The Rest Room

Do you experience Post-Exertional Malaise? I have for a number of years now, and it can be utterly debilitating.

But, like the term “brain fog”, I know what PEM means, what it feels like, subjectively, but I didn’t know all that much about what we actually mean when we talk about PEM.

What’s actually happening inside our bodies when we experience these exacerbation of symptoms hours or days after exerting ourselves?

These are quest...

This year has been the best one yet when it comes to this podcast. I’ve been working with an amazing producer (big shoutout to Philly Guillou!) which means we’ve been able to consistently release two episodes a month - and with her support I’ve been able to start working on the kind of content I always felt like I needed when I was younger and early on in my diagnosis. 

I’ve learned so much from our guests, and we’ve shared stories,...

Whether you celebrate Christmas or not, when December rolls around (and you live in a Christian country) there’s a whole lots of special festive stuff going on. Whether it’s invites to dinner or New Year parties, Secret Santa, family meals, festive drinks in a bedecked pub - there’s often a whole lot more social stuff to do, presents to wrap, ugly Christmas jumpers to wear, and Christmas movies to binge.

But if you live with chronic...

In this episode we discuss:

* The history of the Beighton Score - how did a tool used for epidemiological studies come to be used to test for EDS? And should it have been?

* The limitations of the current EDS criteria (and what the hell happened with the HSD diagnosis)

* The difficulties of creating a diagnostic criteria for hEDS

* What’s the deal with “the gene”?

* More about Sabeeha’s current work and the exciting future for EDS resea...

One of the saddest (and yet not surprising) things I’ve heard over the years in my conversations with chronically ill people is how many people have had negative experiences with medical professionals.

I wanted to talk to someone who has experience on both sides of the doctor-patient relationship. And with that in mind, I’m delighted to share a chat I recently had with Hannah Barham-Brown, a chronically ill GP and disability activis...

In the last episode of The Rest Room podcast, we explored the tricky beast of navigating work when you live with chronic illness.

As I mentioned, there are many people who are too unwell to work, but there are also many of us who (with the right roles, adjustments and support) may be able to work even a little bit.

With the help of my guests Pippa Stacey and Bruce Daisley, we discussed everything from the barriers we can face when it...

This week, we’re joined by good friend of the Rest Room, Pippa Stacey, a writer, blogger and public speaker who works with the UK charity Astriid, which matches talented people with long-term health conditions with meaningful work. We’re also joined by Bruce Daisley, who’s a best-selling author and self-proclaimed workplace culture enthusiast.

We discuss the state of inclusive employment for chronically ill people, the ch...

When I heard that a new startup called Visible was building wearable technology to help people with energy-limiting conditions learn how to pace - using real-time data from our own bodies to help us understand how exertion is impacting our health - I got extremely excited. I was lucky enough to join the team in April, and in today's episode I'm joined by our co-founder, CEO (and my boss!) Harry Leeming as our guest for to...

How we think about movement when living with hypermobiliy is a subject I’m super interested in, so I’m delighted to have had the opportunity to chat with Joint Hypermobility & Ehlers-Danlos Syndrome Movement Therapist, Jeannie Di Bon. 

I’ve worked with Jeannie a couple of times in the past and I personally found her approach to the hypermobile body so refreshing.

In today’s episode of The Rest Room, we have a...

What's it actually like to date with chronic illness? And what's it like to date someone who lives with chronic illness?

That’s exactly what we’ll be exploring today - from both sides. I'm joined by my new husband Sebastian to discuss what it's like to be with someone who can’t do a lot of the things young people are expected to do? To see someone you love in pain and not be able to stop it? And how can you find...

“I just hated myself. I really hated myself. My body kept failing me. And so I couldn't do all the things that I so desperately wanted to do. I couldn't be a part of friendship groups. I couldn't go out. I couldn't do anything. This thing, my body, which is supposed to get me from point A, point B, it's supposed to be on my side. It just kept on failing.”

That’s Natasha Misri, one of my oldest and dearest friends, and my guest for t...

Sleep (or lack of it) can be of the cruellest paradoxes of living with chronic illness: you spend your days fatigued beyond words, only to struggle to fall asleep at night. Or you spend a huge amount of time sleeping, but never wake up feeling rested.

And yes, having trouble sleeping is not a problem unique to people living with chronic illness, but I always found that a lot of the basic advice that’s supposed to help us sleep bett...

Ok so, I know how I often talk about pacing and thinking about how to break up activities and give myself as much time as possible to do things…and then…we decided to get married in August.

But we have a plan. And I love admin, so…this is going to be totally fine…?!

Sebastian and I got engaged in June of 2020, but with the whole pandemic going on we decided that we weren’t going to think about a wedding for the foreseeable future. T...

If you’re a regular listener of The Rest Room podcast, you may have sensed a little bit of a theme. I’m very interested in exploring tools and techniques to help us learn how to live well with chronic illness.

We’ve explored topics like pacing and how to safely and sustainably introduce movement into your life - things that are often lumped into the bucket of “self-management”.

To me, self-management has always been thinking about ...

Welcome back to Part 2 of our mini series on brain fog and chronic illness.

In our last episode, Neuroscientist Dr. Sabina Brennan explained what brain fog actually is and all the different ways it can impact us.

As someone who has complained about brain fog for years, but has never thought about it beyond my own subjective experience, I found it fascinating, and highly recommend giving it a listen if you haven’t already.

As it tur...

Like many people living with chronic illness and chronic pain, brain fog is a normal (but bloody annoying) part of my daily life. Whilst I can talk about it subjectively, I never spent much time thinking about what brain fog actually is.

I’m not particularly adept at using visual and descriptive imagery to explain things, so I loved when my friend said that brain fog to her is “like trying to load Netflix on dial up internet on a w...

On the 24th February 2022, the world watched in horror as Russian troops invaded Ukraine. At the time of writing, more than 2.5 million people have fled the country, in what the United Nations has called the fastest-growing refugee crisis since World War Two. 

It’s unclear how many of those who’ve left are disabled, but the European Disability Forum has said tens of thousands of people with disabilities "risk being abandoned and for...

Did you know that in the founding constitution of the World Health Organisation, health is defined as:

“A state of complete physical, mental and social well-being and not merely the absence of disease and infirmity.”

As someone who's lived with chronic conditions since I was a child, I’ve spent a lot of time thinking about what recovery can mean. In fact, I’ve even been through the (pretty common) experience of trying to heal myself...

“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...