A #ChronicHolidays Gift Guide for Chronically Ill Spoonies

This great Twitter thread offers #ChronicHolidays gift suggestions for chronically ill folks. If you’re looking for a gift for a spoonie in your life, check it out.

That thread inspired me to make some recommendations of my own. I’ll link to Wirecutter reviews for many of these items. They show their research and list alternatives. Disclosure: Some of the links below are Wirecutter Amazon affiliate links. Wirecutter is a New York Times company.

Buckwheat Pillows

I like Japanese-style buckwheat pillows. I have several Beans 72 organic buckwheat pillows sold through Amazon. I use the king size as a weighted blanket to manage sensory overwhelm. It’s also a huggable body pillow. I use the Japanese size under my head. They are moldable and conformable and useful as bolsters.

Coccyx Pillows

I take a coccyx pillow everywhere I go, especially when navigating the awful chairs of the medical model. These make waiting in a doctor’s office more bearable. I’m sitting on the ComfiLife Orthopedic Coccyx and Posture Support Wheelchair and Office Seat Cushion as I write this guide.

Heating Pads and Blankets

I have too much kyphosis (curvature) in my spine. The result is constantly aching back muscles stretched like cables supporting a poorly designed suspension bridge. I pretty much live on a heating pad to ease the deep, abiding ache. Check out the Wirecutter recommendations for heating pads and electric blankets. I use their top recommendation, the PureRelief XL – King Size Heating Pad.

Portable Chairs

Moon/saucer chairs certainly aren’t for everyone, but I take a big CORE padded moon chair with me to outdoor events. I use it at home too for lounging outside. I like the room it provides, and it supports my curved back more comfortably than upright chairs. A note on these particular chairs: the top hinge is plastic. Make sure you don’t fold it in the wrong direction when collapsing the chair. Cracks can result. The CORE chair is popular in #VanLife and RV communities, which is where I heard about it.

A light, cheap, packable option for brief sits is the Coleman Event Stool.

Task Chairs

If you love your spoonie to the tune of 1000 – 2000 bucks, I can recommend the Steelcase Leap, the Steelcase Think, and Soma Ergonomics chairs. We’ve had all three around the house for several years, and they are well-built survivors. The Leap is around fifteen years old and still holding up comfortably. My custom Soma Ergonomics has a thoracic spine ridge that supports my kyphosis and encourages open posture.

Wirecutter recommends the Steelcase Gesture. I’ve never tried it, but I’m sure it’s good.

Articulation

Articulate all the things. I spend a lot of time in the supine, and articulated tablet, laptop, and e-reader stands are a must. We have three LEVO Deluxe iPad Floor Stands that have survived years of continuous abuse. They are tough and stable. The kids use the arms as stim toys for fidgeting feet and even ride them around the house like scooters. These stands have held up through all of our indelicate attentions.

I clamp an Ergotron LX Tall Pole LCD Arm to my bed frame. It is fitted with an extension arm and a laptop tray. This provides the articulation I need to find a comfortable repose whether watching TV or sitting up against my buckwheat pillows and typing. The tall pole provides mattress clearance, but if you have a super-thick mattress you might have to get creative with clamping.

Consult Wirecutter’s monitor arm review for options.

My big iPhone 7+ is easy on my presbyopic eyes but hard on my hands. I used a Joby GorillaPod and a Lamicall desktop cradle to perch it where I need it when I’m not around my floor stands.

Folding Walking Canes

My Switch Sticks folding walking cane has been a reliable companion. Adjustable and durable, this fits and hasn’t let me down. They come in many colors and patterns.

Rollators

My Drive Medical rollator has also been reliable. It assists me on longer bouts of walking and avoids the often fruitless search for seating. I sometimes wish I had a side-folding rollator for navigating narrow doorways, but those are more expensive and the seat hinges down the middle, which bothers some.

Standing Mats

I couldn’t cook or wash dishes without standing mats in the kitchen. These extend my functional time and reduce painful bouts of sciatica, paresthesia, and fasciculations. I use the Imprint mat suggested here.

Earplugs

I can’t sleep or endure noisy spaces without earplugs. Earplugs are part of the sensory kit I take everywhere. I use Wirecutter’s top recommendation, Mack’s Slim Fit Soft Foam Earplugs.

Noise-cancelling Headphones

Noise-cancelling headphones are also part of my go-everywhere sensory kit. I use the pricey Sennheiser Momentum 2.0 Wireless headphones that I received as a gift from work (thanks, Automattic). For more affordable options, check out Wirecutter’s recommendations. I don’t leave home without noise-cancelling headphones and my favorite sensory management playlist.

Sleep Masks

My go-everywhere sensory kit includes a sleep mask. I like ones with raised eyecups, such as the Wirecutter recommended Nidra Deep Rest.

Sunglasses

Also in my portable sensory kit are sunglasses. I currently use polarized prescription sunglasses from Warby Parker. Wirecutter has recommendations for cheap non-prescription shades.

