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By Guest Blogger Sandra Kanowitz
Yes, they are coming-the holidays. I always greet this time of year with a mixture of delight and dread. I love the fall season, with the cooler temperatures and glorious color. I have put my garden to bed and now have more time available. My nesting instincts have kicked in along with a more robust appetite, unfortunate for my waistline and half of the clothes in my closet. I am already fretting about who will do Thanksgiving, and will it fall on my shoulders. I love the holidays, but find myself increasingly unable to meet the many demands they present. Giving up old traditions, like setting the perfect table, having the house decorated and spotless, and greeting everyone with a smile and serenity is so hard for me. So I must make a game plan to survive the merriment and chaos that will soon ensue. Please borrow some of these ideas to bring more joy and less angst to your holiday season:
- Start now planning your activities. Make a categorized task list, such as house preparation/decoration, meal prep, gift giving, social events, and family activities. List a task a day in logical order on your calendar so the work is spread out and more manageable.
- Consider and discuss with others ways you can simplify, scale back, change-up, and rethink how you do the holidays. Less can be just as beautiful, more elegant, less cluttered, and relief from the sensory overload an “over the top” holiday can present.
- Set the mood with lighting (fireplace, candles), music, seasonal scents and colors, and fewer decorations for which you must search, unbox, set up, dust, and later put away.
- Use technology to your advantage. Order groceries online (check out King Soopers’ Clicklist service) or have them delivered (Amazon Prime, Whole Foods, Door-to-Door)*. Shop online for gifts and party supplies. Have packages picked up by ordering online at USPS.com, UPS.com)*. Put your to-do list and set reminders on your smart phone. Put household lights on timers. Send holiday e-cards, many of which are free online.
- Take turns with someone shopping and sharing large quantity items from warehouse stores.
- Try new conveniences like partially prepared meals from local businesses or delivered meal kits (Hello Fresh, Blue Apron, Sun Basket)*. Order in from restaurants that deliver. Eat all those goodies you have stashed away in your freezer instead of cooking.
- Give to the less fortunate and donate items, volunteer at a food bank, hospital or soup kitchen. This will keep your mind off your own aches and pains, and alter your perspective of “unlucky”.
- Nurture yourself by eating well, resting when needed, getting a massage, treating yourself in whatever way helps relieve stress.
- Just say “no” if demands get out of control. You can politely decline requests by saying “Oh, I wish I could, but my health puts limitations on my energy and activities.”
First and foremost, focus on the true meaning of the holiday and less on the commercial aspects. Lastly, savor the beauty, love, traditions, music, camaraderie and joy of the season, and revel in the time you spend with family and friends.
Stress tends to trigger the aches and pains in my body that my rheumatologist believes are due to fibromyalgia (rather than Sjogren’s Syndrome, as my labs of late have been normal). And as I wrote about just last week, my beloved dog died at the end of September. It’s the most traumatic thing I’ve gone through in a long time. But I’ve been doing my best to check in with my body: Do I need to rest? Eat something? Drink water? Sleep? Cry (again and again and again)?
The funny thing is, my body has been feeling good. Even my stomach, that always seems to hurt for some reason or another, has been okay. I actually joked with my therapist last week that apparently daily grief-driven crying jags do my body good.
But I noticed something this week. Like so many, I’ve spent the week seeing #MeToo in my social media newsfeeds. And last night, I finally sat down and watched a good friend tell her (devastating) #MeToo story about being raped by a friend. In middle school.
Like so many, I have my own #MeToo story. Stories, more accurately. Watching my friend tell her story, and knowing how so many of my closest friends have had horrible experiences ranging from rape to molestation to physical and emotional abuse to aggressive sexual assault…then thinking of my own daughter and what might be in her future…
Well, within minutes, my body seized up. To the point that the physical pain brought me to tears. Given I just had my labs done the week before, I can only conclude one thing: fibro flare.
From the Mayo Clinic:
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.”
Women are more likely than men to have fibromyalgia. There’s no cure. And it’s a chronic condition.
I developed physically earlier than many of my peers. My body may have looked like a woman’s, but I was still a child. So I hid it. I wore baggy clothes. I stopped standing up straight. I hated the attention I received because of my body.
It’s fair to say that I started hating my body around the 5th grade. Many of my friends did, too.
Now, I’ve said it before and I’ll say it again: I’m an evidence based medicine woman. And there is evidence that points to a correlation between chronic pain disorders and trauma. But how sad is it that the sexualization of young woman has become such a part of our collective story, that I never once considered my experiences as trauma. In my mind, it was all part of the experience of being a woman.
Now I’m a woman with an autoimmune disorder, IBS, and fibromyalgia. I’ve struggled with anxiety, depression, and eating disorders. Much of the work I have done in therapy has centered on my body never being good enough.
I can’t discount the instantaneous pain I felt last night watching my friend tell her #MeToo story. I can’t discount the fact my overly sensitive body has been able to handle the significant grief of losing my best buddy–yet instantly reacted to the reminder of what nearly every woman in our society has gone through.
From here on out, you can bet your bottom dollar that I’m going to pay better attention to when my pain flares. And I’m curious if anyone else has experienced something similar.
Farley was next to me when I was a young newly-wed. He was with me throughout my pregnancy, and then with my newborn. He was with me when I got sick with what I now know is Sjogren’s Syndrome. He was with me every single day, when I woke up in the morning, tripped over the dog while making coffee, fed the dog, let the dog out, told the dog to stop barking, scolded him for waking up my now seven-year-old, snuggled with the dog while daughter ate breakfast, scolded daughter for leaving breakfast on the coffee table, scolded dog for eating said breakfast, walked the daughter out the door to school, then walked myself and the dog.
Whether I was feeling good and up in my office working, or feeling sick and laying on the couch, he was with me. And now he was gone.
I had never felt so alone.
There was only one thing that truly helped me during this time. And I’m still kinda shocked that it helped as much as it did.
I posted about it on my personal Facebook page. I admitted how much pain was flowing through me. I shared things I didn’t know were swirling in my head.
My admission of pain was met with nothing but kindness. Nearly all who reached out had experienced the loss of a treasured pet. From messages of commiseration to messages of hope, from funny memories to spiritual comfort, the people who I’ve let into my life over the years gave me something I felt void of: Hope.
I share this story with you now for one reason: If you’re struggling with a medical diagnosis like lupus, don’t keep it all in. Your life has been forever changed. And in addition to the physical discomfort you’re experiencing, there’s a whole ‘nother mental component of chronic illness that, until you’re in the throes of it, you wouldn’t consider.
Like the death of my faithful companion, being diagnosed with an incurable chronic illness forever changes your routines. Life as you knew it ceases to exist. And you face a new reality that’s scary, painful, and debilitating.
I remember feeling so misunderstood when I first got sick. Then I found a community with Lupus Colorado. I also found a community of “spoonies” on social media. The connections were invaluable. But I’d forgotten just how much this community of understanding helped me through this tough time.
The pain of losing my best bud reminded me of just how many of us are in pain. And just how much our pain connects us, and how with connection, pain lessens.
I didn’t allow myself to grieve when I got sick. I made a significant effort to put on a show, shouting, Alls Well to anyone listening. I didn’t want people to see my weaknesses.
But that was six years ago. And since then, I’ve consistently learned that there’s strength in admitting your pain. You give others a chance to be of service, to help you get through a tough time. And most of all, you show others that it’s okay to share their pain, too.
To have a disease like lupus means living with pain. Don’t go it alone.