Believe in ME with Rhona Barton Rhona Barton

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 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

p...

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 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, 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...