The Rest Room (Natasha Lipman)
Explore every episode of The Rest Room
| Pub. Date | Title | Duration | |
|---|---|---|---|
| 10 Jan 2022 | What to do when your chronic illness flares up | 00:54:26 | |
If you live with chronic illness or chronic pain, chances are you’ll experience a flare-up of your symptoms from time to time. Those flare-ups will look and feel different for each person, but whatever a flare up means for you, we hope this episode will provide you with some valuable tips and tricks to help you navigate them better. Pain management physiotherapist Claire Campbell helps us understand what flare-ups are, what causes them and what we can do to mitigate and manage symptoms. She offers helpful advice on everything from managing external stressors, learning to put your health first and asking for help during a flare-up. Thanks to our episode sponsor, YuYu Bottle. To get your very own long, hot water bottle with 15% off, visit YuYubottle.com and enter the code RESTROOM15. You can read the episode transcript here: http://natashalipman.com/chronic-illness-pain-flare-up-management Check out this Instagram post to learn more about ‘No Zero Days’: https://www.instagram.com/natashalipman/p/CNNcHvoBpuU/?utm_medium=copy_link Follow me on Instagram: www.instagram.com/NatashaLipman and Twitter: www.twitter.com/NatashaLipman 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 | |||
| 01 Dec 2021 | How accessible is theatre for disabled people? | 00:45:44 | |
Many theatres were built hundreds of years ago, without accessibility in mind. It’s true that a lot has changed in recent years, but disabled people still face many barriers both off and on stage. In this episode, we speak to access consultant and activist Shona Louise about the work she’s doing to drive real change in the industry. We also hear from actor, singer and radio presenter Sandra Gayer about her experience of accessibility as a performer. So whether you’re a disabled person who wishes trips to the theatre were easier, or you work in the industry and want to know what changes you can make to improve accessibility, this episode is for you. You can read the transcript here: www.natashalipman.com/theatre-accessibility-disability Read Shona’s Open Letter here: https://bit.ly/3FyvMw2 Here’s more information about Sandra’s work: www.sandragayer.com And here’s where you can catch her in the TV series Inside No. 9: https://www.bbc.co.uk/iplayer/episode/m000g1b2/inside-no-9-series-5-5-thinking-out-loud Thanks to The Old Vic for sponsoring this podcast. You can learn more about their upcoming production of A Christmas Carol and their Access Scheme:
Follow me on Instagram: www.instagram.com/NatashaLipman and Twitter: www.twitter.com/NatashaLipman If you'd like to dive deeper into any of the research I've highlighted in this episode, check out the links below.
And here’s some access information for theatres in London.
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 | |||
| 08 Nov 2021 | How to make a film about chronic illness | 00:43:26 | |
How often do you see chronic illness or disability portrayed on your screens? The answer is, sadly not as often as we should. In fact, disabled people are the most under-represented group in television, both on and off screen. In this episode, we explore how accessible the industry is as we speak to screenwriter Charlotte Paradise. She’s behind the short film ‘Chronic’ which follows a chronically ill woman as she moves in with her boyfriend for the first time. Charlotte herself lives with chronic illness, so we spoke about the highs and lows of the industry, what it's like to tell such a personal story on screen, and how they endeavoured to make this an accessible process from start to finish. So whether you want to get into the industry, or you simply want to see more representation on your screens, we hope this episode will get the conversation started. You can read the transcript here: https://bit.ly/rest-room-chronic-film Learn more about Chronic at: www.instagram.com/ChronicFilm Thanks to The Old Vic for sponsoring this podcast. You can learn more about their upcoming production of A Christmas Carol and their Access Scheme:
Follow me on Instagram: www.instagram.com/NatashaLipman and Twitter: www.twitter.com/NatashaLipman If you'd like to dive deeper into any of the research I've highlighted in this episode, check out the links below.
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 | |||
| 13 Sep 2021 | How To Navigate University With Chronic Illness | 00:43:02 | |
Heading to university can be a rollercoaster of emotions – for many, it’s one of the most exciting experiences, but also one of the most overwhelming. And for someone living with a chronic illness, it can be a minefield. In today’s episode we aim to take the stress and uncertainty out of the university experience, so you can enjoy the ride. Author, blogger and psychology graduate Pippa Stacey has experienced this all first hand, and shares the lessons she learnt along the way. We’re also joined by Dr Melanie Thorley from the student wellbeing service at the University of Greenwich, who shares some great advice, as well as her insights on the impact of the pandemic on the university experience. So, whether you’re returning to uni, or heading off for the first time, this episode has a whole lotta info to help you make the most of it. You can read the transcript here: www.natashalipman.com/university-chronic-illness-podcast If you'd like to dive deeper into any of the research I've highlighted in this episode, check out the links below.
