Back in August I was asked to come up with something Christmassy for the latest edition of the MS Trust’s ‘Open Door’ magazine. I tried my best to ‘think’ Christmas as I sat typing amid the sweltering heat of the summer; here it is:
When Christmas comes around, I can’t help but feel that my body has been taken over by The Grinch. You see, just like The Grinch, MS will do everything in its power to try and ruin Christmas – the merest scent of festive cheer can result in a Grinch-like tantrum of epic and debilitating proportions. Wanna enjoy a night out with friends and colleagues? Well, ok… but you’ll pay! Want to spend a day in town Christmas shopping? You must be mad with legs that bad! Want to decorate the tree, wrap up the gifts and still have energy left to cook a nutroast? Ho ho ho, No! The Christmas season has all the ingredients of an MSer’s worst nightmare. You’re expected to mingle and jingle with more family and friends than you’d usually see in the preceding 11 months combined. You inevitably find yourself shopping around for gifts to give to more people than you even knew you knew. And normal bedtime rules no longer apply – the work Christmas do doesn’t begin until the ungodly hour of 8pm, the kids will have you staying up beyond yours and their bedtime to see if you can spot Father Christmas flying by and, if you’re a churchgoer, Midnight Mass takes place at … midnight! A nightmare indeed for you and I, but an absolute dream for MS, who will be having a field day inside our frazzled nervous system. Disguised as the scrooge of Dr Seuss’ universe, MS will do its cunning best to steal Christmas…
Perhaps inevitably, when you are faced with your very own Grinch to wrestle with, Christmas can be incredibly hard going. The inescapable stress around this time of year will undoubtedly worsen many of our existing symptoms as well as sending our fatigue levels higher than Santa’s sleigh. But, if we can learn anything from Dr Seuss’ story, it is that Christmas can, and indeed should, mean so much more than the commercialised circus that it has become.
Just as the Whos embrace The Grinch and welcome him into their community, I find that it is essential to embrace MS. It sounds crazy, but if you have any hope of surviving Christmas you first need to live in harmony with your MS and that means allowing yourself time to rest and recover after celebrations, which means some vital (guilt-free) time out. It’s taken me a while, but I’ve learned that it’s ok to feel overwhelmed at group gatherings, particularly when your head is spinning and you feel as though you are trapped in an impenetrable bubble of pain that no-one else can see, it’s ok to accept help when it is offered or to ask for help when you need it and it’s ok to take yourself away from the festive madness when it all gets too much.
Personally, I am in an incredibly fortunate position; I am surrounded by the right kind of people who offer the right kind of support. I am rarely the host, which works in both mine and my potential guests favour. I have understanding colleagues who happily accept that I will always be the first one to leave the Christmas do. And I am blessed with the most loving family who go above and beyond to make my situation as stress-free as possible. However, despite all of this I still find Christmas challenging, which means that people worse off than me must find it taxing beyond belief. But all you can really do is try your best to plan ahead, pace yourself and, most importantly of all, try not to let The Grinch steal Christmas.