ðŠI create resources to help people adapt to living with chronic illness so they can thrive.
ð The job no one tells you you're taking on
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Hi Reader, I've been keeping a mental tally lately. The phone calls. The portal messages that never got a real answer. The forms that ask for information I already gave someone else last month. I don't write any of it down anymore. I just carry it, the way you carry a phone number you've dialed so many times it's stopped feeling like information and started feeling like a reflex. Here's the thing I keep coming back to: none of this shows up on a calendar as "work." There's no meeting called "spend forty minutes being your own records department." There's just a phone call that takes longer than it should, and a night where you lie awake trying to remember whether you told the new doctor about the reaction you had two years ago, or just meant to. So if you've hung up the phone after "just" a call to the pharmacy and felt like you ran a marathon nobody will ever know about, I want you to hear this clearly: that's not an overreaction. You're doing unpaid coordination work that a case manager would be paid a salary to do, on top of managing a body that's already asking for less. The exhaustion is the accurate cost of a job you never applied for. This week's post goes deeper into why that job is so heavy, and what actually helps when you're the only one doing it. Read: The Exhausting Math of Managing Your Own Chronic Illness Careâ Sending you rest wherever you can find it this week. |
April Smith | The Thriving Spoonie
ðŠI create resources to help people adapt to living with chronic illness so they can thrive.
Hi Reader, Somewhere in my first year or two after diagnosis, I caught my own reflection and had this small, strange thought: I don't totally recognize this person. Not dramatic. Just a quiet double-take. Patience running differently. Energy running differently. Even my sense of humor felt rewired somehow, in a way I couldn't fully explain to anyone who hadn't lived it. For a while I tried to fix it, like enough effort could get me back to exactly who I was before. What actually helped was...
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...