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 | |||
| 08 Feb 2023 | On convalescence & chronic illness | 00:42:53 | |
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. -- 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 | |||
| 09 Feb 2022 | Pacing: A guide for people who’d rather be doing other things | 00:29:22 | |
Before we get started, I wanted to say thank you to everyone who signed up to my newsletter last week, and to those of you who have purchased a premium subscription. I have so many things I want to do and create, and your support will make that possible. Thank you again. If you’re interested in becoming a premium subscriber, you can get 10% off yearly membership for life using this link if you sign up before 10th February. 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. The Rest Room is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber. 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. Thank you for reading The Rest Room. This post is public so please feel free to share it. 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 | |||
| 23 Feb 2022 | How to break the boom and bust cycle, for real this time | 00:36:05 | |
“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’t help but feeling like a hypocrite. I work with experts, create resources, and share my experiences of trying to navigate the self-management of long-term health conditions. I make posts sharing reminders and top tips for the good days and the bad. I know what works for me, and what (in theory) I need to do to feel at my personal best. And even with all this knowledge, I still struggle. Especially as I’m less than a month into freelance and spent the first two weeks ending every day like a zombie. I’m pretty sure I’m not the only one to feel that if we just worked hard enough and managed “perfectly” then our unmanageable conditions would become totally manageable. But life just doesn’t work like that. Chronic illness doesn’t work like that. And there’s so many other factors beyond ourselves which play a huge role. That’s why the quote from my Occupational Therapist, Jo Southall, at the top of this issue hit so me hard when I first heard it. It’s also why I’m excited to share the second part of our pacing conversation with you today. 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, understanding how we get into “survival mode”, and learning how to slowly and sustainably move out of it. We also explore the importance of adapting to focus on what’s actually important to you, because so often it’s the things we love the most (like our hobbies) that are the first to disappear when our energy limitations increase. We also confront the fact that no matter what, no matter how well you pace, no matter how much time, work or money you put in, things don’t always go to plan. We also talk about the time it takes to make changes, and the lack of wider support available for people with long-term conditions. Annndd we also talk about how to go about pacing the big stuff and figuring out how to do those things that you know will probably make you feel rubbish…but you still want to do anyway. And, hey, maybe with some pacing tweaks, could be more manageable. There’s more stuff too, but I’ll save that for you to find out. It’s another brilliantly practical, empathetic and validating episode with Jo. I learned a lot, and found myself listening to some of the clips repeatedly over the last couple of weeks. I hope you enjoy it. To listen, you can just click play at the top of the 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. The Rest Room is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber. What would help you the most? I have so many ideas and things I want to make, but I’d love to hear what would be the most helpful to you. What kind of content do you think is missing from the chronic illness sphere? What resources do you wish existed? Who should I be talking to? Feel free to reply to this email or leave a comment below (comments are for premium subscribers only)! Also, if you’re working on a cool project, are a clinician or expert in your field, or a business who would like to partner with me, please do get in touch. What I’ve been up to In the first premium issue of this newsletter, I interviewed my pal (and climatologist) Louise Bellamy all about why the weather impacts chronic illness symptoms. Turns out it was pretty timely, as the UK was hit by terrible storms that floored so many of us. The latest issue of my newsletter for part-time (and tired!) language learners is all about finding the right teacher for you. I wrote an article for Radley’s Grow Your Own Joy campaign all about how my disability changed my relationship to fashion…and how fashion changed my relationship to my disability. The lovely Lydia Wilkins interviewed me about going freelance for her newsletter (paywalled) Thank you for reading The Rest Room. This post is public so feel free to share it. That’s all from me for today. I’ve had a difficult few days, so I’m going to listen to Jo and take things one step at a time, schedule this post, and try not to end today like a zombie. Rawr, etc. 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 | |||
| 09 Mar 2022 | Rethinking Recovery | 00:41:27 | |
