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Wishing to be at home for Christmas: Emma's story
All I want for Christmas is just to be at home
People keep asking me, as they tend to do at this time of year, what I am doing for Christmas Day. And, while crossing everything crossable, my reply has been “just to be at home.” Something I’m not taking for granted until it happens. If there is a plan, it includes no grand plans at all. No venturing out to visit relatives or loved ones. Just to be snuggled on the sofa with my cats, full of the Christmas dinner my husband Geoff will be cooking, listening to my grandad snoring across the room. If it all works out, this year might just feel like the best Christmas ever.
Not exactly what I asked Santa for
The last two Christmases (and New Year’s Eves) have been spent enjoying NHS hospitality, and while I was grateful to be there, it wasn’t exactly what I had asked Santa for. It is always going to be a risk that you might end up staying in hospital at some point over the festive period when you’ve got cystic fibrosis, despite working hard to ensure that doesn’t happen (trying not to catch any viruses, the difficulty of saying no to many of those lovely twinkly events that fill people’s December). I had certainly come close to spending the big day in the big house before; I’ve been discharged on Christmas Eve a couple of times, and for the last seven years, there has been the unwelcome tradition of Geoff and I watching the Strictly Come Dancing final on a tiny hospital television.
Although I was obviously poorly enough to need to be there (the CF teams work hard to get everyone home that can and last year I was the only CF patient on the ward), I was well enough to enjoy, or at least appreciate, most of the day – I think the most horrific part of last year was when the catering team didn’t give me any roast potatoes or gravy with my Christmas dinner! Maybe one of Santa’s elves was listening after all, because my lungs behaved enough for us to go out for a walk and a cheeky trip to the pub for some (non-alcoholic) fizz. All hell did break loose on Boxing Day, so I suspect I might have still been on the naughty list when I was treated to two ambulance rides in one day, and my poor consultant had an earlier start to his day than planned.
Trying to keep things festive – but it's just not the same
It’s quite difficult to feel in the Christmas spirit, although the nurses bursting into my room with some presents and an excellent flash mob-style Christmas routine (as well as less welcome morning IV antibiotics, another Christmas wish disregarded) at least ensured the day started with laughter. Despite ensuring I had a steady supply of Christmas dinosaur jumpers, a Lego Christmas tree and decorating my room with all the fairy lights I could muster, there was no getting away from the fact that I was stuck in hospital, quite unwell, not doing all the things we had planned with the people we had planned.
Missing the best bits
Because it’s not just that one day you miss, but everything around it (which is the best bit in my opinion). Until 2024, my husband had never put up the tree, and as it didn’t meet my “exalted standards” last year, we agreed he didn’t have to bother! I love writing cards and wrapping presents, baking fruit cakes and mince pies. I love how much I love my friends, making wreaths and going on mulled wine crawls together. Going carol singing and doing festive quizzes in the pub. It’s not just me that loses out either; I didn’t see my mum or my grandad much over the last two Christmases, and although it was nice to spend the day with my husband, just the two of us, he missed out on so much too and it was, he tells me, super stressful for everyone else and “a bit boring watching you sleep” through most of the day (I think that’s what you are meant to do though right?) and, most importantly, it wasn’t at home. At home, where the roast potatoes wouldn’t have run out, Geoff would have made some of his excellent gravy, and we would have met our friends in the pub for a drink before our lunch. We didn’t get to walk around looking at our neighbours' Christmas lights with my grandad or argue over board games. I didn’t get to bully everyone into wearing their party hats until they went to bed.
Instead, I had to spend hours hooked up to IVs, trying not to bring up my NHS brussels sprouts (because of side effects, I love sprouts). I didn’t get to wake up pinned in bed by two lazy cats and Geoff bringing me a cup of tea, and we didn’t get to fall into bed in a tipsy, happy daze at the end of it all. It was the complete opposite. I think I cried waiting for Geoff to arrive because he was running late, and then I cried when he had to leave again. Both years. It wasn’t any easier the second year, just because I knew it was coming.
Finding the silver linings
In the end, I think there were some positives. I’ve had Christmases at home where I have been on IVs or feeling unwell and still had to do all the festive stuff, and that can be hard in a different way. I didn’t have to see or spend energy on people I would rather not have, Geoff didn’t have to cook the Christmas dinner for the first time in 16 years, there were no expectations or visitors to entertain, and I probably saved a fortune not going out for New Year’s Eve for two years (not to mention not having to hide in the toilets come midnight to avoid all the hugging and kissing/germ spreading) and it puts things into perspective. That Christmas Day is, in fact, simply that. A day, regardless of what it means to you personally, you can enjoy however and whenever you like. The last two years, I have been lucky enough to enjoy multiple Christmases at times of my choosing. Once I was discharged from the hospital and feeling better, we had Christmas do-overs at home with our families, when we swapped our gifts, and Geoff had to cook after all. And we hosted Friend-mases where we did it all again.
Christmas on our own terms
I’m really hoping that I get to enjoy both the Strictly final and Christmas Day at home this year, but I’ve spent quite a bit of time on the ward and have only just finished a long run of IV antibiotics that I began all the way back in May. I don’t plan to be visited by the hospital chief executive in a terrible jumper three years in a row, but I don’t think I will be able to believe that those wishes have come true until I’m sitting around my own dining table finishing off everyone else's sprouts.
Turn worries into wonder this festive season
For people with cystic fibrosis like Emma, the festive season can be the most worrying time of the year. Many will take being together for granted – seeing loved ones, dancing at parties or strolling the Christmas markets. Yet for someone with CF, they face tough choices – join in and risk infection, or stay at home and miss it all.
With your help this Christmas, we can fund the revolutionary research that can help turn worry into wonder for everyone with cystic fibrosis.
