Believe in ME with Rhona Barton

ME 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 around 17 million people worldwide.

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.

Hello and welcome to Believe in ME with Rhona Barton. This episode is the penultimate 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.

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.

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. ...

In this week’s episode I’m going to be chatting to you about what a good day looked like for me. This is something I would hope for on a daily basis. I’m sure you can relate to that. So let’s have a look at what that meant for me at various stages of my ME.

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.

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 ...