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. Our current cultural understanding of recovery is pretty linear. You get sick, you go to the doctor, they give you medication, perform an operation, or put you on a treatment regimen. Time passes, and you get better. Like, you fully get back to how you were before you got sick. Or, if you’re one of the unlucky ones, you don’t make it. But what if you have a long-term condition where a complete state of physical, mental and social well-being isn’t possible? Does recovery solely have to mean a total absence of ill-health? 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 of 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 needs to change to give people the best chance of recovery and about how our society isn’t set up to allow people the time they need to recover. We also consider the roles our own beliefs and nature play in our health, and how you might start to reimagine or re-write your story when you live with a long-term condition. It definitely gave me a lot to think about. I hope it will give you a lot to think about too. To listen, you can just click play at the top of the 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. I wanted to take a quick moment to thank the sponsor of this episode, the Passenger Assistance App by Transreport, which takes the time and fuss out of requesting disability assistance when you travel by train in the UK. You can download the app now on iOS and Android. In next week’s premium issue of this newsletter, I’m going to be sharing what I’ve been working on when it comes to pacing, and the super specific skills, tools and tricks that help me not end my days like a zombie…when I actually do it! The Rest Room is a reader-supported publication. To receive new posts and support my work, please consider becoming a free or paid subscriber. 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 | |||
| 15 Mar 2022 | “The whole world needs to know that people with disabilities in Ukraine are left behind” | 00:21:48 | |
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 forgotten". The International Disability Alliance says there’s little evacuation support, and even those who do manage to get to refugee centres or shelters face many obstacles. And as Russia steps up its attacks on civilian centres, staying in Ukraine doesn’t seem like an option, but not everyone is physically able to leave. Charities and organisations across Europe are coming together and working tirelessly to help as many disabled Ukrainians as they can find safety - or to provide practical help to those who’ve chosen, or have no other choice, but to stay. But there is still so much work to be done. On Monday, I spoke to Tanya Herasymova, the project coordinator for the Ukrainian disability group Fight For Right. Their mission is to achieve effective implementation of the UN Convention on the Rights of Persons with Disabilities, and a few weeks ago the focus of their work shifted almost overnight as rumours began to circulate that Russia would invade Ukraine. Tanya is disabled, and made the difficult decision to leave her home. Thanks to the support of her colleagues, she’s now safely out of the country. I was able to speak to her about her experiences and the work that needs to be done to support disabled Ukrainians, both inside and outside the country. 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. Fight For Right have been fundraising to support disabled people in Ukraine. You can donate to their vital work via GoFundMe. As of the 11th March, they were able to “successfully help 80 Ukrainians with disabilities cross the border and provide critical resources for their health and safety.This has been accomplished entirely due to the support of people with disabilities worldwide. Our team of volunteers has grown from three individuals to a group of over 30 people working tirelessly to do everything possible to fill the gaps and help people with disabilities in Ukraine as they fight to survive.There are many more individuals who still need evacuations, medications, and legal support. Our fight to evacuate Ukrainians with disabilities is a round the clock effort, and we sincerely appreciate each and every donation that has been made so far.” Tanya and her team need all the support they can get right now, so please do donate if you can. And please consider sharing this episode on social media so it can reach as many people as possible. I just wanted to take a moment to say a huge thank you to my premium subscribers here on Substack for making this episode possible. If you’d like to support more work like this, please consider becoming a subscriber: 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 | |||
| 13 Apr 2022 | What actually is brain fog? | 00:34:58 | |
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 windows 98 computer.” In today’s episode, I’m joined by Dr Sabina Brennan, a neuroscientist, health psychologist, and author of the book Beating Brain Fog, who also lives with brain fog herself. Sabina shares some of the fascinating science behind what brain fog is, why people experience brain fog, and all the different ways brain fog can impact us. We’ll also explore what we can do to help. This episode was made possible thanks to my Premium subscribers. To receive new posts and support my work, consider becoming a free or paid subscriber. Turns out, it’s a lot more interesting and complex than I thought, and I now understand some of my own symptoms (and how I interact with the world) better than I did before. So, if you struggle with brain fog (whatever that means to you), I think you’ll learn a lot from this episode. I certainly did! 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. To learn about pacing more with chronic illness, check out this episode of The Rest Room Podcast. Find out more about subscribing to my newsletter here. And consider following me on Instagram and Twitter if you haven’t already! Catch up on my latest issue about growing up in a body that seemingly falls apart at random, and my multi-year quest to learn to feel safer in my body and movement. 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 | |||
