Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, I’m chatting about World ME Day.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in! 

World ME Day takes place each year on 12th May. This year, the focus is around the fact that pushing harder with this condition, can make you sicker. The technical name for this feeling is sometimes shorted to PEM which stands for post-exertional malaise. 

Post-exertional malaise is something that everyone with ME experiences but what is it?

After any physical, emotional, or mental exertion, symptoms get worse. Prior to having ME/CFS or Long Covid, physical, mental or emotional exertion wouldn’t have been an issue, but PEM is a main symptom of ME. 

For me, too much noise, too many bright lights or strange and strong smells, could be enough to exhaust me when I was at my worst. And I would feel the impact about 2 days later. Initially it was hard to tell why I felt so bad especially when I hadn’t done anything that day or the day before, but I was, with the help of my family, able to spot the pattern. That then helped with planning things in future, and I knew what to expect when I chose to do more.

All of my symptoms, however, would worsen. Things would feel more intense. Lights would feel brighter, noise louder, smells would seem stronger, and my taste buds would change. 

This could last for days or weeks and would lead to a crash. Now, knowing this and having explained this to various doctors, you’d think that they would take it on board and realise that I was the expert in my own illness and how it impacted me. 

I like this quote from World ME Alliance co-chair and Solve M.E. CEO, Oved Amitay. It’s a reasonably long one but I want to cover it all.  It says, “Post-exertional malaise is a devastating symptom of both ME and Long Covid that is far too often disregarded or incorrectly managed by health care providers. PEM is a varying symptom that is challenging to recognise, and doing so requires intense listening to the person experiencing it. It is vital for health care professionals to identify PEM, as its presence changes the management advice a patient should be given and indicates that a diagnosis of ME should be considered. To avoid prolonging and intensifying the suffering of millions, providers must listen to and believe those who experience PEM.”

I can tell you from my own experience that wasn’t the case, and even the supposed expert doctor, would have me trying new things to see if it would help. It was like talking to a brick wall when...]]>

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, I’m chatting about World ME Day.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in! 

World ME Day takes place each year on 12th May. This year, the focus is around the fact that pushing harder with this condition, can make you sicker. The technical name for this feeling is sometimes shorted to PEM which stands for post-exertional malaise. 

Post-exertional malaise is something that everyone with ME experiences but what is it?

After any physical, emotional, or mental exertion, symptoms get worse. Prior to having ME/CFS or Long Covid, physical, mental or emotional exertion wouldn’t have been an issue, but PEM is a main symptom of ME. 

For me, too much noise, too many bright lights or strange and strong smells, could be enough to exhaust me when I was at my worst. And I would feel the impact about 2 days later. Initially it was hard to tell why I felt so bad especially when I hadn’t done anything that day or the day before, but I was, with the help of my family, able to spot the pattern. That then helped with planning things in future, and I knew what to expect when I chose to do more.

All of my symptoms, however, would worsen. Things would feel more intense. Lights would feel brighter, noise louder, smells would seem stronger, and my taste buds would change. 

This could last for days or weeks and would lead to a crash. Now, knowing this and having explained this to various doctors, you’d think that they would take it on board and realise that I was the expert in my own illness and how it impacted me. 

I like this quote from World ME Alliance co-chair and Solve M.E. CEO, Oved Amitay. It’s a reasonably long one but I want to cover it all.  It says, “Post-exertional malaise is a devastating symptom of both ME and Long Covid that is far too often disregarded or incorrectly managed by health care providers. PEM is a varying symptom that is challenging to recognise, and doing so requires intense listening to the person experiencing it. It is vital for health care professionals to identify PEM, as its presence changes the management advice a patient should be given and indicates that a diagnosis of ME should be considered. To avoid prolonging and intensifying the suffering of millions, providers must listen to and believe those who experience PEM.”

I can tell you from my own experience that wasn’t the case, and even the supposed expert doctor, would have me trying new things to see if it would help. It was like talking to a brick wall when trying to explain that pushing myself didn’t help me, it made me worse.

For people with ME, post-exertional malaise is a reality that can severely impact their daily life as well as the quality of that life.

It’s estimated that about half of people with long Covid are experiencing PEM and that means that millions more people are having to deal with and live with this very debilitating symptom. 

Before the COVID-19 pandemic, there were between 17 and 30 million people living with M.E. worldwide. But now there are about 65 million people living with long COVID, and half of those individuals are experiencing post-exertional malaise. This means the number of people living with M.E. has likely doubled over the past three years. Unfortunately, there is still no diagnostic test, cure or universally effective treatments for ME and that means that people could be living with this for life.

So what can you do to help bring this condition and PEM to the forefront of people’s minds?

If you are able, please do share your experience of post-exertional malaise so that others, the public and professionals alike, can learn from you. 

Please use the hashtag #LearnFromME when sharing.

Signpost your GP, physiotherapist, therapist or other health professional to Action for ME’s recently updated CPD learning module and podcast series as part of their Learn about ME project.

Use the World ME Alliance’s online templates and resources to create your own poster and social media content and/or pitch your story to your local newspaper or radio station.

If you are over the age of 16 and you are based in the UK, you can take part from home in the DecodeME study. This study hopes to reveal the tiny differences in a person’s DNA that can increase their risk of developing ME/CFS and building a greater understanding of the underlying mechanism of the condition.

Please do like, share and subscribe to this podcast and pass it on to your friends, family and healthcare professionals. Let’s help spread education and information and help others #LearnFromME.

Let me give you some links for these sites – I’ll also link to them in the show notes below this episode.

Ok, first of all, I mentioned Action for ME and you’ll find their website and information about the CPD module at www.actionforme.org.uk

Next up is the World ME Alliance and they can be found at www.worldmealliance.org

You will find more information about the DecodeME study, including the initial questionnaire to see if you meet the required criteria by going to www.decodeme.org.uk

And you can find more information about me and my ME story on my website at www.rhonabarton.co.uk

That’s it for today everybody.  

I’d love to hear your thoughts on this and find out what you’re up to, if your able, for World ME Day so feel free to reach out via any of my social media links or my website. You’ll find me on Facebook & Instagram as @RhonaBartonCoaching and on Twitter as @RhonaBCoaching.

I’m a proud founding member of the Emmeline podcast network and you can find out more about the Emmeline network by going to www.emmelinenetwork.com

Thank you for listening. Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

I hope today’s a good day for you. Bye for now. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, I’m chatting to Jo Bell. Jo is an author, coach and the founder of Write to Thrive and through her group workshops and 1:1 programmes, she’s helped hundreds of people find clarity, confidence and self-compassion.

I first came across Jo via Instagram. I’d seen her posting some writing prompts and, as a writer and author, these piqued my interest. As I continued to see her prompts in my news feed, they began to resonate with me and I took to jotting down some thoughts in relation to these.

Earlier this year, I saw that Jo was running a 3-day Self-Compassion challenge. This was something that I’d been curious about, so I thought, “what the heck, why not!” and I signed up. In typical Jo style, as I’ve come to learn, she under promised and over-delivered! The 3 days, turned into 4 as she added on a bonus session for us and the private Facebook group for the challenge really got people chatting.

I discovered in this short challenge that, although I’m not bad at taking time for myself, I’ve dropped back into old habits of trying to be everything to everyone. I’ve also found out that, when I have my internal monologue running in my mind, I’m not always kind in the way I speak to myself. In fact, I’m quite harsh and it’s something I want to change.

So, when the opportunity came up to join Jo’s 8-week Luminous course, I knew I wanted in.

I’m thrilled that Jo has agreed to have a chat with me and tell me more about her, her experience and her passion for self-compassion. We jumped on a Zoom call earlier and I hope you enjoy the conversation.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in! 

Enjoy the call!

I’d love to hear your thoughts on this so feel free to reach out via any of my social media links or my website. You’ll find me on Facebook & Instagram as @RhonaBartonCoaching and on Twitter as @RhonaBCoaching.

You can find out more about Jo and the work she does by visiting her Instagram as @writeandthrive, her Facebook as @writethrive and her website at www.joannebell.org and you can sign up to her free newsletter with writing prompts via https://writetothrive.substack.com

I’m proud to be a founding member of the Emmeline Podcasting Network and you can find out more about the Emmeline network by going to www.emmelinenetwork.com

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, I was invited onto the Podcasting for Business podcast with Lynsay Gould. Lynsay is a fellow podcaster, entrepreneur and Founder of the Emmeline podcasting network.  We took some time to chat about this year’s International Women’s Day topic of Equity.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in!

Enjoy the recording!

That’s it for today everybody.  I hope you enjoyed this episode. 

I’d love to hear your thoughts on this so feel free to reach out via any of my social media links or my website. You’ll find me on Facebook & Instagram as @RhonaBartonCoaching and on Twitter as @RhonaBCoaching.

You can find Lynsay’s podcast, Podcasting for Business, on Spotify, Apple Podcasts or via your usual podcast provider.

You can find out more about the Emmeline network by going to www.emmelinenetwork.com

You can get links to each in my show notes also.

Thank you for listening. Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

I hope today’s a good day for you. Bye for now. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, I’m going to be chatting about Holiday time!

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in!

One of my favourite times of the year is holiday time. I’ve very lucky to be able to take two holiday’s a year including one in our motorhome. That hasn’t always been the case, however. Growing up, we never did foreign holidays. We might take a short break somewhere in the UK but mostly we had time at home and explored our local area. It’s only in the past 15 years or so that I’ve been a position to be able to afford to travel overseas. Sometimes that’s been for a holiday and sometimes it’s been for a work trip. 

I love the build-up to a holiday or a break away. Getting out my bag – am I going only hand luggage, or do I need to pack a suitcase? I’ve been away for almost 6 weeks with only hand luggage so selecting a suitcase is a big deal for me! What is the weather likely to be when I’m away? That determines most of my packing choices – I usually end up opting for layers so I can throw more on or take them off as the day unfolds. I’ve never been a girlie girl, so don’t give a whole lot of thought to make-up, dresses, doing more than washing and drying my hair or shoes so I usually get through my packing really quickly. In fact, I’m pretty much a jeans, t-shirt and trainers sort of person and the less time I have to spend picking an outfit, the better it is for all involved! If I can’t get away with a smart-ish top, clean trainers and jeans for going out when on holiday, chances are, I’m not going to be interested in going to wherever it is that’s been suggested. Ultimately, I just want to be comfy, practical and wear what I like. So getting ready for a break away gives me a chance to select my favourite things for wearing and keeping the baggage weight down as much as possible. I gain quite a sense of achievement when I have everything I believe I need in one bag plus whatever I’m using as a day-to-day handbag when we’re away (and that’s, more often than not, a backpack!).

But I also love the pre-planning. You know, the thinking about the place you’re going and then planning out some of the activities you’d like to do or places you’d like to visit when there. I also enjoy planning out the books I’ll take with me for reading, the podcasts I’m going to listen to and selecting a new notebook to take with me for the writing bug that’s sure to hit mid-break. 

The books that I take with me have changed in recent years. I used to have to limit myself to 2 or 3 for a week away as there just wasn’t room in my bag to take more. However, about 10 years ago, I treated myself to an eBook reader – thank goodness for Christmas sales! And WOW, what a game changer! I will...]]>

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, I’m going to be chatting about Holiday time!

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in!

One of my favourite times of the year is holiday time. I’ve very lucky to be able to take two holiday’s a year including one in our motorhome. That hasn’t always been the case, however. Growing up, we never did foreign holidays. We might take a short break somewhere in the UK but mostly we had time at home and explored our local area. It’s only in the past 15 years or so that I’ve been a position to be able to afford to travel overseas. Sometimes that’s been for a holiday and sometimes it’s been for a work trip. 

I love the build-up to a holiday or a break away. Getting out my bag – am I going only hand luggage, or do I need to pack a suitcase? I’ve been away for almost 6 weeks with only hand luggage so selecting a suitcase is a big deal for me! What is the weather likely to be when I’m away? That determines most of my packing choices – I usually end up opting for layers so I can throw more on or take them off as the day unfolds. I’ve never been a girlie girl, so don’t give a whole lot of thought to make-up, dresses, doing more than washing and drying my hair or shoes so I usually get through my packing really quickly. In fact, I’m pretty much a jeans, t-shirt and trainers sort of person and the less time I have to spend picking an outfit, the better it is for all involved! If I can’t get away with a smart-ish top, clean trainers and jeans for going out when on holiday, chances are, I’m not going to be interested in going to wherever it is that’s been suggested. Ultimately, I just want to be comfy, practical and wear what I like. So getting ready for a break away gives me a chance to select my favourite things for wearing and keeping the baggage weight down as much as possible. I gain quite a sense of achievement when I have everything I believe I need in one bag plus whatever I’m using as a day-to-day handbag when we’re away (and that’s, more often than not, a backpack!).

