Party Etiquette for a Sassy Spoonie/ Missed Manners
Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few this holiday season. Here are some ideas and tips to help you make it through the festivities as we approach the new year.
1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”
See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!
2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”
See, you can play this game of witt too. What a wonderful party!
When in doubt, smile.
Always keep them guessing. When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a great time no matter how sick you are. You can always go to the ER later, tonight is for celebrating!
So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!
Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.
Merry Christmas, happy holidays!
This is one of my favorite pieces I published in 2014. A snarky spin on the old Emily Post / “Miss Manners” columns from the 1950’s.
Merry Christmas, Vintage Style
Tidings! Me and baby Santa (a.k.a. my little sister) wish you a warm, and full Christmas, and a 2016 that is brimming with answered prayers, opportunities to give to others, and so much energy that you won’t know what hit you!
Thank you all so much for reading, for leaving comments, for hitting like, for sharing, and for being supportive of this “physical therapy experiment.” Getting to know you has been a wonderful gift in 2015.
Chronic Illness Christmas
No matter what last year or years past have looked like… What traditions I may have cherished… Whether or not I still have the people in my life who have been precious to me in years past… And even if I can’t leave my bed again this year for the holidays… I won’t compare this holiday to others. I won’t allow all of the endings and losses to get into my head today. It’s the time to celebrate Christ’s birthday. Mary and Joseph didn’t need everything just so to have a celebration for His birth that night. The people who were supposed to be there for them had tossed them out the door when they most needed help. But new people showed up for them.
Actually, I am wrong. I keep saying, “I won’t” and “I’ve decided” but this has been a prayer for a while, for comfort to get through these holidays. So it isn’t my doing at all. I know that. And I can’t take the credit. It’s an answer to many cries to God. A Christmas miracle, if you will.
I pray now, for those alone and in pain, that you are comforted in your spirit this Christmas.
“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.”
Gift Ideas for a Chronic Pain Warrior
This gift guide is full of links to unique items to help you shop for your young, eclectic friend who just so happens to have Chronic Pain. *Starred shops are run by entrepreneurs with chronic pain.
When I asked my friends with chronic pain what they’d really love for the holidays, they said SOCKS PLEASE! The catch? Most of us have finicky feet and like our socks to be just right. Here are some of the fancy sock suggestions straight from chronic pain fighters:
Smartwool.com has attractive and high quality over-knee socks and knee socks for women.
World’s Softest Socks by Hanes has a nice selection of extra soft and comfy socks and slippers that come highly recommended by the owner of very sensitive feet. See Footsmart for in-store shopping.
Heat Holders come in thermal socks for both men and women, tights, and thermal leggings. If your loved one always has cold feet, these might be their new favorite sock!
Compression Socks are my personal fave for my own picky (angry, control-freak) feet. I love a toe-less compression garment like this thigh high version from Truform on Amazon. Today, you can also find fun printed compression socks, like the mild compression socks from SupportPlus as pictured above. Compression socks help with circulation, swelling, and sensitivity, however keep in mind, not everyone can tolerate wearing tight socks.
For those who have chronic pain in the upper extremities, supportive arm and hand gear can be difficult to find. Period. Throw in the need for protective cold weather wear and add the desire for attractive pieces that fit your loved ones personality…you get the idea. Unlike easy-to-hide protective legwear and therapeutic socks, the arms and hands are not as easy to disguise. Here are a few gift ideas and shops to help you find a protective garment that your loved one would be proud to sport.
These super soft Cashmere Fingerless Gloves/Arm Warmers by Blumen Kinder Seattle on Etsy are fitted, to the elbow (or over), and are available in multiple colors. These were another item my friends said they are hoping they receive for Christmas. I can’t think of anything softer or more luxurious than cashmere…. (Sorry, that was just me luxuriating.)
What about the boys? I scoured the internet looking for men’s long cashmere fingerless gloves/arm warmers and found them at Turtle Doves in the UK as well as the Etsy shop Lain Design in 100% soft gray cashmere! You’re welcome guys.
For those who prefer the protection and swelling control of compression wear for their arms, check out the shop Lymph Divas on Amazon. They make original tattoo-design compression sleeves for women that everyone will envy.
This full length compression sleeve from Juzo is advertised as “extremely soft against the skin.” Made from silicon, it conforms to the skin and moves with it, adding a thin layer of protection and light compression. It comes in various tones including chocolate brown and light beige.
