncope, nausea, weakness, and even increased pain. It’s frustrating to feel like my body is betraying me in a season I once loved, but I’ve had to adapt and rethink how I spend my summer days.
Staying Cool and Prepared
Over the years, I’ve learned that being proactive is the best way to manage my symptoms during the hot months. Hydration has become non-negotiable for me, so I always carry an electrolyte drink wherever I go. I’ve also learned to be strategic about where I go and what I do. I never leave the house without my walker or a chair, so I can sit and rest whenever I need to. An umbrella and ice packs have also become my summer essentials. They help me stay cool, especially when I’m out in the sun for extended periods. It’s all about planning ahead and having the right tools with me. These adjustments have made a big difference in how I handle the heat and manage my conditions.
Finding Joy in New Activities
This summer, I decided to get creative with how I enjoy time with my family, especially my son. We set up a small pool in our yard, and I put a lawn chair right in the water. It’s been a game-changer for me. I can comfortably sit in the pool to stay cool while my son swims and has fun. Watching him play sports is one of my greatest joys, so I’ve made it a priority to save my energy—or "spoons"—so I can tolerate being outside during his games as often as possible. On those unbearably hot days, we find fun indoor activities instead. We’ll visit the library, explore a museum, or just enjoy a good board game at home. It’s all about finding ways to be present with my family while still taking care of myself.
Embracing Adaptation
I know firsthand how hard it is to give up your favorite activities because of chronic illness. It can feel like losing a piece of yourself. But I’ve also discovered that there’s a certain joy in finding new ways to participate and stay engaged with life. My advice? Don’t be afraid to use whatever tools you need to make things work for you. Whether it’s taking breaks from the sun, finding cool places to retreat to, or just planning ahead to make sure you’re comfortable, it’s all okay. The important thing is to be kind to yourself, adapt as you need, and enjoy what you can. Summer may look different for me now, but I’ve learned to embrace those changes and find happiness in new places.
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