But I also love the pre-planning. You know, the thinking about the place you’re going and then planning out some of the activities you’d like to do or places you’d like to visit when there. I also enjoy planning out the books I’ll take with me for reading, the podcasts I’m going to listen to and selecting a new notebook to take with me for the writing bug that’s sure to hit mid-break. 

The books that I take with me have changed in recent years. I used to have to limit myself to 2 or 3 for a week away as there just wasn’t room in my bag to take more. However, about 10 years ago, I treated myself to an eBook reader – thank goodness for Christmas sales! And WOW, what a game changer! I will never not love a physical copy of a book but, for travel, I’m hooked on my eBook reader! I’m not limited to the number of books I can take with me now. It’s one of the first items that goes into my backpack – fully charged and with a wide selection of reading options!

I’ll also download a couple of audiobooks to go alongside my podcast selections. I really enjoy having something to listen to in the motorhome when we’re driving or, once we’re parked up, listening to something whilst cooking. 

I don’t often do that when I’m at home and, certainly during one of our holidays when we meet up with friends and family, I rarely have the chance to listen to podcasts or read, so it’s a treat when I’m away. 

It’s something that’s a change from the usual day-to-day life. And it’s lovely to have that complete break from the usual routine. 

The reason I mention this is because, whilst it’s lovely to be away from home for a break, the problem with ME/CFS and Long Covid, is that they don’t take a break. They don’t stop to allow us to have time away to join our friends and family for a proper holiday. It doesn’t stop. 

For some people, remissions may occur, and their symptoms may lessen to the point that they can have a more “normal” time of things, but these are not predictable and not guaranteed. They are not necessarily within our control. And, unfortunately, it doesn’t happen for everyone.

So we don’t get a holiday or a break from ME/CFS or Long Covid but the people who look after us, who care for us, can and should take some time away. We need them to be rested so that we can reach out to them when we need help and support. But for them to take a break, somebody else needs to step in to look after us. 

That can bring additional drains on our energy levels and can be a stressful experience which could exacerbate symptoms. 

It’s because these conditions don’t discriminate that means that it’s difficult for us to plan and pre-empt how we might be impacted by changes such as this. 

What can you do when you’re not the one getting the break away?

Well, if you’re able, sit with your family or carer and discuss the plan that needs to be in place for when they’re away. Who is going to be taking care of you? Can you meet them in advance? Can you or your full-time carer talk the new person through your needs and requirements? Can this new person shadow your full-time carer for a few days to learn the routine and get to know you?

Or can you consider the likes of respite care if there’s something nearby?

Think about the absolutes or the “must have’s” that make up your daily life – if those were the only things taken care of whilst your full-time carer was away, would it be sufficient for you? 

And if you are going on a holiday or break away, have a look at things that could make travel a little easier for you. 

If you’re going on a plane, can you arrange priority parking, fast track security and boarding?

If travelling by train, is there a quiet carriage you can book? Also, do they offer an option to bring food to you to save you having to go to the buffet car? 

Would taking noise-cancelling headphones or a neck pillow give you some comfort for the trip?

Do you need to think about using a wheelchair or crutches to help you get about in a new environment?

Can you break the travel for the trip up to allow for rest time?

And, if you’re heading somewhere with sunshine, double check any medications you’re taking with your doctor or pharmacist as some may lead to photosensitivity and you might need to up the SPF in your sunscreen.

All of this and then you have your holiday to get through and still get home! It truly is exhausting for healthy people so please go easy on yourself if you find it all too much.

Remember, healthy people are likely to need a day or so to recover from travel and deal with getting the house in shape/laundry done/food shop in etc so don’t underestimate the knock-on impact that coming home may have on you too. The good news is there’s absolutely no rush to get back to your home routine. Be kind to yourself and rest when you need to.

Let’s think about some key take aways from this episode:

1.    Holidays or breaks away can be a very welcome change from the day-to-day routine.

2.    Unfortunately, ME/CFS and Long Covid don’t care that we want a holiday and they stay with us wherever we go.

3.    If your carer goes on holiday, you may need to make a plan to help the person stepping in to take care of you.

4.    If you are going on holiday, take some time to think about the ways you may be able to make the travel a little easier for yourself.

5.    When you are back home with your full time carer, remember that not everything needs to be done in an instant. Give yourself recovery time.

That’s it for today everybody.  I hope you have found this episode helpful and that, if you are planning a break away, it has given you some things to consider. 

I’d love to hear about your plans, if you’re making any, so feel free to reach out via any of my social media links or my website. You’ll find me on Facebook & Instagram as @RhonaBartonCoaching and on Twitter as @RhonaBCoaching.

You can download your FREE Activity tracker by heading to www.rhonabarton.co.uk/links

Thank you for listening. Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

I hope today’s a good day for you. Bye for now. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, I’m going to be chatting about how things are going so far in 2023!

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in!

How are you getting on with your plan for 2023? I’ll be honest, mine went off track a few days into the New Year. I uploaded, via my social media scheduler, a post about goals and motivation and I was jumped on by people in the ME community who thought I was “having a go” at them for not “trying” or not being motivated enough. I was accused of spreading toxic positivity and of trying to take advantage of our community. I was told that I didn’t know what I was talking about and that I clearly didn’t know anything about ME or what it was like to live with. 

Now, initially I made the mistake of trying to be rational with the first couple of comments. I considered taking the post down. I thought about editing the post, but I’d pretty much reached the character limit. The notifications for this one Social Media site went crazy! It’s the most interaction I’ve had on a post, and it knocked me for six. What had I done wrong? I began to tailspin, and I read every comment and took them all to heart. 

I had a call later that evening with my Podcast coach and our Mastermind group and they received the brunt of my “I’m so over Social Media” rant! They asked me questions and challenged my responses as any good friend, let alone coach, would do. But I was in the middle of the yuckiness of it all and I really didn’t want to be facing what I was being asked. So instead, I listened to what they were saying, and I took some notes so that I could reflect on things when the time felt right for me. But what surprised me from this situation was that I, at 45 years old, was a recipient of cyber bullying. That’s what it was. And I was shocked. 

People who didn’t know me, didn’t know my story, felt comfortable to call me all sorts online. All because they disagreed with one hashtag on a post. They didn’t come to listen to the podcast. They didn’t venture to my website to find out more, they just turned into angry keyboard warriors. 

I let my social media schedular run the rest of the scheduled posts and I didn’t edit any of them or change their pre-set hashtags. I spent days thinking about and reflecting on what these comments said and trying to weigh up what, if anything, these may have been correct about. I thought about the questions that my Podcast coach and Mastermind group had posed. After all of this, I decided that I needed to take a break from social media. I needed to stop and reset my brain. So I took 4 weeks off and had a holiday. I made a point of not...]]>

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, I’m going to be chatting about how things are going so far in 2023!

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in!

How are you getting on with your plan for 2023? I’ll be honest, mine went off track a few days into the New Year. I uploaded, via my social media scheduler, a post about goals and motivation and I was jumped on by people in the ME community who thought I was “having a go” at them for not “trying” or not being motivated enough. I was accused of spreading toxic positivity and of trying to take advantage of our community. I was told that I didn’t know what I was talking about and that I clearly didn’t know anything about ME or what it was like to live with. 

Now, initially I made the mistake of trying to be rational with the first couple of comments. I considered taking the post down. I thought about editing the post, but I’d pretty much reached the character limit. The notifications for this one Social Media site went crazy! It’s the most interaction I’ve had on a post, and it knocked me for six. What had I done wrong? I began to tailspin, and I read every comment and took them all to heart. 

I had a call later that evening with my Podcast coach and our Mastermind group and they received the brunt of my “I’m so over Social Media” rant! They asked me questions and challenged my responses as any good friend, let alone coach, would do. But I was in the middle of the yuckiness of it all and I really didn’t want to be facing what I was being asked. So instead, I listened to what they were saying, and I took some notes so that I could reflect on things when the time felt right for me. But what surprised me from this situation was that I, at 45 years old, was a recipient of cyber bullying. That’s what it was. And I was shocked. 

People who didn’t know me, didn’t know my story, felt comfortable to call me all sorts online. All because they disagreed with one hashtag on a post. They didn’t come to listen to the podcast. They didn’t venture to my website to find out more, they just turned into angry keyboard warriors. 

I let my social media schedular run the rest of the scheduled posts and I didn’t edit any of them or change their pre-set hashtags. I spent days thinking about and reflecting on what these comments said and trying to weigh up what, if anything, these may have been correct about. I thought about the questions that my Podcast coach and Mastermind group had posed. After all of this, I decided that I needed to take a break from social media. I needed to stop and reset my brain. So I took 4 weeks off and had a holiday. I made a point of not posting anything online and I took the apps off my phone so that if I wanted to lurk on any platforms, I’d have to either download them again or go via the respective website.

It was so refreshing! Not only was I able to enjoy time on holiday with friends and family, but I didn’t miss the constant barrage of filtered online ideals. And I learned a few things too!

Unlike the people who came after me, if I see a post I don’t agree with, I scroll past it. I know that I don’t believe the same things as the original poster and I know that, even though I think they are wrong, they believe what they are saying is correct. And it makes sense to them based on their experiences. I don’t feel the need to attack them. I know that I can just move past it without having to engage as its online. It’s not in my life and I’m not having to live with that individual.

I know that the people who commented on my post are not the people who listen to my podcast. They are not interested in finding out anything about me or my own experiences.

I know that they are probably very angry and frustrated that their health isn’t where they would like it to be and that they are searching for answers wherever they can find them. I know I don’t have the answers they are looking for. 

I also learned that the reason I felt so attacked from the comments, is because I was going through some self-doubt. I was in the midst of many incomplete things in the run up to Christmas and the New Year and felt very unsettled. Without really knowing it, I’d let things get on top of me. The worry about all of these meant that I wasn’t sleeping well and on top of that, I wasn’t eating properly. It all built up and this was the straw that broke the camel’s back. I knew that I had to take a break. I knew I was beginning to feel overwhelmed with the concern about what I would do in the New Year.

So I stopped. I stopped everything that wasn’t just the basics that I needed to make me feel happy and fulfilled. It took a couple of days for things to slow down for me but I began to plan out my days with the “must do” things. This then gave me time back to do some meal planning, shopping and cooking and I began to sleep easier.

I reset myself. My holiday gave me time to think about what I want and how I want to carry on with 2023.

Let’s think about some key take aways from this episode:

1.    Not everybody sees things the same way we do.

2.    We are all fallible.

3.    Sometimes even when we think we have things figured out, we still need to reset ourselves.

4.    You’re not going to be everybody’s cup of tea.

5.    Social Media isn’t always social!

That’s it for today everybody.  I hope you have found this episode helpful and can understand why I have been absent for the past month or so. 

I’d love to hear how your year is going, so feel free to reach out and let me know. You’ll find me on Facebook and Instagram as @RhonaBartonCoaching and on Twitter as @RhonaBCoaching.

Thank you for listening. Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

I hope today’s a good day for you. Bye for now. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, the first for 2023, I’m going to be chatting about intentionally planning your year with ME/CFS and Long Covid.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in!

First of all, Welcome to 2023! Happy New Year to you all! I hope you managed to enjoy the transition from 2022 into 2023. I stayed up to hear the Bells at midnight, then headed to bed! I don’t function very well on lack of sleep and I had a family gathering on later in the day, but I do like to ring in the New Year. I usually make it to about quarter past midnight before deciding that sleep is much more inviting than fireworks or TV shows. What about you? Did you manage to see in the New Year? Or were you tucked up, all cosy and warm, in the land of nod?

It's easy to get caught up in the excitement of the festive period and, in having a good time, go a little overboard. I’ve done it myself so if it’s happened to you, don’t feel bad about it. Don’t blame yourself. You’ve been making memories with family and friends and that’s lovely to look back on.