In my last gift guide, I advised shoppers to steer clear of books that tell people with any illness how they can become well again or heal. On the flip side, there are excellent books to read for LIVING with chronic pain, managing the symptoms, and coping with emotions and relationships in the new changing body.
Author/Poet Mary Jane Gonzales is a long-time chronic pain fighter and advocate for chronic pain awareness. She has published several soulful books related to living with pain; my personal favorite (thus far) is *Poetic Devotions for those in Pain, which touches at the heart of life with painful degenerative illness, loss, relationships, and connecting to personal faith in the midst of struggle. After reading, I shared this ebook with several friends, not all of whom had chronic pain and they also loved it and related to it. Available on PDF ebook and Nook.
In 2013, Cynthia Toussaint of ForGrace.org and Women in Pain foundation wrote her inspiring memoir, *Battle for Grace. For more than a decade, Toussaint has been an activist for the rights of people with chronic pain after her own life as a professional ballet dancer was changed forever. Read about her long time relationship with her partner, the loss of her body, and how she found new purpose and passion through her bewildering conditions, including CRPS. Available in paperback and ebook.
The Measure of our Days and The Anatomy of Hope are not books about Chronic Pain, however I wanted to include them here as gift ideas. They made an impact on me in the first years after my diagnosis and I have never forgotten them. Multiple, real life, patient-centered stories depicting how people find hope in the face of rare and terminal conditions might speak to you or your loved one as they spoke to me over 11 years ago.
Or, give your loved one a gift card so they can download the ebooks on their wish list. Visit this page for a comprehensive list of books from the American Chronic Pain Association.
Distraction Therapy Gifts
What most people call “hobbies,” people with chronic pain call “distraction techniques.” These are captivating projects which don’t take too much physical endurance but help us busy our minds and hands as a method to fight against pain overtaking us. Creative art projects, crafting, playing video games, playing musical instruments, doing puzzles, board games, cooking, digital editing, and coloring or painting in adult coloring books are some of the ways in which we might distract ourselves from pain.
Recently, scrapbooking and journaling merged to create a new trend in beautiful artistic journals. People can document their lives by incorporating writing, painting, drawing, photos, and collage. If you know someone who might be interested in a project like this, pick up a Smash Book at a Kohl’s or Wal Mart.
Since we have to spend a great deal of time at home resting and recovering, comfort is key! Think about the coziest, softest thing you’d like to snuggle up with, and that’s a great place to start shopping. I prefer vibrant colors in my room and faux fur anywhere my hands wander.
Check out this Blanket Foot Tent at Sears for $22. If the touch of the linens keep your loved one awake at night like many of us with Allodynia (pain to touch), this awesome tool might help your loved one get some added zzz’s.
On the flip side, a weighted blanket might solve their “comforter anxiety” as my friends and I like to call it. These blankets will stay put and are known to reduce anxiety and increase Serotonin by adding gentle weighted pressure. They are also made with very soft fibers which are attractive to anyone with chronic pain. Find a wide selection of colors at the brand new shop, *Comfort Hugs on Etsy.
There are so many wedges for the bed. Some go underneath our legs, to prop our legs up, special pillows to rest between our knees. We have wedges for our backs, and piles of pillows we shift all around to try to get comfortable. It’s difficult to suggest one kind of wedge or pillow that might add to your loved one’s comfort. However… a giant teddy bear might be a great and unexpected fill-in, and a really comforting and sweet gift, too!
In my last gift list, I noted the wonderful benefits of epsom salt baths for aches, pains, and spams. However, bath soaks are not possible for everyone with chronic pain conditions, unfortunately. This unscented Epsom Salt lotion from Morton Salt allows for your loved one to get the benefits of Epsom without the need to get in and out of a hot tub of water. It is available at Wal Mart and Walgreens for about $8.
Guided Meditations for Chronic Pain on audio is a nice add-on item or stocking stuffer for anyone with pain. Stay clear of the ones that claim to “cure.” Instead, look for guided meditations, mindfulness, or visualizations aimed to help “manage” or “cope” with chronic pain. Mindful Meditations for Pain Relief has excellent reviews online by pain patients. Though I have never tried this particular audio book myself, I do utilize mindfulness and meditation as a coping strategy for my own pain.
If you spend a little time digging, you can find some of the coolest adapted walking aids! The flames cane featured above is from the shop, Fashionable Canes which was made popular after replicating Doctor House’s canes. Similarly, the shop Cast Coverz has a wide selection of fun and eclectic crutch covers and walker covers to reflect your loved one’s personal style.
