Blog Archives

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.

Original Painting of Glamorous Woman by Kim Legler on Etsy | Party Etiquette for the Sassy Spoonie

Glamorous Woman | Kim Legler

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!

3. Smile
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.
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Merry Christmas, Vintage Style

Merry Christmas from abodyofhope

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.  

~Peace~

“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.”
Romans 15:13

Gift Ideas for people with Dysautonomia, POTS, and CFS

POTS gift ideas

If you know someone with POTS, EDS, Gastroparesis, or Hypotension, Orthostatic Intolerance, fainting disorders, bowl disruption, Chronic Fatigue Syndrome, or a thyroid disorder, I’ve got you covered with these gift suggestions! *Starred items were created by disabled entrepreneurs. 


 

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People with Autonomic Dysfunction and stomach disorders tend to have very dry skin. Personally, I also have extra sensitive skin because I hit the genetic jackpot. A deep moisturizing product with collagen or an anti-aging night mask helps soak into that dehydrated skin and would be a great gift. Try Mary Kay’s Extra Emollient Night Cream at only $14, which has been a top seller for decades. My mother used it from the time I was a little girl and she has always had beautiful skin. My sister and I love it, so it’s one of those heirloom cosmetics. I’m passing it on to you! Or like Keihl’s Deep Moisturizing Balm ($26.50) which has been plumping up faces since the 70’s. Both are classics.


 

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Medical Alert Italian Charm Bracelet GadowJewely8 Ebay

I’ve been scouting medical alert bracelets for about a year now, and these are my top favorites. These medical ID Italian charm bracelets are available on Ebay for between $20-$30, and individual links are sold in a variety of conditions for $5-$10 each. Links can be custom-made if you want to add a new medication, and links can be removed easily to fit if you lose weight. I also love the idea that you can mix your POTS charm next to a sparkly skull charm to suit your personality and keep it fun.

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USB Woven Alert Bracelet

The new trend is USB bracelets and they’re very cool because, if you are like me (and many with the above disorders) and have complex medical issues that require more explanation than a straight-up name on a tag, this is what you need if you’re unconscious, in a hospital setting, and cannot advocate for yourself. I like this woven usb bracelet from A Delightful Gift as you can have it made in your condition’s awareness colors for $29.95. Good for the guys, too!

This adorable Medical ID Bracelet from My ID Square combines the charm of traditional ID charm bracelets with modern technology. The QR code can store your scannable data, while you can add your medical ID charms onto the bracelet. I like the instant access of the ID charms for an EMT situation, plus the addition of the data tag allows for access to your information. The shop has wide variety of bracelet styles and charms. One problem, now I can’t decide which ID bracelet I want!


 

One thing I learned when I entered the POTS world from the Chronic Pain community is that POTSies have the lockdown on technology! Since you can get a quick-read blood pressure cuff at any drug store, I’m going to try and kick it up a notch. This wristband from Withings reads heartrate, blood pressure, and blood oxygen level, along with tracking steps, distance, calories burned and has a sleep companion which all syncs with your mobile. It comes in Dysautonomia blue as well as black; price range on Amazon, $93-$250. If this works as well as the company claims, that is one heck of a Dysautonomiac invention!

I learned Biofeedback 11 years ago to help me manage pain, stress and sleep. Four years ago, when all the crazy Dysautonomia and POTS symptoms undid my body, I started whipping out my Biofeedback techniques like my life depended on it (well, it has). Learning to have better control over typically automatic responses like breathing, heart rate, blood flow, circulation, and blood pressure are very challenging, but can be so helpful in conditions affecting the heart, nervous system, or in conditions which interrupt sleep.

This amazing Biofeedback and Neurofeedback smart phone app was made by a little known group you might know called THE US DEPARTMENT OF DEFENSE! The app can monitor respiratory rate, skin responses, temperature changes, as well as brain waves. Check out more about this FREE app here at Neurogadget.com which includes links to purchase the biosensor devices for your smart phone. Good job, America!