Now that we’re into the New Year, lots of people may be start out with great intentions and may have made New Year Resolutions. I’m not a New Year Resolution person! I don’t believe you have to wait for the New Year to decide to make a change. I don’t believe you need to jump on the bandwagon with the latest trend just because it’s a New Year. I do believe, that if you’d had something in your mind for a while that you’d like to try, then get started and try it regardless of the day or date.

And that’s what this week’s episode is about. It’s about thinking about what we’d like to work towards in 2023 and intentionally planning for it. It’s about planning the year according to what is important to you.

I know it’s easy to be influenced by what others are doing and what is trending but take some time to consider if what they are doing is right for you.

Have you ever been asked what your 5-year plan is? It’s thought that it takes about 5 years to achieve tangible long-term success in anything such as building a career or a sustainable business. Nobody is an overnight success! We just don’t see the years of hard work that goes into overnight successes!

But how do they do it? And how can we do it?

The usual way to approach a plan is to break it down into goals. There are short-term goals, medium term goals and longer-term goals. New Year Resolutions set in our minds, the idea of a year’s worth...]]>

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, the first for 2023, I’m going to be chatting about intentionally planning your year with ME/CFS and Long Covid.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in!

First of all, Welcome to 2023! Happy New Year to you all! I hope you managed to enjoy the transition from 2022 into 2023. I stayed up to hear the Bells at midnight, then headed to bed! I don’t function very well on lack of sleep and I had a family gathering on later in the day, but I do like to ring in the New Year. I usually make it to about quarter past midnight before deciding that sleep is much more inviting than fireworks or TV shows. What about you? Did you manage to see in the New Year? Or were you tucked up, all cosy and warm, in the land of nod?

It's easy to get caught up in the excitement of the festive period and, in having a good time, go a little overboard. I’ve done it myself so if it’s happened to you, don’t feel bad about it. Don’t blame yourself. You’ve been making memories with family and friends and that’s lovely to look back on.

Now that we’re into the New Year, lots of people may be start out with great intentions and may have made New Year Resolutions. I’m not a New Year Resolution person! I don’t believe you have to wait for the New Year to decide to make a change. I don’t believe you need to jump on the bandwagon with the latest trend just because it’s a New Year. I do believe, that if you’d had something in your mind for a while that you’d like to try, then get started and try it regardless of the day or date.

And that’s what this week’s episode is about. It’s about thinking about what we’d like to work towards in 2023 and intentionally planning for it. It’s about planning the year according to what is important to you.

I know it’s easy to be influenced by what others are doing and what is trending but take some time to consider if what they are doing is right for you.

Have you ever been asked what your 5-year plan is? It’s thought that it takes about 5 years to achieve tangible long-term success in anything such as building a career or a sustainable business. Nobody is an overnight success! We just don’t see the years of hard work that goes into overnight successes!

But how do they do it? And how can we do it?

The usual way to approach a plan is to break it down into goals. There are short-term goals, medium term goals and longer-term goals. New Year Resolutions set in our minds, the idea of a year’s worth of focus time. This can be both good and bad. It gives us a timeframe to work with, but it can also limit our thinking to just 12 months. This is usually seen as a short-term timeframe although for people with ME/CFS and Long Covid – a year is a long time!

So let’s think about 2023 as our main focus knowing that our goals can roll into 2024 and beyond. To do this though, we have to accept that things can take longer than we anticipate – possibly due to our fluctuating health but also because, generally, people underestimate how long things take!

Whether it’s a 5-year plan, a 1-year plan or something in between, there are some steps to take to get things in order.

Start by thinking about and taking note of the ideas that come to mind. If you’ve listened to last week’s episode, you may well have been reflecting on some areas that I suggested. This in turn, may have sparked some ideas or thoughts about things you’d like to dig into in 2023. So, write these ideas down – I’ll even help you out by popping a link to my notebooks in the show notes! Afterall, you’ll need somewhere to jot down your plans!  

Decide on your life goals. This will help you think and plan with intention. You just have to decide what you want. Now, don’t panic. This can seem like a huge step but the truth is, a lot of people don’t know what their life goals are! So if you don’t have this figured out, don’t worry. People can worry about being wrong or picking the wrong thing and, as humans, we want to be right as it’s comfortable and easy. But what’s wrong to one person, could be a 100% fit for you! People worry about being relatable and not standing out from the crowd or being singled out by their out of the ordinary passion, but you don’t want to end up being a copycat or doing something that doesn’t feel right for you. Put some time in to thinking about what you want over the next year (or 5!). 

Consider how challenging each item is and how important they are for you. You could even give them a score for challenge out of 5 and a score for importance out of 5. For example: If your goal is to write a book, you might deem this as your highest priority goal and so it’s score would be a 1 for importance as it’s the highest priority for you. In terms of how much of a challenge this would be for you, you may already be a keen writer but are restricted in your computer time due to cognitive difficulties and so you note this as a challenge score of 5. It’s very important but it’s also very challenging. When you know the challenge you face and how important each goal is to you, breaking them down into smaller tasks or activities will become easier.

The next step is to break your goals down. That may be for 2023 or it may be over the next 2 or 3 years. Only you will know what timescale is manageable for you given your current commitments and energy levels. 

Now, let’s keep our example of writing a book. Let’s also think about some of the stages that writing a book involves. It’s not just getting the words down on paper. There’s also time needed to edit the manuscript. Time required to write to potential publishers. Then there’s rewrites based on the feedback you receive. You may also want to consider what the finished book will look like so time will be needed to consider cover art and if it’s a hardback or paperback etc etc etc. That’s a lot of things to be done whilst also researching, collating and writing your book. If you list out all of the stages required, work out the challenge score and the priority score, you’ll soon see that your big goal of Write a Book, has been broken down into smaller more manageable parts. Parts that you can schedule into your day, week or month based on your capabilities. 

The next challenge you face is working out your available time and striking a balance between achieving your goals and maintaining your baseline activity levels. Remember that it’s easy to fill our 24hrs on a daily basis but the question becomes, how do you fit in time for your goals in the middles of life’s other demands?

If you have been using an activity tracker, like the free one that’s available via my website, you may have already spotted trends for yourself and can see where you could slot in some time to work towards your goals. 

We each have 168hrs in a week but how we use that time will be based on us as individuals. When you work out how much time you spend each week on your usual activities (which will include things such as sleep and self-care and may include rest time, reading time, family time etc), you will be able to see how much time you have for writing your book. Please keep in mind that you may experience blips in your health and your timeframes may need to be adjusted. At least you have a goal to work towards that’s just for you!

Let’s think about some key take aways from this episode:

1.    2023 is upon us and it gives us the opportunity to consider our goals for the year ahead or even longer – if we want to!

2.    Not everybody knows what their purpose in life is or has life goals so don’t worry if you’re one of them. You’re normal!

3.    If you are planning out your year (or the next 5 years!), keep in mind that people generally underestimate how long it takes to get things done. Allow some slippage time in your plans.

That’s it for today everybody.  I hope you have found this episode helpful and that, if you are planning out your year, it has given you some guidance on how to do so. As a reminder, I’ve popped a link to my Notebooks in the show notes but you can also find them by heading to my website.

I’d love to hear about your plans, if you’re making any so feel free to reach out via any of my social media links or my website. You’ll find me on Facebook, Instagram and Pinterest as @RhonaBartonCoaching and on Twitter as @RhonaBCoaching.

You can download your FREE Activity tracker by heading to www.rhonabarton.co.uk/links and you can find a link to my notebooks by clicking on the Publications link.

Thank you for listening. Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

I hope today’s a good day for you. Bye for now. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, the last one for 2022, I’m going to be chatting about our Reflections on 2022 whilst living with ME/CFS or Long Covid. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in!

I hope, if you celebrated, you had a lovely Christmas. As 2022 draws to a close, a lot of people begin to reflect on the past year, but what does that actually mean? How do you do it and why?

For people with ME/CFS and Long Covid, there can be a large amount of time to think. Especially if you are going through a flare up of symptoms, so we’re probably very skilled in reflection.

Reflecting on the past year lets us look at the highs and lows and evaluate them in a way that, we hope, will improve our overall performance in the next year. It gives us the chance to feedback to ourselves about the lessons we have learned and think about changes we may wish to make in the future.

But why should you even bother thinking back over the past year? It’s gone, you can’t change it.

What you can do though, is learn from it. You can think about patterns of behaviour and the outcome of that behaviour on your health, relationships, career, finances etc.

Reflecting can give you an overview of the key occasions that have taken place during the year as well as the steps you took at that time and the outcome or reaction. You may also spot a trend in your reactions. This then allows you to consider how you can deal with similar situations in future. Or, even better, it will help you understand WHY you did something.

One key to reflection is doing it in a productive way.

How do you look back at the past year and draw conclusions that could improve your way of living in the new year?

If we start with some basics, you could just grab a pen, a notebook and some quiet time and start writing. Give yourself permission to be honest about it all. Be direct with yourself without judging yourself harshly. Do your best to remove any barriers or excuses that may stop you from putting in the work. Nobody is going to be reviewing your work. It’s not going to go on display anywhere. This is for you. If you choose to share with others, that’s up to you.

If a pen and paper is too much, consider using a voice recording app on your phone or even a video recording app. Whatever works for you. 

If you’re not sure...]]>

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, the last one for 2022, I’m going to be chatting about our Reflections on 2022 whilst living with ME/CFS or Long Covid. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you’re listening now. 

Ok, let’s jump straight in!

I hope, if you celebrated, you had a lovely Christmas. As 2022 draws to a close, a lot of people begin to reflect on the past year, but what does that actually mean? How do you do it and why?

For people with ME/CFS and Long Covid, there can be a large amount of time to think. Especially if you are going through a flare up of symptoms, so we’re probably very skilled in reflection.

Reflecting on the past year lets us look at the highs and lows and evaluate them in a way that, we hope, will improve our overall performance in the next year. It gives us the chance to feedback to ourselves about the lessons we have learned and think about changes we may wish to make in the future.

But why should you even bother thinking back over the past year? It’s gone, you can’t change it.

What you can do though, is learn from it. You can think about patterns of behaviour and the outcome of that behaviour on your health, relationships, career, finances etc.

Reflecting can give you an overview of the key occasions that have taken place during the year as well as the steps you took at that time and the outcome or reaction. You may also spot a trend in your reactions. This then allows you to consider how you can deal with similar situations in future. Or, even better, it will help you understand WHY you did something.

One key to reflection is doing it in a productive way.

How do you look back at the past year and draw conclusions that could improve your way of living in the new year?

If we start with some basics, you could just grab a pen, a notebook and some quiet time and start writing. Give yourself permission to be honest about it all. Be direct with yourself without judging yourself harshly. Do your best to remove any barriers or excuses that may stop you from putting in the work. Nobody is going to be reviewing your work. It’s not going to go on display anywhere. This is for you. If you choose to share with others, that’s up to you.

If a pen and paper is too much, consider using a voice recording app on your phone or even a video recording app. Whatever works for you. 

If you’re not sure where to start, some areas you may wish to consider are:

Your health – physical, emotional, spiritual, mental

Your Family – partner, parents, kids, pets

Love life

Career

Education – formal, informal & personal development

Things you are grateful for

Consider what the best thing that happened to you this year in each area was.

What about your biggest achievement?

What about things that didn’t go according to plan? Think about the things that were out of your control.

Did you start the year with a list of goals? How did you do in terms of achieving them?

I’m not one for New Year Resolutions, but if you are, how did you get on with them this year?

Once you’ve got your highlights for the year noted, take some time to look in more detail at them.

Identify what you have achieved and try to narrow down the steps you took to get to that successful end.

Consider those items you didn’t achieve. Do you still want to try and reach them in 2023? If so, what will you do differently? 

List the lessons you have learned, the mistakes you keep making, the behaviours or patters you have followed. Decide what you want to keep and take with you into 2023. 

Don’t shy away from any of the negative emotions or experiences. It’s normal for people to have a mix of highs and lows as they go through life so don’t be worried if you have this showing up as you reflect. 

Reflection can be hard to get started so don’t try to tackle too much at once. Perhaps just look at one area to begin with and dig into that. The good news is, this is an exercise you can do as often as you would like so there’s no need to rush and get it all done by the end of 2022!

