living with lupus, day by day, moment by moment

It’s Christmas eve, eve . . .  and the pressure is mounting.  So much to do! . . .  and yet, so little energy.  Holidays are really tough on us lupies.  Christmas used to be my favorite time of the year, but after I became sick, it became really hard to enjoy the holidays.  I am just too sick and tired to do the things I used to enjoy.  It was just impossible to do everything that I thought I needed to do.  AND that was just it.  I had to come to terms with the fact that I can no longer do everything.  This is my fourth Christmas since being diagnosed with lupus.  Each year has been different, and while I am still getting used to things, I have learned along the way to make the holidays a little more bearable, and therefore, much more enjoyable.  In learning how to acclimate to the new normal, here are a few things that I do to make the holidays more jolly:

  • Pace Yourself:  This it the number one golden rule.  While everyone is used to running themselves a little hard during the holidays, for us lupies, the consequences can be severe.  We will inevitably suffer a flare and will be too sick to enjoy any of the festivities.  Cut down on the tasks, the number of events and minimize your obligations.  Then, give yourself more than enough time to accomplish and engage in all the things you allow yourself to do this holiday.
  • Set Your Own Holiday Fun:  Our disease affects us all differently and even within ourselves, the disease acitvity can take many different paths.  For some of us, that means we can entertain guests.  For others, that means being able to travel to a friend or relative’s house.  Sometimes, that might just mean a quiet holiday at home or a quiet dinner at a restaurant.  While last year I traveled, this year, I decided to give myself a break and enjoy a quiet holiday at home. Every year is different!
  • Be Flexible:  I am a planner.  It gives me comfort to know that I have a set itinerary.  This goes directly against the unpredictability of lupus.  So, I plan loosely, giving myself enough time, and with some flexibility in case I have to change or cancel my plans.  My flares creep up on me unexpectedly, so I have learned not to get frustrated (or at least I try!) when plans inevitably have to change.
  • Just Say No:  During the holidays, there are a lot of engagements.  Company parties, family parties, school parties, and friend get togethers.  There is just no way you can do it all, even if you want to!  So you have to decline certain invitations. Perhaps you can decline some this year and take turns by accepting them next year.  It might be hard to pick and choose but your body will thank you.
  • Ask for Help:  It is hard to ask for help.  Even after five years of living with lupus, I still find it really hard to do this.  Still, it is essential that we ask for help and not try to do everything ourselves.  Usually your family and friends are happy to help out, and are relieved to know exactly how to do so.
  • Take Shortcuts: has become my best friend.  Whatever your online shopping favorites are, utilize them for your holiday shopping.  There is no way I could have gotten my holiday shopping done if I had to go shopping to stores.  You can also mail the gifts directly, which saves you a trip to the post office.  Also, if you have any local grocers/caterers that deliver, you should not be shy to use them for your holiday meals.  Whether you are entertaining or bringing something for potluck dinner, you should save the energy from not cooking and use it to engage with friends and family.  I tend to like cooking myself, but I take shortcuts when I can.  For example, I like to make holiday ham but this year, letting myself off the hook and buying biscuits/bread.
  • Take Time For Yourself: It is easy to spend the holidays running around, shopping and getting everything in order.  While enjoyable, it can very easily get exhausting.  It is important to take some time for yourself and not to forget about your needs.  Whether that is taking some time to rest or nap, to enjoy a quiet meal, to do some stretching . . . you have to put yourself first.
  • ENJOY:  Most of all, enjoy! This year, you might be feeling well or you might be bedridden.  With the unpredictability of our illness, it’s hard to know.  But, whether you are able to fully engage in the holidays or not, try to find something to enjoy.  My second Christmas after being diagnosed, I wa sick in bed and was unable to walk.  I was so sad and frustrated that I could not decorate the tree, buy presents or make Christmas breakfast.  Even so, I took pleasure in being with my family and watching some of my favorite Christmas movies.  It was a different holiday but memorable nontheless.

Happy Holidays!


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