The 12 Gifts of Blissmas: This Holiday Season’s Gift Guide for the EDS Warrior

Let’s be blunt: chronic illness and pain sucks. Many of us don’t only live with Ehlers-Danlos Syndrome (EDS), but also have a variety of comorbid conditions such as postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), affectionately known as the EDS trifecta. Living with all of these takes ‘chronic illness and pain’ to a whole new level. In all probability, you or your EDS warrior you care about experiences unimaginable pain, fatigue and/or disability on a daily basis. Somehow, these rare and lucky few can even switch from being partially or wholly incapacitated (i.e., unable to drive, clean, take a shower or get out of bed), to being up and functional within a few hours, days or weeks and then back again; it’s our superpower.  

You might be asking “How do they do that?” There are a few trade secrets to our own self-care. Therefore, several of us contributed to this list of what gifts we would really appreciate this holiday season, and this is our suggested wish list.

SOFFFFFT & COZY SENSATIONS

Everyone loves soft, comfy things. But to the zebra, it is absolutely imperative. Many EDSers not only deal with pain and discomfort every day of their lives, but also have to cope with sensory issues (just a fun add-on for some of us). In this way, “soft and comfy” isn’t a luxury; it’s an absolute staple within our repertoire. Therefore, whether your bendy loved one has sensory issues, or not, the gift of something buttery soft and cozy will be an utter HIT.  

Some of the items that fellow EDSers have recommended include items such as:

• Soft Faux Fur Throw Blanket or a Heated Throw Blanket    
• Sherpa Wearable Blanket  
• Cozy cute Aloe Socks
• Warm Microwavable Slippers

MUST-HAVE HEATING & COLD PACKS

Warm or cool- whichever heals you best.. Many people swear by cold packs for their ability to cool inflammation. Others favor  heat pads as the most quintessential weapon against pain in an EDS warrior’s stockpile. Heat brings blood flow to the painful area, which stimulates healing. Cold can calm it down. Additionally, it is a pain deterrent by creating a distraction from the pain sensation itself. Either way you ease your pain,  it can take the edge off and is used almost universally by many EDSers. So, here are a few of our favorites:

• Shoulder and Neck Heating Pad/Wrap
• Jade Far Infrared Wearable Heating Pad
• Cordless Wearable Heating Pad
• TMJ & Migraine Hot-Cold Pad
• Microwavable Hand Mitts
• Cold Packs (insert pic)

STABILITY & SUPPORT (we ALL may need a little of that, eh?)

We’re talking about the physical kind, here, folks. So, for the EDSer who regularly dislocates, subluxates or whose joints just plain hurt like a #$@*!, the perfect gift may help further their efforts not to hurt like #$@*!, anymore. In these cases, we’ve gathered few items that should help to alleviate some of that pain for your trooper:  

• Tush Cush
• Inflatable Neck or Back Pillow & Cushion
• Wrist Support
• Wobble Cushion
• Body Pillow

MASSAGER & FASCIA RELEASE KITS

Massages are, by far, one of the most delicious, relaxing luxuries in life… for nearly everybody. For the zebra, it most likely equals large, heaping spoonfuls of PAIN, followed by a bit of relief. However, many EDSers just can’t swing that massage bill  as often as we’d like.  Luckily, we have a few go-to massage items on our Blissmas List for this:

• Massage Gun
• Back Massager
• Neck Massager Cordless
• Fascia Blaster
• Foam Neck Roller

TRIGGER POINTS & HOW TO KICK THEM TO THE CURB

Trigger points. Ugh. Just mentioning the name “trigger points” can elicit pain all over your bendy’s body. Trigger points are evil little masses of tight muscle fibers that can form after overuse or injury; for us, they appear after simple “strain”. A trigger point in a muscle can cause pain throughout the area. When this pain persists and worsens, doctors call it “myofascial pain syndrome”. Great. Another “syndrome”.  So, when massagers just don’t quite get deep enough, there are a few inexpensive items that can help your fighter to attack that trigger point until it feels better:

