Dear Dairy 🥛🐄
Thank you for the welcome-back emails and messages, seems I was missed. Shucks, you lot. 🥰
Some of 2023 was spent pretending I don’t have Parkinson’s - yeah, that is a thing. I thought I would attempt to document some of that experience which I shall now inflict on you.
Sometime in June ‘23
Sunday Evening (post a few glasses of wine) - Despite promising myself at the beginning of the year I was going to try to ignore Mr P and resolutely IGNORE it completely, here we are in June, with PD unignored. Urg.
Ok. C’mon Emma! This week is The Week - PD Be Gone.
Monday - wipeout. Stuck in bed with crippling dystonia and bed-shaking tremors.
Tuesday - Alarm 630am. Checks sleep monitor. Oh goody, 1 hr 17 mins sleep. But that’s ok, I push through. On way to shower trip over dog. Feel guilty and spend 20 mins on floor giving her cuddles and tummy rubs. Lose feeling in legs, fail to stand straight for few hours. Post shower spend 30 mins sitting on side of bed contemplating how to put on socks after 20,000 attempts. Rest of day a litany of similarly restrictive and frustrating occurrences. Accept that maybe today I do have PD. Swear, pour wine and write diary. Bed.
Wednesday, Thursday, Friday - No idea what happened but no sleep, wild dystonia1 and why does everything hurt?
Saturday - Thank the Lord it’s Saturday. Not that the weekend makes blasted PD go away - it adheres not to the working man’s agenda.
Rinse & Repeat for a few weeks.
Another Sunday Evening (post a few glasses of wine) - OK, let’s try that again. No Parkinson’s here.
Monday - Oh shit, shit, shit. We are two weeks away from a family reunion and I’ve still got damn PD.
OK, so we can conclude that this experiment didn’t cure me. But as I became more used to thinking less about having PD, I think I was able to be less stressed. It stopped dominating my every thought.
There is often a vortex of negative thinking around having a chronic illness. We are so involved in the management of the physicality of our conditions, our emotional landscape becomes muddy and exhausted. In my case, this was exacerbated by writing and talking about Parkinson’s.
Like all things, I needed a break. It turns out you can’t really ‘get away’ from a chronic illness but you can refresh your emotional reaction and approach.
It helped I had a busy summer and despite the fallout of symptoms, my mental state improved. I have been painting far more and taking the usual step back from the news. I do need more time in nature but given we are under some snow that might have to wait!
There is of course much more to say about last year. It was a tough one for me. Lots of changes, endings and not many beginnings. That bothered me for a while but now I am more comfortable with the lightness of less.
I will continue to write and chatter about this bloody annoying disease but intending to move on to other topics once I hit the ol’ send button on this.
with love
E xx
P.S. Let me know your thoughts about your experiences with an overload of Parkinson’s info, thinking and obsessing.
Wild Dystonia sounds rather like a ballad rock cover band who have finally got it together and released a demo of their original work. Track 1: No Sleep - followed by the more popular Track 3: Why Does Everything Hurt? 🤘🏻
As always you lighten the day...Such a clever thing you are at turning all that hellishness into funny lines for us noble band to recognise laugh at.
Having written noble band a mad flight of fancy bought this to mind
"And [those] in England now a-bed
Shall think themselves accursed they were [not one of us]"
Touched by the depths and courage of this "Lots of changes, endings and not many beginnings. That bothered me for a while but now I am more comfortable with the lightness of less."
Onwards and upwards (dpwnwards/sideways etc)
I raise a glass tae ye lassie
X Nick