chronic illness, habits, holidays

Holiday Planning When You’re Chronically Ill…

Hey there.  It was a long week!  I had doctors appointments Monday, Wednesday and Friday, changes in medications, a bone density test, a traveling husband, a flu shot for my kiddo, and lots of preparations for upcoming birthdays and the holidays.  Getting it done took a lot of energy and focus last week, but we made it through!  I have to say though, a funny feeling began to creep in for me this week.  As I’m preparing for the holidays, I’m realizing how nervous I feel about how they are going to go for me and my family.

I have been dealing with chronic illness for six years now.  But, by far this year has been the most difficult year of my life.  Along with the diagnosis of Sarcoidosis came many complications.  Physical ones like esophagitis, pericarditis, costochondritis, dry eyes and mouth to name a few.  And logistical ones like weekly doctors visits, monthly infusions, medical procedures like biopsies, and trips to the emergency room.  There is also a severe level of fatigue that I can never seem to escape.  Even enjoyable activities like spending time with friends and family are exhausting.  Sooooo, I think it’s understandable that I have lost some trust in my body to behave itself, and I also have gotten used to my day being hijacked in some way from my illnesses.

With the holidays pending, I feel a little pit in my stomach about how to handle things.  How do I manage my limited energy this time of year when I’m just learning how to manage my new “normal”?  I think that I am going to handle this holiday season the way I’ve handled 2019 as a whole.  It’s going to be a bit of an experiment to see what works and what doesn’t, but I’m hoping to find a good balance this year.  I’m also hoping that because I have established some great routines for myself already that they will be the cornerstone to helping me manage the extra demands that the season will put on my energy.  So, that is step one for me, I will not abandon my routines;)

Step two of this experiment is to decorate less, and it actually began at Halloween.  It was then that I remembered last holiday season (of 2018), and how hard it was for me physically.  Sarcoidosis was already brewing, but I had no idea what was going on because I hadn’t been diagnosed yet.  Decorating the house like a Pottery Barn catalogue was what I had done every year of my adult life, but it was completely exhausting.  And when it came time to pack away the holiday season of 2018, I was completely spent.  I just couldn’t understand why and what was happening to me.  When Halloween rolled around this year, I began by taking out the bins of fall decorations and relentlessly going through and purging 80% of what I had.  And you know what?  Our house looked super cute and festive without tons of decorations!  So, I am planning to do the same for Christmas when that rolls around, and I will write a post about decorating with less very soon.


Step three of my plan comes in list form, no surprise there, since I love me a good list;)  Getting things out of my head onto paper helps me feel so much better and less overwhelmed.  I am able to see what exactly what is swirling around in my head, what needs to be done and how to make an organized plan to deal with it.  Taking something that feels really big, and breaking it down into manageable steps is the best way to handle things, for me at least.


The fourth step to help lessen the overwhelm is to limit commitments.  I am so grateful for all of our friends and family, but I know that I cannot participate in every opportunity of celebration that is available.  I would love to be able to attend every gathering, but I have to choose between exhausting myself and possibly causing a flare, or being selective to maintain my health and be able to enjoy when I can participate.

I am not new to celebrating the holidays with autoimmune disease, but I can say that I have not found the key to success for myself, yet.  I am truly hoping that this year my experiment yields some good results;)  I’ll keep you posted along this journey and hope to hear how some of you have thrived, not just survived the holidays.  Because in the end, that is what the season is all about.  Spending quality time with your crew, practicing gratitude, and finding joy in the world around us.

Take good care,


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