Mussel Fatigue

Where Emma ponders PD

Hello you delightful souls. I thought I’d pop out an extra letter this week - ‘cos I loves ya. Hello to all the new faces here - be warned sometimes I’m whimsical and go off reservation. Enjoy!

There’s a weird thing that happens when you live with something like Parkinson’s. At first, you’re hungry for words. Your own, other people’s. You hoover up every forum post, every wobbly blog entry, every shaky TED talk delivered by someone who’s now a yoga teacher and definitely not bitter about it. You underline stuff in books like it matters. You bookmark articles. You screenshot quotes. You become a bloody collector of PD-flavoured insight.

But after a while?

Bloody hell. You’re full. Beyond full. You’ve gorged on Parkinson’s content like it’s your favourite chocolate—only now it’s melted down your front and you’re one more inspirational quote away from punching a mindfulness app.

Because it gets exhausting. Not just the disease (although, obviously, that too. Fucking knackered, thanks for asking). But the talking about it. The writing. The constant cycling through grief and anger and grief again. The repeated explaining of things you’d rather just not explain. The performance of it.

And the worst bit? You start to bore yourself.

You reread something you wrote a year ago and think, “Jings¹, get a grip love.” Or you draft a heartfelt caption and then delete it because who actually wants this today? You try to pivot, write something else—something lighter—and still end up referencing dopamine like it’s a co-star in your tragicomic one-woman show.

Don’t get me wrong. It matters. Storytelling helps people feel seen. It helps us rage and cry and laugh without hurling cutlery. But you can’t live exclusively in the theatre of your own illness without occasionally wanting to set fire to the stage and run screaming into the sea.

Sometimes I don’t want to write about it. Or read about it. Or think about it. I want to write about something stupid. Like soup. Or seaweed. Or the man I saw trying to walk a rabbit on a lead.

Sometimes I just want to be—not as “someone with Parkinson’s” but as someone who also exists in the world outside the disease-shaped lens.

Because the truth is, if I keep eating this chocolate, I’m going to throw up. And not in a dignified, cinematic way. In a violent, feral, why-is-it-in-my-hair kind of way.

So, here’s to breaks. To silence. To writing about literally anything else for a bit. Parkinson’s will still be here when I get back. The bastard’s not going anywhere.

with love

E xx

P.S. Don’t worry I’ll be back on Thursday with more about PD 😂

1. jings

/dʒɪŋz/

exclamation

INFORMAL•SCOTTISH

1. used to express surprise.