“I think all too often, healthcare professionals put [self-management] across in a way that kind of internalises a lot of this guilt around ‘I haven't been able to manage, so I failed at self-management.’
You haven't been able to manage because you're living with something unmanageable. Complex, long-term, unpleasant health conditions are a challenge. And it's an ongoing, constantly evolving challenge.” - Jo Southall
Sometimes, I can’t help but feeling like a hypocrite. I work with experts, create resources, and share my experiences of trying to navigate the self-management of long-term health conditions.
I make posts sharing reminders and top tips for the good days and the bad. I know what works for me, and what (in theory) I need to do to feel at my personal best.
And even with all this knowledge, I still struggle. Especially as I’m less than a month into freelance and spent the first two weeks ending every day like a zombie.
I’m pretty sure I’m not the only one to feel that if we just worked hard enough and managed “perfectly” then our unmanageable conditions would become totally manageable. But life just doesn’t work like that. Chronic illness doesn’t work like that. And there’s so many other factors beyond ourselves which play a huge role.
That’s why the quote from my Occupational Therapist, Jo Southall, at the top of this issue hit so me hard when I first heard it.
It’s also why I’m excited to share the second part of our pacing conversation with you today.
If you didn’t catch part 1, I highly recommend giving that a listen first. Jo explained to us what pacing actually is and how to get started with it, no matter where you’re at with your symptoms.
She gave us some really useful tips to help incorporate pacing into our lives in a way that’s actually manageable and sustainable. We’ve had such amazing feedback on the episode, and I just wanted to say a huge thank you to everyone who reached out.
In today’s episode, we’re taking the pacing chat one step further.
We’ll be digging deeper into the dreaded ‘boom and bust’ cycle that many of us living with long-term conditions find ourselves in, understanding how we get into “survival mode”, and learning how to slowly and sustainably move out of it.
We also explore the importance of adapting to focus on what’s actually important to you, because so often it’s the things we love the most (like our hobbies) that are the first to disappear when our energy limitations increase.
We also confront the fact that no matter what, no matter how well you pace, no matter how much time, work or money you put in, things don’t always go to plan. We also talk about the time it takes to make changes, and the lack of wider support available for people with long-term conditions.
Annndd we also talk about how to go about pacing the big stuff and figuring out how to do those things that you know will probably make you feel rubbish…but you still want to do anyway. And, hey, maybe with some pacing tweaks, could be more manageable.
There’s more stuff too, but I’ll save that for you to find out. It’s another brilliantly practical, empathetic and validating episode with Jo. I learned a lot, and found myself listening to some of the clips repeatedly over the last couple of weeks. I hope you enjoy it.
To listen, you can just click play at the top of the email, or you can listen on Apple, Spotify, Amazon and Google. If you’d rather read the transcript of the episode, I’ve made that available on my blog.
What would help you the most?
I have so many ideas and things I want to make, but I’d love to hear what would be the most helpful to you. What kind of content do you think is missing from the chronic illness sphere? What resources do you wish existed? Who should I be talking to?
Feel free to reply to this email or leave a comment below (comments are for premium subscribers only)!
Also, if you’re working on a cool project, are a clinician or expert in your field, or a business who would like to partner with me, please do get in touch.
What I’ve been up to
In the first premium issue of this newsletter, I interviewed my pal (and climatologist) Louise Bellamy all about why the weather impacts chronic illness symptoms. Turns out it was pretty timely, as the UK was hit by terrible storms that floored so many of us.
The latest issue of my newsletter for part-time (and tired!) language learners is all about finding the right teacher for you.
I wrote an article for Radley’s Grow Your Own Joy campaign all about how my disability changed my relationship to fashion…and how fashion changed my relationship to my disability.
The lovely Lydia Wilkins interviewed me about going freelance for her newsletter (paywalled)
That’s all from me for today. I’ve had a difficult few days, so I’m going to listen to Jo and take things one step at a time, schedule this post, and try not to end today like a zombie. Rawr, etc.
How to break the boom and bust cycle, for real this time