Tips for enjoying the most wonderful time of the year with sickle cell
Winter is like that pair of shoes that look great on you, but leave you hurting
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I have a confusing relationship with winter. It’s one of my favorite seasons, but it causes me the most harm. It’s not unlike that one pair of shoes that look amazing on, but leave you with blisters and bruises.
But my “blisters” are severe musculoskeletal pain and my “bruises” are vaso-occlusive crises (VOCs) and hospitalizations. So here I am this winter, trying to walk to the pharmacy to pick up medications, attend my city’s annual Holiday Market, visit my family for Christmas, and complete all of my final exams without depleting my immune system so much that I require emergency room treatment for acute chest syndrome.
As someone with sickle beta thalassemia, I’ve learned that holiday travel and winter fun require special considerations.
Stick to the basics
During the winter months and beyond, staying warm and hydrated, continuing to exercise, and adhering to my medicine regimen are key contributors to optimal health.
While I do not experience many challenges with these during other times of the year, I practice heightened awareness about them when it’s cold outside.
Put it on the calendar — early
The easiest way for my body to become fatigued, a common symptom among sickle cell disease warriors, is to stack my calendar so full that I create no time for rest. To avoid that, I like to start planning for the next year in December, to give myself a month to make time for the big things.
Doing this gives me an idea of what my upcoming year looks like in terms of travel, important school and work deadlines, and activities with family and friends. And I can plan more self-care days for when I know I will be busier, and refrain from stacking even more on myself. If my partner and I are going to New York City on a Friday and I have a 20-page paper due two weeks later, the week in between would not be the best time to go camping or for long, leisurely outdoor strolls that could result in catching a cold.
Germ fighting
Nothing makes me more anxious than walking through a busy airport and sitting on a full airplane during the holidays. It’s resulted in respiratory infections.
Since the start of the COVID-19 pandemic, I’ve found that wearing a mask in the airport and on the plane, washing my hands more than usual, and carrying hand sanitizer make me feel more protected. Fewer colds means a decreased risk of a VOC.
Don’t drink as much
When I turned 25, I noticed that when I drank alcohol, I’d often wake up the next day in pain. While I love a Champagne toast for New Year’s or a wine tasting for my birthday, it’s best to refrain from alcoholic beverages at least 24 hours before or after traveling, or at least to double my water intake if I do have a drink. This helps to keep unnecessary pain at bay.
Practice self-compassion
Do as I say, not as I did.
On New Year’s Eve 2023, I was looking forward to ringing in the new year with my sister and our friends in Washington, D.C. I loved the outfit I picked out and was ready to have a great time. But somewhere between traveling to Atlanta the day before Christmas Eve and my flight home, I caught the flu.
I’d done everything I listed above and more, and still got sick and wound up spending the entire holiday in my childhood bed, nagging myself with “should haves,” something I teach my clients not to do in cognitive behavioral therapy. This, of course, only made me feel worse.
The reality is, I can do everything right and still get sick because I have a chronic disease that compromises my immune system. Now, when my plans are altered because of an illness, I’m better able to validate how I feel in that moment and allow myself the compassion I deserve.
Stay safe, warm, and hydrated during these chilly times. Happy holidays to all!
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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