| 29 Apr 2022 | How to reduce brain fog | 00:30:11 | |
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 consequence of your condition may not be as bad.” Which is why in today’s episode, we’re exploring the four main factors that contribute to brain fog, and what we can do to help reduce it. And, because this is The Rest Room, of course we’ll be doing this with an understanding that it’s not easy for people with chronic conditions, and offer tips and tricks for how to slowly, safely and sustainably work towards changes that may help with your brain fog, whilst also working for your body and lifestyle. It was a wide-ranging conversation, and I hope you’ll it helpful. 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. I wanted to take a quick moment to thank the sponsor of this episode, Fine & Able, who create beautiful accessible bathrooms in a style you love. To find out more visit their website and Instagram and use code NATASHA200 to book your free design consultation. 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. Edit 30/4/22 5.06pm - typo in Sabina’s quote “something is missed” corrected to “something is amiss”. 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 | |||
| 01 Jun 2022 | The problem with "self-management" | 00:50:04 | |
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 turns out that “self-management” is not just one thing, and that even within the NHS, nobody seems to agree on what it means. Which (obviously) has significant repercussions for patients. And that’s exactly what we’re going to be exploring with our guest, Jackie Walumbe. Jackie is a physiotherapist working for the NHS in England and is the co-chair of the Physiotherapy Pain Association. She’s also working on her PhD, which focuses on the self-management of chronic pain. In today’s episode we do a deep-dive into all things self-management, including: * Why can’t anyone agree on what self-management actually means? * How do we have such a disconnect and what does this mean for patients? * Jackie’s research into self-management * People falling through the gaps and the burden of responsibility on the patient * How should we conceptualise self-management (or should we even be using that term at all?!) * Learning from patients * How can we provide better pain care for patients in the future? …and much more. This was a fascinating conversation, and it made me rethink a lot of things that I just took for granted in the pain space. I hope whether you’re a patient or a clinician, you’ll find it just as fascinating! 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. A huge thank you to Jackie for sharing her research with us. You can follow Jackie on Twitter and learn more about the Physiotherapy Pain Association. A big thanks to Phlo for supporting this episode. They’re the online pharmacy that makes ordering your medication easy. Visit wearephlo.com or download Phlo on your favourite App Store to manage, track and have your medication delivered at the touch of a button. 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 want to support The Rest Room, please consider becoming a premium subscriber. 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 | |||
| 15 Jun 2022 | Planning a chronic illness friendly wedding | ||
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, when you have chronic illness? The honest answer is…I have no idea… but I’m trying! In today’s episode, we talk about how I’m trying to create a special day that is as chronic illness friendly as possible. We talk about pacing and planning and prioritising and much more. This is more of a chatty, personal, off the cuff episode, and we hope you find it interesting! 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. A big thanks to Phlo for supporting this episode. They’re the online pharmacy that makes ordering your medication easy. Visit wearephlo.com or download Phlo on your favourite App Store to manage, track and have your medication delivered at the touch of a button. 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 want to support The Rest Room, please consider becoming a premium subscriber. 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 | |||
| 07 Jul 2022 | Actually useful sleep advice for chronic illness | 00:32:58 | |
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 exploring in this episode of The Rest Room. I’m joined once again by friend of the podcast (and my personal Occupational Therapist) Jo Southall to learn all about how to get better sleep, through the lens of chronic illness. We cover all sorts in this episode, including: * Why sleep is particularly important for people with chronic illness * Why those of us with long-term conditions often struggle to get good sleep * The importance of light cues * Advice for how to create a day/night distinction, even if you need to spend your time indoors and in bed * How to create a manageable sleep routine that works for your lifestyle * Plus, a bunch more realistic tips for a better night’s sleep 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. A huge thank you to Jo for sharing her sleep tips with us. You can follow her on Twitter and find out more about her work on her website. A big thanks to my friends at Phlo for supporting this episode. They’re the online pharmacy that makes ordering your medication easy. Visit wearephlo.com or download Phlo on your favourite App Store to manage, track, and have your medication delivered at the touch of a button. 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 want to support The Rest Room, please consider becoming a premium subscriber here. Do you know people who struggle with sleep? Share this post and see if some of Jo’s tips can help them learn realistic and modifiable ways to actually get some shut eye! 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 | |||
