I'm ready for my close up...🎥
Where Emma makes a video
Transcript (auto-generated…sorry for mistakes!)
Hello, Lovelies. As you can see, my hand is in a lovely state today, so I won't be typing. And hence the first video appearance of who stole my dopamine. I hate videos and photos. I like to try and move through the world quietly, and videos and photos are a bit too permanent a record for my liking. But we'll do it because I wouldn't disappoint my readers. Or in this case, viewers, just a few things. Thank you so much as always. For all the support for the main newsletter, which is this one. And, of course, Domestic Bliss, which I started a few weeks ago. I'm really touched by all your responses, and you guys send me a lot of pet pictures, which is absolutely wonderful. My inbox loves getting beautiful pets and all your stories around them. Glad to see that Tika the rescue dog. The rescue collie isn't the only nut out there. Keep them coming. And, of course, don't forget to send me questions about Parkinson's and domestic life and how to deal with annoying teenagers. So I don't know where you all are in the world. I know, I've got a lot of US followers. Hello! And, some down under in Australia and New Zealand, which is just delightful. The weather here in Aberdeen has been predictably four seasons in one hour. Never mind a day we actually had thick snow the other day. So, you know, welcome the spring. And so I hope you're all staying cosy or cool wherever you are. And just a quick hello to all my new subscribers. I promise the videos are not permanent. But as I say, I'm not able to type properly today. Um, as my misspelt tweets possibly show.
So, where was I? Yeah, I'm not good at this. Now, I did make notes. You'll be impressed, That I made some notes, but my handwriting is so appalling. I can't actually read them so we'll just have to wing it as per usual.
One of the things I wanted to talk about in today's newsletter was how we feel about our bodies when we have chronic illnesses and specifically how I feel about having Parkinson's. And what triggered that was a tweet, which I'll put in the links below. Where the gentleman talks about how he feels about being in a wheelchair and being restricted. And he says here:
that a few years ago I realised I am totally disconnected from my body. It's there or should I say here? But it's not mine. It's not me. It's external, an enemy, that thing that keeps me from doing what I want now.
In this context, he is referencing doing sports as a child but also perhaps as an adult as well, and how he didn't experience direct discrimination or direct bullying. But the little things that add up, the little he couldn't push through, he couldn't quite keep up. It wasn't made to feel included. And there are two points there, one the enemy the body feels when you're ill or when I'm certain when my Parkinson's And today is a case in point with my wrist and my hand being very sore, and um, I have all breaks you see and then when my tremors are really bad, it sets them all off, and it makes it very sore to write and then, of course, I get the dystonia on top of it. So it really feels like I'm battling fighting my body. Now, as readers of this blog, you guys know how I feel about the language of fight and warrior and those sorts of things. I'm not a great fan of this idea of fighting a disease, but what I'm talking about here is my being against my own body and how disconnected I feel. You know, I was sort of listing the areas where I feel I can't do anything now or I'm certainly limited in what I can do. And it's, I don't recommend you do it. It's a really emotional journey. When you feel that your body is perilous and of course, as you know, with Parkinson's, that comes and goes. So one of the reasons my arm is hurting is our bedroom has some exercise equipment in it as well. As you know, the flat's quite small, so we need to fit everything in, and we have a cross trainer here which weighs probably about 70 kg. I decided in my wild organisational things to get a better night's sleep. We needed to sort of make the bedroom a little more harmonious. So I'm deadlifting 70 kg of, you know, a cross-trainer. My children just despair of me. That's obviously been a strain on my wrist. But Monday was a good day. It was a day when I was able to do that. And, sure, I was knackered by the end of the day and that sort of thing, I was able, and my body felt mine again because I was doing things that I would have habitually done previously and not particularly thought about it. And this tweet this idea of the enemy is disconnected.
I'm really struggling, as many of you are to, um, incorporate exercise in the way that I know will benefit my Parkinson's. I know it will improve my overall health. I've always been really active. So it bites when I can't do these things And what I'm wondering and I'd love your feedback. Please leave comments and things because you guys just inspire me with your alternative perspectives really helps. How can I make peace with not being able to do certain things or not be so hard on myself about it?
Where I can say. Well, all right. So, Emma, you could do that on Monday. But you've got to take two days’ rest to recover. Don't beat yourself up about it. You still achieved something. Your body was still a fantastically powerful machine. You know and I still got up. I'm sitting at my desk. I'm speaking to you guys. Um, you know, not everything is lost. It's an alternative view. Um, but I need to get emotional I need to bring these two sides together to try and, you know, make myself feel better. Basically, because, as always, your mental and emotional attitude, of course, has an impact on our physical beings. I just, you know, as I say, I've got to find the peace. I've got to find the equilibrium around this.
I'd love your feedback on any of those rambling thoughts. Yeah, I think it's better when I write these newsletters because they have an editor. Oh, yeah. I just want to let you know I'm doing this in one take. There's no way I've got the skills to manage video editing. So there, um, but moving sort of away from the rather depressing aspects.
There was something that really, uh, heartened me on Twitter. You see, Twitter isn't all bad guys. I'll link to this. The marvellous Heather Kennedy put a tweet along the lines of ‘Look, guys, there's so many, you know, people advocating for Parkinson's and chronic illness, you know, share what you do, share your post, share something creative.’
And it's a fantastic thread where so many of us in this in this wonderful community, um, share their creativity. And some people are just amazing. They just do little paintings every day and the discipline is fantastic. Other people do have written books and videos, and there's a whole pile of musicians out there. In fact, there's a separate thread that is rammed with incredibly talented, um, musicians and musical folk, all with Parkinson's, which just goes to show our bodies are not our enemies.
We can connect to the things that we love. We might have to do them differently, But maybe that's good. Maybe it's creative. That's really good, Um, you know, to keep flexing those creative muscles. They are just, you know, just at the end of Parkinson's world month or whatever it is. Some of the awareness here is that we are living vibrant people and beings, and it doesn't matter ultimately, what things are standing in our way. We can overcome them because we are creative or we can learn to work with them.
And as I say, you know, I don't like the attitude of ‘Yeah, we can beat this shit.’
That's not really what it's about. I think it's learning to work, learning to cooperate and ultimately learning to love ourselves, learning to be kind, kind to ourselves and kind to each other. And Heather's, you know, tweet there just shows that by sharing each other's skills and talents, you know, we bolster ourselves. And, you know, I know there is a lot of negativity on social media and so on. Um, I am extremely fortunate. I get nothing but nice interactions and a huge amount of kindness and a lot of laughter. You guys are hilarious.
So thank you for brightening my day every day. I hope you all have a good week. I don't think I'm gonna ramble anymore. I promise. Normal service will resume. I will stop lifting heavy things. Maybe, maybe.
Cheers. Everyone. Have a fantastic week. Look out for Domestic Bliss on Sunday. Don't forget to leave comments and respond to me and just tell me not to do videos ever again. Take care of my darlings.
with love
Emma xxx
I briefly touched on the whole exercise thing in my post about ridiculously easy exercises. Being disabled and having your body not work when you want it to can feel so frustrating and demoralizing. I've learned to love my body when it's struggling to just survive, but it's taken over a decade of work to get to this point. I also learned that you don't need to "do" a lot to get the benefits from exercise - hence the post about it. I used to teach the local arthritis foundation exercise program at the community center, and we did all the exercises sitting in a chair and only 4 repetitions per exercise, and that was enough to get some astounding results. You might want to see if there's a local program like that near you.
*hugs* xxxxxx