Having A Bad Day Day with ME/CFS & Long Covid

Believe in ME with 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 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).