• Back Buddy Massage Tool
• Wooden Muscle Release Tool
• Bio-Swiss Hand-held Massage Tools
• Trigger Point Reference Guide
• Tennis Balls

SOMETHIN JUST. FREAKIN. FUNNY

Research shows that humor/laughter “is the best medicine”, right? I’d argue that medicine is the best medicine, but yes, laughter is very much welcome, too!  So, for the mighty EDSer that loves a great laugh (ok, this is our crutch!), there are some interesting gifts that can remind us not to take ourselves too seriously:

• Personalized Rx Mugs     
• Funny T-shirts
• Funny Sweatshirts
• Bumper/Wheelchair/ Notebook Stickers

HYDRATION & ELECTROLYTES (because who doesn’t love drinking salt water?)

Many EDSers have the trifecta of EDS, POTS and MCAS. So, for those struggling with dehydration, headaches, dizziness upon standing, fainting or near-fainting and other symptoms of POTS, hydration and electrolytes are absolutely imperative.  Show off your beautiful POTS-savviness by sharing the gift of daily – or rescue – hydration with these products from Amazon: 

• Banana Bag Oral Electrolytes + B Vitamins
• Electro Drops Rescue Electrolytes
• Insulated Water flask – 24 hours of cold/heat; to encourage hydration

WRITING & ART THERAPY

Experts agree that journaling & art therapy are excellent ways to cope with chronic pain, and even to create new thoughts and patterns. There is evidence that writing generates new ways of thinking about emotions, cognitive processing, and health. 

For the zebra that just needs a friggin outlet to release some of the numerous frustrations that occur while dealing with pain, fatigue, copious amounts of doctors, therapists, conflicting opinions and people who give unsolicited advice, or worse (accuse them of faking it, being lazy, malingering, etc.), some EDS warriors recommend therapeutic outlets that can help ease that tension, and thus, relieve physical and mental pain. 

• Journaling – A journal can help to cope with the stress and trauma due to a chronic illness. Putting down thoughts and negative feelings on paper can help your EDSer to see patterns and potentially change responses to those negative stressors. 
• Chronic Illness Tracker Journal
• Coloring – A study in the February 2018 issue of The Arts in Psychotherapy looked at almost 200 people hospitalized for a medical issue or surgery. The researchers found that participating in art therapy for an average of 50 minutes significantly improved their moods, and lowered levels of pain and anxiety.

PAIN RELIEF, SWEET PAIN RELIEF

What is the #1 agreed-upon symptom of EDS?  PAIN.  Pain is not only common in this cohort; it is often severe. Most likely your EDSer has to use an arsenal of prescription and over-the-counter pain medications, therapy, topical products, braces, personal modalities and other things to fight off the grueling and unrelenting pain from all over their body. EDSers often have to fight muscle pain, joint pain, myofascial pain, neuropathic pain and soft tissue strain all at the same time, on the same day, every day.  For this reason, EDS is considered one of the most painful and debilitating conditions in existence.  Giving the gift of a little pain relief can often go a long way.

• Ultra-Strength BenGay Patches, XL, Back to Hip
• Essential Oil Muscle Relief
• Voltaren Joint Pain Relief
• Migraine Iced Head Wrap, Gel Headache Hat

SLEEP, BEAUTIFUL SLEEP

We all wish we could get better sleep.  However, to the EDSer, it is absolutely imperative. Our bodies heal, rejuvenate and reduce inflammation during our sleep cycles. Additionally, with 75 – 90% of EDSers reporting fatigue as a major symptom of EDS, we often need much more sleep than the average person. Ever witness someone get 10 hours of sleep and still wake up sleepy?  It’s our daily plight; we never wake up feeling “refreshed”.  

