Ready or not, here it comes. The holiday music, festive decor, savory food, and enticing sales are already in full swing. For those of us living with or caring for someone with lupus, it might give you pause, particularly as we emerge from the pandemic. Approaching this time of year can present its own unique hurdles and hence its own unique preparation. Here are a few tools that guide me along the way. I hope it proves useful to you too:
Give yourself the very grace you seek, and make an effort to celebrate YOU. (I have to remind myself of this daily). Holidays can conjure up feelings of loss, grief, fear, rejection, and a reminder of dreams deferred throughout the year. The lived experience of lupus can be an ever-present burden, with few wins far and in between. Intentionally plan time for joy and embracing where YOU are in your journey. (Insert exhale). Lean into the absolutes of your faith or affirmations even more. I just recently thanked my body for bringing me through 10 whole months of this roller-coaster year. Yeah, we did that!
It might seem trivial, but I try to plan my hairstyle, outfits, or even my skin care routine ahead of time. It’s a valiant attempt to “control” what’s in my purview. For example, washing, styling, and maintaining my kinky-coily natural hair can literally deplete my spoons in one swoop. (But I wouldn’t trade it for the world. We’ll talk natural hair and lupus another day). I opt for a protective style that’s quick, manageable, hat friendly, and allows my discoid lupus scalp to breathe. Woo-saaah!
My poor joints are a bit achier, stiffer, or even warmer during the fall/winter weather. After all, it’s the fourth quarter and they’re about done! Here’s your reminder to check that inventory of prescriptions, supplements, assistive devices, etc. Refills can be challenging with pharmacy holiday hours, vendor shortages, or delivery backlogs. I also verify my providers' holiday hours in the event things go left – and boy, can they!
Mitigate Triggers or Stressors
I’m tensing up now as I think of all the “in real life” gatherings, inflammatory food pushing, going from 0-60 in socializing, the doctor appointments, lengthy store lines, unreasonable crowds, “All I want for Christmas” on a loop, lots of standing, walking, waiting, throbbing feet, achy hands, my fluctuating body temp, the flickering lights, the 10-day migraine, or the sales rep trying to upsell me when I ask for a seat! ARGHH. Practice hearing yourself say NO. (It's a full sentence.) I ask myself, “Will this activity, person, place, etc. honor my health?” If not, it’s a hard pass.
Holidays should really be spelled “money.” By now, many of us know the burden of lupus is also accompanied by an unwarranted economic burden. The struggle is already real, plus the stress of the disease and feeling like you’re often “robbing Peter to pay Paul.” We have to be honest with ourselves and give consideration to out-of-pocket expenses, a fixed income, monthly expenses, lack of access, etc. Plan ahead. I've gotten creative over the years with regifting gift cards, a beautiful handwritten note, or even a thoughtful phone call. If they care for you, they will understand.
While most people can afford to live a little during the holiday season, those of us with diseases like lupus operate a bit more cautiously. Our truth is different -- what we drink or eat can have an almost immediate impact on our symptoms. Activities centered around food are probably what I personally dread the most! I often try to plan my needs and share them; it’s a roll of the dice where it lands. (Worst-case scenario: I keep a fruit/power bar on me). I learned through many trials and errors that my nutritional health is one of the most important drivers of my entire health. A few years back, I adopted an alkaline diet to balance the toxicity from my immunosuppressive medicine, inflammation, and overall well-being. I had nothing else to lose, and since then I've seen fantastic progress. I can’t risk that as we rock around the Christmas tree. Consider alcoholic alternatives, whole, and fresh foods, eating at reasonable hours, and bringing your own festive dishes.
Check in with yourself throughout the day – in between the eggnog and black cake. It’s easy to lose track of time and your hard-fought autonomy, particularly if you’re the patient. You might start the day or week feeling like all cylinders are firing, yeah! But one mall visit with the kiddies to see Santa can leave you spent. By the end of the year, my energy levels and mental health often feel stretched. We don’t have to be productive all the time. Rest is also productivity. I’ve found reprieve in unplugging from certain areas and practicing self-care. Outsource what you can. Enlist help with cooking, decorating, year-end deep cleaning projects, etc. Reflective questions: Am I setting and keeping boundaries? Am I getting enough rest? Am I doing all the beneficial things that got me here: movement, napping, praying/meditating? Eating the right foods? Am I permitting myself to break dates? How am I feeling? How’s my mental health? Do I have prep and also a recovery day? Am I hydrated? Have I tapped into my support? How's/where’s my joy today?
So there you go, just a few more tips to add to your toolbox. Approach the holidays like you approach your daily journey with lupus, day by day. Each day is a precious gift, and by the way, so are you. While many may pour their expectations into the New Year, we have the perspective of approaching each day with renewed hope and purpose. We’re already doing hard things with lupus, no need to make the holiday season one of them.
Photo Credit: skynesher / E+ via Getty Images
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