Chronic illness doesn’t care what time of year it is. Just because it is the holidays doesn’t mean it’s going to take a break, even when you feel like you desperately need one, preferably on a beach with a cocktail. The beginning of life or death doesn’t care what time of year it is either.
When you are a single parent you are often not thinking about yourself but with a chronic illness you must listen to what your body needs and often forced to seem selfish. There’s a constant juggle between energy and schedules, filled with doctor appointments, blood work, MRIs, medications and as my son refers to, boring stuff when he has to be carted along with me. Imagine how boring it is when all your energy goes into these. I am thinking how my son’s life hasn’t been hit with disease or other turmoils life throws us. He is so lucky to still hold onto the happiness of having your full health and life a head of you. How much I would love to go back to living so innocently and joyfully, without stress and disease.
Energy is an issue in the winter for me and my schedule gets busier than normal in December with Christmas and my son’s birthday only weeks apart. I knew I was in for a marathon this month, I was preparing myself for it, physically, emotionally and financially, but still life has a way of being unpredictable and you can only prepare for so much.
Saying goodbye to an old friend and happy birthday to my son at the same time certainly makes me reflect on life and those we have around us.
Leading up to the days before my son’s 7th birthday there was been a heavy focus on toys, cake and a party. I found myself reflecting on how 7 years before I only had 14 weeks to prepare for motherhood, a task I thought I never wanted but now cherish as a blessing that brings me the biggest joy in December.
However this year I am saying goodbye my old friend and I am trying to not let depression shatter the magic of my son’s birthday and Christmas because I know it has a massive impact on my rheumatoid arthritis, both which have an affect on my mothering.
But sometimes when it rains it pours, living in Vancouver BC it’s hard to not feel down in the winter with how much it rains on us. My vitamin D is down, my doctor says that’s common with anyone living here. I am trying to not feel so bleak.
My father is not visiting me this year as his partner is going through chemotherapy for cancer. They are all the way in Thailand and this year I feel the distance between us. For Christmas this year I created a website for his art, I could tell it brought him some joy in a dark time. Thanks to the internet we can still connect from across the world. Ever since the death of his mother, my grandmother, two days after Christmas, the holidays have always had a shadow cast over them, each year getting darker.
I’ve had a hard time getting into the Christmas spirit. I’ve been trying so hard to protect my son from the ugliness of life to make Christmas special for him. This is hard for any parent, let alone one dealing with chronic illness on top of it. I find myself fighting through fatigue, depression and pain to just keep up with life. It’s not just mine I am looking after, but also my son.
At 7 he’s confused if Santa really exists and I am not quite ready for him to lose the magic of believing in Santa. I need to be magical, through symptoms and stress. I need the joy of creating joy for my child to distract myself from the shit going on in my life and the world. We need the Christmas lights to bring some sparkle hope in ours lives during dark times.
I’ve been struggling with dexterity in my body and fatigue to prepare for Christmas while remembering my friend who was diagnosed with Muscular Dystrophy around the time I was diagnosed with rheumatoid arthritis. I am angry at myself for not visiting him yet I knew deep down the inevitable was steadily approaching one day. You just sometimes never know when. There were many Christmas and New years I spent at some of my happiest times with my old friend, when we were both young and disease free. I used to go go dance for his psychobilly/surf band The Dead Cats then skip a decade I am raising money for his wheelchair. It’s hard to not have a heavy focus on what you can’t do anymore when memories like this pop up.
It was also hard for me to not focus on what I couldn’t do anymore when I receive comments from co-workers that I am useless there if I can’t do something because I am struggling with the dexterity in my hands and wrist. I can feel the frustration of not being as able as some and I can sometimes see or experience the frustration from others when I need help. Never a fun experience. I attempted to return to one day a week of work to provide the best I could for my kid during the holidays which made it special for me, that I could handle that.
I am grateful for the Christmas Bureau and friends who helped me make it special for him. There’s no bonus pay with disability during Christmas, so I had to be smart and reach for help. My Christmas miracle was being sponsored by employees of the Ministry of Jobs, Trade and Technology.
Now all I want for Christmas is a painkiller for my rheumatoid arthritis.