Just imagine the luxury of being able to pick up a pen whenever you wanted and just write …
In the early days of this blog I was posting at least once if not twice a week. Long entertaining essays about the hilarious and interesting, and sometimes poignant, exploits of ‘me’ just diagnosed. Then, although I didn’t realise it at the time, I was positively spoilt by being able to type or write whenever inspiration hit, or at the very least whilst a hilarious anecdote about ‘not being able to walk’ was fresh in my mind.
Today, over seven years diagnosed, and I don’t have that ‘normality’. I took for granted being able to willie nillie, casually, pick up a pen whenever I wanted and to type accurately.
My writing is completely Crubbish. I found an old diary whilst sorting through some stuff and was startled by my writing … Positively ginormous rounded masshiv writing. Today it looks less like writing, more like the mark left by a one legged gnat trying to crochet after falling in a vat of tar.
I can ‘type’ when switched off, if typing means anything from one finger to one’s whole head laying across the keyboard. So accurate typing is key, we can all flap our hands about and after a zillion attempts get the works of Shakespeare, or is that just me?
Today pd is trying to take control of my communication skills more and more. I say trying …. I am doing everything I can to try and lead pd up a dodgy cul de sac to distract him whilst I whip out an odd ode or newspaper column or brand-new blog, or even just doodle on the table cloth.
Scarey thing is my writing is also getting really twaddley even when PD is not telling me it is kicking off … ie I think I am switched on – walking and dexterity good, but something is going on as my pen control is crubbish.
Typing is so inaccurate it is a mass of red and blue underscores.
Siri or dictating software only seems to pick up my sweating . I thought I’d leave that hilarious 1am spell check error – my tremoring mouse control picking out the wrong word from the list of suggestions.
Talking of sweating … hot and cold flushes – menopause or PD, or a special bargain combo offer of two for the price of one, ie both. Yes, PD affects temperature control as well … freezing to sweating in a glorious second. I am a joy to be around sometimes (I heard that).
And if you pick a day with a super bonanza offer of ‘add a twaddle for free’ day … then you can add losing my sense of smell into the mix. I generally go about my life innocently devoid of any sense of smell. Happily unaware that I can’t smell. I say ‘happily’ as what you don’t know you’ve lost you can’t miss.
However, every so often my sense of smell randomly returns – no known rhyme or reason for this … just another of PD’s party games. So, I’ll be happily whistling a happy tune, and suddenly be stopped in my tracks muttering, ‘forsooth what, pray tell, is that delicate scent’? A person, who will remain anonymous, did suggest I carry a ‘smell o machine’ which can tell if I smell without me having to be able to smell. So it glows green for ‘yep you smell of soapy goodness’, to a slightly off mauve light for ‘oooh you smell of beer and skittles’, to a super loud siren and flashing beige light for ‘flaming heck here’s a soap voucher’.
Permission to go for a ‘comfort break’ (a phrase which is misleading … is that a midcycle washing machine break) This is a long old ode. My good typing is your long reading.
Crickey what a multi-faceted day. Now first of all let me say that I realise everyone’s days are varied and multi-faceted, schedules being changed by things out of our control; trains being late, losing our keys, the supermarket being out of Outer Mongolian Lesser Spotted Vegan Mince substitute.
So, although I didn’t lose my keys (I have attached them to my bag with a yellow bungee cord) my day went a bit haywire.
So, first of all up at 5am. Slept well, only up twice in the night, which is amazing. But that meant I hadn’t taken all my usual night time drugs. So consequently, undermedicated to start with … dystonia hit first thing, both feet in complete spasm. Not many tricks to get out of dystonia. But rather than sitting and waiting patiently watching the test card (ask an over 50), I dragged myself around the house, literally on the sides of my feet, toes twisting and clenching uncontrollably, and my face distorting with dystonia as well, which, to be honest, I can’t put a positive spin on, as it is decidedly horrendous.
Take main meds and they kick in, but so does my ‘compulsive computer browsing’. A couple of hours of literally unstoppable browsing of guess what …. Holidays, designer gowns, nope walking sticks. Great, PD is even controlling my shopping – but no purchases made. Now just let me clarify when I say ‘browsing’ I don’t mean looking at three different websites to cross reference. I mean looking at twenty different websites a hundred times each, looking at the same thing and just thinking ‘yep that teal polka dot walking stick is the same price on every website in the known world’ … but just to triple check I’ll search all the sites again.
Finally, my meds were working – walked into town … hurrah
Meeting a friend for lunch …. Then because I was tip top, and to be honest a little over the tip top. I thought I’d have a shopping browse.
Big mistake, ‘the compulsive dopamine creating thrill of the mega end of sale knock down prices browsing bug’ kicked in big time. I was swishing and enjoying the shopping rather too much.
So for those of a delicate disposition I won’t describe my shopping fest in great detail. Suffice to say, it started with a sale cardi for £4 whoop and ended with a charity shop designer dress for £10. We will gloss over the bargain dress, gloves mmmmmm and mmmm ………
And then I was late for lunch and completely over the top with dyskinesia – the continual moving …. So woke frozen, then obsessed with computer, then dopamine hit from the mad shopping and then dyskenesic over lunch
What next … oooh my life is soooo exciting