 

I can’t say enough about compression socks. And now, they are finally cute! You can even find printed compression leggings. They help us keep the “blood pooling” or edema to a minimum by encouraging circulation. Compression stockings displace blood from the lower extremities and squeeze it into the upper body where we are desperately lacking. It also lowers vascular issues in the legs and helps prevent strokes. This is one pair of socks that earn their keep! Check more cute compression socks links here on my last gift guide for people with Chronic Pain.


 

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Gourmet Salt Sampler

If you know someone with Dysautonomia, POTS, or Hypotension, then you know we are a little obsessed with our salt intake to raise our blood pressure. For the holidays, turn your loved one into a connoisseur of specialty salts by allowing them to sample 6 different types of sea salts from around the world. Purchase through Amazon, made by The Spice Lab, for only $29.95. They arrive in a wooden stand, nestled in a kraft gift box. Or, spice up your loved one’s pallet with specialty seasoned salts. SaltWorks.com creates 5 unique salt blends like Merlot salt and black truffle salt in their Fusion Flavored Salt Sampler, $26.95. Mmmm, pardon my drool!


 

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Fellow Dysautonomia fighter and advocate, Suzanne Stewart makes fabulous custom awareness jewelry to your desire. A portion of her earnings go to help chronic illness organizations because her rapidly beating, pace-maker equipped heart is also full and generous! Take a look at her website, *Support in Jewerly, and order something pretty for the chronic diva in your life.


Dr. Lam, a leading expert on Dysautonomia, has developed Tai Chi for Rehabilitation, $24.95. I first learned about Tai Chi for Dysautonomia from POTS and chronic pain blogger, Elle and the Auto Gnome who attributes Dr. Lam’s Tai Chi in part for her improvement. The DVD’s can be adapted to a sitting position or even (as I’m learning) a flat position, thanks to my cardiac rehab therapist. [If you give a gift of “healing” to a friend with a chronic illness, it’s best to include it in addition to her main gift. Otherwise, it may send a negative message to us that we aren’t doing enough for our health in your eyes.]


Artist, Sarah Allegra has developed this magical *2016 Calendar with Red Bubble, depicting her favorite images. Sarah Allegra is not only a provoking photographer, she also suffers from Chronic Fatigue Syndrome/ME/SEID which always influences her art. She is an activist, raising awareness through her blog, Mythic Pictures, as well as through her expressive images which speak volumes. If your loved one has severe fatigue associated with her disorder, often artwork can say so much more than words.


 

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“It’s like 10,000 Knives when all you need is a Spoon” *Awareness Tee’s on Zazzle.com

Other awesome gift ideas include: a nice juicer/blender $30-$200, electric toothbrush $5-$200, Funny original Awareness tops $20-$30 on Zazzle and Cafepress, Whole Foods gift card, Amazon gift card, vitamin shop gift card, massage gift certificate, electrolyte drink drops, or ear plugs.

As you are shopping for your friend, consider that she has to lay down A LOT due to chronic daily fatigue and because of many other symptoms causing falling or potentially fainting when she tries to get up and around. Anything cozy, things she can do laying down, and compact items she can keep near her bedside are all ways to play the chronic shopping game. Thank you for playing! Most of all, your solid presence in your loved one’s life is already a win as far as they are concerned. Just so you know, you are the best! Thank you for visiting,

Happy Holidays!


 

Gift Ideas for chronic illness

Find out what my gift-giving NO NO’s are when shopping for your chronically ill/ disabled loved one here.

 

 

Gift Ideas for a Chronic Pain Warrior

Chronic Pain gift ideas

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.


 Socks

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:

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Compression Socks by Support Plus

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.


Armwear

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.


Books

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.

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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.


Comfort Items

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.

 

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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!


Therapeutic

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.

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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.



 

Awareness 

 

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Zazzle.com/MixyPixie Awareness Tees

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:

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EmilyMcDowell.com Empathy Cards

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,

Happy Holidays!

