With chronic illness, conserving energy over the holidays is a must

My favorite time of year is nearly upon us: the winter holiday season! In my household, in addition to the regular holidays, we celebrate everyone’s birthdays, all of which fall between December and January. However, throughout all the festivities and preparations, I usually push my body harder than I should.

Somehow, I became the cook for every major holiday celebration and typically host family and friends for big events. This means extra grocery shopping, sometimes waking up before dawn to get the cooking started, spending hours in the kitchen, and dealing with a lot of cleaning and decorating. Years ago, it all sounded like a lot of fun. But after becoming permanently ill with several rare autoimmune diseases, I’ve had to reevaluate how I get things done.

In 2018, I was diagnosed with a rare blood disease called immune thrombocytopenia, which causes my immune system to attack my platelets. This leads to unexplained bruising, nosebleeds, extreme fatigue, heavy menstrual cycles, and anemia. Additionally, I’ve lived most of my life with lupus, which exacerbates my fatigue. Then, in 2020, I developed two more autoimmune diseases: atypical hemolytic uremic syndrome and thrombotic thrombocytopenic purpura. These diseases cause my immune system to attack my red blood cells and plasma, and tiny blood clots can form in my organs.

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Staying off my feet

In September 2020, I nearly died due to an exacerbation of these diseases. The damage to several organs was permanent and affects me every single day. I require lifelong infusions with difficult side effects, and I suffer from chronic anemia and shortness of breath, as anemia prevents my limbs from receiving enough oxygen. And let’s not forget the constant fatigue.

Thus, I quickly learned that I needed to adjust my approach to holiday preparations. Pushing myself beyond my body’s limits can be reckless and dangerous, leading to more health issues. It’s incredibly frustrating to feel cognitively fine while experiencing the limitations of an elderly body.

So the following are some strategies I’ve developed to make holiday preparations easier:

1. I use online ordering for grocery pickup, or I shop first thing in the morning when the stores are less crowded.
2. I plan meals, events, and shopping lists ahead of time to limit the time I spend on my feet in stores.
3. I prepare meals while sitting at a table, including chopping vegetables and trimming meat.
4. I delegate tasks, which has been difficult for me to get used to, but my children and fiancé are perfectly capable of helping.
5. I prepare as much as possible in the days leading up to a big holiday event so that I don’t have to stand as much on the day of the activity.
6. I pace myself. Not everything needs to be done immediately, and conserving energy is crucial to avoid becoming severely ill.

These small changes have made a tremendous difference for me, given my chronic illnesses. Every person is unique and has different physical limits, so listening to your body is crucial during the holiday season. If I want to be here to take care of others, I need to take care of myself first.

Note: Bleeding Disorders News is strictly a news and information website about the syndrome. 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 Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.