Bored of the Rings 🧙🏻‍♂️💍

Where Emma bores the pants off folk

Hello, my darlings! Thank you as always for your support that has been filling my inbox to full this week…love ya x

Ever feel that your illness is boring other people?

Let’s set aside how un-fucking-believably tiresome it is for us - just for a moment - and focus on our loved ones, friends, colleagues, mailman, and that random homeless chap with the cute dog.

Do your loved one’s eyes glaze over at the mere mention of Parkinson’s? Or to put it another way…

‘Why does everything have to be about Parkinson’s with you?!‘ Yelled my frustrated teen a few months ago.

Well, that’s because every-fucking-thing is in some way coloured, shaped and filtered through the P word. EVERYTHING. My entire way of being is now hostage to it.

It’s not that I don’t try not to bring it up - I try really hard. But then they only need to look at me and it’s there, the rictus grin of PD ghoulishly staring at them. It’s the creepy birthday clown that haunts the memory of your 8th birthday. It’s the humiliation burning in your cheeks when you puked on the girl you fancied dress. It’s the shame of being accused of drinking because you are slurring your words.

This PD filter makes everything grainy, with blackened edges and it’s damned lonely. It leeches through you and out of you on the things you love best.

It’s right and proper my children are growing into their own lives. It’s right they aren’t at home so much because they are out in the world exploring, having fun and becoming fabulous young women. But I wonder in my dark parky paranoia if I am also driving them out. What 15 & 19 year old wants to spend time with a degrading, creaking parky-mum-bird?

My friends are slipping into just seeing them a few times a year, their eyes shelter a pity that masks fear. We are all just a diagnosis from catastrophe and I am the physical representation of that right now, lurking about in their nightmares.

I am in people’s way - in their heads and physically under their feet.

I get it. It’s incredibly frustrating to go into a room and find a slow, clumsy person carrying out a task at a tenth of the speed. You can just reach over me and grab the thing, or stand behind expecting me to register quickly that you need to get past. I know it’s unreasonable to ask everyone to slow down to my speed. It’s the same with decisions. I know I need to act on them quicker. And inside my head, they are happening but the communication and action are slower than waiting for an avocado to ripen.

It’s easier to retreat. If I stay quiet and let everyone get their stuff done then no one gets frustrated…right?

Except me.

I’m inclined to call frustration a symptom of Parkinson’s now. In reality, it gets into all the things we try. You name it, it’ll be frustrating to achieve.

This is why it’s all so balls-achingly boring. To you, to me and to everyone around us. But talking about it, sharing and trying to fathom out solutions is the only way we can cope. To become un-boring we need to shine light into every corner of this nasty little disease, getting to know it means we can do something about it!

I’d love your thoughts…hit reply or comment.

with love

Emma xxx

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Three things this week:

• Never Stop Learning
  the most recent post about mental health is stuffed with good advice…nothing you don’t know but maybe, like me, you forget!

• Have trouble making coffee with your tremors? Check this out

• I have been chastised for referring to this as ‘hilarious’ so I suggest you don’t find it funny. at. all…Adventures in Parkinsonsland