| 20 Jul 2022 | 'I hated myself': becoming chronically ill at 12 | 00:52:19 | |
“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 what being ill as a child looked like for us. About how it’s shaped us and the imprints it’s left on our personalities. We’ve also pondered a lot about what it must have been like for our parents to watch the person they love the most in the world suffer and not be able to do anything about it. And that’s the theme of today’s show. Being sick as a child is difficult to explain if you’ve never experienced it. You feel different. You are different. But you so desperately want to be the same as everyone else in your class. It’s hard enough being a kid (especially a teenager) when you’re learning about the world and your place in it - but when you add to that a diagnosis (or a lack of one), constant hospital appointments, weeks and months of missed school, and friendships that feel like they’re balancing on a knife’s edge - it can, at times, feel like it’s too much for one child to take. I went through school living with undiagnosed Ehlers-Danlos Syndrome, and whilst it was a challenge, my experience was still relatively “normal” compared to Natasha’s. So, I'm really pleased to have her on the podcast today. In this incredibly personal and emotional episode, she shares her story, and reflects on what it’s like getting sick when you’re so young, and the impact it has had on everything from her education and her relationships, to how she thinks about herself, even now. 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. A huge thank you to Natasha for sharing her story. She’s not an online person so doesn’t have anything to plug, but you can find more information about ME via Action for ME and The ME Association. A big thanks to my friends at Phlo for supporting this episode. They’re the online pharmacy that makes ordering your medication easy. Visit wearephlo.com or download Phlo on your favourite App Store to manage, track, and have your medication delivered at the touch of a button. 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 want to support The Rest Room, please consider becoming a premium subscriber 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 | |||
| 23 Aug 2022 | "This really brought us closer together" - navigating a relationship with chronic illness | 00:53:12 | |
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-plan Find out how our wedding went - and how we navigated chronic illness and some unexpected challenges that came up along the way: https://natashalipman.substack.com/p/we-got-married ---- Subscribe to The Rest Room: https://natashalipman.substack.com/ ---- Follow me on social media: https://twitter.com/natashalipman https://instagram.com/natashalipman ---- Thanks to my brilliant producer Philly Guillou at OG Podcasts, to Lucy Dove for my logo, 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 | |||
| 07 Sep 2022 | Fear, Pain & Hope: Movement with Hypermobility | 00:52:04 | |
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. Read the transcript 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 | |||
| 21 Sep 2022 | Can technology teach me to pace? | 00:58:06 | |
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 | |||
| 04 Oct 2022 | Navigating work & chronic illness | 00:48:10 | |
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. 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. Subscribe to my Substack as a free or premium subscriber. 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 | |||
| 19 Oct 2022 | Inside a chronic illness-friendly workplace | 00:33:12 | |
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 | |||
| 02 Nov 2022 | How to make the most of your medical appointments | 01:00:56 | |
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. -- 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 | |||
| 23 Nov 2022 | What happens when diagnostic criteria aren't fit for purpose? | 00:41:24 | |
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-purpose SUPPORT 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 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 | |||
| 07 Dec 2022 | How to survive (and enjoy!) the festive season with chronic illness | 00:50:30 | |
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 Subscribe to my newsletter: http://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 | |||
| 21 Dec 2022 | The Rest Room: A 2022 Wrap-Up | 00:52:50 | |
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. Support me on Substack and become a premium subscriber. 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 | |||
| 01 Feb 2023 | What actually is Post-Exertional Malaise? | 00:37:44 | |
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 | |||
| 07 Jun 2021 | Writing, Chronic Illness & Incidental Diversity with Talia Hibbert | 00:40:18 | |
