Having a chronic illness is not super fun. Having a chronic illness in December is particularly less fun, especially when your birthday is also in December.
December is snow (in most places) covered trees, while it is still peaceful and pretty in the morning. December is a plethora of evergreen trees, an over-abundance of cookies, and extra exciting social gatherings. December is holidays, full meals, extra money spent and many, many extra ways to show love and support to others.
I love December, and I love Christmastime and I love holidays and the social, family and intimate gatherings that come about this time of year. But I do not love December with Multiple Sclerosis; bear with me, this post will be pretty MS heavy but I’ll end on a positive note.
The first thing I think about is how my body has this wonderful inability to regulate its own temperature, which leaves me either shivering or sweating, there is no in between. I dress in layers and either wear a tank or the biggest, fluffiest sweaters. So, again, I thank my lovely boyfriend for turning up the heat when he knows I’ll be home early and for sleeping through my fits of rage as I wake up in the middle of the night and violently throw the blankets to the floor. This makes December, and the following winter months, a challenge.
Along with this dysregulation comes an increase in pain. So, the second thing I often think about is this: I have never stuck a paperclip in an outlet but my arms and legs often feel as if I had (well what I imagine it to feel like). I feel as if every single nerve in my body is misfiring and that, my friends, is no fun. And a third thing I have to think about is the fatigue.
Extreme exhaustion that comes with chronic illness, an exhaustion so intense that I need to rest after waking up because the act of sitting upright is too much. Exhaustion that makes the thought of all the hustle and bustle of the season terrifying. Don’t get me wrong, I love doing all the things that are required of December and of Christmas, but I often worry I will be too worn out, or I won’t feel well; which will then take away from the holiday cheer.
Which leads me to my next thoughts during this time. Guilt. Guilt around not being able to give as many gifts as I would like. Or guilt around the fact that I am tired, or don’t feel well and cannot do as much as I would like. Or guilt around my own insecurities and eating all the things I know will make me struggle. For a time so cheery, there is a lot to worry about, whether necessary or not.
So, because of all this I focus the most on self-care during the months of December through February, or even into March. But, it’s the boring self-care. It’s the self-care that involves taking my medicine on time every day, and forcing myself to drink enough water each day; and listening to my boyfriend when he says I should chug a glass of water before my ritual morning coffee. It’s the self-care that reminds me to bathe even when the simple act of standing for 15 minutes appears so daunting; the self-care that tells me to make sure we have gotten to Wegmans prior to the weekend in order to eat some things of our own choosing. It’s the self-care that says even when I am in a lot of pain, if I can at least do three or four yoga poses, I will be okay. And it’s the self-care that reminds me to talk to people, to tell them how I feel, to listen to how they are doing and to work actively to respond.
Self-care is hard. But it is these simple acts that make December, and this time of year more enjoyable and more fulfilling. It is absolutely the extravagant baths at night, and a glass of wine with dinner on Sundays, it can be a massage on your birthday and extra fries with dinner, but those wonderful, loving acts are not sustainable. Those things do not help me in the day-to-day, though I absolutely wish I could live on bath bombs and Riesling.
I am learning more and more that I need routine and I need structure to help on those days where there is no routine. On those days that are full of family and full of fun, I know I will be okay because the other days have been so helpful. I am learning that it is okay to say no to plans, despite the guilt it brings, as long as it means I will be able to care for myself in ways others may not understand. I am learning that it is okay to share how you feel, despite that guilt and that fear, if it means I will be able to have meaningful conversations moving forward. And I am also learning that MS sucks, but I am allowed to ask for support and lean on those around me, especially during this time of year.
MS aside, everybody could probably benefit from daily humdrum and simple self-care but, I am not sure what those without MS need, or even want, to help when inevitably the holidays sneak up so quickly. All I know is that in order for me to truly be present and genuinely experience the love and magic of December and of Christmas, I need to focus on me more often than not. I need to hold myself accountable to practice more self-care daily, despite how boring it may be. And in doing so, I am reminded how wonderful Christmas is with all of the love and the kindness I am so very fortunate to have around me.
So, due to my renewed love of self-care I have been able to entertain amazing humans at my home, I have been able to decorate, though minimally, ( because I do not trust my feline friends) and I have been able to say yes to every invitation and prepare adequately for the delicious meals to come. Because of this self-care I can wake up each day and know I will manage and know that I have the time to rest if necessary. And since I am able to be present and stay grounded I know this Christmas will most likely be my favorite one yet.
These Are The Things I Have To Think About 