Getting Christmas Sorted with SMA
Last updated: December 2021
As a 31-year-old with SMA, Christmas is always pretty exciting. Ever since I was little, I’ve adored the sparkle of December.
But, as with anything else, SMA sometimes adds an extra layer of wrapping paper to get through at Christmas.
I have spent Christmas in just about every place you can imagine - home, hospital, and my personal favorite, on vacation!
However, as an adult, Christmas has still been the time of year I look forward to most. A time to be thankful, to spend with my family, and to recharge for the year ahead. It’s full of traditions I hold close to my heart, and it fills me with wonderful memories.
How the cold weather impacts my SMA
If you are like me and live through a cold Christmas climate, chances are that in itself presents a challenge.
I try my best to not hate anything. But I really, really dislike cold temperatures. It stiffens me up, my joints get sore and it can ultimately prevent me from doing things I love during the holidays.
This is all made worse by the fact my SMA has slowly progressed to the point where wearing long sleeves can make it difficult for me to move, and generally makes me quite uncomfortable.
Tips for dealing with the cold weather
I have learned a few tips to get me through the cold patches.
Ponchos are my friend. I have a wraparound, a pullover, and button-up ponchos. I have thick heavy woolen ones, and thin but warm ones for those days when it’s just a little chilly.
If it is exceptionally cold I wear two heavy-duty ponchos! They wrap me in layers of trapped air, which heats up and acts like insulation close to my body.
If ponchos aren’t enough, I add a few microwaveable heat packs. They come in all shapes and sizes these days, including long and thin, traditional hot water bottle shaped, and even in hand muffs!
In fact, at this time of year, I’m known for taking my dog Charlie for a walk with two blankets, two ponchos, and two hot water bottles. While everyone else feels a little frozen, I feel like I’m out on a fresh spring jaunt!
There are so many products out there to help me stay warm these days that I’m spoiled for choice. But a poncho helps me enjoy all of the festivities from Christmas markets to shopping and enjoying the outdoors at even the coldest times.
Feeling festive when I don't feel my best
As someone who sadly has had many respiratory infections over the years, I’ve had to get used to feeling festive and finding holiday cheer when I’m not exactly feeling up to much.
I’m the kind of person that bleeds jingle bells for the entire season. So I like to find new ways to be festive even when I’m not at my best.
Decorating my wheelchair
Possibly my most simple yet effective technique is that as soon as it’s socially acceptable, I decorate my wheelchair. Tinsel, fairy lights, and mistletoe are on my chair at the earliest opportunity.
This year I went all out with an added miniature Christmas wreath.
I’m quite literally a Christmas tree on wheels! Just my vibes. But what I love about it most is how kids’ eyes light up when they see me wheeling along with all the Christmas sparkle.
Getting lost in Christmas movies
I love watching my favorite Christmas movies with a hot chocolate with the lights off and phone put away. It helps melt away anything in the real world and I get to spend an hour or two in the company of epic characters in beautiful places.
Even if I’m in the hospital, it gives me a little glimmer of Christmas wonder for a while.
When it comes to Christmas food, there’s quite a bit I can’t eat because of my SMA. But what I love to do on Christmas Eve is to get the music on and make some treats.
I make 3 of my family's favorite treats - Mince Pies, jelly, and pavlova. It passes the time but also helps me get involved in the kitchen chaos which makes holidays in the Hollywood household so special.
Presents under the tree
Finally, possibly the biggest challenge for me is getting my presents wrapped and under the tree!
In order to prevent buying gifts for people who are currently helping me and spoiling the surprise, I buy most of my gifts online. Come November everyone knows if a package comes with my name on it, it needs to stay sealed.
I wait until most of my gifts have arrived and get someone in my family or team of personal assistants to help me categorize them - sometimes with their eyes closed!
I separate their presents into a box for each person which means I can spend the next several days wrapping with assistance, safe in the knowledge they won’t be wrapping their own presents.
That, of course, depends on them not peeking when I’m not around!
Enjoying the spirit of this season
With the cold conquered, presents wrapped and festive feelings found, what’s left is for me to enjoy the true spirit of the season.
My motto is to not save it all for Christmas Day. But during December, what I enjoy most is time with my family. Remembering the old good times and savoring new ones too.
That is what it’s all about for me.
I hope this year that you get to spend it with those you love. The greatest gift we can give and receive is the gift of time together.
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