Here is where I collect links, resources, and my own writings on surviving chronic illness. When I first came down with long Mono + fibromyalgia + ME/CFS about a decade ago, I really struggled to find what worked for me. I've collected it here in the hopes that it makes it easier for others to find what works for them.
This list is not a series of tasks for you, it's a friend with ideas. Take what's useful and leave the rest. Come back another time, in a different season of life, and find something new. I've included things that have been helpful for me or other chronically ill folks I know personally but that does mean there will be some gaps. As I find other chronic illness comp lists, I'll try to add them in so that you can get more ideas from people with different conditions.
This page is in flux. Hoping to add more links and annotate more of it as I go. Thanks for your patience.
Spoons + Forks
Chrinstine Misanderino - The Spoon Theory
The Spoon Theory is an often quoted metaphor for understanding how chronic illness - especially those with fatigue -
Jessica Kellgren-Fozard - What is a Spoonie?
A video overview of the Spoon Theory and a walk through of an example day between an able bodied person and someone with chronic illness.
A later compliment to the Spoon Theory. From the phrase, "stick a fork in me I'm done" - it describes the experience of stress thresholds.
The Mighty - Understanding the Fork Theory
A personal exploration of what the Fork Theory looks like and how it can be useful language for describing what's going on to others.
Rest + Pace
Rest + Pace has been the main approach that's helped improve my condition over the years. Here's a quick read on the Pace part of that strategy. Essentially, stop the crash and burn cycle by doing way less.
Indefinitely Ill - Post COVID Fatigue
Resting is what is needed the rest of the time. This beautiful blog post unpacks the hang ups people with chronic illness often have around resting that get in the way of it; outlines the "how to rest" mindset.
Jessica Kellgren-Fozard - Pacing Tips
Solid video that talks about some of the unexpected things that can take spoons and some ways she's accomodated herself. Very helpful real life examples.
Washington Post - Long COVID + Pacing
Possible paywall. More examples of the ways different people have paced to allow them to continue on with life in a meaningful way.
WHO - Post COVID Support - Managing Breathlessness
Specifically recommending this resource for it's section on managing breathlessness which can be common across many different conditions. Use my COVID resources list for better info on exercise post COVID.
Breathwork exercise - I find this one most helpful when I need to wind down and relax, especially before going to sleep. It also it just something to do when you don't have the energy to do much else but meditation feels like too much.
Breathwork exercise - I find this one most helpful when I need to center and focus. Its good when I'm starting to get frustrated at myself, situation, or stuff online.
Yongey Mingyur Rinpoche - Meditation & Monkey Mind
One of the best and simplest explainations of breath meditation that I've ever come across. Breathing meditation is generally the easier meditation to start with.
Yongey Mingyur Rinpoche - Open Awareness Meditation
This video teaches the basics of meditation without object or open awareness meditation. I've found I use it most often when I'm fatigued and having brain fog issues.
Thich Nhat Hanh - Compassion Meditation
Compassion meditation - also known as metta meditation - is helpful when dealing with a lot of aversion. It can be toward the environment, toward others, or toward oneself - it's helpful regardless.
Thich Nhat Hanh - You Are Here Book
Excellent book on being present with breathing meditation. Written as if it one long meditation, it's a training in how to think about watching the breath and it's connection to the present moment. This type of meditation has belped me take the edge off of pain and rest when I'm approaching a crash.
I don't use mine as much anymore but it was very helpful when I was first developing a routine of getting more fluids. I like that it lights up to remind you to drink and tracks sips all on it's own. Expensive but could be worth it to some people.
General Tips
Chronically Jenni - My Top Adaptive Kitchen Hacks
Sarah McGlory - Tips When Eating is Hard
Jordan Page - Lunch and Snack System
Mom Life - Little Kids Pack Their Own Lunch
Marz Corbeau - My Food Systems
Fridge Meals
Dollar Tree Dinners - No Cook Meal Prep
Dollar Tree Dinners - No Cook No Reheat Fast Meal Options
Microwave Meals
Dollar Tree Dinners - No Fridge! Np Stove! No Kitchen! No Problem!
Dollar Tree Dinners - Microwave Only Dollar Tree Meals
Dollar Tree Dinners - Cooking in a hotel room
Dollar Tree Dinners - Microwave Thanksgiving Dinner
Arm Workouts
Core Workouts
Leg Workouts
Stretching
Yoga
Walking Workout
Bodyweight Exercise
Hillbilly Oracle - My Care Kit
Hair
Amy Lee Fisher - 3 Easy Hair Styles for Hospital/Sick Days
Angela Hepp - Top 3 Chronic Illness Hair Hacks
Naturally Curly - Natural Hair + Chronic Illness Tips
Love, Nilsa - Hair Wraps for Hair Loss
Cancer Research UK - Hats and Scarves for Hair Loss
Makeup
Amy Lee Fisher - How I Do My Make Up With a Feeding Tube
Everyday Facial Paralysis - Makeup Hacks for Facial Paralysis
Everyday Facial Paralysis - Makeup for Facial Symmetry
Rachelle Chapman - How I Do My Make Up as a Quadrapalegic
Nails
leiaghannsays - How to Apply Nail Wraps
Kelli Marissa - How to Clean Up Messy Manicures
Nail Polish Bottle Tiltable Holder
Aids for Getting Dressed
Clothes
Fernanda Vazquez - 54321 Capsule Wardrobe
Marz Corbeau - My No Fold Hamper System
Adaptive Clothing Brands
Joe and Bella
Accomodations + Hacks
Use a mop to clean the tub or shower
KC Davis
Care Tasks are Morally Neutral Talk
How to Keep House While Drowning Book
KC Davis Website - Resource List
Dana K. White
Video Example of the No Mess Decluttering Process
Video Ecample of the No Mess Decluttering Process with Clothes
Video of the Container Concept/Making it Fit
No Mess Declutteirng Coaching Session
The Awkward Mom tries Dana K White's Cleaning Routine
Sarah McGlory
Video Explaining the Adaptive Cleaning System
Cass From Clutterbug
Figuring Out Your Clutterbug Type
Cass From Clutterbug Organizes Jess from Hot to ADHD's House
My Stuff
Marz Corbeau - My No Fold Hamper System
Hillbilly Oracle - Basics of Roomkeeping
The Original Bullet Journal Tutorial
Forget what you've seen of "bullet journals". This is the original tutorial. The method was created by a neurodivergent man and has helped countless folks with chronic conditions track symptoms and process feelings. Major pro is when you don't have the energy or time to use it, you don't waste pages and there's plenty of space to include other things you might want like trackers and resource printouts + notes.
