ðŠI create resources to help people adapt to living with chronic illness so they can thrive.
ðĐš The appointment prep that actually saves your energy
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Hi Reader, If you've ever walked out of an appointment more tired than when you walked in, even though "all you did" was talk for twenty minutes, this one's for you. Advocating for yourself in an appointment isn't one task. It's tracking your symptoms, reading the room, watching your tone, and deciding in real time what's worth pushing on, all while your body may already be running on empty. That's a lot of invisible work that never shows up as "work" from the outside, which is part of why the crash afterward can feel so disproportionate to what actually happened in the room. New on the blog, I get into how to lower that cost without doing less advocating. The short version: decide your one non-negotiable before you walk in, write your main point out word-for-word instead of relying on finding it on the spot, and build recovery time into your day afterward the same way you'd budget for the appointment itself. If you're also neurodivergent, I touch on how sensory load and processing stack on top of all of it too. Read the full post here: Chronic Illness Appointments: How to Advocate for Yourself Without Burning Outâ A little news of mine, just in time for Disability Pride Month!ðĪâĪïļððĪðð I recently had the honor of contributing to Beloved as We Are, a new book from Skinner House Books/UUA about disability inclusion and belonging in faith communities. It dives into things a lot of us know all too well: non-apparent illness, masking, ableism, and what it actually takes to feel welcomed rather than just tolerated. Even if you're not part of a Unitarian Universalist congregation (or any congregation), I think you'll recognize a lot of yourself in these pages. If you want to check it out (or know someone who'd appreciate it), you can find it here (I get no payment from this; it was a labor of love): Beloved as We Are ââ Take care of yourself this week, |
April Smith | The Thriving Spoonie
ðŠI create resources to help people adapt to living with chronic illness so they can thrive.
Hey Reader, Some days the routine just isn't happening. Pain's louder than usual, brain fog's thick, or there's no reason at all, just that heavy exhaustion that tells you today's going to look different. I used to try to push through those days anyway. It never worked. I'd end up more burned out, in more pain, and further behind than if I'd just adjusted in the first place. So I stopped. Now I've got three versions of my routine ready to go, depending on what the day actually gives me, and a...
Hi Reader, I hope your August is treating you kindly, because mine has been a lot lately. Between my husband's work schedule shifting around him lately, our community volunteer commitments ramping up for fall, and my own Tuesday choir practice, dinner has become the one thing I genuinely don't have extra energy left for by the time evening rolls around. And that's before my GI issues decide to flare and toss the whole plan out anyway. So this month, I stopped trying to plan meals and started...
Hi Reader, I want to tell you about a morning recently that didn't go anything like it was supposed to. I'd had a flare bad enough that I ended up calling my husband home from work. Pain and nausea that just wouldn't let up, my body sweating and shivering through it while my nervous system tried to sort itself out. Not fun. And for a few days after, my normal morning routine, the one I actually rely on, meds before food, food before coffee, a slow unhurried shower, just didn't happen. At all....