Let’s think about some key take aways from this episode:

1.    Reflecting on the year you have had can help you face the New Year with a clearer mind.

2.    Breaking the year down into each month and considering your highs and lows for each, could be a more management task that dealing with the full year all at once.

3.    You don’t need to share your reflections with anybody else.

4.    You don’t even need to reflect if you don’t want to.

That’s it for today everybody.  I hope you have found this episode helpful and that, if you choose to reflect on 2022, it has given you some guidance on how to do so. 

I’d love to hear how you have found reflecting on your year so feel free to reach out via any of my social media links or my website.

You can still download your FREE copy of my Activity tracker by heading to www.rhonabarton.co.uk/links. 

Whilst you’re there, you can head to my media page for more information about me and my story. 

Thank you for listening. Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

I hope today’s a good day for you and all the very best for New Year. See you in 2023! Bye for now. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting about the gift you’ll give yourself this Christmas. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

In last week’s episode, we spoke about planning for family gatherings and with Christmas fast approaching, I’ve been putting up my decorations, delivering Christmas presents and preparing for visitors arriving. Food has been ordered, pathways have been cleared of snow and Christmas tunes have been pulled together for a playlist.

How are you getting on with your Christmas plans? 

Have you finished your gift buying?

Got everything wrapped and delivered?

Have you made arrangements with any visitors to have them bring a dish for the meal or stay and clean up afterwards?

What would make this year’s celebrations ideal for you given your current circumstances?

Whilst I feel like I’m all organised, I’ve finally got time to stop to think about what I’m going to give myself for Christmas.

Have you done that yet?

Now, socks, pyjamas and chocolates are lovely and always welcome, but things haven’t been all smooth sailing this year. So, with that in mind, I’ve come up with a few things that I’m considering gifting myself with this year. 

Number 1 on my list is Rest! I keep reminding myself that I don’t have to do everything. Running around and burning myself out is not going to prove anything to myself or anyone else and it’s not needed. I intend to schedule rest time for myself not just over the festive period but into 2023. To that end, I have already put holiday time into my diary right up until July 2023! 

Kindness is next. I’ve spoken about this a few times and that’s because it’s important – it is for me anyway. Self-Compassion and Self Kindness is a gift that keeps on giving and, for that reason alone, I’m building more of this into the end of 2022 and into 2023. Whether that is accepting myself – flaws and all – practicing patience and extending niceties to others, taking breaks during my working day, eating well, exercising or prioritising my sleep schedule, I’ll be doing my best to keep on top of this one.

Embracing failure. Life doesn’t always go according to plan and, as frustrating as that can be, I’m going to try looking at these...]]>

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting about the gift you’ll give yourself this Christmas. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

In last week’s episode, we spoke about planning for family gatherings and with Christmas fast approaching, I’ve been putting up my decorations, delivering Christmas presents and preparing for visitors arriving. Food has been ordered, pathways have been cleared of snow and Christmas tunes have been pulled together for a playlist.

How are you getting on with your Christmas plans? 

Have you finished your gift buying?

Got everything wrapped and delivered?

Have you made arrangements with any visitors to have them bring a dish for the meal or stay and clean up afterwards?

What would make this year’s celebrations ideal for you given your current circumstances?

Whilst I feel like I’m all organised, I’ve finally got time to stop to think about what I’m going to give myself for Christmas.

Have you done that yet?

Now, socks, pyjamas and chocolates are lovely and always welcome, but things haven’t been all smooth sailing this year. So, with that in mind, I’ve come up with a few things that I’m considering gifting myself with this year. 

Number 1 on my list is Rest! I keep reminding myself that I don’t have to do everything. Running around and burning myself out is not going to prove anything to myself or anyone else and it’s not needed. I intend to schedule rest time for myself not just over the festive period but into 2023. To that end, I have already put holiday time into my diary right up until July 2023! 

Kindness is next. I’ve spoken about this a few times and that’s because it’s important – it is for me anyway. Self-Compassion and Self Kindness is a gift that keeps on giving and, for that reason alone, I’m building more of this into the end of 2022 and into 2023. Whether that is accepting myself – flaws and all – practicing patience and extending niceties to others, taking breaks during my working day, eating well, exercising or prioritising my sleep schedule, I’ll be doing my best to keep on top of this one.

Embracing failure. Life doesn’t always go according to plan and, as frustrating as that can be, I’m going to try looking at these instances as chances to learn something new. And as we say in Scotland, what’s for you won’t go by you. So maybe there’s a reason behind why things go wrong from time to time. 

A digital detox. Social Media and being online in general can be exhausting and it takes time away from in person activities for me. I’ll be giving myself a break so that I can disconnect and clear my head for a while. That’s the intention anyway, let’s see how it works out and, if it does, I’m intending to build it regularly into my year.

Forgiveness. This one’s a work in progress for me and ties to my perfectionism (also a work in progress!). I know I struggle to find a balance between holding myself accountable and beating myself for things not being 100% perfect so, I’m considering letting go of any guilt I may feel around the imperfections and seeing what happens!

Self talk. I know that I have a pretty consistent chatter that goes on in my head. I’ve a busy brain and it’s not always helpful information. So, with that in mind, another thing I’m considering is revising the way I talk to myself. Taking more control over that internal chatter. 

Mindfulness.  I know that this seems to be an “in” thing at the moment and I’ve tried mindfulness before. It didn’t go well – I just became impatient at not “getting” it quickly enough … which I suppose is actually more reason for me to try it again! But I’m also talking about things like listening with intent when others are speaking; being patient and accepting different views with the connections I already have in my life.

Spa Days with my niece! Ok, so far the gifts that I’m considering are all pretty much free and do-able with some practice and some consistency. This one is very much about being indulgent and having some fun. I try to visit my family at least once a month but I don’t always get time with my niece due to her schedule – she’s probably the busiest out of all of us! I’m hoping, selfishly, that by booking in a couple of spa days in 2023, I’ll be able to spend some time with her, have a good giggle and embrace a couple of other gifts such as kindness, rest and mindfulness. I’m also likely to add in an extra wee gift of afternoon tea and cake!

Christmas for me is about giving and that means giving to myself as well as others. In putting my thinking into this episode, I’m holding myself accountable for the actions I take in 2023 and whether or not I keep these gifts going beyond January!

I can only try and then learn when things go wrong!

So what about you? What gifts are you going to try to give yourself?

Let’s think about some key take aways from this episode:

1.    As I’ve mentioned, Christmas is about giving and that means giving to yourself also. Please don’t forget about you during this time.

2.    Giving yourself gifts, physical ones or gifts like forgiveness and self care, is as much part of the Christmas meaning as giving gifts to others is.

3.    When you give yourself a gift, much as when we give gifts to others, don’t attach strings to it. Accept it graciously, as you would any gift you’re given.

4.    You don’t need to try everything at the same time. You can spread your gifts out throughout the year and enjoy each of them in turn.

That’s it for today everybody.  I hope you have found this episode helpful and that there are things that you may wish to gift yourself. 

I’d love to hear about the gift or gifts you are giving yourself this year so feel free to reach out via any of my social media links or my website.

You can still download your FREE copy of my Activity tracker by heading to www.rhonabarton.co.uk/links. 

Whilst you’re there, you can head to my media page for more information about me and my story. 

Thank you for listening. Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

I hope today’s a good day for you. Bye for now. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting about planning for family gatherings. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

It probably hasn’t escaped your notice that we’re now well into December. Christmas TV programmes have started and, if you’ve been able to get out to do any shopping, you may have heard a Christmas carol or two being played. 

We know that means, Santa is doing his final checks of his naughty & nice list and is checking over his sleigh in preparation for the big night! Whilst he and Mrs Claus are gathering all of the elves up at the North Pole, you may be preparing yourself for your own gathering over the festive period.

When you think about it, how does it make you feel? 

I always look forward to the idea of Christmas with family but, having been raised between two households, it’s never been a full family celebration. There’s always been a split in the day itself as I transferred from Mum’s house to my Dad & Other Mother’s house. Since I’ve been old enough to work, Christmas day has been a bit of a movable feast for us. I sometimes talk about piquing early for Christmas as I spend a day with my Dad & Other Mother and a day with my Mum prior to 25th December as our Christmas Day. Living 150 miles away from them, my brother and my niece means that I start planning for Christmas around October. This gives us time to check everybody’s diaries and book time in so that we all know what’s happening. It also gives us a chance to change things if other commitments come up or work schedules move. I usually end up with 3 Christmas days a year to get around everybody.

I started this by saying that I always look forward to the idea of a family Christmas and that’s true. Even though I’ve had separate Christmases for almost 40 years, when I consider the idea of Christmas, it’s always an image of a single day with everybody in one place. Which seems ridiculous to me when I say it out loud. I don’t actually remember having a Christmas day like that but that’s what my brain defaults to when imagining Christmas. And it all looks very calm and enjoyable. People seem content.

But that’s not the reality. Christmas, much like other gatherings, can be very stressful in general. Add to that the likes of ME/CFS and Long Covid and it can be far from the ideal. It can bring up some pretty strong feelings. 

The run up to the big day can feel overwhelming and that, in turn, can cause a flare up of symptoms. This is also part of the reason why I decided to start...]]>

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting about planning for family gatherings. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

It probably hasn’t escaped your notice that we’re now well into December. Christmas TV programmes have started and, if you’ve been able to get out to do any shopping, you may have heard a Christmas carol or two being played. 

We know that means, Santa is doing his final checks of his naughty & nice list and is checking over his sleigh in preparation for the big night! Whilst he and Mrs Claus are gathering all of the elves up at the North Pole, you may be preparing yourself for your own gathering over the festive period.

When you think about it, how does it make you feel? 

I always look forward to the idea of Christmas with family but, having been raised between two households, it’s never been a full family celebration. There’s always been a split in the day itself as I transferred from Mum’s house to my Dad & Other Mother’s house. Since I’ve been old enough to work, Christmas day has been a bit of a movable feast for us. I sometimes talk about piquing early for Christmas as I spend a day with my Dad & Other Mother and a day with my Mum prior to 25th December as our Christmas Day. Living 150 miles away from them, my brother and my niece means that I start planning for Christmas around October. This gives us time to check everybody’s diaries and book time in so that we all know what’s happening. It also gives us a chance to change things if other commitments come up or work schedules move. I usually end up with 3 Christmas days a year to get around everybody.

I started this by saying that I always look forward to the idea of a family Christmas and that’s true. Even though I’ve had separate Christmases for almost 40 years, when I consider the idea of Christmas, it’s always an image of a single day with everybody in one place. Which seems ridiculous to me when I say it out loud. I don’t actually remember having a Christmas day like that but that’s what my brain defaults to when imagining Christmas. And it all looks very calm and enjoyable. People seem content.

But that’s not the reality. Christmas, much like other gatherings, can be very stressful in general. Add to that the likes of ME/CFS and Long Covid and it can be far from the ideal. It can bring up some pretty strong feelings. 

The run up to the big day can feel overwhelming and that, in turn, can cause a flare up of symptoms. This is also part of the reason why I decided to start spending time planning from October! It then feels more manageable for me especially when also dealing with work commitments and a social life these days. 

So, how do we plan and make it through a family gathering this festive season? 

As I’ve learned over the years, you can’t control everything, and you can’t be responsible for other people having a good time. So let’s get this narrowed down immediately – you can only be responsible for you. Remind yourself of that at regular intervals. 

Whilst Christmas preparation can be taxing for people, it can be more so for people with ME/CFS & Long Covid and even little jobs can really take it out of us. 

Ok, with that said, let’s see if we can look at some tips to help you make best use of your time and energy.

Be realistic about your expectations for the day. You may have an expectation, like I do in my mind, of people getting along, taking it in turns to open gifts and ooh-ing and ahh-ing over them, eating their meal and enjoying it all, the dishes magically doing themselves and putting themselves away like in Disney’s Fantasia film but, knowing what you know about the people your spending the day with, as well as knowing yourself and your condition, how realistic is that? 

For me, that is firmly in fantasy land and that’s mainly because I put pressure on myself to ensure that everybody else is having a good time and has what they need. I’m doing my best to reduce that reaction and focus on what I need so that I can enjoy the day as it unfolds. It’s one day and the things that may go wrong, will be forgotten the next day. 

Remember that regardless of how things go, you are not in control of it all. If you have a flare up of symptoms, it is not your fault. You didn’t ask for this and you’ve done your best. There is no fault and no blame. Give yourself a break.

