Pacing: A guide for people who’d rather be doing other things The Rest Room

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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