Believe in ME with Rhona Barton

ME/CFS & Long Covid Don’t Take Holiday Time

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Episode notes

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).