Take a look at the small wins – remember what you have achieved. Break down each day and give yourself credit for the things you have done and the things that you have delegated. Giving up control can be freeing – could you do that for the day if it meant you could spend longer with the people who matter to you?

Look at prioritising things. What things need to be done? What would you like to do? What can you actually manage? What are you delegating or just not doing this year? We can’t always get everything done and we can always do things as quickly as we would like, so let’s get to the bare bones of it all and figure out what’s important for you to do.

You all know that I love a list! This time of year is the same. I have a Christmas card list to keep me right on who I’m sending to. Part of my October planning is to get a list of people I’ll be giving gifts too and start noting down some ideas for them. I ask for any online wish lists, and I think about some of the conversations we’ve had over the year to see if I can remember any ideas that could be useful. I keep thinking that I’ll write these things down throughout the year but it doesn’t always happen!

If you don’t have the time or energy to write Christmas cards, why not consider e-cards? These can be free via some websites, and you’ll likely only need an email address for each recipient. 

Could you delegate the wrapping of any gifts to somebody else in the house or to a friend? Or could you go with gift bags only and not need to wrap things at all?

Don’t forget to ask for help when you need it or even before you need it! Part of planning ahead for you could mean asking your guests to each bring a dish to save you having to cook the full meal. Or asking for them to help with the clearing up or doing the dishes. 

Planning ahead also means checking that, if you take medication, you have sufficient to see you through the festive period. Or if you need to arrange medical appointments or food deliveries you have these arranged and booked in. And let’s not forget about booking recovery time into your diary too. 

I’ve spoken about being with people during the festive period and how you can plan for this. I know that I’m lucky to be one of those people with family and friends nearby. For those who are more isolated, who are unable to be in the company of others or who choose to spend the day with themselves, you may wish to think about being online. There’s a hashtag that can be used on social media sites such as Twitter for anyone feeling lonely or alone on Christmas Day and it’s #joinin. It gives you the option to chat online to people who may be in the same situation as you. So if you have some time and energy, perhaps you’d like to give it a go? It’s usually hosted by UK Comedienne Sarah Millican.

One final thing I would say is try to keep to your normal routine. Rest when you usually do, head to bed at your usual time and try not to get frustrated with yourself.

If you are a carer, friend or family member of someone with ME/CFS or Long Covid, you can help them in the run up to the big day, on the day and afterwards by being supportive, listening, not assuming they are find just because they are smiling, helping them without being asked and not taking it personally if they need to cancel or cut things short. In fact, discussing and putting in place a “hard stop” to any event, could help them immensely. Knowing there’s an end to an event can help manage energy levels and still give a chance to enjoy things. 

Let’s think about some key take aways from this episode:

1.    Family gatherings or events over the festive period can be a boost to people with ME/CFS and Long Covid, especially if isolation has been a big thing recently. But they require some planning and discussion.

2.    Everybody feels pressure in the run up to a festive gathering but not everybody will have symptoms that can flare up because of this.

3.    Planning in advance can help to reduce overwhelm and can highlight aspects that others could help you with.

4.    If you are alone or lonely on Christmas day and have access to Twitter, feel free to use the hashtag joinin to chat and share with others.

5.    For friends, family and carers of people with ME/CFS or Long Covid, please be gentle with them, listen to them and be aware that things may need to be cancelled or stopped early as part of your support to them.

That’s it for today everybody.  I hope you have found this planning episode helpful and that there are things that you may wish to pick up on to help you this year.

If you are choosing to participate in the hashtag joinin campaign this year, I hope you find it beneficial and an easy way to dip in and out of things throughout the day as your energy allows. 

I’d love to hear your tips for dealing with gatherings and events so feel free to reach out via any of my social media links or my website.

You can still download your FREE copy of my Activity tracker by heading to www.rhonabarton.co.uk/links. This may help you plan out the run up to Christmas and some time afterwards.

Whilst you’re there, you can head to my media page for more information about me and my story. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting about the fact that you Don’t Look Ill. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

I’ve just said you don’t look ill and, whilst that may be true for some of us, it’s not the case for everybody. Let me back up a little. 

The reason I’m talking about this today is because this weekend includes International Day of Persons with Disabilities (IDPD) and this year’s theme is Non-Visible Disabilities. I’m sure we’re all aware of the likes of Autism, Dyslexia, Anxiety, Hearing Loss plus many more conditions that are not immediately obvious just by looking at someone. But, people with ME/CFS & Long Covid can also fall into this Non-Visible disability category. And that’s why I’m talking about it.

For years, I was told that I didn’t look ill. I’m mean I’m pretty pale skinned – thanks for that goes to my Scottish heritage, but unless I was in my wheelchair or using my crutches or walking stick, people didn’t think I looked ill.

My family could tell when I had overdone things as I went from my usual pale (or peely wally as we call it in Scotland) to a grey shade with dark shadows under my eyes. And it could happen quickly! Even now, I sometimes hear a “you look grey” from close friends or family when I’m pushing myself too much!

The problem with this at the time was, unless you knew me, you wouldn’t automatically think that I was ill in any way. And that seemed to be how things went for me. If I was out in my wheelchair, and later with my crutches or walking stick, there was an outward symbol of my having some form of disability. Now, let’s not even start on people talking to my Mum instead of me because I was in my wheelchair – somehow that meant I was able to understand or respond to questions so even being out and being visible, still somehow made me invisible to some people! 

Without these ability aids, it was assumed that I was fit and well and “normal” so I would be asked why I was parking in a disabled parking bay, or why was I struggling to follow a conversation or answer a question? I didn’t look ill so how could I be ill?

This is some of the ignorance that goes with non-visible disabilities. 

But why is it called a non-visible disability? 

There’s a feeling that by using a word like “invisible” or “hidden” to describe non-visible disabilities, that the legitimacy and the impact the disability has on the individual’s...]]>

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting about the fact that you Don’t Look Ill. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

I’ve just said you don’t look ill and, whilst that may be true for some of us, it’s not the case for everybody. Let me back up a little. 

The reason I’m talking about this today is because this weekend includes International Day of Persons with Disabilities (IDPD) and this year’s theme is Non-Visible Disabilities. I’m sure we’re all aware of the likes of Autism, Dyslexia, Anxiety, Hearing Loss plus many more conditions that are not immediately obvious just by looking at someone. But, people with ME/CFS & Long Covid can also fall into this Non-Visible disability category. And that’s why I’m talking about it.

For years, I was told that I didn’t look ill. I’m mean I’m pretty pale skinned – thanks for that goes to my Scottish heritage, but unless I was in my wheelchair or using my crutches or walking stick, people didn’t think I looked ill.

My family could tell when I had overdone things as I went from my usual pale (or peely wally as we call it in Scotland) to a grey shade with dark shadows under my eyes. And it could happen quickly! Even now, I sometimes hear a “you look grey” from close friends or family when I’m pushing myself too much!

The problem with this at the time was, unless you knew me, you wouldn’t automatically think that I was ill in any way. And that seemed to be how things went for me. If I was out in my wheelchair, and later with my crutches or walking stick, there was an outward symbol of my having some form of disability. Now, let’s not even start on people talking to my Mum instead of me because I was in my wheelchair – somehow that meant I was able to understand or respond to questions so even being out and being visible, still somehow made me invisible to some people! 

Without these ability aids, it was assumed that I was fit and well and “normal” so I would be asked why I was parking in a disabled parking bay, or why was I struggling to follow a conversation or answer a question? I didn’t look ill so how could I be ill?

This is some of the ignorance that goes with non-visible disabilities. 

But why is it called a non-visible disability? 

There’s a feeling that by using a word like “invisible” or “hidden” to describe non-visible disabilities, that the legitimacy and the impact the disability has on the individual’s life, can be diminished or even imply that the disability doesn’t exist. 

A term such as “less-visible” doesn’t encompass those with conditions which are completely non-visible. Just because a disability can’t be seen, doesn’t mean it doesn’t exist. As if we don’t have enough to contend with!

Also, some people with non-visible disabilities may have a dynamic condition which means that they may, for example, use a mobility aid some days and not on others. Think about the fluctuating nature of ME/CFS & Long Covid – good days and bad days can impact what we do, how we do it, where we do and how we look when we’re doing it!

As people with ME/CFS we often use the hashtag or term #MillionsMissing. The #MillionsMissing is a global campaign for health equality for ME. The term millions missing is used to show that not only are we unable to work or socialise, many are missing careers, missing time with family and, for those severely impacted, missing simple moments like going out in the sun, reading a book or just chatting to a friend.

Whilst this hashtag term can be used for people with ME/CFS, in reality, there are a number of people who would probably agree that they too are missing in different ways because of their non-visible disabilities. It just so happens that we may see them more often in society or at work as their condition perhaps doesn’t keep them on the same rollercoaster of a ride as ME/CFS & Long Covid does.

Can we learn anything from this year’s International Day of Persons with Disabilities? I certainly hope we can. I hope to expand my knowledge and understanding of Non-Visible disabilities and I hope to use this podcast to help educate others.

As I’ve said before, we never know what is going on with other people.  We don’t live inside them; we don’t feel things the same way they feel them, and we don’t always show others when we need help.

So if you’re listening to this as a friend, family member or partner of somebody who has a Non-Visible Disability, please keep this in mind as you look at them and think “they don’t look ill”.

Let’s think about some key take aways from this episode:

1.    International Day of Persons with Disabilities is this weekend and this year’s theme is Non-Visible Disabilities.

2.    We use the term Non-Visible instead of invisible, less visible or even hidden so that we don’t fall into the trap of believing that just because we can’t see a disability, doesn’t mean it doesn’t exist.

3.    You can always learn more and help to educate others.

4.    People are beginning to realise that Non-Visible disabilities exist and people living with these conditions matter.

That’s it for today everybody.  I hope you have found this episode useful. I’ll be speaking to others this week about ME/CFS & Long Covid as part of International Day of Persons with Disabilities and I’ll be listening to others speak about their conditions.  

If you are choosing to participate in IDPD this year, I’d love to hear about it so feel free to reach out via any of my social media links of my website.

You can still download your FREE copy of my Activity tracker by heading to www.rhonabarton.co.uk/links. 

Whilst you’re there, you can head to my media page for more information about me and my story. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting to you about Having a Bad Day.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

19th of November was Having a Bad Day day. There seems to be a day for so many things but this one caught my attention. We all have bad days now and again but for most people, a bad day means that they feel like they’ve wasted their time and have achieved nothing with no time to enjoy their day.

For people with ME/CFS and Long Covid, it means so much more. 

Having a Bad Day day is not really a serious holiday. It was first introduced in 2015 for people working in the service industry. Spending most of their time saying things like, “have a nice day”; Having a Bad Day day is a once a year chance for service workers to say “have an awful day”. It’s particularly satisfying for those with awkward or bad customers! It’s a great chance to break up the monotony of having to wish customers a Nice Day after they have made a purchase by surprising them with a smile and a “have a bad day!” comment. It’s also great for those that just wish to be impolite for a day. 

Whilst it is not mandatory for you to have a bad day on Have a Bad Day day, if you are having one, try to embrace it and accept it.

You will be surprised how much of a difference it can make to how you are feeling if you decide to be cheery despite the fact that everything seems to be going wrong around you on this date.  You can also look out for anyone else who is having a bad day.  Make them smile by reassuring them that it is normal, especially considering it is Have A Bad Day Day! Remember, bad days don’t last forever, so embrace them and don’t get too down.

When I talk about embracing your bad days, I’m not talking about putting a positive spin on it or hiding from the pain and emotions. That’s toxic positivity. This type of positivity is the belief that no matter how difficult a situation is, you should just maintain a positive mindset. Now, I do like to look on the optimistic side of life and hope for the best, but I’m not blind to the fact that bad things happen, and that painful experiences and emotions also make up part of the lives we live. Feeling and dealing with these emotions openly and honestly will help you achieve acceptance and greater psychological health. 

When we express our sadness or disappointment, well meaning friends and family may chime in with the likes of “everything happens for a reason” or “just stay positive”! These comments are meant to be sympathetic and comforting but they can encourage us to...]]>

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting to you about Having a Bad Day.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

19th of November was Having a Bad Day day. There seems to be a day for so many things but this one caught my attention. We all have bad days now and again but for most people, a bad day means that they feel like they’ve wasted their time and have achieved nothing with no time to enjoy their day.

