Bees-ness š
Where Emma is a busy bee.
Hello, you delightful lot! Thank you so much for all the love and encouragement about the directory - we are up to nearly 80 entriesā¦keep āem coming, please!
What am I on about now?! I am building a directory/hub thingy for Parkinsonās people.
Itās the resource you wish youād had access to when first diagnosed. You know, the type of info that the medical folks donāt know or tell you. A place where you read, watch, and hear stories from other Parkyās. Itās crammed with humour, reassurance, raw honesty and LOVEātons of the stuff.
In a week or two, there will even be a handbook to go alongside. š¤
Of course, none of this happens without youā¦so pop over sign up, submit your stories, pages etc and SHARE the hell out of it!
Anyway. I might have gone a little manic.
When there is a modicum of dopamine available then all guns will blaze!
Will I collapse in a fatigued heap? Will every bit of my body scream with neuralgic burning pain? Will I lose the ability to do anything other than drool into my nice new jumper?
Yep.
Do I give a shit?
Not when the dopamine is running.
I know Iāll pay, but itās that āgrab it while you canā effect we get when you are rationed. Itās one of the cruelest parts of chronic illness especially in Parkinsonās.
In these moments, I want to stamp my foot toddler style and scream āItās not FAIR!ā Because it bloody isnāt. I donāt subscribe to the well get over it, life isnāt fair bullshit. Life by its very definition is abundant and non-judgmental. Itās us who applies the false deserving/undeserving nonsense.
My brain just didnāt get the memo on abundance. Somewhere my cells bought into the scarcity mindset or guilt-ed themselves into not allowing the full-fat version of dopamine. Dicks.
However, despite the shortage and the pain. I keep trying to over-abund (š¤·š¼āāļø)
Am I the only one? Please tell me that Iām not! Hit reply or comment.
So as not to weary you I shall keep this very short today. I have a few books to edit and finish writing, a podcast to record, a directory to wrangle, and a family to tend toā¦
Or I might just pick up a good book1 and pour a nice glass of wine.
with love
E xxx
My current reading list:
Orbital - Samantha Harvey | Seriously beautiful writing.
Secrets of a Devon Wood: My Nature Journal - Jo Brown |Illustrated diary.
An Autobiography by Anthony Trollope | Love a bit of Trollope
Ten Arguments For Deleting Your Social Media Accounts Right Now
Jaron Lanier | A re-read but even more pertinent.
I just came to your brilliant concept of "dopamine points" that you so casually interjected; that is a spot-on way to characterize day to day living with PD. It's like you're at the arcade playing Skee-Ball and it's spitting out tickets and you need to decide what you're going to trade them in for today. Will it be the army guy? Fake tattoo? A wad of bubblegum? Or do you try to save them up so you can get an even better prize? The whoopie cushion? A box of four crayons? Sweet tarts? We literally have to deliberate how best to spend the limited energy that we have available each and every day. I feel another post brewing... Thanks for the muse!
I typically have but one or two points during the day when the entirety of my systems are in sufficient alignment to do something other than rock out to dyskinesia or sit like a stone waiting for my meds to kick in. Those times are a precious commodity, and I often struggle deciding what to use it for. Mercifully, my partner understands this and supports me if I choose the brief bit of drumming that I can manage before my dopamine stores dry up over, say, taking out the trash or unloading the dishwasher. Or to write so I can make sense of all this. These periods are far to fleeting and far too brief.