Dystonian futures...

Where Emma discusses dystonia.

Hello and welcome 👋🏻 to the new subscribers! Thank you to some of my long-term besties for your emails, wine contributions, and all-round love.

Not me…although maybe I would feel better rocking a neon pink number!

Well, this week has been fun. «insert excessive sarcasm»

I have had what I now know to be called a dystonia storm and it has been the mother of them. On top of the distortion and pain, it makes me feel nauseous, exhausted and breathe like a steam engine. Apparently, that is due to the excessive lactic acid building up in your system. Told you, f-u-n.

Here’s a quick rundown if you have no idea what dystonia is:

• A continuous or repetitive muscle twisting, spasm or cramp

• Your toes, fingers, hands, neck whole torso, thigh, vocal cords, face etc can twist and curl in unnatural directions

• It bloody hurts

• It can affect one part of your body (focal dystonia), two or more adjacent parts (segmental dystonia), or all parts of your body (general dystonia)

• Ouch.

• Dystonia is a common early symptom of young-onset Parkinson's, but it can appear during any stage of Parkinson's.

• Some Parkinson’s medication can help as can Botox but it is pretty minimal.

• Physio and exercise can help but sometimes they aggravate it.

• Stuff this.

Some days I think it’s the dystonia that’s worse than Parkinson’s although in my case they are linked. The worst affected area for me is my right thigh. When it’s bad the muscles feel like they are ripping away from the bone. It is a burning, screaming thing looking damn close to bursting through my leg as the muscles bulge and twist. Between dystonia twisting on the inside and Parky throwing me into objects on the outside, I sport a pattern of bruises akin to a leopard skin coat.

It’s an absolute ballache when it occurs in the feet making shoes um interesting. It’s hard to determine when dystonia first hit but even as a child I suffered from rigid, stiff hands and unexplained aches and pains. Parkinson’s - dystonia - chicken - egg.

This video helped and I have since adapted tape use for my forearms, hands, thigh, hip and shoulder. Haven’t managed the eyes yet 🤣 I recommend you give it a go if you are at the end of your tether!

Now, dear readers, I am going to state my most overused theory here, again. Which is:

Stress and anxiety make it worse.

At this rate, we will be tattooing this across my forehead. But it’s true!! It is no coincidence that after last week’s mad tackle to get university applications in and knock sense into my daughter’s school, I am laid down with twisty-bitch-pain.

Sometimes it doesn’t matter how much lavender I douse myself in or how many chamomile tea shots I line up, the stress remains. Buddha and all his calm didn’t have to deal with teenagers freaking out.

Needless to say, working and functioning are very hard if not impossible when dystonia strikes. It didn’t help when I ran the figures of sending a kid to university, given I can barely work and get no financial support. I better get selling Emma’s Tattoo Stress Slogans™️ about stress being the bringer of All. Bad. Things.

However I did survive, sort of. Mostly due to staying as warm as possible. We had snow again this week which could also be a contributing factor as the cold is my nemesis. (That and socks, of course) I couldn’t quite manage a bath as I felt once in I may never get out even with the strength of R’s 6ft5 giantness. Ginger tea helped the nausea and sheer bloody will kept me from having an outright tantrum.

Like many of you, I am loath to freak my family out with my symptoms but when dystonia hits¹ you rarely have much choice to hide it. It’s tough when you see the frustration in their eyes knowing there isn’t much they can do to help. Just as well I have swearing and dark humour!

Ok my lovelies, I’m off to twist & roll my way back to bed.

with love

E xx

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Read More

The brilliant

jennifersullivan

has written about it here in this funny, heartwarming and very real post.

This UK charity website has lots of info: https://www.dystonia.org.uk/

1. A sort ‘50’s B Movie: When Dystonia Hits - The terror of its dread embrace...the awesome agony of its cramping ...threatens all mankind!