For people with ME/CFS and Long Covid, it means so much more. 

Having a Bad Day day is not really a serious holiday. It was first introduced in 2015 for people working in the service industry. Spending most of their time saying things like, “have a nice day”; Having a Bad Day day is a once a year chance for service workers to say “have an awful day”. It’s particularly satisfying for those with awkward or bad customers! It’s a great chance to break up the monotony of having to wish customers a Nice Day after they have made a purchase by surprising them with a smile and a “have a bad day!” comment. It’s also great for those that just wish to be impolite for a day. 

Whilst it is not mandatory for you to have a bad day on Have a Bad Day day, if you are having one, try to embrace it and accept it.

You will be surprised how much of a difference it can make to how you are feeling if you decide to be cheery despite the fact that everything seems to be going wrong around you on this date.  You can also look out for anyone else who is having a bad day.  Make them smile by reassuring them that it is normal, especially considering it is Have A Bad Day Day! Remember, bad days don’t last forever, so embrace them and don’t get too down.

When I talk about embracing your bad days, I’m not talking about putting a positive spin on it or hiding from the pain and emotions. That’s toxic positivity. This type of positivity is the belief that no matter how difficult a situation is, you should just maintain a positive mindset. Now, I do like to look on the optimistic side of life and hope for the best, but I’m not blind to the fact that bad things happen, and that painful experiences and emotions also make up part of the lives we live. Feeling and dealing with these emotions openly and honestly will help you achieve acceptance and greater psychological health. 

When we express our sadness or disappointment, well meaning friends and family may chime in with the likes of “everything happens for a reason” or “just stay positive”! These comments are meant to be sympathetic and comforting but they can encourage us to mask or avoid what we’re feeling and experiencing.

Too much of this toxic positivity can be harmful when you’re going through a difficult time. It can lead to feelings of shame, it can cause guilt, it can prevent growth and it can allow people to sidestep emotions or situations that make them feel uncomfortable.

Having a bad day with ME/CFS and Long Covid can mean being blindsided right out of the blue and then having to dissect the past few days to find out where things went wrong. Quite frankly, on a bad day, there’s not much we can do but try to just get through it. Anything that we’d hoped to get done, has to wait until we’re back to our normal. Having to accept that this illness is out of our control can be really difficult. You think you’re making some headway and then things come to a halt and it’s confusing and frustrating. 

A bad day may mean being dependent on others to help us with some basic activities; reducing our interaction with other people or even, retreating to a darkened room with earplugs and eye mask.

So what can we do if we’re having a bad day?

Sometimes we just need small, easy, cheap (or free) things to give us a break or which we can ask others to do for us to help them better understand our needs.

·     Have a cuppa – it sounds like a very British thing to do but there’s something quite comforting about a warm cuppa. In my opinion it helps to soothe you inside and out. For me, it would be a hot chocolate – I’m not a huge tea fan, although I’ll drink it if it’s made for me but I can’t stand coffee! Herbal teas such as peppermint can also help to ease an upset stomach. Why not take a peak at some herbal and caffeine free teas to see if there’s something that might take your fancy?

·     Low Energy Activities – let’s be honest, if you’re having a bad day, that probably includes low energy levels. You may want to consider the likes of meditation, colouring, sitting outside, cuddling your pets or even watching a short TV show. If you have no energy, you’ll likely just be trying to get through the day. 

·     Talk it out – I know, I know! Talking can take up so much energy and people always want to jump in with what they think is helpful advice. So, let’s say you want to talk about it but you don’t want people interrupting you, what can you do? Why not try talking to yourself via the likes of a video recording or voice recording app? This can also work as a way of keeping a diary or a journal. You don’t need to let anybody else see or hear the entries but it gets the thoughts and feelings out of you and can help you acknowledge and deal with the bad days. You might, over time, also pick up a pattern of events.

·     Treat your physical state – for example, take any medications, use a hot water bottle to help ease painful limbs, drink water, have a lie down etc etc. But don’t forget about your mental state also. Please speak kindly to yourself. Don’t call yourself names – I used to tell myself that “my legs are useless!” – this was me beating myself up because, at that point in time, my legs didn’t work and they seemed to have me stuck. It wasn’t very productive and it wasn’t a kind way to talk to myself. I was taking out my frustrations in an unhelpful way. Give yourself what you actually need and not what you think you SHOULD. For me, that meant relying on my wheelchair, or dragging myself, army style around the house on my forearms to get to where I wanted to be.

·     Be honest – with yourself and those around you. Tell them you’re having a bad day and that plans have changed. Then it’s up to them to deal with it whilst you look after you.

I always say, at the end of this podcast that I hope today’s a good day for you. And I honestly and truly hope it is. Bad days suck. Just remember that it’s ok to not be ok and that everybody has bad days. Their’s just may not be to the same degree as yours. 

Let’s think about some key take aways from this episode:

1.    Having a Bad Day day is a thing – most people take it for granted that they will have a bad day now and again, for people with ME/CFS & Long Covid, we probably have more bad days that other people. It’s normal for us.

2.    There’s a difference between toxic positivity and being realistic about how and what you feel.

3.    Look for low energy or no energy ways to look after yourself when you’re having a bad day.

4.    Be honest with those around you and stuff what they think. Focus on you and what you need.

That’s it for today everybody.  I hope you have found this episode useful and reassuring.

You can still download your FREE copy of my Activity tracker by heading to www.rhonabarton.co.uk/links. You might want to try this so that you can see if you can spot any patterns to your good days and bad days.

Whilst you’re there, you can head to my media page for more information about me and my story. 

Thank you for listening. Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

I hope today’s a good day for you. Bye for now. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

World Kindness Day is Sunday 13th November. In this week’s episode I’m going to be chatting to you about Being Kind to ME.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in and start with some of the basics around World Kindness Day.

World Kindness Day was introduced in 1998 by the World Kindness Movement and is observed by a number of countries.

The day highlights good deeds in the community focusing on the positive power of kindness and aims to increase the value of kindness in society as well as increase the amount of kind acts that take place. 

Have you ever done something nice for somebody else just because you could? Not to repay them for anything or because you had to, but just because you could and you wanted to. If so, then you’ve done a random act of kindness! Congratulations!

Kindness is a valuable trait to have. We like kind people and being kind can help us be liked. Being kind has been shown to boost other’s well-being and also our own personal well-being. Some researchers have proposed that happiness is just the emotional experience we have when we act in ways that promote our survival. Evolutionary psychologists believe that kindness makes us happy because it helps us survive & thrive. This may be especially true when we help family, friends and spouses.

Some people are more likely to practice random acts of kindness than others. Seeing our parents engage in random acts of kindness makes it more likely that we will too. If someone tells us that we’re kind, we might also be more likely to engage in random acts of kindness. 

Many of us want to try random acts of kindness but we’re just not sure how. There are a variety of ways that you can carry them out and they don’t need to cost an arm and a leg. 

Here are some examples:

1.    Give a compliment

2.    Show gratitude

3.    Write a handwritten card to someone to say thank you

4.    Tell a friend what you love about their children

5.    Pick up rubbish from the ground and pop it in the rubbish bin

6.    Pay for somebody’s tea or coffee the next time you are at a coffee shop.

7.    Sign up as a volunteer for a charity.

8.    The next time you are clearing out your house, donate items that you no longer want]]>

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

World Kindness Day is Sunday 13th November. In this week’s episode I’m going to be chatting to you about Being Kind to ME.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in and start with some of the basics around World Kindness Day.

World Kindness Day was introduced in 1998 by the World Kindness Movement and is observed by a number of countries.

The day highlights good deeds in the community focusing on the positive power of kindness and aims to increase the value of kindness in society as well as increase the amount of kind acts that take place. 

Have you ever done something nice for somebody else just because you could? Not to repay them for anything or because you had to, but just because you could and you wanted to. If so, then you’ve done a random act of kindness! Congratulations!

Kindness is a valuable trait to have. We like kind people and being kind can help us be liked. Being kind has been shown to boost other’s well-being and also our own personal well-being. Some researchers have proposed that happiness is just the emotional experience we have when we act in ways that promote our survival. Evolutionary psychologists believe that kindness makes us happy because it helps us survive & thrive. This may be especially true when we help family, friends and spouses.

Some people are more likely to practice random acts of kindness than others. Seeing our parents engage in random acts of kindness makes it more likely that we will too. If someone tells us that we’re kind, we might also be more likely to engage in random acts of kindness. 

Many of us want to try random acts of kindness but we’re just not sure how. There are a variety of ways that you can carry them out and they don’t need to cost an arm and a leg. 

Here are some examples:

1.    Give a compliment

2.    Show gratitude

3.    Write a handwritten card to someone to say thank you

4.    Tell a friend what you love about their children

5.    Pick up rubbish from the ground and pop it in the rubbish bin

6.    Pay for somebody’s tea or coffee the next time you are at a coffee shop.

7.    Sign up as a volunteer for a charity.

8.    The next time you are clearing out your house, donate items that you no longer want to a local charity.

9.    Hold the door open for the person behind you.

10. Smile at a stranger.

All of these acts, plus the many other options you could add into the list, are about doing things for others.

For people with ME/CFS and Long Covid, this could be an added layer of complexity. So this World Kindness Day, why not do something for yourself. Why not try being kind to yourself?

Not only will being kind to yourself generally help to lift your mood, it will also help you to increase happiness, promote oxytocin (also known as the love hormone!), reduce depressive moods, help you feel more self-confident and can create a rush of positive energy. 

Here’s how you can show yourself some kindness:

Start by setting some time aside for self-care. This will allow you the time to do something you’ve been wanting to do. It may be having a relaxing bath or writing your diary but it’s something that’s just for you. 

Be intentional when speaking about yourself to yourself. You are likely to be your own biggest critic so if you catch yourself speaking negatively about yourself to yourself, or looking in the mirror and disliking what you see, take a moment to stop and challenge that thinking. Make a list of the things you like about yourself and the things that you enjoy. Remind yourself to look at the list often. And remember, that if you slip up and catch yourself thinking negatively about yourself again, it’s OK! We all mess up so forgive yourself.

Think about how easy it is for you to be kind and supportive to the people you care about when they are having a bad day. How do you respond to them when they are dealing with a stressful situation or are feeling down? Do you listen without judgement? Do you buy them a thoughtful gift? Do you remind them of their good qualities? Now, turn that around and do that for yourself. Be your own best friend.

We’re usually quite quick to pick up on other’s achievements but slow to acknowledge our own. Take some time to think about your own achievements and give yourself a pat on the back for each of them. Be proud of what you’ve managed to do. I still, after 20 years, get a thrill when I wake up in the morning and can see and feel my toes wiggle! It’s a little thing but it really gives me a buzz! Having had years when I couldn’t get my legs let alone my toes to do anything, I love to see that wiggle in the morning. It reminds me how far I’ve come.

Take good care of yourself, within your current capabilities. One of the best ways to be kind to yourself is to take care of yourself. That means doing your best to get enough sleep, eat well and know your boundaries. Self-respect, trusting yourself and knowing when to say “no” is also showing yourself kindness. 

Dealing with a chronic illness can take a toll on the mind, body & spirit. For people with ME/CFS & Long Covid, we can set high expectations of ourselves. When we don’t meet those expectations, even though it’s through no fault of our own, we can be hard on ourselves. An additional way to be kind to ourselves is to remember that there will be ups and downs but that we are doing our best.

Let’s think about some key take aways from this episode:

1.    World Kindness Day is an annual event but you can be kind to yourself and others as often as you’d like!

2.    Random acts of kindness can cost nothing, a quick online search will give you some more ideas to the ones I’ve included today.

3.    Showing yourself kindness will increase your mood, help you feel more self-confident and reduce a low mood.

4.    Prioritise self-care on a regular basis.

5.    Remember that you’re doing your best with your current capabilities.

That’s it for today everybody.  I’ll be showing myself some kindness this week by taking a short break away with family and switching off from social media for a couple of days. 

You can still download your FREE copy of my Activity tracker by heading to www.rhonabarton.co.uk/links. You might want to try this so that you can see where you can be kinder to yourself.

Whilst you’re there, you can head to my media page for more information about me and my story. 

