Without a doubt, the best Christmas I have had with MS was the year we unexpectedly got snowed in. Thankfully, we had enough heating oil and food in the freezer to keep us warm and fed but all the trimmings went up the chimney. I didn’t get to queue for hours in the cold to see the Big Man in the Red Suit. I didn’t get to trawl the shops to find a donkey costume (for the school nativity play- not me!). I didn’t get to sing carols and wear a paper hat while wedged into a restaurant for second sittings. The highlight was that I didn’t get a telephone-book-sized credit card bill in January.
I DID get to play marathon games of Scrabble with the kids. I got to laze in front of the fire and watch mediocre TV for guilt-free days. I got to build snowmen, snow-dogs, snow-aliens. I got to invent questionable meals from the slim pickings we had left in the fridge. I got to wonder why I was putting myself under so much pressure the years when the roads were clear.
Big life events and holidays can be difficult when you have MS. Weddings, funerals, birthdays, Christmas… The times when you need to be “on” for a long time. Or maybe you feel that you are expected to be “on”. No matter how you wrap it up, being ill sucks when you want to have fun like the other kids. I do use the “buy now, pay later” approach sometimes but boy, do you pay! I read Simon Fitzmaurice’s book “It’s Not Yet Dark” during the year about how he lives his life with Motor Neuron disease. He writes about “being a person- not a disease”. He says that “it’s not about how long you live but about how you live”. What wise words!
There is a distinct possibility that I might not be as mobile next Christmas, so I want to “tear the arse” out of it while I can. To do everything on offer, in case I can’t next year. To tick a few things off the bucket list. The pressure can be overwhelming and a lot of it comes from within. I think I get a bit mixed up between quantity and quality.
Christmas can be a happy time when you are in a happy place. It can also be a very sad time when we mull over the year’s lousy events. I feel sad when I look around and see friends of mine (yes, REAL PEOPLE WITH REAL FEELINGS!) who have declined during the year because of MS. When we plan something but it doesn’t happen because of MS. When somebody I like can’t afford to buy bread and milk because they need to buy drugs for their MS.
But this wasn’t meant to be a sad blog. It’s about admitting that stuff happens during the year but lots of amazing, wonderful and unexpected things happen too. The year we got snowed in, we had a stripped down Christmas. Board games, ghost stories and snowball fights replaced the bright lights of Santa’s Grotto. The Grinch was talking sense when he remarked that “maybe Christmas doesn’t come from a store”…..
Here’s wishing you and yours a Merry Christmas: full of triple word scores, selection boxes and “Only Fools and Horses” marathons! Be good to yourself and do what you can. Say “YES” to life for what it is.
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