In this (very belated) episode, I'm joined by the brilliant New York Times bestselling author of steamy, diverse romance, Talia Hibbert. Her latest book is "Act Your Age, Eve Brown", an autistic romance, and her first book "Get a Life, Chloe Brown" features a protagonist living with Fibromyalgia. Talia says she "lives in a bedroom full of books. Supposedly, there is a world beyond that room, but she has yet to drum up enough interest to investigate," and ooh is that relatable! We take a deep dive into how she became an author, the role her chronic illnesses play in how she works, what it's like writing characters inspired by your personal experiences, "incidental" diversity (inspired by Olivia Dade talking about incidental fat rep), and much more. Even if writing isn’t something you’re interested in as a career or hobby, we discuss many aspects of living and working with chronic illness that I'm sure will hit home for many! I really enjoyed this conversation, and I hope you do too! This episode couldn't have happened without the editing skills of Amit Rai, the transcription by Evangeline Talbot, and the art by Shona Sawhney. TRANSCRIPT: http://bit.ly/taliahibbert TALIA'S WEBSITE: www.taliahibbert.com MY WEBSITE: www.natashalipman.com FIND ME ON SOCIAL MEDIA @NATASHALIPMAN 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 | |||
| 23 Aug 2020 | Understanding Movement For Chronic Pain | 00:18:24 | |
The Rest Room is a podcast about living well with chronic illness. I'm Natasha Lipman, an award-winning chronic illness blogger and journalist from London. I've been working with experts to bring you evidence-based guides on a whole host of topics like pacing, exercise, and chronic pain. I'll also be talking to people who live with chronic illness and disability who are doing awesome things and learning how they make it work, as well as digging deep into the businesses and brands that are focussed on accessibility. Think fashion, theatre, film, work, and play - there's a whole lot coming up to explore. So why don't you get cozy, make yourself a cup of tea, and join me in The Rest Room? -- In this episode, I'll share an introduction to my blog series written in collaboration with Claire Campbell from the Physiotherapy Pain Association. It will give you an insight into what physiotherapy is, how to reframe how we think about exercise and movement, and some ways to work through both the physical and mental barriers that many people face when it comes to figuring out how to move and get physically stronger in a way that feels safe and sustainable. A huge thank you to Amit Rai for editing the episode and composing the music and to Lucy Dove for the logo! -- Original Blog Post: http://bit.ly/movement-chronic-pain Transcript: https://bit.ly/restdaypode1transcript Making the most of physiotherapy: https://bit.ly/2Yq1oRJ 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 | |||
| 05 Sep 2020 | What are your barriers to moving with chronic pain? | 00:31:18 | |
Changing behaviour can be really hard, even at the best of times. How many of you have embarked on a new fitness regime to help with your health condition, only to stop within a day, a week, or a month? That could be because of pain, fatigue, lack of confidence, lack of support, or one of many other reasons. We often underestimate the difficulties we’ll encounter when we try to break a habit or introduce something new into our lives. In today's episode we're focussing on all those barriers to movement, specifically: - The difference between a blip and an actual set back - How fixed thoughts can stand in our way - Celebrating small wins and setting realistic goals - Taking the first step towards building a movement habit - Understanding why dose matters - Thinking about movement in the wider context of your life - Planning for when things don't go to plan Thinking about movement and exercise can be particularly challenging when you don’t have access to the adequate care that you need. So, I’ve once again partnered up with the brilliant Claire Campbell from the Physiotherapy Pain Association to share the latest evidence-based information that will help you be able to take some of those first steps by yourself in a safe and sustainable way, and help you to become a more informed and active participant in your care. Claire also lives with chronic pain, so she “gets this” in more ways than one! This post still forms part of our introduction - so we may touch on some concepts, tools, and tips that we will be expanding on in the future. There’s just a bunch of stuff that we think is important for you to keep in mind before you start trying to make any changes. We hope that this will get you thinking about how your own barriers may be impacting you and your life, and we’ll be sharing some tips for breaking habits that may have formed for very important and legitimate reasons, but may not be helping you anymore. READ THE BLOG POST: http://bit.ly/chronic-pain-movement-barriers TRANSCRIPT: http://bit.ly/restroompode2transcript RESOURCES MENTIONED: Interview with Dr. Whitney Scott: https://www.youtube.com/watch?v=moJ38ErQfMU ACT (Overcoming FEAR): https://thehappinesstrap.com/upimages/Overcoming_FEAR.pdf Where to find me: Twitter/Instagram @natashalipman www.natashalipman.com Thank you for taking the time to listen and for your support! 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 | |||
| 19 Dec 2020 | How to Start Exercising when Everything Hurts | 00:35:10 | |