These items might seem silly, but personal hygiene is one of the most frustrating and tiring parts of the day with chronic pain. Here are a few personal care items meant to help reduce the strain and pain of getting ready. If your loved one has trouble with her hands or arms, this EZ Comb is not only easy to put in, it’s simply a great hair accessory! It does the same work as clips, ponytail holders, and fancy hair combs, but one adjustable hair piece does all the work. If holding a hair dryer and comb is a daunting task, this wild-looking contraption might help her get ready with less pain. If this Soft Hood Bonnet seems too extreme, there are also hair dryer holders available to install. What about a spinning, heated, blowing hairbrush by John Freda? It seems like a must for anyone who has pain or weakness in one arm/hand.
If it comes with a ribbon, shares information about your loved one’s condition, or encourages your loved one, then it falls under the category of “awareness.” They are everywhere these days, and many shops will even customize an item with your particular ribbon color (if you ask nicely).
The Etsy shop, *Tea Bag Embroidery creates sweet little awareness satchels for carrying medication and cell phone. With messages like “Fibro Hope” and “RSD Sucks,” these are truly functional items which spread awareness wherever you go.
There is an array of t-shirts and sweat shirts with awareness ribbons and funny sayings to choose from. Big online stores like Zazzle and Cafepress have a huge selection of awareness apparel, mugs, cell phone covers, etc. with original designs by various sellers. My own shop on *Zazzle.com is pictured above and donates a portion of its proceeds to RSDS.org.
I also wanted to share this new collection of “empathy” cards from *Emily McDowell. If you have never known just the perfect thing to say to your friend struggling with a serious illness, but you want them to know you always have their back, these cards are funny, sweet, beautiful, and say it all. Like this one:
No matter what you decide to give to your loved one with chronic pain, your support and un-moving presence in their lives is immeasurable to them. Your friendship is a gift!
To see funny chronic illness gifts and fantastic adaptive tools to help your loved one around the house, visit my Pinterest boards: Spoonie Gifts and PJ Chic. Read my last gift guide here for gift do’s and don’ts when shopping for your Chronic pals. Thank you for visiting,
Holiday Heroes, a love letter
Those with chronic illness, chronic pain, and disabilities are all heroes to me. I know yesterday was hard. The holidays are always a challenge no matter where on the spectrum of disabled you are, celebrations push us to our limits.
We mentally feel pushed to be up and feel grateful or in the spirit of the season. When pain and illness bombards our thoughts constantly, at times it can feel like a mountain to climb to find a hint of the same holiday spirit we once felt. Physically, we are pushed to do the things we really want to do like spend the time with the people we most want to see, bake, shop, go to sporting events, etc. Some in the “Spoonie” community cannot leave home any longer or their illness is such that they are now confined to a bed, yet they still find ways to express gratitude and the spirit of the season (heroes).
Many push to try to do things we’ve always done despite our declining health like cook, or play a sport or game with everyone else. Even though I’m confined to a bed in a back room while the family is having dinner and festivities, this year I pushed myself to change into something cute. Honestly, changing clothes took away from my energy and added to my pain; I know I could have used those spoons to spend more time with a loved one later on. When I was still able to cook, I overdid it in the kitchen and my pain would spike. The truth is, some of our actions aren’t for other people, some things we do are just for us- and it’s healthy! I have spent the last few holidays either in days old pajamas or in the hospital, so changing clothes helped remind ME of who I used to be. And I’m so grateful I had some extra spoons to do something so frivolous this year and still have some quiet moments with a few loved ones as well.
I know spending time around your family takes so much courage for fear of getting bumped and pain skyrocketing, eating a bite of something that triggers your body to become inflamed, or an unexpected noise setting off a migraine or cluster headache- these are some of the sacrifices you make for LOVE. You are brave and you are warriors. If you always listened to the will of your body, you may never open your eyes each day. Your body tells you NO!!! But your heart calls. Your heart is always stronger. And I admire each and every one of you. You teach me courage. During the holiday season, we make many sacrifices: trading spoons for love of others and longing for who we still are inside. Balancing emotional needs and physical needs. Always juggling.
That is why those with chronic illness and the disabled are my heroes.
“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” ― Mary Anne Radmacher
Articles to Reinvigorate your Spirit:
“Quiet Strength” by Choosing Hope
“The Deepness” by A Beautiful Life with Cancer
“Through it All” Poem by Mum C.
“Is Jesus Enough to get you through the Lonely Moments?” by Rest Ministries
“Square Plates are an Abomination on the Face of a Dying Earth” by Snotting Black