Gift Ideas for People with Chronic Illness and Disabilities

 

Gift Ideas for chronic illness

If you are shopping for a loved one with a chronic illness, long-term illness, or disability, you may feel unsure of their needs, wants and special daily circumstances. Most of these gifts are either for comfort or meant to inspire, yet are still appropriate for someone who is mostly confined to their home or uses a walking aid, if applicable. Here are several gift ideas along with advice to help you shop (from someone who has personal experience with chronic illness, and great friends and family.) *Starred shops are run by disabled sellers who work extra-hard to support themselves.


 

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Internet Subscriptions allow your chronic friend to watch movies and television any time instantly from anywhere. Especially on those bad days when doing nothing but resting is the best and only option, distraction therapy like settling in to great movies and television is a wonderful gift they will certainly thank you for. Netflix, Amazon Prime, or Hulu Plus are the most popular video streaming subscriptions and all cost about $100 per year. The Amazon Prime subscription also allows someone with a Kindle device access to a wide variety of ebooks, audio books, and music, alongside streaming video.


 

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To relax those sore muscles, give your loved one the gift of luxury bath salts. There is a variety to choose from online and in stores from very inexpensive to extremely high end. This Etsy shop, JamilhaAromatherapy mixes small batches of unique scented therapeutic bath salts like this one for $20.95. Research shows that Epsom salt baths detoxify the body, help re-hydrate muscles, help relieve sore muscles, aches, cramps, and spasms. Salt baths can also be helpful for headaches and migraine pain as long as the product isn’t overly scented. [Keep in mind that not everyone with a disability is able to soak in a bathtub.]


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This faux fur heating pad by Sunbeam sits around the neck and shoulders delivering 4 settings of pain-soothing heat. It is subtly weighted so you can move around or sleep easily without the heating pad slipping off. I personally have both the gray fox and the brown and black leopard print and adore them- especially during the colder months. There aren’t many fashion- friendly items made strictly for easing pain and this item checks both boxes. The soft fur is very comforting, and people will only comment on the beautiful soft fur, not an obvious heating pad. Even though it is made to fit securely around the neck and shoulders, I use mine wherever I need heat. Currently, on Amazon; both prints are $39.98. Find other attractive heating pads and heating blankets here on Smile.Amazon.com (Amazon Smile donates a portion of your purchase to a charity of your choosing: RSDSA for instance).


If you have a loved one who appreciates laughing in the face of his or her ailment, this note card stationary set will certainly be the best medicine this holiday! Artist, Eliza Stein depicts medication growing from plants in the style of vintage botanical illustrations. Featured here is a set of blank stationary for $16. Whether your loved one enjoys mailing notes to his/her friends or would prefer hanging these up on their wall to admire, these note cards will suit their quirky sensibility. Personally, I enjoy sending snail mail to friends and I’m always on the lookout for unique stationary. I’m just in love with this tongue and cheek medication art, aren’t you?


 

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Doctor Who Bear Crochet Pattern: *Shimeree Creations

Art Lessons: The year after I was diagnosed with chronic pain in my leg, my hands began cramping so badly I had trouble typing at work and using a pen to write or draw. For Christmas, my mother gifted me knitting lessons. It was a fun private lesson with my mom, my sister and I, and at 23, I knew how to knit! Even better, it helped my hand cramping and dexterity issues as I continued working at it over time, and the craft gave me another distraction from my pain. Over the years, I’ve learned I am far from alone in my chronic crafting, as people with long term illness tend to utilize the arts as a top-tier coping mechanism. This holiday, consider giving your loved one lessons for jewelry-making, scrap booking, quilting, music lessons, or photography classes. Encouraging them to get in touch with their inner artist could change their lives. If they are homebound, instead consider an art set for them to try at their own pace. (If you are a disabled artist or crafter, visit our Facebook art share group: Chronically Inspired.)