Also, we are famous for getting hurt and injured ‘in our sleep’. Say whaaaah?  Things like pinching a nerve in our neck or shoulder, wrenching our lower back, painful bursitis in both of our hips and paralyzing an entire limb just by laying on a remote control wrongly, can all cause us to wake more injured than when we went to sleep the night before. Crazy, I know, but truth is stranger than fiction! So, to help us get to sleep, relax or sleep in the proper position, a few EDSers weighed in on the things that help them from NOT going bump in the night:

• Relax Already – to help relax and fall asleep
• 5 mg Melatonin Melts – to help fall and stay asleep
• Leg wedge – to take pressure off of the lower back
• U-shaped pregnancy pillow

STOCKING STUFFERS FOR EVERYDAY LIFE

Do we need help? YES, we often need help with some of the most mundane, silly and everyday tasks. It is often hard to ask for help too. If you have not discovered this already, we are all very unique, majestic unicorns! Our needs are highly individualistic, so depending upon your particular unicorn’s needs, we have a few products that have helped other EDSers survive the day:

• Jar Openers
• 14.2″ Clip on Wide Angle Panoramic Blind Spot Mirror
• Water Flask Carrier
• Blow dryer/Hairbrush combo or dry spray shampoo
• High Definition PRISM Lie Down Glasses for Reading and Watching TV in Bed
• Ergonomic Pens and Utensils
• Eye Mask
• Shea Butter 
• A Weekly Pill Organizer
• Noise-Canceling Earbuds   

THE GIFT OF SHOWING YOU CARE

Last, but not least, if you don’t know enough about your EDSer’s personal struggles, gift certificates and gift cards are always welcome to this exotic creature. Some amazing and much-appreciated ideas for any zebra can include:

• Gift Certificates – Massage (ex., Massage Envy), Acupuncture treatments, Reiki or “Floating”, foot massages or pedicures
• Gift Cards – Amazon or Etsy, their fav grocery store, meal prep and/or food delivery services (like Gobble or Factor), cleaning services and/or driving services (think Uber, if they can’t drive themselves)

Broke? You’re in luck! However wonderful the gifts above can be at holiday time, truly, the best things in life are free. Your love and support are what your lovely warrior genuinely wants – and needs. 

What they REALLY want from you is your ears to listen and hear them, while not trying to “fix” the problem. They want acceptance for you to love them just the way they are, even if they feel broken. They need the gift of understanding to help them better cope with the challenges of chronic illness, so offer to research or invest in an app (like the Calm app) or a book that discusses their diagnosis or its symptoms. Mostly, they want your support, permission to go lie down when they need to, or help to ensure things stay on track while they rest. But above all else, give them love. Unconditional love can mean touching them or hugging them, gently massaging aching limbs or telling them how much you care. 

If you need help expressing those caring ways, try creating a “caring coupon.” Here are a few ways to  create a free gift for the holidays, you can make a homemade card or coupon for the following things (and others – use your imagination as you seek ways to validate their ever-changing needs):

• a kind message of compassion and understanding, 
• a ride to/from doctors’ appts and therapies, 
• cleaning up, cooking or watching the kids
• a child can give an uplifting drawing or card, a chore for a month (like dishes, feeding animals, etc.)

Love, Peace and Kindness.

The above items may be found in the following places: 

Amazon: https://www.amazon.com/hz/wishlist/ls/3K53SD4CUCE5E?ref_=wl_share  

The Chronic Illness Tracker and funny t-shirts can be found at https://www.etsy.com/

Sherpa wearable blanket:  https://www.llbean.com/

The journals are from:  https://www.paperblanks.com/en/catalog/journals/

[Disclaimer:  Chronic Pain Partners does not receive commissions, kickbacks or royalties or have affiliations for the below recommendations. These items are listed for altruistic and informational purposes only. As such, we make no representations or warranties about these products.]

By Susan Jackson

December 2022

About the author: Susan Jackson is a writer, editor and Ehlers-Danlos Syndrome (EDS) advocate who lives with her husband and nine-year-old daughter in south Florida.  She’s been diagnosed with hypermobile EDS (hEDS), POTS, MCAS, Chiari I Malformation, AAI, CCI & multiple related issues. Susan enjoys spending quality time with her family, helping fellow EDSers find the care they need, exploring new healing modalities and working with crystals and reiki to heal her chronic pain.