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If you’ve followed me on social media for a while, you’ll know that I have a particular interest in pacing. This is mostly because I’m naturally extremely bad at it, and I have a rather horrid habit of pushing myself too far (and thereby exacerbating by symptoms).
I persist because I know there are things that I can do day-to-day that will make my life easier. Some thought, planning, and care can lead to less boom and busting, which in turns leads to less suffering, and ultimately, helps me live more.
I think part of the reason I find pacing so challenging is just my personality (videos of me as a very confident yet tiny child are rather hilarious - see: the nativity pageant at school where I am on camera organising everybody in a line whilst singing Rockin’ Robin), but also that I spent the first twenty-one years of my life without a diagnosis.
This meant that I grew up having to “push through” in order to try and be like everyone else. Or, I suppose, put better: to try and do all the things that I wanted to do in my life.
I learned to push, push, push through. Until I couldn’t.
As I got older, my body was able to tolerate the push less and less, and I found my need for recovery increasing from days to weeks to months. I felt like I’d go through phases where I’d disappear from the world, only to triumphantly reappear, push myself too far, and start the cycle all over again.
In our traditional understanding of healthcare, you get a diagnosis, get medical treatment (like medication or an operation), and then get better. Or, y’know, you die.
But, as I’m sure you’ll know if you’re reading this newsletter, the reality is so much more complicated than that. Indeed, for many people living with chronic conditions, there exists a medium place.
Due to a number of factors, from lack of research and lack of interest, to lack of resources (to name just a few), there can be significant limits to what medical interventions are possible. And even if there are some interventions that can help, it’s not a given that people will be able to access the care and support that they need.
A few years ago, during a flare-up induced mental health dip, I said to my GP “I really wish that there was somewhere I could go to get treatment. To get looked after. I’m so tired of doing all this myself”.
His response? “Unfortunately, most of it is down to you and your own self-management”.
And I knew that he was right. Up to a point.
Professor Rodney Grahame, a rheumatologist who specialises in hypermobility once wrote (and forgive me, I can’t seem to find where I read it, it was many years ago) that EDS doesn’t have to be as disabling as it is.
It seems like this is the case for so many conditions, too. After all, if people had access to timely diagnosis, adequate (although, really, we should be talking about excellent and exemplary) care, and long-term support, I firmly believe that the rate of suffering and debilitating symptoms would be significantly less. We can’t talk about the role of self-management outside without this (and I’ll be exploring this theme more in future issues).
Part of the reason my health ended up declining so much was because I didn’t have appropriate care. But I still had more than most people. I took the medications and did the physio - but sadly, I didn’t respond well.
When I reached the limit of what was available to me, I felt lost. I didn’t know what to do or where to turn. And as a result, my condition worsened. It was a vicious cycle - the worse I felt, the less I could do, the more I withdrew from life, the sadder I got, and the more deconditioned I became. It’s hard to see a way out when you’re getting worse, and even the smallest things can feel terrifying, and have a big impact on your health and quality of life.
Over the last few years, I’ve had access to ongoing support to get stronger. It has taken literally five years of constant work, and I know beyond a shadow of a doubt it’s not something that I could have done alone.
Beyond a PT and my osteopath, I’ve had access to mobility aids, an understanding workplace, love and support from my family and friends. I’ve had access to experts I can speak to through the process of making resources. I’ve not been in this alone. I have resources. And I still find it difficult.
There’s so much information out there from medical professionals who are on the front line of challenging how we treat people with pain and other long-term conditions that struggle to present the information in a way that truly connects. That’s at the heart of a lot of the work I’ll be doing over the next few months. Translating that information for anyone who needs it. I’d love to hear what kind of things you’d find helpful - please feel free to respond to this newsletter with any suggestions or ideas.
Whilst I cannot change the underlying systems, there are tools that we can utilise to help plug the gap. Tools that we can start experimenting with today, that don’t cost any money. Is it ideal? No, not really. But if there are small changes we can make that add up to less suffering day-to-day, to my mind, it’s at least a bloody good place to start.