Utility Knives and Scissors

A good utility knife and a good pair of scissors assist package opening chores and household cutting. In our dyspraxic, repetitive-strain-wracked household, we cut instead of pull, rip, and tear. The Wirecutter recommendations for utility knife and kitchen scissors have served us well.

Water Bottles

Always be hydrating. We have several 27-ounce Klean Kanteens in the house. I always have one with me. Make sure you get the version 3.0 Sport Cap. These have a satisfying flow and chug. They’re dialed in just right for my preferences. Once again, check out Wirecutter’s review and survey of the field.

Travel Mugs

The Wirecutter recommended Zojirushi 16 ounce stainless steel travel mug is one of my favorite things. The opening action on the button and flip cap is reliable, stimmy goodness. The cap closes with a satisfying click. The flow is just right. The heat retention is superb. Bed-time tea is often still hot enough in the morning to enjoy.

Cozy Slippers

Cozy slippers make life better. The toes knows. (Dammit, Kevin Spacey, you’ve ruined this reference.)

Tile Trackers

Medications and chronic pain can increase distractibility and impact cognition. I attach Tile trackers to keys, canes, headphones, purses, and bags. Searching for necessary coping tools while grimacing with pain is frustrating and dispiriting. Tile trackers provide a comforting cognitive net. Double pressing the button on the tiles rings your phone. With tiles on my headphones and canes, I’m always able to summon my phone from its hiding places in the depths of couches and bedding.

They have to be replaced each year, which gets expensive. Tile is starting a subscription plan to make yearly replacement more affordable, but they still ain’t cheap.

Music, Gaming, and The Golden Age of Television

TV is a balm when in pain, out of spoons, and confined to bed. Get a video streaming subscription for your favorite #ChronicLoaf. Note that Hulu is criminally negligent in providing audio descriptions, so pick another service for Blind and visually impaired folks.

Button-laden controllers for gaming consoles can be accessibility devices for those who have problems with keyboards and touchscreens. Regardless, gaming is a great way to transport yourself from bed into fantastical interactive storytelling and collaboration. Grab one of the latest console iterations, a new peripheral (maybe a customized controller), or some new games.

Music subscriptions are also appreciated. Music helps manage sensory overwhelm and is an unguent for souls and the human condition. I’m using Spotify these days (RIP Rdio). I’m not overly fond of Spotify’s UI, but its music discovery is the best.

Here, enjoy a minimalist chill. The repetitive structures of minimalist compositions are my go-to for sensory management.

The Future is Accessible and Accessibility Matters Apparel

Support disabled people and spread the message of accessibility with Accessibility Matters and The Future is Accessible apparel. They are not always available (the campaigns run for limited time windows), but grab something for the spoonie in your life when they are. If the campaigns currently aren’t open, hit the “I Would Buy This!” button to signal interest in the next campaign.

Sex Toys

Masturbation reminds you that your body is about more than pain. Get some toys. The Magic Wand is a good general purpose massager and sensory stimulator. Again, I’ll rely on Wirecutter recommendations since they show their work and offer alternatives.

Medical Marijuana

A #ChronicHolidays guide doesn’t feel complete without some chronic. Medical marijuana is a life saver for many. It’s an ally to disability and neurodivergence. It eases chronic pain, aids sleep, reduces sensory overwhelm, and heads off overwhelm- and PTSD-induced meltdown. I prefer vaporizing hash oil concentrates, especially at bedtime, but combusting a joint while amidst nature appeals to a Promethean and free wildling part of my nature. Here are suggestions for grinders, rolling supplies, dry herb vaporizers, and concentrate vaporizers.

Dry Herb Grinder

I currently use a large Space Case Grinder Sifter. Larger diameter grinders are easier on my hands and wrists. The threads on this case are fine and need to be kept clean. 99% isopropyl helps with that and all medical marijuana-related cleaning needs. I’d prefer something with coarser, less-cloggable threads, but as long as I keep the threads clean I can get by. The Wirecutter has grinder recommendations, but I haven’t tried any of them.

Dry Herb Vaporizers

Of the dry herb vaporizers I’ve used, the Pax 2 was the best. It has some quirks though. The retractable mouthpiece is stimmy goodness, but it will most definitely get stuck if you don’t regularly clean it with isopropyl and lubricate it with propylene glycol. By all accounts I’ve read, the Pax 3 fixes all of the issues I had with the Pax 2. It also handles concentrates. I haven’t tried it myself, but it’s worth a look.

The Wirecutter has dry herb vaporizer recommendations. I haven’t tried any of them, but WC hasn’t steered me wrong yet.

Rolling Papers and Tips

I use RAW organic hemp rolling papers and tips. I always roll with rolling tips (also called crutches or roaches). They make hand rolling easier and provide a more comfortable burn as you get to the end of your number. You won’t have incendiary hippie grenades hitting the back of your throat if you z-fold your rolling tip. If you don’t have any rolling supplies, kits that include a rolling tray, rolling machine, rolling paper, rolling tips, and a doob tube are convenient.

