The Rest Room

A little while ago, my doctor told me that I need to convalesce. My instinct? To record a podcast episode about convalescence. In which I was called out (kindly) for that being my first instinct.

The episode is, I think, a fascinating conversation about what realistic convalescence in 2023 looks like when you live with a long-term health condition and can’t just disappear to “go and take the sea air”.

After a difficult few months, exacerbated in the last few weeks, I was putting the finishing touches to my script for the first episode of The Rest Room for 2023 (all about Post-Exertional Malaise), when I realised that I just need to take a break.

My capacity for work, or even basic tasks of daily living, and the impact they have on my ability to function has changed. So, after stubbornly clinging to some of my own projects for my own sense of wellbeing, it finally hit me that I need to respect my need to stop, rest, and recover.

It feels appropriate, then, that this episode is about convalescence. It’s a topic that good friend of the podcast, Jo Southall, and I arranged to talk about long before I decided to take a break. And I’m so glad that we did.

In it, we discuss:

* How we contextualise “health” in a modern world 

* How to start incorporating convalescence into everyday life 

* Exploring presenteeism, plateaus, and the stress bucket

* Learning to give yourself permission to rest

* Shifting your mindset when it comes to rest and recovery 

* How to convalesce at home

* Whether technology has affected our ability to convalesce…

…and much more.

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A huge thank you to TGA Mobility for sponsoring this episode. They believe that when it’s hard to move, you needn’t stop living.

Over Christmas, I had the opportunity to borrow and test out their new, foldable Whill F powerchair on my trip to Germany, and it helped me travel comfortably and independently. I have to say I was thoroughly impressed, it was incredibly comfortable and so easy to use, fold, and transport.

I know that buying a wheelchair is a big decision, but for if and when the time is right, TGA are offering 10% off new scooters and powerchairs for Rest Room listeners with code RESTROOM10.

Find me on Substack at natashalipman.substack.com.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit natashalipman.substack.com

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 questions I’ve been pondering for a while, so I’m delighted to be joined for this episode by Todd Davenport, a Professor at the Department of Physical Therapy at the University of the Pacific in California in the US. Todd has been involved in pioneering studies of Post-Exertional Malaise in ME/CFS patients using CPET exercise techniques and has such fascinating insights and understanding of PEM, which I can’t wait to share with you. 

In this episode we cover: 

* The science of PEM

* What are the symptoms of PEM 

* How to recognise it 

* What triggers it 

* What we can do to reduce PEM 

* A realistic conversation about pacing to mitigate PEM…

…and much more!

To listen, you can just click play at the top of this 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.

Please note: if you receive this email within the first few hours of it being sent out, it might take a few hours for the podcast to filter through to some of the podcast platforms like Amazon or Spotify.

Thanks to my brilliant producer Philly Guillou at OG Podcasts, to Lucy Dove for the episode art, and to Amit Rai for my intro music.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit natashalipman.substack.com

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, laughs, and a few tears along the way, too.

Instead of releasing something new, I wanted to take some time to look back and reflect on the year we’ve had. There were simply too many brilliant moments from the show in 2022 to share them all, but I’ve picked out some of my favourites which I hope you’ll enjoy.

They might even serve as a good reminder during a difficult time - I definitely benefitted from re-listening to some of the tips, tricks, and hopeful messages.

In this episode we look back on: 

* Recognising flare-ups

* The importance of pacing - and some excellent practical tips for how to do it (that doesn’t require endless time just zonked out in a darkened room)

* How to break the ‘boom & bust’ cycle 

* The problem with how we conceptualise “self-management”

* What brain fog actually is

* Becoming sick as a child, and how our relationship to our health can change over time

* Navigating relationships with chronic illness 

* Listener experiences of navigating work with chronic illness

…and much, much more!

Read the transcript on my blog.

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This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit natashalipman.substack.com

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 illness, this can be a real challenge. You may want to participate, to be able to do all the things that you’re invited to, to contribute to cooking…but you don’t know how to balance that with your health.

You may be full of festive cheer, but also find it busy and exhausting - and the lights and extra loud music overwhelming.

And even if you don’t celebrate Christmas, there may be lots going on this, or other, times of the year when everything just ramps up. So how do we navigate all the physical and emotional challenges that come with that - whilst finding ways to enjoy things to the fullest?

And that’s exactly what we’ll be exploring today. I’m delighted to welcome back The Rest Room’s resident Occupational Therapist, Jo Southall, to once again share tonnes of practical tips and advice on how to make it through the festive period…or any busy period for that matter!

In this episode we cover: 

* The importance of being kind to yourself

* How to manage expectations (your own and from other people)

* The importance of compromise

* How to communicate with family and friends

* How to pacing, planning, and prioritising so you can make the most of your time and energy

* Accepting that sometimes we just want to do something without making compromises

* Buffering in recovery time…

…And much, much more! 

As always it’s a fascinating episode, stuffed fuller than your Christmas turkey.

Transcript: http://natashalipman.com/christmas-chronic-illness-transcript

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This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit natashalipman.substack.com

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 research…

….and much more!

It was truly fascinating to hear about some of the science that’s going on behind the scenes and I left our conversation feeling hopeful that some of the mysteries surrounding the Ehlers-Danlos Syndromes are one step closer to being solved. 

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READ THE TRANSCRIPT: http://natashalipman.com/what-happens-when-diagnostic-criteria-arent-fit-for-purpose

SUPPORT THE REST ROOM: https://natashalipman.substack.com/

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You can learn more about Sabeeha’s lab by visiting their website, read her paper on the Beighton Score, and follow her on Twitter. 