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That leads us back to today’s topic, pacing.
For most of my adult life, I was told two contradictory things by medical professionals: first, that I needed to keep as active as possible and keep as much movement and activity in my life as I could, and second, I also needed to pace and not overdo it.
It was confusing. No one ever told me what those things actually meant or how to go about figuring that stuff out in the best way that would work for my life - and all the things I wanted to do with it.
So for years I tried my very best to juggle these two contradictory ideas, which didn’t end up working out super well for me. I would go through phases where I pushed myself to extremes, only to have to take to my bed for months on end to recover.
But then, apparently, I wasn’t even doing that right.
I specifically remember being told off by my physio for resting in bed but using my brain to work on projects on my computer and thinking “what does she want from me? Am I literally supposed to just lie here and do nothing?!”
These fears were only exacerbated when a pain management psychologist told me I had to expect less of myself in my life. Looking back, it was probably a badly phrased attempt to tell me to be kinder to myself, but that’s absolutely not how I took it, and it sent me into a spiral.
That cycle continued over and over again, and every time I crashed I felt more demoralised. What was I supposed to do? Should I just spend significant periods of my time literally just in bed staring at a wall? Is that what they meant by pacing?
Turns out, no. Not that they communicated that to me.
On Boxing Day 2020, I took my first pacing masterclass with Occupational Therapist, Jo Southall. She blew my mind and helped me reformulate how I think about energy management.
I left the session thinking that if everybody who got diagnosed with a long-term condition had access to someone like Jo pretty damn soon after they were diagnosed, it could be a total game-changer. What she told me wasn’t complicated. Once you hear it, it makes so much sense.
Living, truly living, isn’t just about medication and physiotherapy. But the medical interventions are so focussed on purely symptom management, and it’s not a given that they’ll work anyway, that life…just takes a back seat.
And that’s what is so often missing from these conversations, isn’t it? The living.
Which is why I’m delighted that Jo has joined me for the latest episode of The Rest Room podcast. It’s called “Pacing: A guide for people who’d rather be doing other things” and it’s part one of a two-part conversation I had with Jo.
In this episode Jo shares her tips on how to introduce pacing into your life in a way that’s both manageable and sustainable - no matter where you’re at with your symptoms. I found this episode incredibly helpful, and I even sent some sneaky clips to friends to listen to, because there’s so much insightful advice that we really needed to hear and implement!
You can listen directly from this email. If you scroll up to the top, you’ll see a sneaky little audio player. Just click the play button and it’ll pop open in a window for you!
You can also listen on Apple, Spotify and Amazon. Hopefully Google too, but I’ve had some trouble with transferring over here to Substack. If you’d rather read the transcript of the episode, I’ve made that available on my blog.
What else have I been up to?
This time last year, I started learning Yiddish. The amazing folks over at In Geveb, the Yiddish journal, asked me to write about my experiences of trying to learn a language with chronic illness.
Speaking of language learning, one of the biggest things that has helped me be able to learn a language, even during a flare-up, has been learning how to learn languages. Luckily, I had a clever clogs linguist pal, Dr. Colin Gorrie, to walk me through it. This stuff really blew my mind, which is why we started a newsletter that’s all about offering science-based strategies for part-time language learners. If you want to learn a language, or are in the process of learning one now, check out “How Do You Say…” to help make that process a whole lot easier (and more fun!)
I had a little bit of a nightmare with transferring some things over, which ended up taking way more time than anticipated, so I’m going to leave this issue here for today.
I really hope you find the episode helpful. We had such a great response to the blog series we did together, so I was really excited to work with her again for this podcast. I personally found Jo’s tips life-changing - I hope you can get as much out of it as I did.
And I just want to say a big thank you to CareCo for sponsoring the podcast, to my brilliant producer Philly Guillou at OG Podcasts (and to Ollie for helping me with my panic over transferring the podcast to Substack!) and Amit Rai for the episode art and the intro music.