About Botanicals

Cannabis is a botanical. That’s means the possibility of allergies, especially when combusting dried flower. If you’re sensitive to botanicals, concentrates like butane hash oil (BHO) might better suit you. BHO uses butane as a solvent. Most of it is purged off, but if you’re sensitive to butane try a solvent-less concentrate like rosin.

Concentrate Vaporizers

I prefer inhaling my meds. Vapor is the most bio-available delivery method. Inhaled vapor gives instant relief and dosing feedback since it goes straight to the brain.

For concentrate vapes, I’ve had good luck with Linx products. I’m currently using the Linx Ares Honey Straw. Its straw design means there are more surfaces in the air path, which means more cleaning. I clean it with an alcohol wipe every time I recharge and haven’t had any problems with it so far. When kept clean, straw and nectar collector designs provide the best flavor and cleanest hits. If you enjoy terpenes and revel in the taste of living green, try a straw design. With straws, you can dab straight from wax paper and silicone or glass containers. They’re not as discrete or handy for vaping on-the-go as pens though. The setup I like is a pen for continuous micro-dosing during the day and a straw or e-rig for heavier dosing at night.

I’ve used and enjoyed the Dr. Dabber Aurora. The magnetic sections are wrist-friendly, but I found that the mouthpiece would come loose in my pocket. I fixed that with a piece of gaffer tape. Dr. Dabber has responsive customer service and stood by their product when I broke the ceramic pin on my Boost e-Rig.

Something to keep in mind with concentrate vaporizers is that you will have to regularly replace the atomizers (or heating tips for straw style devices). They get gunked up with resin over time and must be replaced. Factor the price of atomizers/tips and 99% isopropyl alcohol into the total ownership cost.

Here’s a review of the Linx Ares by my favorite WeedTuber.

And here’s a survey of popular wax pens.

With all of these devices, you must keep them clean, clean, clean. Always have 99% isopropyl handy. Amazon offers bottles by the case.

CBD

There are a lot of hemp-derived CBD (cannabidiol) products on the market right now. They are currently legal in all 50 states in the US. There are a lot of rip-offs out there, so watch out.

CBD is a cozy blanket of calm. I don’t find the hemp-derived CBD concentrates to be as effective as marijuana-derived concentrates, but they still help. In my experience, CBD works better in concert with THC. 1:1 CBD:THC products suit me nicely. If you don’t have access to medical marijuana-derived CBD, the hemp stuff will certainly suffice. CBD can reduce dependence on opioids. If you experience opioid constipation or are stuck in an oppressive pain contract, CBD could be a life changer.

If your pain contract kicks you off opioids if you test positive for cannabis, be aware that hemp-derived CBD can trigger a positive test result despite the absence of THC. These pain contracts are mindless and cruel, forcing hard decisions that shouldn’t have to be made.

CBD concentrates come in many forms. Crystals are flexible and multi-use. You can sprinkle them on food, swirl them in drinks, cook with them, and even dab them with dab rigs, vapes, and straws.

Dabber’s wax is the most convenient for dabbing.

Vape cartridge’s screw onto any vape pen with 510 threads. Cartridges are great for micro-dosing throughout the day.

I’m still auditioning hemp-derived CBD makers. If you have suggestions, send them my way (@rboren on Twitter, DMs are open) and I’ll update this guide.

Medical Marijuana Accessibility

It’s rare that I see reviews address the accessibility of devices. Every vaporizer I’ve used requires 5 quick button clicks to turn them on and off. This interaction is not disability friendly. Grinders often have fine threads that are difficult to line up and clog quickly. Companies need to be more attentive to disability. I long for someone to take disability and accessibility seriously in their design, marketing, packaging, and customer support. Cannabis is medicine, after all.

Time

And, finally, time. Help clean house, call insurance companies and medical providers, or prepare meals. Pass around a joint and share a laugh. Your time is invaluable to someone counting spoons.

We’re Sick

We’re sick of rapists and liars and traitors and kleptocrats and warmongers and white supremacists. We’re sick of whataboutism, deflection, false equivalence, projection, and defensive fetishes. We’re sick of bigots and abusers with their fear-based socialization and patriarchal authoritarianism. We’re sick of President Trump, who is all these things. We’re sick of the party of the Southern Strategy, which promotes, endorses, and defends all these things.

The Republican Party is a malevolent sickness attacking the civic fabric. The antibodies of pluralism and unstoppable demographic change will consume it.


Props for the inspiration and words:

Letter to My Representatives on Harassers and Abusers

The Democratic Party is finally cleaning house of harassers and abusers. There are surely more, but this is a start. The time for the GOP to do the same is now. Withdraw support of Roy Moore. Not only did he abuse minors, he impugned the integrity of those he abused by saying he didn’t know any of them. The receipts have been shown, and his lies are apparent.

Request the resignation of Rep. Farenthold. Using public money to hush harassment and then blackballing the person he harassed crosses ethical bright lines.

These are not hard calls to make. Neither of these men have ethical or moral credibility. Their world views are perverse and their sins manifest. Patriarchal authoritarianism of the sort they endorse and live goes hand in hand with the devaluation and abuse of women and children.