Thank you for listening. Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

In this week’s episode I’m going to be chatting to you about Monsters and ME! It’s Halloween after all so this seemed like a good title for the episode!

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts.

When I think about ME, CFS and Long Covid, there are lots of aspects that come to mind. For example, the isolation, the pain, the grief, the inability to do so many things, the worry, the anxiety, the brain fog, the list goes on. I class these as monsters. Having said that, I don’t remember ever really dressing up as a monster for Halloween. I remember dressing up as a packet of Opal Fruits (now known as Starburst) and also as an envelope and but I don’t remember being a monster.

That may sound strange, but I believe you can define the term monster in a couple of ways.

·     Firstly, a monster could be seen as a frightening creature – think Halloween costumes such as witches, vampires, ghosts, skeletons, clowns, aliens etc. and not really a packet of Starburst or an Envelope!

·     And secondly, a monster could be seen as something extraordinary or daunting – think a 500-page novel that you’d like to get through or living with the many symptoms of ME/CFS & Long Covid.

As you may have guessed, I’m firmly in camp 2 when it comes to thinking about the symptoms I had, as monsters!

The problem with monsters, whichever camp you sit in, is that they are monsters for a reason. They frighten us. They make us feel scared. They may make us feel lonely, anxious, overwhelmed, angry, hurt, concerned, jealous, disappointed plus probably a whole host of other feelings and emotions. When we’re already struggling for energy to deal with some of the smaller aspects of each day, having to also deal with these monsters and their accompanying emotions, is just draining and exhausting.

Let’s think about some key take aways from this episode:

1.    Monsters come in all shapes and sizes but by facing them, we can begin to reduce their impact on us. 

2.    Burying our heads in the sand, doesn’t stop the feelings and emotions, it just masks them.

3.    Being busy, is a distraction just as much as binging your favourite TV or book series.

4.    Your feelings and emotions may be trying to tell you something so put some time aside to listen to them.

5.    Don’t judge yourself but do be kind.

You can still download your FREE copy of my Activity tracker by heading to www.rhonabarton.co.uk/links.  You might want to try this so that you can see where your distractions might lie.

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

This week’s episode is a Blether Together chat with Diane Morgan. 

You may remember that I chatted with Diane back in September. Well, we enjoyed it so much, we decided to do it again!

Diane is a Grief Recovery Coach and Hypnotist. She provides both online and 1-to-1 in- person Grief Recovery support services and has her own podcast, “Give Grief a Chance” and I’ve popped Diane’s information further down in these show notes so that you can also give her a listen!

Chatting with Diane has given me even more to think about than it did the first time around! How has this been for you? Let me know by dropping me a message via my social channels or leaving me a short voice message by visiting speakpipe.com/BiME.

You can get hold of Diane by visiting her website at www.givegriefachance.com and her podcast, “Give Grief a Chance” can be found via her website or Apple Podcasts. If you wish to give Diane a follow on social media, you’ll find her on Instagram at givegriefachancecoach and her facebook group is Life After Loss with Diane Morgan.

You can sign up to my mailing list or grab your freebie activity tracker by visiting my website at www.rhonabarton.co.uk/links

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Ok, let’s jump straight in!

So far, in this mini-series, we have looked at what ME & Long Covid is, how it impacts employees, how to support people with ME & Long Covid who are already in work, how to support people with ME & Long Covid who are off sick, some of the practical requirements for people with ME & Long Covid in work and the financial implications that ME and Long Covid can have on people..

This week we are looking at how to put in place an effective phased return to work for people with ME and Long Covid.

When somebody has been off sick and is ready to consider coming back to work, they will probably have a conversation with you. They will wish to discuss the how and when of their return as well as any concerns they may have about returning to the workplace.

As their employer you will have some aspects that you wish to discuss also such as if they will need a phased return, how the company is keeping the workplace safe and if an occupational health assessment is needed or could help.

Your company may have its own return to work policy and procedure which you will need to review and follow. 

If the individual is ready to go back to work after being off sick, your company will also need to decide whether they think it's safe for them to return.

If your company decides it's not safe for someone to return, they will need to decide what type of absence the period of time will count as.

If someone is ready to go back to work, they should also check the Company's sickness and absence policies to see if they provide any extra information about returning to work.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

So far, in this mini-series, we have looked at what ME & Long Covid is, how it impacts employees, how to support people with ME & Long Covid who are already in work, how to support people with ME & Long Covid who are off sick and some of the practical requirements for people with ME & Long Covid in work.

This week we are looking at the financial implications for people with ME/Long Covid.

I understand that many employers are concerned about financial and other costs of making reasonable adjustments, as well as the potential for setting precedents that other employees may wish to make use of.

In my experience I have found that the majority of effective reasonable adjustments came at very little or no cost and that Access to Work funding may be accessed to support purchases of any additional equipment, assistive technology and support. This can include support for making changes to premises where they specifically and only benefit the individual.

Employers are sometimes concerned that by agreeing to reasonable adjustments they may set precedents for other employees. This tends to be the case only when an employer is coming more from a starting point of “What is going to be reasonable for us to change?” rather than,” What is going to be effective for this particular employee?”

That’s it for today everybody. As I’ve mentioned, this episode is part of a short series for Organisations. The aim is to help educate leaders, managers and HR teams about ME & Long Covid. Please feel free to share this series with your organisation. 

Last week I told you about a freebie for you which may help you. This is still available, and you can downloadable your FREE copy of the checklist to help you navigate your conversation with people with ME & Long Covid by heading to www.rhonabarton.co.uk/links

Whilst you’re there, you can head to my media page for more information about me and my story.

Thank you for listening. Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

So far, in this mini series, we have looked at what ME & Long Covid is, how it impacts employees, how to support people with ME & Long Covid who are already in work and how to support people with ME & Long Covid who are off sick.

This week we’re looking at some of the practical requirements for people with ME & Long covid in work.

That’s it for today everybody. As I’ve mentioned, this episode is the part of a short series for Organisations. The aim is to help educate leaders, managers and HR teams about ME & Long Covid. Please feel free to share this series with your organisation. 

I did say I had a freebie for you which may help you. I’ve got a free downloadable checklist to help you navigate your conversation with people with ME & Long Covid. You can grab your own copy by heading to www.rhonabarton.co.uk/links for your copy!

Whilst you’re there, you can head to my media page for more information about me and my story.

Thank you for listening. Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

Last week we spoke about Supporting People with ME/Long Covid who are already in work. This week, we’re thinking about how we can Support People with ME/Long Covid who are currently off sick. 

As I mentioned last week, I’m not here to remind you of your legal responsibilities as you or your HR team will deal with that. I’m here to give you some guidance around the more practical side of things.

With that in mind, let’s consider how the person with ME/Long Covid might be feeling right now. 

As ME/Long Covid are fluctuating illnesses, symptoms can vary day-to-day as well as over longer periods. This can make it difficult to maintain a consistent level of working which can be frustrating and challenging for the individual, as well as the employer. 

I’m sure you can imagine that this frustration may also lead to worry for the individual with regards to when they will be able to return to work or even if they will have a job to go back to. 

They may also be worrying about how supportive their employer will be. Some working environments are supportive, others are not, and this can weigh heavily on the mind of the person living with ME/Long Covid. 

This can add extra stress which, in turn, can exacerbate their symptoms.

That’s it for today everybody. As I’ve mentioned, this episode is the part of a short series for Organisations. The aim is to help educate leaders, managers and HR teams about ME & Long Covid. Please feel free to share this series with your organisation. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Thank you for listening. Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

In this week’s episode we’re thinking about Supporting People with ME/Long Covid who are already in work. These will be people with mild to moderate symptoms that allow them to carry out some work but that also require them to be careful over how they manage their condition. They can have some better days, but they may also need longer periods of recovery.

Chances are that if they are already in work, they may have had a conversation with their line manager about their condition. However, this may not be sufficient and may be a local agreement with the line manager rather than anything official. 

I’m not here to remind you of your legal responsibilities. You or your HR team will deal with that. I’m here to give you some guidance around the more practical side of things.

That’s it for today everybody. As I’ve mentioned, this episode is one of a short series for Organisations. The aim is to help educate leaders, managers and HR teams about ME & Long Covid. Please feel free to share this series with your organisation. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Thank you for listening. Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Ok, let’s jump straight in!

What is ME?

ME, or Myalgic Encephalomyelitis, is a long-term fluctuating, neurological condition that causes symptoms affecting many body systems. ​ M.E. affects an estimated 250,000 people in the UK, and between 17 and 30 million people worldwide. It is anticipated that this figure will increase following the Coronavirus pandemic due to Long Covid.

The list of symptoms that people with ME can experience is wide and varied and, unfortunately, they don’t seem to fit a set pattern. ​ We do know, however, that those with Long Covid show very similar symptoms.

People with M.E. experience severe, persistent fatigue associated with post exertional malaise. This is the body’s inability to recover after expending even small amounts of energy and can lead to a flare-up in symptoms.

Around a quarter of people with M.E. are severely affected, leaving them housebound and/or bed-bound for long periods. Those experiencing this level of symptom severity are unable to work.

Even in its mildest form, M.E. can have a significant impact on an individual’s life, and not just on their health. A lack of understanding and awareness about M.E. means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.

People who have M.E. often say that they, their employer and the people supporting them need more information about how to effectively manage M.E. at work. This podcast series is for anyone employing or managing someone with mild to moderate M.E. and outlines the advice to help you when recruiting and supporting people with M.E.

That’s it for today everybody. As I’ve mentioned, this episode is the start of a short series for Organisations. The aim is to help educate leaders, managers and HR teams about ME & Long Covid. Please feel free to share this series with your organisation. 

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Thank you for listening. Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

I’d love to hear what you think of our chat so feel free to leave me a voice message by going to www.speakpipe.com/BiME or drop me a message on any of my social media.

I hope you enjoy this chat!

Chatting with Diane has given me a lot of think about and reminds me that I didn’t fully deal with my own grief around my old life. So that’s something that I’d like to work on. How has this been for you? Let me know by dropping me a message via my social channels or leaving me a short voice message by visiting www.speakpipe.com/BiME.

You can get hold of Diane by visiting her website at www.givegriefachance.com and her podcast, “Give Grief a Chance” can be found via her website or Apple Podcasts. If you wish to give Diane a follow on social media, you’ll find her on Instagram at givegriefachancecoach and her facebook group is Life After Loss with Diane Morgan.

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about)

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page.

Let’s jump straight in.

How often do you wish for a clean slate or a fresh start?

I must have had this thought at least once a month when I was ill. If you are anything like me, you probably find yourself getting bored quite quickly and looking for something to entertain yourself with.  That might be a new TV programme, a book series, jigsaws or even the likes of sudoku puzzles. This was one of my frustrations with my ME. I liked to be on the go and doing things so having all of that stop suddenly due to my ME, was a real blow to the system.

I have been told, over the years, that I am far too positive. That it could be seen as toxic positivity and that I should be more realistic. Whilst I have a few choice words for the people that tell me that, I know that I’m able to keep things in perspective and that not everything is happy, shiny and coming up roses all of the time. I do believe that you can always learn from your situation and the circumstances. For me, it’s important to keep a balance of the positive and the negative as both can bring opportunities for learning. One of the many things that I have learned over the years, is that I don’t need to be on the go constantly, to find my inspiration or continue with a positive outlook and hope for the future. 

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about)

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page.

Let’s jump straight in.

When we think about grief or we hear people talking about grief, we tend to jump to the assumption that they are talking about the death of somebody they know.  I would say that this is by far, the most accepted way of thinking about grief, based on my own experiences.  In reality though, we can grieve a number of things, even those that are intangible.  And this bereavement is a stress to our already delicate systems.

The top 5 most stressful life events haven’t changed that much in the past 10 years or so.  Number 1 is the death of a spouse/child or loved one.  2 is divorce, 3 is moving house, 4 is major illness or injury and 5 is job loss.

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about) via my Facebook page @rhonabartoncoaching.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page.

As I sat and considered this week’s topic, it slowly dawned on me that Saturday was the 24th Anniversary of my life changing.  That is to say, it’s 24 years since I was sent home from work with extreme dizziness.  Dizziness that would be diagnosed as Labyrinthitis and later, develop into ME.

