The Rest Room – Détails, épisodes et analyse

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

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

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

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

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

In it, we discuss:

* How we contextualise “health” in a modern world 

* How to start incorporating convalescence into everyday life 

* Exploring presenteeism, plateaus, and the stress bucket

* Learning to give yourself permission to rest

* Shifting your mindset when it comes to rest and recovery 

* How to convalesce at home

* Whether technology has affected our ability to convalesce…

…and much more.

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

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

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

Find me on Substack at natashalipman.substack.com.

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.

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?

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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

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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

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Subscribe to The Rest Room: https://natashalipman.substack.com/

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Follow me on social media:

https://twitter.com/natashalipman

https://instagram.com/natashalipman

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

“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.

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!

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.

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.

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”.

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.

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: