Planning for Family Gatherings when you have ME

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 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).