Thank you for the lovely messages and tips and general love.
Well, I haven't written for two weeks, mainly because basically I've been absolutely fed up with Parkinson's. Fed up of having it, thinking about, it writing about it, reading about it. In fact, fuck it down with Parkinson’s!
‘What have you been doing with your time, Emma?’ I hear you ask.
First time in a very very long time I was able to go to the theatre. The theatre was fantastic though with somebody please redesign the seats my arse was so numb.
Most of the UK has been experiencing decent weather (by decent I mean over 15°C in Aberdeen) warm weather really suits my symptoms, I know for some of you it's an absolute killer. But for me, I suddenly feel like I have my old self back; am motivated, in a lot less pain and generally, my overall mood is better. Besides, I love to have cocktails in the sun.
As a family, we have been out camping wild camping, walking playing with R’s new drone and doing summery stuff. But there is a cost to being out and about - the Parkinsons pay off. When you can do one thing one day and be absolutely on your knees the next. In my case, summer weather means I overdo it and here I am writing this letter absolutely at the end of my energy levels. So yet again, it is all about pacing, planning and not overdoing it - very hard!
As regular readers will be aware, I love getting out into nature and wild camping is great away from everything, particularly the city. One night we were out and I think it's the first full uninterrupted sleep that I have had in possibly six months. That was two weeks ago and I still feel refreshed. The power of sleep is incredible.
Something I am struggling with is how noisy summer is. I live in the city with no gardens nearby so I don't get bothered with streamers and lawnmowers etc. But everyone has their windows open, so you hear their TVs, music, arguments, and general chatter. We live not too far from pubs and nightclubs and in the summer people tend to hang out outside enjoying the warmth. The only time I enjoy winter is when they stay inside because it's too bloody freezing.
To help combat my stress levels rising and therefore more parky. I have been investigating and the earplugs that you can get that just lower the sound a little bit just seem to take out some of the harsher bits. I found a set that will take the edge off for me. I will let you know soon as I get them and see if they do the job.
I'd love to know if any of you guys use any noise-dampening tools or are more sensitive to sound than pre-diagnosis.
(I want to add I am very stressed by sirens now. During lockdowns, I really struggled with them it seemed endless in the vast quiet of the city at that point. I think there's a little bit of trauma attached now to hearing those things.)
Here are some nice sounds…👇🏻
But hey, here's the deal. One of the ways to manage Parkinson's is by respecting our limits when it comes to overstimulation, which inevitably leads to stress and increased symptoms. It's all about creating a gentle and supportive environment for ourselves, treating ourselves like the delicate and fabulous creatures we are. So, my fellow Parkinson's chums let's manage our symptoms with humour, kindness, and a dash of earplugs when necessary!
with love
Emma
Oh thank you for the wonderful respite of Figaro ... like you I find summer can be brassy and harsh and I enjoyed reading your experience 💕
I'm completely with you the fucking P thing - at first i was excited by connecting with all of those out there with It - but then the social media echo chamber began to drive me INSANE - and now I want to want to reach for my revolver...Moving on briskly - glad to see your post as I'd actually begun to write a message saying were you ok - and then thought I was being an even sadder old fuck than usual so didn't. But good to know you've been wearing your arse out out theatre seats and wilding it up not lying dying somewhere. I have Apple earpods with sound cancelling which works well but having spent 30 years in the silence of darkest Devon I revel in the noise of living next to one of the busiest pubs in Camden. Call me sicko but the sound of drunken youth falling out onto the street at 2am is a my version of lullaby of Broadway...its life - I can't do it much anymore but I revel in the sound of it on my doorstep..