Sometimes hypopara wins, and that’s OK

Recently, I was asked how I maintain a writing career with a chronic illness. My answer was that I ignore a lot of writing advice. Writing every day, maintaining a strict routine, and putting writing first are the most common tips thrown around. But for a chronically ill person, that advice doesn’t work.

Listening to my body is my top priority every single day. It’s not about letting my hypoparathyroidism, also known as hypopara, “win.” It’s about acknowledging that writing will always take second place behind my health, and learning to forgive myself when my best-laid plans are postponed.

My hypopara symptoms often include muscle weakness and spasms, fatigue, a foggy head, and anxiety — which is exhausting in and of itself. Despite being stable and having sustained energy on my treatment, Yorvipath (palopegteriparatide), I’m still at about 50% of my healthy spouse’s energy level on a good day. He can work, then play with our nieces and nephews, make dinner, clean the kitchen, and still go for a run and have shower. Meanwhile, I can manage two or maybe three of these tasks — though never running — and I’m done for the rest of the day, with fatigue and an aching body.

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My work happens in bursts, when I have enough energy to type. I started this column at midnight and woke up the following morning at 7 a.m. to finish it. When I schedule deadlines, I squeeze my writing goals around multiple weekly doctor appointments and daily tasks that can’t be ignored. I shift plans around to make sure I have a full day of rest every week.

With all of that said, sometimes hypopara still wins against the best-laid plans.

I’ve been writing columns nearly every week since my first one in February, as well as writing a book. Despite wearing braces and going to physical therapy and the chiropractor every week, and massage every other, my arms and hands are struggling to keep up. Now that I have my dream literary agent, I’m facing the pressure of trying to figure out how to write both columns and books consistently if I can’t type without pain.

Over the weekend, I practiced writing a short story using the Dictate feature in Microsoft Word. Dictate is a talk-to-text tool that allows me to speak my sentences out loud and transposes them into a document. I struggle with using dictation, since writing usually involves me meditating into the scene and writing it as it plays out in my head. When I’m speaking my text, I have to remain aware and keep myself at surface level so I can edit in real time, since the margin of error is significant. It’s harder to tuck in emotional punches and recurring themes when I can’t sink into my feelings while working.

It turns out there’s a solution for this: practice.

Despite internally kicking and screaming that I didn’t want to practice, I forced myself to sit at my laptop and spend hours running a story in my head until I was comfortable enough to speak it out loud. By some miracle, I managed to knock out 4,000 words by the end of the day. My biggest edits after the first draft were correcting homonyms and names. When two of my friends read the story, they said I nailed it.

I didn’t, however, have the same success with this column. Instead, I’m typing it on my phone, which is only a temporary solution. My arms and hands are still aching and weak. I’ve gotten to the point where I’m struggling to hold my hair dryer and wash dishes. As often happens with a chronic illness, I need to rest and then find a new way forward — which, in this case, means practicing talk-to-text ad nauseam. I hope to get better at enunciating, as well as storytelling, while speaking.

In the meantime, I’m going to take a few weeks off from writing, including these columns, to rest my body. Hopefully when I return, I’ll have made headway on a new writing routine that doesn’t cause my hypopara symptoms to flare as much. While my disease may have won this battle, I’m determined to win the war.

Note: Hypoparathyroidism News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.