I’m sure you can imagine, receiving that ME diagnosis led to several changes.  All of which I was trying to wrap my head around, so one of the last things to even enter my, somewhat limited brain space, was that my peers, my friends, weren’t going through the same thing. They hadn’t lost the ability to think or plan.  They haven’t been accused by strangers on the street of having one too many drinks in a morning as they tried their best to walk to the doctor’s office for yet more tests and check-ups.  And none of them had lost their ability to walk.

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

Hello and welcome to Believe in ME with Rhona Barton.  In this week’s episode I’m going to be chatting to you about being invisible with ME. 

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page.

Today is Severe ME Day and the start of Severe ME Week.  You can follow posts online using the hashtag SevereMEDay if you are able.

The day was originally founded by the 25% ME Group here in the UK and it has since been taken up and honoured by various organisations around the world.  If you’d like to find out more about the work and support that the 25% ME Group carries out, please visit their website at www.25megroup.org.

Severe ME Day is considered a day of remembrance of those who suffer from, and those who have died from, severe ME.  It’s also a chance to educate the public about Severe ME and push for better treatment and research.

There is an estimated 17 to 30 million ME sufferers worldwide.  25% of them are severely impacted by the condition.  This means that there are between 4.25 and 7.5 million people across the planet who feel like they are existing.  Not living, just existing.

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about)

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page.

As we all know by now, when you have an ME diagnosis, you lose a lot of things.  Aspects of your life that you always believed would be in your control are suddenly being controlled or looked after by other people. 

I remember this specifically during my time in hospital.  It seemed that my opinion or what I wanted didn’t matter.  I was stabbed with needles to have bloods taken.  I was wheeled down to an MRI scanner.  I was manoeuvred into position to have a lumbar puncture done.  None of which was through my own choice.  It seemed like, once I was pushed through the hospital doors, I ceased to be a person with thoughts, opinions or choices.  It appeared to me, that I was expected to just do what I was told by the experts.  What happened to me being my own expert?  When did a medical professional’s bedside manner stop being about the patient and start being about the process?

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk or join the Believe in ME Community on Facebook by going to my facebook page (@rhonabartoncoaching)

I’m also back from our motorhome holiday in Switzerland and we had a fabulous time.  It was very warm when we were away, and we came back to the UK just in time for the heat wave!  And that’s what I’d like to chat about this week.  How to keep your cool when everybody else isn’t!  How do we cope with ME in the Summer.

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page.

I’m sure it hasn’t escaped your notice that the summer weather has decided to come out and play!  Whilst this is usually welcomed by most, I’m not great with anything above about 19 degrees. 

I know that everybody is feeling the heat but for people with ME, the additional heat can really make other symptoms worse.  For me, it really would make me feel even more exhausted and I seemed to end up extra sensitive to other things, such as light and sound.

One of the things I remember most about my ME was the fact that my temperature control would be all over the place most days.  In the middle of winter my family would be wrapped up in jumpers, hats and scarves and I would be in a t-shirt and shorts and looking for a window to open!  The opposite would be true in the summer.  What about you?  Do you have issues with your temperature control?

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about)

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page.

You can watch the full webinar recording over at Action for ME’s YouTube channel and view the slides that were shared on the day, but in the meantime, here is the audio recording. 

I hope you’re having a good day today and I’ll be back next week!  Bye for now. 

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page.

This episode as it’s about exploring the understanding and adjustments needed in Social Care and Social Work service to enable people with M.E. to access and benefit from services. I had the pleasure of joining Clare Ogden, Services Manager at Action for M.E. and Zoe McIntyre, a professional in social care who also has Fibromyalgia, on this episode.

The podcast illustrates some of the barriers and challenges that are useful to keep in mind while working to support someone with M.E. This episode highlights the adjustments that are useful to enable someone with M.E. to engage with services and create appropriate care plans. Zoe also raises important considerations around safety and how the unique nature of M.E. requires a different, more flexible approach to avoid harm.

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about)

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you are listening now. 

Join my mailing list by visiting www.rhonabarton.co.uk or my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page.

Now I’ve mentioned before that my big plan in life was to go into Hospitality Management and take over the World!  I was quite adamant that my purpose in life was to work my way up to Hotel Manager for some of the biggest hotel chains across the planet.  That’s what I was passionate about and that’s what I trained for. 

Clearly, ME came along and had other plans for me.  My purpose in life was stopped before it barely started!  I was lost in terms of my career and what I thought I would do in life.  And it sucked!  I’d spent the previous 6 years of my life already working towards this goal and going through the required learning in an educational setting as well as on the job.  I was, quite frankly, paying my dues and then Labyrinthitis and ME came along and pulled my feet out from under me.  It was nothing short of rude!

What was I meant to do now?

Have you ever felt like that?  Have you questioned your reasoning for being? 

Especially if you’ve had to give up what you enjoyed due to your health?  I know I’m not the only one who has experienced this.

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about)

Don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you get your podcasts. 

What do I mean by Dream Building?  Well, for me this was something to do from my bed when I couldn’t do any other activities.  I spent a lot of time inside my own head dream building & day dreaming.  It was the one place I could go and have whatever adventure I wanted!

What do you do with yourself in between activities or visits?  Other than resting that is.  Finding things to pass the time can be quite challenging.  The limited concentration span I had and the pain I would experience from the smallest activity, really limited what I could do.

I didn’t want to be working shifts again and I’d been told that shift work wouldn’t be good for my health so I had to start thinking about what I would do when I was able.  I had considered working in banking but that didn’t fill me with enthusiasm.  I had thought about going back to college to retrain as something else, but my concentration levels weren’t up for that and, I didn’t know how I would be able to afford to do any further training. 

I did like the idea of trying something new however and I love reading.  This led to me skimming through a brochure for my local college.  I came across something that I thought would interest me.  It was an attendance class so if I had times when I couldn’t attend, it wouldn’t impact any form of qualification.  I had found an evening class! 

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you are listening now.  Please remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about) and if you’d like to leave me a voice message about anything that I’ve discussed, please head to speakpipe.com/BiME

Before we get started, don’t forget that you can review, share & subscribe to the podcast via Apple Podcasts, Spotify or wherever you’re listening now! 

You can also join my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page and even leave me a voice message in relation to the things I’ve spoken about so far by heading to https://www.speakpipe.com/BiME

By not being able to move out, my relationships with different people changed. 

Of the two friends I was due to move in with, one stuck by me and one disappeared from my life without a second thought. 

The one who stuck by me has been there regardless of how well I was and whether or not I could tolerate more than a few mins of a visit with him.  We’ve known each other for over 25 years now and he saw me at my worst and helped me celebrate my little wins.  All without judgement and expectation.

The rest of my established friendships disappeared as my peers moved on with their lives.  Having said that, I went on to gain some rich friendships via the online chat rooms and messaging services I’ve mentioned before.  A number of these friendships have never been face-to-face but we still keep up with each other and our respective lives.  It’s great having people who truly understand what you’ve been through and the concerns that you can go on to have about getting back to a “normal” life.

But did I tell my friends or my family what it was really like to live with ME?

I found that I became dependant on my family for everything.  This meant that pretty much everyone else was excluded until I found my online friends.  They helped to keep me sane and gave me something to look forward to on the days I could managed to participate in the online chat. 

I felt like things were very one sided.  I felt like I was a burden to my family as I was dependent on them for so very much in my everyday life.  Not only for some of the practical elements such as helping me wash, dress and prepare meals but also for bigger things.  Things such as helping me apply for welfare support benefits, sorting out a SORN declaration for my car as it was off the road and even helping me out with being able to pay my bills whilst waiting for any welfare support to be confirmed and received.

The more I felt like I was becoming a burden, the more I tried to do and the more I over did things!  That then knocked me back and I would have to start again.  It was quite the vicious cycle and I got trapped in it a number of times. 

As is typical with this condition, it can vary from hour to hour let alone day to day.  With this in mind, my good days also varied depending on the stage I was at throughout the almost 10 years I lived with ME. 

For the first few months, when I was still upright and on my feet, a good day for me would include being able to get showered and dressed each day, brush my teeth and watch some TV.  I couldn’t have anything too loud or busy on the TV and I struggled to read much more than a couple of paragraphs of a book or magazine if I tried.

Part of the additional consideration when I was in my wheelchair, was thinking about the extra energy I would need to push myself about – even if it was just from the bedroom to the kitchen across the hall.  Not only that, but I had to think about getting myself into and out of the wheelchair, how I would carry anything and if I would need to make more than 1 trip to get set up for the day.  This meant that I had to think about reducing my baseline activity and finding a new “normal” for me.  There were days when it felt like I was making no progress at all! 

Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook (@rhonabartoncoaching) page.

I chat about the help I needed to research and then complete the paperwork for the basics of applying for benefits, some tips that I used to help explain my limitations to a benefits assessor and I give a reminder of places/people that can help you source further information and that you can appeal an assessment decision that’s been made.  Please do ask for help to navigate this aspect.  Reach out to family and friends and ask them to support you through this. For carers who may be listening, you may need support also and I would point you in the direction of carersuk.org.

Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about)

At 21 years old, I hadn’t long left college and had started a new job. I was making new friends and getting to know the business.  Having been off work for a couple of weeks with my labyrinthitis, it wasn’t long until I lost contact with my new work colleagues.  The phone calls from the HR team lasted for a couple of more weeks until my doctor was able to write a sick-line explaining a little about my ME and the impact it was having.  Then the calls dropped dramatically and any updates or contact I had hoped to continue to have with my new work-life, disappeared.  Before long, I was pretty much written off and, as it turned out, I didn’t have a job any more.  On one hand, that was devastating – it was pretty much my first real life job out of college and the one that, I thought, was going to help me take over the world! 

There’s only so often a 21-year old’s friends will call or come knocking on the door to find out if you’re able to go out for the night before “normal” life catches up for them and you are left behind.  I don’t blame them.  They were starting out in their own adventure into proper adulthood.  But it did sting.  Why did they just get to decide to go out for the night on the spur of the moment, but I had to plan every detail of each day just to be sure I was able to eat a small meal?

Who decided that this condition was mine to bear and let them away with what seemed like a double set of fresh batteries that never ran down?

When would that be me?  

When would my life actually start properly?

To this day, more than 20 years later, I still haven’t met the people I used to chat to online, in real life!  We live hundreds of miles from each other but now connect via social media as well as birthday & Christmas cards. 

1. You do not need to be alone in your ME. There are some very good organisations out there that can offer you support.  One of which is Action for ME and you can find them at actionforme.org.uk – why not reach out to them?
2. Find something that works for you. It may be connecting online via social media, writing good old fashioned pen pal letters or having a text message exchange with someone when you’re able.  You do not need to be in the same physical space with others to help break your isolation. 

Please review, share and subscribe to Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

To some extent, I was very fortunate with my diagnosis.  My GP, a kilt-wearing, Harley Davison driving, older chap, was of the belief that, as the patient, you know your body best.  

He also wrote to, at the time, the UK’s leading ME specialist.  For me, that appears to be where the issues began. 

Sources for this episode include:

Action for ME - www.actionforme.org.uk  

The 2021 NICE guideline for ME for health professionals in England and Wales.

The 2010 Scottish Good Practice Statement (SGPS) on ME provides GPs with guidance on the differential diagnosis and clinical management of patients with ME. 

Please like, share and subscribe to Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

The list of symptoms people can experience is wide and varied and, unfortunately, they don’t seem to fit a set pattern.  As I share my story in the coming weeks and months, I’ll talk to you about some of the symptoms I lived with and give details about the treatments I tried and breakdown what worked for me and what didn’t.

Please like, share and subscribe to Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts.

As somebody who lived with ME for almost 10 years, I’m passionate about offering hope and inspiration to others who are experiencing ME.  I haven’t really shared my own story with ME in much detail over the years but in the past few months I’ve been invited to do so more and more to the point where I feel now is the right time to share more fully. I was bed-bound and wheelchair-bound with ME before finding my feet again and coming through the other side so believe me when I say, I understand what you’re going through. 

If you are a woman living with ME, or you have recently been diagnosed with ME, then I’m here for you!  I’ve been there, done that and I’ve not only got the t-shirt but I’ve worn holes in it too through all my trial and error! 

So why don’t you join me?  You can subscribe now to receive notifications of each episode and Season 1 launches on 16th May 2022 to round off ME Awareness Week.

Like, share and subscribe to Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts.