Twist & Sprout

Where Emma gets in a twist

Hello lovelies! Still working away at the studio creating art…lots of art! Check it out if you fancy: Emma’s Art

I want to talk dystonia.

I’ve been caught in what the professionals charmingly call a “dystonia storm”—which, for the uninitiated, is like being possessed by a furious, muscle-twisting poltergeist with a grudge.

This one? An absolute masterpiece. My right thigh was the epicentre of rage, doing its best impression of a python mid-meal. It twisted, screamed, and bulged like it was auditioning for a horror film. I half expected it to burst through my jeans, alien-style.

Let’s break it down for those playing catch-up:

What is dystonia?

• Muscles spasm, twist, and cramp like they’ve lost the plot

• It can hit your toes, fingers, thighs, face, vocal cords... basically, if you’ve got a muscle, it's fair game

• It hurts (like, invent-new-swear-words level pain)

• Can be localised or decide to throw a full-body rave

• Common in young-onset Parkinson’s. Also, its own little nightmare

• Meds and Botox might help. Physio might help. Or they might just irritate it and make it worse. FUN.

For me, it’s often in my right thigh, though honestly, any body part can get involved when it feels spicy. At its worst, it feels like my muscles are trying to rip free from my bones. Yes, that delightful.

Also: breathing like a steam engine, nausea, and the kind of fatigue that makes sitting upright feel like a full-body workout. Why? Apparently lactic acid. Which I now hate with a passion.

And because Parkinson’s likes to get in on the action too, I’m basically being attacked from the inside and shoved into furniture on the outside. My bruises are now a fashion statement. Leopard print is in, right?

Shoes? Hilarious concept. Ever tried putting shoes on feet that curl like dying spiders? Dystonia makes footwear a full-contact sport.

I’ve probably had this lurking since childhood. I was the kid with weirdly stiff hands and mystery pains. Classic Parkinson’s + Dystonia = Chicken/Egg situation.

I found this video that helped with taping (no, not the hostage kind, though it feels close). I’ve now got tape on my forearms, thighs, shoulder, and hip. Haven’t figured out how to tape my eyeballs yet, but give it time. Highly recommend trying it if you’re desperate (aka, most of us).

And now, for my most-repeated life truth (drumroll):
Stress makes it worse.
Yes, yes, we’ve all heard it. But I swear it needs tattooed on my forehead at this point.

Also, for those wondering how one works through this: You don’t. It’s like trying to do admin while being tased in the thigh.

So, how did I survive?

• Warmth.

• Ginger tea.

• Rage-fuelled willpower.

• Swearing.

• Dark humour. (Nature’s coping mechanism.)

I try not to scare the people around me, but dystonia doesn’t exactly tap gently on the shoulder. It slaps you across the room and invites everyone to watch.

With love, bruises, and gritted teeth,
E xx