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Brella Bag: Innova Golf $28.87

Walking Aid Accessories: If the individual you are buying for uses a wheelchair, electric scooter, crutches, cane or walker on a regular basis, keep these things in mind as you shop. Unless you find something fantastic that you think will improve their walking aid experience greatly (like this sweet hands-free umbrella shown above), try not to focus only on buying items revolved around their walking aid. While a funny personalized license plate for their scooter would be a cute and thoughtful addition to any gift (ie. “Hotwheels”), some might feel their disability has overshadowed who they are as a person. That said, there are so many interesting accessories for the disabled shopper today. Stocking stuffers are a perfect place to add handy ergonomic gadgets to help in the kitchen, car, toolshed or at work, like these linked in this Forbes.com article. As long as you include those personal touches, they will know you still see them as they always have been.


 

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Ebay: Zminglel $25.99

Loungewear: I know what you’re thinking, “I’m so lucky to live in a time in which adult unicorn onesies exist.” Almost every animal, mythical creature or superhero is available on Ebay as adult one-piece pajamas. These are super cute and remind me of the classical literary quote, “Life is getting too complicated, time to be a unicorn.” Since I wear pajamas all the time, I usually like clothing items that are very comfortable and can also pass for casual wear. Instead of a robe, I like to wear a long comfy sweater, for instance. Whatever cozy item you find, make sure your friend can wash it easily in the washing machine. For more loungewear ideas and shops, check out my article from last year, Pajama Chic.


 

 

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DJ Cat Scratching Pad: UncommonGoods $35.00

Pet Gifts: You might think a pet gift doesn’t count, but our pets are our partners in crime and help take care of us when we don’t feel well (which is all the time). Give your loved one a gift for their pet and watch their eyes twinkle brighter than the Christmas tree! Some suggestions are: a fancy print or sports print dog collar with name, address and phone number embossed like these quiet collars at Pup Panache, this doggie backpack/carrying satchel called The Kurgo Max Pack would be an excellent gift for any helper-dog on the go, or commission a portrait of your friend and his furry bestie by contacting professional portrait artist *Alfredo Dods Macapas.


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Monthly Subscriptions and Gift Certificates: Most people with chronic illness have regular “down periods” in which we can struggle to do simple tasks, and even our closest friends won’t know about it. Giving the gift of resources shows you care how much your friend’s life has been affected. Consider a subscription to a house cleaning agency, lawn care service, gift cards to a restaurant that delivers, baby sitting agency, dog walking service, or a gift certificate to a hair salon to use on a day your loved one needs extra help caring for her hair. Some salons will even send a hair dresser out to a person’s home if it is nearby. Pharmacies, grocery stores, and online stores like Amazon are common shopping spots for people with special health needs (or anyone actually). If you’d like to know more about the free things you can do throughout the year, this wonderful article gives insight into how friends can make a big difference during a health challenge.


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Awareness Items come in everything from funny coffee mugs to inspiring apparel. Awareness gifts can share hope, sport a ribbon, or include information about your loved one’s condition. Every girl loves receiving jewelry, and if she can feel empowered at the same time, big win! Find unique awareness earrings and necklaces from blogger FindingoutFibro’s new shop, *The Hopeful Spoon for $10 and under (as featured above) with listings of colors and conditions for your shopping convenience. Use special coupon code 10SPOONIE for 10% off any purchase throughout December! To help your friend with her own personal awareness, check out this beautiful journal download that helps anyone with a health challenge keep track of doctor visits, financials, prescriptions, symptoms, etc. from *Marie Pugh Designs. To shop more stores and items by disabled entrepreneurs, read this article by my friend at Lifeinslowmotionblog.com.


 

While shopping for your loved one, steer clear of:

-I would stay away from giving an herbal supplement or vitamin on a gift-giving occasion (unless it’s a stocking stuffer and you aren’t spending much money on it). Likely, your friend already has a daily medication and supplements program approved by his/her doctor.

-Books aimed at healing or promising wellness are a no-no, especially if you are not also chronically ill or disabled yourself.

-When buying shoes or slippers as gifts, be aware that many people with chronic health conditions have “picky” feet. If you do find shoes you believe they will love, do them a favor, pay cash and keep the receipt in case they indeed need to return them.

-Personalize. Just like mom doesn’t always want the spatula and the vacuum she needs as Christmas gifts,  we also look forward to receiving both useful and fun items- like everyone.


