Have Yourself a Very Spoonie Christmas.

Every year the holidays come around and I end up being exhausted.  The past two years, I decided to seriously watch my energy levels and actually enjoy the holidays.  I’ve learned to prioritize what is important over the past 14 years living with autoimmune arthritis.  Here are my seasonal strategies to help me survive the holidays.

1.  Avoid the malls if possible.  I love to shop.  Seriously, I love searching racks or shelves for the perfect item.  In the last 10 years, I have struggled not only with the walking that needs to be done in a mall, but the parking lot (lots of extra walking there), and carrying the bags.  My arms and hands just don’t do well with that anymore.  I now shop online for almost everything.  The downside, I have a ton of boxes to breakdown for recycling.  The upside, I save my body from exhaustion.  (I do the same with grocery shopping.  Some stores allows me to order my food, then pick it up at the store.  Grocery shopping is my mortal enemy so this helps a lot.  There is no fee to pick up the groceries this way.  There is a fee if you want to have the food delivered directly to your home.  Check your local stores to see what their policies are for pick up and home delivery.

2.  Sleep.  I’m a horrible sleeper.  It takes me 1-2 hours to fall asleep.  During the holidays, I stick to a specific bedtime.  I might read, but I am laying down and resting.  Sticking to that schedule helps me when I want to attend Christmas parties or events.  I have a little more rest in my bank to pull from when needed.  I also try to nap at least once on the weekend.  That doesn’t always happen, but it helps when it does.

3.  Decorate.  I used to go all out.  Now I limit my decorating to the Christmas tree and outside lights.  I live alone and it was just getting too hard.  I put up what I know I will enjoy and what I can carry easily.  It works and my house looks great!

4.  Travel.  My family lives two hours away so I have to travel for the holiday.  I now plan out my wardrobe a week ahead.  I am going to admit, that is NOT easy for me.  I do the laundry the previous weekend and pack those clothes away immediately.  Since I am staying with family, I know I can do laundry once I get there.   My car is packed the night before I leave.  I admit, packing is my greatest stress, so being organized (I’m not an organized person) is a must!  I just got new luggage that is really arthritis friendly, too.

5.  Cooking/Food prep:  Ask for help.  If you can’t do it all, ask for help.  If you enjoy doing it all, make sure you have someone on clean-up duty.  Prioritize what needs to be done.  I used to love baking batches and batches of cookies.  If my hands are not good, I buy pre-made dough.  People like to tease that I am cheating.  Hmmm…not hurting anyone and the cookies taste great.  Not cheating, just living more effectively with autoimmune arthritis.  I still cook my Christmas meal the old-fashioned way….my mom does it 🙂  Don’t worry…I do all the clean up and help with prep.

6.  Don’t push yourself.  I love getting together with family and friends.  Some understand my disease and the difficulties I have.  Others do not.  I can’t get an invite to go out at 9-10:00 pm anymore.  Spontaneous “getting ready” is just work with my body some days.  If people can’t give me a heads up, I can’t hang with them. I hope they don’t stop asking, but that is a risk I take.  People who really care, will help me out with this.

7.  Style.  I dress in comfy shoes and clothes. This helps me when I go to parties or have an event where walking is involved.  If I am comfy, I’m more likely able to hang around a while longer.

8.  Alcohol.  I love to enjoy a good beverage, but alcohol and my medication causes my head to burn up.  Literally.  I get flushed cheeks and almost immediately go into a hot flash.  I have to limit myself to 1-2 drinks spaced out over a night.  This keeps my hot-flash reaction in check.  Often times, I drive so drinking won’t be an option.

9.  Ask for help.  There is no shame in asking for help.  I’m fairly open about my disease and my struggles.  I have a good support system but it still took me a long time to ask for what I needed.  Once I did, things became easier.  Of course, there were some who just don’t get it and are not supportive.  I’ve had to limit my time with those people.  Sad, but true.

10.  Relax & Enjoy.  Whether you have a week off or just a day.  Stay in the moment.  Don’t stress over what you have to do tomorrow. Enjoy time with family and friends.  Celebrate what means the most to you.  Life can be so short.  Make as many moments count as you can.

These are strategies that work for me.  They won’t work for everyone.  I am single without kids, so some of these things may not apply to you.  My Christmas traditions have had to change slightly over the years, but I’m okay with it.  Life does change and my autoimmune arthritis can make things more difficult, but not all change has to be bad.  A Spoonie Christmas can still be a Merry Christmas.  Don’t ever forget that!  

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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