Spoonie Pyjama Party

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 tha

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 real

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 fo

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 t

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. --READ THE TRANSCRIPT: http://natashalipman.com/what-happens-when-diagnostic-criteria-arent-fit-for-purposeSUPPORT THE REST ROOM: https://natashalipman.substack.com/--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 produce

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 doctorAnd lots more! This is an episode f

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 hamper

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 findi

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 premi

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

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 joy, humour and happiness, even in the most challenging times?----Thanks to our sponsor Phlo. They’re the online pharmacy that makes ordering your medication easy. Learn more: https://wearephlo.com/phlo-delivering-to-you?utm_medium=social&utm_source=podcast&utm_campaign=restroom ----Listen to our episode discussing planning a chronic illness friendly wedding: https://natashalipman.substack.com/p/chronic-illness-wedding-planFind out how our wedding went - and how we navigated chronic illness and some unexpected challenges that came up along the way: h

“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 today’s episode. Natasha and I went to school together - we met when we were about 13 and became friends sitting at the back of the lab and grumbling our way through GCSE physics classes.Looking back, neither of us can quite remember how or why we clicked, we just did. We got each other, not because we went to the same school or because we didn’t particularly enjoy physics. Over time, it turned out that there was something deeper to our friendship. Natasha was diagnosed with ME when she was 12, and we’ve talked a lot over the years about

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 better just doesn’t really take into consideration some of the unique challenges that come along with being chronically ill. For example, one of the first things you’re sure to hear if you look up advice about how to get better sleep is that your bed should only be for sleep and sex. But what if you’re not well enough to be outside of your bed the majority of the time? What if your bed is where you’re most comfortable and supported? What if you work from your bed because you have no other option? And that’s exactly what we’re going to be ex

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. Then we were in Germany in May and our friends got engaged and we were like, oh yeah we need to actually get married. So we decided to do it this summer to make sure that people who were important to us were able to attend. Neither of us really care about a party or wanted anything super “wedding-y”. That being said, we’ve agreed to try and do something small and special - and after telling my producer Philly on WhatsApp she insisted I grab my mic and jump on a call with her. So, the question is: how do you plan a wedding, in 3 months,

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 the stuff I have to do myself (often outside of a medical setting) to manage my conditions on a day-to-day basis. But I never really took the time to ask: what are we actually talking about when we say “self-management”? For so many people living with long-term conditions, being told to “self-manage” leaves them feeling neglected and abandoned without appropriate care. It can feel like a cost-saving exercise for an overstretched healthcare system, and patients are often left alone to “manage” as best as they can. It t

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 turns out, brain fog isn’t a disease, a disorder, or a diagnosis. It’s more a sign “that something is amiss and a signal to take action.” But what does taking action mean when you have an underlying condition? According to Sabina: “Even if you identify [that your brain fog is caused by] your autoimmune disease, your inflammatory disease, or your chronic pain…there may be other factors in your lifestyle that are adding to it or actually just create the tipping point. And actually, if you sort those lifestyle factors, the fog that's caused as a c

Listen now | In today's episode, we explore the science behind brain fog, all the fascinatingly different ways it can impact us, and what can be done help. Get full access to The Rest Room at natashalipman.substack.com/subscribe

"We are valuable and we need your support" | Tanya Herasymova is one of the 2.5 million people who’ve fled Ukraine since Russian forces invaded on 24th February 2022. Tanya, who is disabled, has reached safety but says many disabled Ukrainians have been left behind, unable to leave. She talks about her own journey to safety as well as the work she’s doing with activist group Fight For Right which is working to provide evacuation assistance to disabled Ukrainians, and practical help and support for those who want to stay.Learn more about Fight For Right here: https://ffr.org.ua/ And you can donate to their GoFundMe here: https://bit.ly/3KLOeUT You can read the episode transcript here: http://natashalipman.com/disability-ukraine-podcast-transcriptThank you to my premium subscribers on Substack whose support has made this episode possible. If you’d like to subscribe go to: http://natashalipman.substack.comFollow me on Instagram: www.instagram.com/NatashaLipman and Twitter: w

Do we need to bring back the lost art of convalescence? | 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. A little while back, I stumbled across a teeny tiny book called Recovery: The Lost Art of Convalescence. I read the whole thing in one very short sitting, and then messaged my producer Philly telling her I must interview its author, Dr. Gavin Francis. The book is a meditation on recovery and that’s what we’ll be exploring in this week’s episode The Rest Room podcast. It asks the question: if recovery doesn’t have to be a total absence of ill health, what should we actually be thinking about?We hear from Dr. Francis about what recovery means to him, what n

Listen now | “This is about creating a system that allows you to live to the best of your abilities the majority of the time…ish”. Welcome back to part 2 of our pacing series! 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…and learning how to break it! ======================= We also explore