We Can Adjust The Sails

Today I had sausage rolls and chocolate orange for breakfast. It’s that wonderful time between Christmas and New Year, when the real world is shut out, and I hunker down in my own festive bubble. The date is forgotten, time slows down, and for once, I live in the now. Eating when I want, sleeping in until when I want, doing exactly what I want. Afternoon snoozes in front of ‘Elf’, late night games of ‘Santorini’, and rejuvenating walks between rain storms. Trying to get the new gadgets to work, finding all the edge pieces of the Christmas jigsaw, and cheese for breakfast, lunch and dinner. Wrapping paper litters the floor, festive bowls of nuts and pretzels and crisps line the sideboard, and finished Lego models are proudly displayed. It’s a blissful time. A chance to sit among the twinkly lights and bask in the joy and love of the past few weeks. And be grateful that I’m not only still here for another lovely Christmas; but, for once, could enjoy the advent countdown too.

Plagued by fatigue and exhaustion during the colder months, and disabled by all of the over-stimulation that goes hand-in-hand with the festive season; since developing Pulmonary Hypertension, I’ve found Christmas difficult. For the past nine Decembers, I’ve opened my advent calendar with a mixture of excitement and dread. As the days count down, and more pictures are revealed behind windows; anxiety about the bustle to come, takes over. Desperate to still be surrounded by family on the big day, but aware that doing so needs many many more energy coins than I have; since becoming ill, December has become a quiet month as I rest and reserve my energy stores in preparation. Although it is worth it, although I adore those happy key days with my family, I do miss the magical build up.

But this year was different. By the time the decorations were retrieved from the garage, I was still feeling good. The Winter decline, which has been a feature of my illness this past decade, had not taken hold. For once, as the Christmas jumpers were ironed, and the homemade bunting hung, I still felt kinda strong and energized and able. Not ‘normal’ obviously, but great for PH me. And so, coming after an Autumn of lower oxygen saturations and horrid episodes of O2 deficit; an Autumn of being reminded of my mortality, and the unpredictable nature of my illnesses; I was determined to enjoy every December day. To take advantage of, and really appreciate, what I was able to do. To cherish every moment of the magical month. And to open the advent calendar with excitement. Just excitement.

So the cards were written, the tree was decorated, and twinkly lights adorned the house, before the month had even started. I went Christmas shopping on my own (wooo!), had an end-of-term lunch with my painting class; and a festive drinks get-together on our street, was a great chance to meet the many neighbours I’d not yet seen. We admired the decorated Christmas trees dotted around our local National Trust house, enjoyed a magical anniversary trip away to beautiful York, and my lovely Dad filled the house with festive tunes, when he came to stay for the first time. There were plenty of dog walks in the frost and snow and cold and dark. Kepler barked madly the first time white flakes fell from the sky, but quickly discovered how much fun it is to roll in! We’ve taken advantage of now living in a small market town; sneaky hot chocolates during work hours, pub drinks mid walks, and scoots to admire the shop windows and Christmas trees lining the high street. There’s also been my usual festive favourites- wrapping presents in front of Christmas films, baking the traditional boozy cake, and mulled wine evenings. For the first time in a decade, the countdown to Christmas has been bustling.

Furthermore, instead of spending the final advent windows resting and chilling, ready for the one big day; this year Christmas was a week long celebration. Amazingly, wonderfully, thankfully, I was well enough to join my family, for a few days of Early festive fun! I loved being part of the build-up; talking Santa, wrapping presents, and getting giddy with excitement. We drank mulled wine whilst cooking together, experienced the illumination trail at Calke Abbey, and this year’s game-of-obsession was ‘Carcossonne’. 😉 I even managed to fit in a breakfast date with my old flatmate, and mince pies at my Dad’s house. It felt like Christmas in every way, except the presents remained wrapped under the tree! We even had some great near disasters for the family ledger- my Sister’s car died en-route, my scooter conked out atop a hill on the light trail, and a pyrex dish exploded in the oven shattering glass all over our early Christmas dinner. Thankfully my awesome Mum drove 200 miles to rescue the stranded family, elves sourced me a replacement scooter, and Christmas dinner number one was gammon and cauliflower cheese- the only dishes to have escaped the glass! Early Christmas was saved every time! 😛

Unbelievably, after only a day of rest and solitude, my miracle body was ready for Phil’s Mum to fly in, and the celebrations to begin again. Our first Christmas in our new home. 🙂 It was our kind of perfect. Full and busy, yet calm and quiet. Christmas Eve was spent in the picturesque village of Castleton; scootering the festively decorated streets, and singing along to a famous carol concert in a cave! On the big day itself, fueled by Bucks Fizz and chocolate, we donned Santa hats and climbed to the top of our local peak; all before opening any presents! There were games and quizzes and the new King’s first speech. And we feasted on delicious beef wellington. And the next day, wrapped up against the bitter cold, we blew away the cobwebs at Lyme Park, before shouting “He’s behind you” at my first pantomime in a decade. Oh yes I did! It was a fantastic few days.

When I developed Pulmonary Hypertension, I thought Christmas had changed forever. Too ill for a busy advent countdown, the big day itself, the bright lights and loud music and laughing and playing. I assumed it would always now be shorter, quieter, smaller. And it was, for a decade. But as I eat Quality Street and stare at the twinkly lights, remembering this bustling December, I am reminded that -even after years- things can change. Always have hope.