Happy September, everybody!
August was a very mixed bag of a month for me. In the positive corner, Sebastian and I got married and had a lovely day. In the not-so-positive corner, Sebastian got Covid two weeks before the wedding, there was a heatwave, I massively overdid it socially and work-wise, my Hashimoto’s treatment is turning out to be more difficult than I expected, and my PoTS symptoms got re-triggered after a bath with new salts and over two weeks later they haven’t calmed down. I think that was maybe the straw that broke the camel’s back.
After a hopeful few months where my health was on the upswing, I’m feeling a bit dejected, frustrated and sad because I’ve been feeling rather bloody rubbish once again.
That being said, given everything that has been going on, it probably shouldn’t be a surprise. I have an appointment with my OT in a few weeks to talk about trying to find a better balance with things and get some support for some tangible things I can do to, and then we’re off on honeymoon to the south of France. I cannot put into words how much I am looking forward to that.
For today’s conversation thread, I wanted to discuss something that has been on my mind a lot recently: creativity when you live with chronic illness.
One of the loveliest things about reading through the comments on our last two threads has been seeing how many talented, creative, interesting people are here (thank you <3) and how you’ve all been learning to reconceptualise creative practice in a way that is accessible and manageable with your chronic illnesses.
In a recent interview I did with the Substack team, they asked me: “How do you balance running your Substack alongside your own illness?”
I answered: “It’s hard. You want to get into the flow of things and just write and write because you have so many ideas, but your brain and body is screaming at you to stop. I’m trying to learn a different way of being creative, one that enables me to be more mindful of taking breaks and not pushing myself too far. It’s … a work in progress.”
Finding ways to write and make and do whilst still staying in that flow state is something I have not quite cracked. It’s always “just a little bit more” because that stuff is LITERALLY THERE AND WHAT IF I FORGET IF I DON’T JUST DO IT NOW? Or I can’t get back in the zone? But that “just a little bit more” is what can push you over the edge.
Writing, for me, is how I process things in my life. Whether it’s published or not, I’ve always used writing as a way to work through my thoughts and feelings on things. It gets it out of my head and helps me make sense of the world. I have fragments of essays, of thoughts, littered in all different places across my devices. Most of it never gets used, but when something needs to be written, it just…needs to be written. And enforcing a break, even if I know that I can come back to it later, kind of ruins the moment.
With that in mind, that’s what I’d love to hear from you about today. Here are some prompts, in case that’s helpful:
What does creativity mean to you?
How do you incorporate creative practice into your life?
Do you feel like creativity and your creative practice helps you manage your chronic illness?
What challenges do you come up against when trying to be creative with your chronic illness?
How do you navigate those challenges? Have you learned a new way of being creative? What does that look like?
What has been the biggest lesson you’ve learned about creativity?
Over to you! But first, a quick disclaimer:
This a place to share and discuss topics that can be personal and challenging. We all have different experiences, and that’s ok! Please refrain from offering unsolicited medical advice. Make sure to treat everyone with kindness and respect. Basically, don’t be an internet arsehole.
I look forward to chatting with you in the comments!