The Rest Room

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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

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

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:

• https://www.oldvictheatre.com/whats-on/2021/watch-at-the-theatre/a-christmas-carol-5


• https://www.oldvictheatre.com/your-visit/access/access-membership-2

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.

• https://www.theguardian.com/stage/2021/may/06/young-vic-to-livestream-all-future-productions-says-artistic-director


• https://www.mylondon.news/news/zone-1-news/disabled-woman-furious-gets-sat-21998580


• https://www.theguardian.com/stage/2021/oct/15/we-know-they-can-do-it-when-it-suits-them-theatre-became-more-accessible-during-covid-will-it-last

And here’s some access information for theatres in London.

• https://actdrop.uk/access/access_information


• https://www.visitlondon.com/things-to-do/whats-on/theatre/theatre-accessibility


• https://ablemagazine.co.uk/guide-to-accessible-theatres-in-london/#:~:text=It%20encompasses%20over%20230%20theatres,waves%20in%20the%20theatre%20industry.

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

How 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:

• https://www.oldvictheatre.com/whats-on/2021/watch-at-the-theatre/a-christmas-carol-5


• https://www.oldvictheatre.com/your-visit/access/access-membership-2

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.

• https://www.glaad.org/blog/glaads-where-we-are-tv-report-despite-tumultuous-year-television-lgbtq-representation-holds


• https://creativediversitynetwork.com/diamond/diamond-reports/the-fourth-cut/


• https://thehysteriacollective.com/2021/11/04/calling-cut-on-the-inaccessibility-of-the-film-industry/

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

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.

• https://www.ox.ac.uk/students/news/2020-12-07-what-its-study-oxford-student-chronic-illness


• https://blogs.ucl.ac.uk/discover-ucl/dealing-invisible-illness-university/


• https://www.whentaniatalks.com/attending-university-chronic-illness/


• https://www.gov.uk/disabled-students-allowance-dsa


• https://www.snowdontrust.org/


• https://www.lifeofpippa.co.uk/


• https://www.lifeofpippa.co.uk/product/university-and-chronic-illness-a-survival-guide-by-pippa-stacey/


• https://www.instagram.com/disabledmeals 


• http://instagram.com/equipmeot

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

In this (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

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

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

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

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