Warning: this post may come across a bit Scrooge-like. If this offends you, stop reading here.
“It’s the most wonderful time of the yearAndy Williams
With the kids jingle belling
And everyone telling you be of good cheer
It’s the most wonderful time of the year…”
As we go about our daily business in the month of December, not many hours go by without hearing or seeing that line from Andy Williams’s classic: it’s the most wonderful time of the year.
But I got thinking today, is it really? Is it really the most wonderful time of the year? Is it really the “hap-happiest season of all”?
Don’t get me wrong I’m a real fairy lights, carol singing, decorating the tree, and of course the general all-you-can-eat-and-drink Christmas Day itself kind of person. After all I’ve got fairy lights on my wheelchair. I’m definitely no Scrooge.
However, this month is hard work both physically and mentally.
For those with chronic illnesses actually it’s not the most wonderful time of the year at all. Suddenly one’s routine go out the window, pacing is in direct conflict with the desire to Do Stuff. All manner of food stuffs are being consumed like some form of competition, most likely aggrevating an already sensitive digestive system. Noises and lights are a-plenty, Christmas tunes and fairy lights on every street corner, sending our already hyper-sensitivity to sensory overload on overdrive.
Christmas is not the most wonderful time of the year for us “spoonies” (the slang word for those with chronic illness). I’ve been asked many a time by others: does the damp, cold air affect you? Yes. Yes it does. For many people ME CFS brings with it chronic pain, that is pain that doesn’t ever go away and lasts a long time. The cold air most definitely has increased my pain, without a doubt.
For me Christmas this year has been an emotional one. And emotions I’ve now realised use up many more spoons than physical energy does.
The most emotional bit has been the realisation that it’s been over a year since falling ill and I’ve never actually recovered. Other people’s lives have continued, while ours appears to have stopped. Declined in some way. And all because of this wretched illness. Never did I anticipate that getting a powerchair would be the highlight of my season, the delivery of a trusty steed that could now get me around and about with less energy expenditure.
As the month of December passes, I see people going off to Christmas parties, a time of celebration or simply a night to get into the glad rags and let your hair down (metaphorically or literally depending on how much hair you have!) Gone are the days of endless social gatherings, whether they were official “Christmas parties” or not. The rapid decline in these has left me well, lonely. I don’t mean to be moaning in any way as I’m very lucky to have wonderful friends and family who have supported me through all this, and I’m very well aware I wouldn’t actually be able to cope with many social gatherings anyway but it’s the realisation that those aren’t going to happen that hurts.
Christmas is also a time of infection flare-ups. Bring together a group of people (especially when children are involved) in a lovely, warm, central-heated home and germs and bugs are flying round like its party season for them too. Life with chronic illness generally means you don’t have the immune system of a healthy person, whether you’ve got several autoimmune diseases or just one, the body’s ability to fight off bugs is not as strong as other peoples. So acute infection on top of chronic illness is not a nice combination.
Money. Oh money. I don’t honestly know how anyone affords Christmas without going into debt on a yearly basis. Christmas is expensive. For those with moderate or severe ME CFS (like me), we cannot work. The spoon quota required for doing a “regular” job is just not compatible with a complex disease like ME CFS. Living with disability has been shown to be on average £500 a month more expensive than living costs for those without disability. I’ll let that sink in with the knowledge that those with disabilities are unlikely to be in work either. Not exactly a surprise to then learn that 1 in 3 people with disability are in poverty. Therefore, the Christmas period with its present giving, house decorating, party going, is a difficult time.
I apologise if this post has been truly depressing, I assure you it hasn’t been fun writing it, but I wanted to get it out there. If you know someone out there with a chronic illness or disability, say hi. Send them a message. Comment on their choice of fairy lights, if they have them. You never know, that might be the equivalent of a party for them, their version of a celebration in some way.
To all you spoonies, I wish you a relaxing and peaceful Christmas.
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