Welcome to Episode 3 of The Rest Room! In the last episode, we looked at ways to address the barriers that come up when figuring out how to start incorporating movement and exercise into your life. We learned that we need to throw the whole ‘workout’ mentality in the bin, especially if movement is new to you, but we didn’t cover how to get started in really practical, tangible ways. Whether you have little confidence in your body’s ability to do the things that you need (and want!) to do day-to-day, or you struggle to find a way to make movement a sustainable part of your life, this episode is for you! Our aim is to help you find a way to move that feels safe, and that you’re confident you can stick with, even if it needs to be adapted on more challenging days. There is no doubt that this work is hard. It takes courage, patience and persistence. I hope this will give you a really tangible place to start thinking about your own movement practice. Remember, It doesn’t matter how slowly you need to go. If you're consistent, you’ll still be building habits that will hopefully enable you to do what matters in your life. *One thing I forgot to mention in the episode is that when you're figuring out what your "normal" is, it's important to seek help if something new pops up, even if you have learned coping strategies! I talk about this more in the blog post* WORKSHEET DOWNLOAD: http://bit.ly/movementworksheet FULL BLOG POST: http://bit.ly/exercise-chronic-pain TRANSCRIPT: http://bit.ly/RRe3transcript Art: Lucy Dove Editing and music: Amit Rai 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 | |||
| 11 Jan 2021 | How to learn a language with a chronic illness | 00:45:46 | |
I’m joined by one of my best friends in the world, Colin Gorrie. Or should I say Dr. Colin Gorrie. Colin is a linguist and lifelong language learner. These days he works on bringing knowledge of language and linguistics to a wider audience online. Colin also lives with EDS and experiences a lot of brain fog and fatigue, so I thought it would be a good opportunity to sit down and have a chat about some of the challenges of language learning when your brain doesn’t really retain information in the way that you’d like. You may know that about a month ago I started learning Yiddish. II honestly don’t think it would be happening or going as well as it is if Colin hadn’t spent hours blowing my mind with how the way we often approach language learning…is not…great. And that’s exactly what we’ll be discussing: 🌟 How people currently learn languages 🌟 Whether there is a better way (spoiler alert, there is!) 🌟 Figuring out our motivations for language learning and how to get started 🌟 Getting the most bang for your language learning (and energy) buck 🌟 Ways to take some of the pressure off and make language learning fun 🌟 How to think about pacing and retention of information when it comes to language acquisition As always, language learning may not be something that you're interested in, or you have the ability to do at the moment. This information is here for people who can make use of it! ----- BLOG POST: https://natashalipman.com/how-to-learn-a-language-with-a-chronic-illness/ TRANSCRIPT: http://natashalipman.com/how-to-learn-a-language-with-a-chronic-illness-transcript LINK TO COLIN'S COURSE (10% DISCOUNT): https://hyperlink.academy/discount?discount=02b38cc4-6f47-4d0b-8533-56d2fe92a6f7 Theme music and editing by Amit Rai 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 | |||
| 02 Feb 2021 | How To Read More When You Live With Chronic Illness | 00:32:30 | |
Struggling with reading is something that can be really upsetting to many people, so last year I took to my Instagram Stories to find out what your biggest challenges are when it comes to reading, and what has helped you find a way to make it more accessible. Helpfully, and perhaps unsurprisingly, most of the reading issues that people shared can be broken down into a handful of categories: 🧠 Concentration and processing 🌩️ Physical issues/pain 😫 Energy 🕰️ Making time We're going to cover a bunch of tips, tricks, and ways of thinking and approaching reading that I hope will help you! It’s worth remembering that everybody reads at a different pace. Some people are extremely quick readers and the only things they struggle with are the impact of specific chronic illness symptoms. Others may have bigger challenges on top of that. I am someone who is naturally an extremely quick reader and writer, and that’s something that I’m eternally grateful for. This gives me automatic advantages when it comes to tackling these issues because my barrier to entry is already much lower. I’m thankful for everyone across the reading spectrum who has shared their experiences to help widen the scope of this piece of work. We'll be covering topics like pacing (I know, but it's two different ways of thinking about it!), why reading is reading is reading is reading, different methods of reading, helpful resources, making physical books easier to read, the tracking trap, reflecting on your own experiences, and much more. I'd love to hear about your relationship with reading: how do you find it, how does your chronic illness impact it, and what tools have you learned that help you? You can find me on socials: www.instagram.com/ NatashaLipman www.twitter.com/NatashaLipman Cover Art: @MimiButlin Editing and music: Amit Rai Blog post: https://natashalipman.com/how-to-read-more-when-you-live-with-chronic-illness/ Transcript: https://natashalipman.com/the-rest-room-reading-transcript/ 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 | |||