The Rest Room

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. 

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

“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

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

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

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

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

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

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

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

“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