Thanks to my brilliant producer Philly Guillou at OG Podcasts, to Lucy Dove for the episode art, and to Amit Rai for my intro music. 

If you missed my last episode on making the most out of your medical appointments, you can check it out here. 

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit natashalipman.substack.com

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 activist.

In this episode, we discuss:

* The challenges facing doctors in our overstretched, underfunded system 

* What impact this has on patients

* How doctors can create a space for patients to be open, honest and supported

* Why we need to have an honest conversation about expectations

* How, as a patient, can we get the best out of very short doctor's appointment 

* How to best communicate what you want from an appointment 

* How to advocate for yourself 

* How medics can learn from patient feedback 

* What to do if you have a negative experience with a doctor

And lots more! 

This is an episode for both patients and medics - and I hope you learn as much from it as I did.

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Read the transcript here.

You can follow Hannah’s work here, and if you have time, I recommend watching her two TedTalks. You can find them here and here.

Thanks to my brilliant producer Philly Guillou at OG Podcasts, to Lucy Dove for the episode art, and to Amit Rai for my intro music. 

In case you missed the last couple of episodes of The Rest Room: we talked about navigating work when you live with chronic illness and took a peek inside a chronic illness-friendly workplace.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit natashalipman.substack.com

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 comes to finding flexible and meaningful work, to a whole bunch of extremely helpful and practical advice that I hope will benefit you whether you’re looking for a role, or need to get support to help you do your role to the best of your abilities.

This week, we’re flipping the topic on its head, and exploring what employers can do to create flexible workplaces that are inclusive for people living with chronic illness.

I’m delighted to share a conversation I recently had with the bloomin’ delightful Faye Savory from Bear Hugs, a social enterprise which offers hug in a box gift hampers which people can order online. 

Half of Faye’s workforce are either chronically ill or disabled and her business has taken amazing steps to create flexible opportunities, which enables people to work around their health needs.

We discuss everything from:

* Faye’s personal experience of becoming an entrepreneur and balancing her own health needs

* Why she’s so passionate about creating opportunities for chronically ill people

* How BearHugs has worked to “normalise” a flexible work culture

* The different structural/business ways Bear Hugs is creating an inclusive workplace

* The benefits of these accommodations on non-chronically ill staff

There’s a lot of incredibly helpful practical advice for employers (and employees) about navigating this world. I left the call having learned a bunch about different ways of working, and feeling hopeful and inspired.

As you’ll hear, Faye has had to think outside the box and it’s been a real process of trial and error. She’s the first to admit that she doesn’t have everything perfectly figured out, but as she says “it's the smallest changes that make the biggest difference.”

I left the call having learned a bunch about different ways of working, and feeling hopeful and inspired.

This episode is not only great for business owners (chronically ill or not…especially not - please share with people you know who run businesses!) but gives a real insight into the types of things we as employees can look for (and ask for) when it comes to finding an accessible employer.

You can read the transcript on my blog.

Do check out the Bear Hugs website if you’d like to support Faye’s small, inclusive business. 

Thanks to my brilliant producer Philly Guillou at OG Podcasts, to Lucy Dove for the episode art, and to Amit Rai for my intro music. 

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit natashalipman.substack.com

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 challenges that people with long-term conditions face when trying to find (or stay in work), and some of the wider trends happening in the world of work, including the impact of the pandemic.

You’ll also hear from some of our listeners about their experiences of navigating accessible work with chronic illness, and a whole lot of excellent advice on how to to make sure a job is sustainable for your needs, and advocate for yourself in the workplace.

If you feel like you want and are able to work, even a little bit, I really hope this episode will help you navigate these tricky waters towards finding meaningful and inclusive ways of working.

You can read the transcript of this episode on my blog.

Do check out Astriid’s website if you’d like help finding accessible and meaningful work. And you can find out more about Pippa and Bruce on their websites.

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Listen to our episode about the boom and bust cycle.

Thanks to my brilliant producer Philly Guillou at OG Podcasts, to Lucy Dove for the episode art, and to Amit Rai for my intro music.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit natashalipman.substack.com

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 today’s episode of The Rest Room.

It’s a wide-ranging discussion where we explore Harry’s experiences with Long Covid and being disbelieved, all the really cool work that’s happening at Visible, the science behind it, and how we hope it will help people living with energy-limiting chronic illnesses.

We also discuss how Visible will contribute to research to push forward the science on these conditions, and break some of the stigma by literally helping you make your invisible illness, visible.

Learn more about Visible and sign up to our waitlist.

Subscribe to my Substack as a free or premium subscriber.

Read the transcript on my blog.

Thanks to my brilliant producer Philly Guillou at OG Podcasts, to Lucy Dove for the episode art, and to Amit Rai for my intro music. 

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit natashalipman.substack.com

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 wide-ranging and personal discussion. Like with every conversation about movement and activity, please always use your own best judgement about your health and your ability levels.

Read the transcript here.

Do check out Jeannie’s website and YouTube channel for lots of helpful information, videos and advice. You can learn more about The Zebra Club here, and here's the video Jeannie mentioned about deconditioning.

Thanks to my brilliant producer Philly Guillou at OG Podcasts, to Lucy Dove for the episode art, and to Amit Rai for my intro music. 

There’s also an issue for premium subscribers digging into more detail about learning to feel safer in my body, that is a lovely follow-on from what you’re about to listen to. Find out more here.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit natashalipman.substack.com