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!  

An unhappy anniversary to me.

Two years ago today, I was getting ready for the season finale of Homeland.  I needed to throw one more load of laundry in the washer.  I put on my new bedroom slippers and hurriedly trotted down my basement stairs….only to fall and break both bones in my leg and dismantle my entire right ankle. Honestly, I still have flashbacks of the accident that make my stomach sick and my body shake.  It took a surgery on both sides of my ankle, multiple plates and screws, a cast, walking boot, lace-up-brace, wheelchair, crutches, cane, and 6 months of intense physical therapy to recover.

Two weeks after the surgery, I spoke with the surgeon.  I asked him how the ankle looked during the surgery..  The good side?  My ankle was completely dismantled.  How is that good, I wondered?  Well, the fact that I destroyed the entire ankle and disconnected it from the bones in my leg, allowed the doctor to go in and repair everything (including the damage to the ankle caused by synovitis-caused by RA).  I believe he said something along the lines of “I couldn’t give you a Lamborghini repair job over a broken down Chevy.”  I didn’t know what to make of that statement.  Two years later and I know exactly what he meant.

An MRI prior to the broken leg had shown how much damage synovitis had done to my right ankle.  Pockets of hardened synovial fluid under ligaments and swollen membranes treated me to years of pain and red, hot ankles.  Once that damage to my “broken down Chevy ankle” was  repaired and the bones were screwed back together I have an economy version of a Lamborghini.  I still have pain in that joint from my autoimmune arthritis.  But it is radically different now.  I don’t get the red hot feeling.  I don’t get the pain that makes me sick to my stomach.  I get an achy pain and swelling, but now that the damage from synovitis is gone, I feel like my “worst” joint is no longer my worst enemy.  I can walk for longer periods of time and stairs are a little bit easier.  I don’t have great range of motion, but I can wear heels now (can you believe it?????!!!!!) I pay for it the next day, but I do it with pride 😉

I’ll never be happy that I broke my leg.  It was really traumatic and lonely (I was snowed in alone most of that winter, and had to give up the dog for 3 months because she also broke her leg and I could not take care of her).  I was scared that my autoimmune arthritis would prevent me from healing correctly.  I feared being crippled more than I already was.  I learned that people I didn’t know offered to help me more when I used a wheelchair, crutches and a cane than when I walk with my noticeable limp (which still pops up often).  Breaking the leg taught me that I am stronger than I realized both mentally and physically.  It made me a fighter.  It taught me to throw my laundry basket down the basement steps instead of carrying it down.  I’ll never be happy that I broke my leg, but I’ll never regret it.

So unhappy anniversary to me and my economy-Lamborghini ankle.  I hope we have many more unbreakable years to come.  And I never did watch that finale of Homeland….