 

Be assured, if you are shopping to make your loved one’s life easier, more comfortable, or more enjoyable, they will recognize your compassion above all. We should all be so lucky as to have a friend as considerate and caring as you. Happy Holidays!

For funny, whacky, and inspiring gift ideas, visit my Pinterest boards, Spoonie Gifts and PJ Chic.

***

Check out my other 2 gift guides for Chronic Pain as well as for Dysautonomia, POTS and CFS. I got a little “wrapped up” with Spoonie gift ideas this year! What are your favorite “chronic” gifts that you’ve either received or given?

Holiday Pity Party

The only Christmas party I’m going to this holiday is a pity party.

My husband and family go out of their way to make sure I’m as comfortable as possible. My husband packs my bags and does the arduous task of transporting me to my parent’s house just up the road. My mother and father prepare me a clean, quiet, dark room where I stay the rest of my time here. My mom even set up a small Christmas tree for me this year.

The trip always takes so much out of me that my ongoing migraine and facial nerve pain, leg and body pain, heart and POTS issues flare for a few days from the short transport.

Like Thanksgiving, I lay in this back room and listen to the family festivities muffled by my earplugs. It’s such a bittersweet feeling. As I can hear laughter and singing from the dinner table, I can picture their smiles- everyone together… Yet, the waves of sadness and loss hit me like jolts to my gut. This past Thanksgiving, I put on my soundproofing headset and got on facebook to distract myself. I am so happy to celebrate with my friends online and excited to see all of their pictures of family and Christmas crafting. When I’m feeling low, even these are stark reminders of all of the things that are no longer a part of my life.

“Always winter and never Christmas.” -C.S. Lewis

I absolutely have had worse health in years past, so why don’t I feel excited this year? Maybe it is because last year I had such high hopes that I would be so much better by now. Maybe it’s because I worked so hard all year to improve my wellness and my body met me with countless setbacks throughout the year. Maybe it’s because I feel stuck when I look ahead into the coming year.

I’m so grateful my family has their health. I’m grateful I have so much support, so much love, people who want to help me. It’s very old needing help all day every day from my loved ones, of course. I’ve just been feeling down and being stuck in this bed for years while the world goes on- hurts. Everything seems to hurt right now. The chronic pain and chronic illness I don’t feel guilty about, of course; but, when my glass is so full of things and people I’m so thankful for, and so many others are suffering without hope, I do feel embarrassed feeling heartbroken over Christmas this year.

This holiday, more than other Christmases, I’m spending time in prayer, reading Scripture, and trying to remember that Christmas really isn’t about all of the traditions I can’t participate in. Christmas is meant to be about worship. I have a special gift to be able to spend more time focused on the Lord these past years away from all of the distractions. If you are like me and the holidays have taken you to a dark place this year, I am praying right now that all reading this will feel the comfort of the Lord filling the broken places of your heart this season and all year. -aBodyofHope

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” James 1:17 

Holiday Heroes, a love letter

Holiday Heroes, a love letter: article about the courage it takes to survive celebrations when you are disabled or chronically ill. #spoonieThose 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

Party Etiquette for Sassy Spoonies

Original Painting of Glamorous Woman by Kim Legler on Etsy | Party Etiquette for the Sassy Spoonie

Glamorous Woman | KimLegler

Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few. Here are some ideas and tips to help you make it through as we enter into the holiday season.

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!

3. Smile
When in doubt, smile. Always keep them guessing. That’s why they call them “guests”! Or, em…anyway… 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 good 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.

*************

Original Painting of Glamorous Woman by Kim Legler on Etsy | Party Etiquette for the Sassy SpoonieOriginal Painting of Glamorous Woman by Kim Legler on Etsy

Go purchase a fabulous original piece from this talented artist! Thank you so much for contributing Kim Legler!

Message from the artist and from her recovering brother: To keep video game playing to a minimum as it can be harmful to your health and to spend time in nature to promote healing. Twitter: @kimilegler

Emily Post’s Original Party Etiquette Guide

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