Hello! Thank you for all the sign-ups to my new project and the lovely comments about the return of Tumbled - The internet’s only Parkinson’s rom-com! I have the best readers.

And how is January working out for you? Utter bollox, you say? When will it ever end, you ask? They tell us it has 31 days but we know that is a lie. It’s at least 13, 908 days 14 hours 32 minutes and 2 seconds long. At. Least.

I am an advocate of taking down the Christmas decorations and clutter as soon as it’s over - the 26th if possible - my family don’t let me. 🤷🏼‍♀️ The point of the decorations is over as far as I’m concerned. Here in the frozen North, it is dark, soggy, cold and pretty damn miserable. I am in favour of making January a month of twinkly lights, candles, fire and hibernation…who’s with me?

My moans aside I wanted to think about time. January might feel interminable but on the other hand, I feel that 2023 is already galloping over the hills and far away.

Sree tweeted this: (Also, check out her newsletter…it’s going to be great!)

studiosree @studiosree

My sense of time is warped. When I submit a support ticket I want a response within 2 to 4 hours. I know that’s not possible having worked on the other side. But after submitting it feels like a week has passed and it’s been less than 24 hours. Anyone experience time warpyness?

6:49 AM ∙ Jan 12, 2023

And I thought it interesting. I frequently find myself losing time or time warping.

It leads to my repeating things I think I said several days ago and it turns out it was just an hour past. I look at the clock and absorb one time but not the hours in between so my brain calculates that only 10 minutes have gone. It’s confusing. To me, to others.

Some of it stems from disrupted sleep, sometimes only a few hours snatched over 8 hours. 10 mins here 30 mins there. Perennial sleep deprivation doesn’t tend to anchor you in ‘normal’ time. Some of it is because I can’t remember the last time I wasn’t in pain. The pain has been especially bad the last…well, you see I want to say week. But in reality, it’s closer to two months, or more. It all blends into a cycle of slightly less pain vs slightly more pain. A chair to bed to bath to walk to chair to bed to - shuffle of discomfort. The markers of time don’t hold true for me. I can’t wake up rested and pain-free and register that this is a new day. Today feels just like yesterday and last week will be like tomorrow. The time warp of chronic illness.

This leads to a mental health challenge. If you don’t know where you are in time, how can you function with any clarity?

I have travelled in places where I didn’t know what day of the month it was and my only time marker was the sunrise and sunset. I loved that sensation of realising that time didn’t really matter, in fact, I began to understand that the rush and push of manmade time was destructive. Being less beholden to it does benefit my mental battle with Parkinson’s. Allowing me to take the extra time I need to achieve tasks. But this ‘time slipping sideways’ thing is a step too far.

The world still needs me to function vaguely on its time agenda, I have hungry teens to feed, a neurotic collie to walk, newsletters to write. Then there are the bigger time things; birthdays, festivals, holidays. It’s hard to stay on track.

I worry that I don’t actually care. The apathy of Mr P gifts me the capacity to not achieve under the Kosh of normal motivational systems. I know I should care. We have to care about time or we lose ourselves to the void. And time isn’t losing track of me. Parkinson’s marches ever onward, my children grow, my wrinkles deepen and the world turns.

Yet again Parkinson’s reminds me to stay attached to the good bits and not to give in to the attraction of warping in time. Time helps us live.

I’d love to know your experiences with time and chronic illness - leave a comment or hit reply.

with love

Emma xxx

P.S. Thank you for the ongoing tips and subscribes, makes me smile with every sign-up, comment and like.