Gemma Esse - How to Use a Bujo to Find Your Triggers
Walk through of one person's symptom tracking with fairly thorough discussion of how they arrived at it. Love some of the clever shorthand they use to track.
Everbook
While I loved the bullet journal for many years, I needed more reference material and more flexibility so I moved to a hybrid Everbook/Bujo system. Here's an overview from the originator of that system with more examples on his channel.
Hillbilly Oracle - Intro to the Everbook System
From my tumblr. Wrote about my particular set up and answered some of the common questions I get about it.
Digital Journaling
I found microjournalling genuinely life changing. As of writing up this list I'm using Standard Notes for it. I just whip out my phone and have a little journal whenever I need - great for taking emotional forks out.
Daylio is probably the main app I'd recommend for symptom tracking/journaling. You can set reminders and it does a lot of nice visualization that helps you see patterns. It take a bit to set up but once you've got it set up the way you like, it's very easy to fill out each day.
Other
Sue Jackson - Chronic Illness Tracking
Great overview of one woman's analog/paper system for tracking symptoms. Very much compatible with an Everbook system.
I love Struthless's journaling videos. They are hands down some of the most actional instruction on how to actually journal I've ever come across. Many of these can be done either digital or analog.
Birdwatching
Badgerland Birding - Bird Feeding 101
Badgerland Birding - Masting Binoculars for Beginners
Badgerland My Top 10 Tips After 10 Years of Birding
Wild Birds Unlimited - Window Feeders
CornellLab - Merlin Bird ID App
Solitaire Card Games
Crochet
simplydaisy - How to Crochet for Absolute Beginners
BellaCoco - How to Crochet For Beginners 1
BellaCoco - How to Crochet For Beginners 2
BellaCoco - How to Crochet For Beginners 3
BellaCoco - How to Crochet Granny Squares
MindfulKnots - How to Crochet a Beanie
Solo TTRPGs
Ginny Di - D&D Solo Actual Play - Sandbox Style
Ginny Di - D&D Solo Actual Play - Adventure Check
Ginny Di - What it's like to Play Solo D&D
Paper Dice Games - How to Play Your First Solo RPG
GeekGamers - Easy Ways to Be Your Own DM
GeekGamers - Solo RPG Tutorial
JustForFun - Solo RPGS to Start With
noroadhome - Alone Among the Stars
imsobadatnicknames - Pocket Delver
Ham Radio
Hillbilly Oracle - Getting Started with Ham Radio
Hillbilly Oracle - Why You Might Want a Radio
Ham Radio Crash Course - Technician Prep Videos
HamStudy.org - Free Study Materials
The World Needs More Love Letters
Zooniverse - Citizen Science Projects
SKYWARN - Weather Spotter Certification
Marz Corbeau - COVID Resources - Distancing
My Favorite Dharma Talks on Illness
General
Chronically Jenni - Mobility Aid Tour
Chronically Jenni - Mobility Aid FAQ
Chronically Jenni - How to Afford Mobility Aids
Jessica Kellgren-Fozard - It's Time to Sit Down
Jessica Kellgren-Fozard - Why I need a Mobility Aids
Jessica Kellgren-Fozard - Does An Aid Mean Giving Up?
Bob and Brad - How to Use A Walking Cane Properly
Fatigued but Fabulous - Walking Stick Buying Tips
Disabled Basil - Tips for Customising Your Wheelchair or Mobility Aid
Mobility Aids for POTS
Telescopic Portable Stool Option
White Canes for Vision Impairment
Unsightly Opinions - Getting Started with a White Cane
Unsightly Opinions - How to Use a White Cane
Unsightly Opinions - White Cane Comparison
Wheelchairs
Gem Hubbard - Wheelchair Hacks
Gem Hubbard - Common Mistakes When Buying a Wheelchair
Gem Hubbard - Choosing a Manual Wheelchair
Elinor Brown - Decorating my Wheelchair
When Tania Talks - What's in my hospital grab bag?
Reddit - Premar16 - Prepping for hospitalization
The Urban Prepper - What's in My Hospital Go Bag?
Great compilation of Long COVID resource but I recommend it here for it's emphasis on disability justice and resource that help shape ones understanding of illness and of oneself as ill. Many lovely essays and blog posts to read through from authors will all kinds of disabilities and subjects.
Mothqueer Free Press - The Bedside Companion
My free minizine I wrote about how to navigate being stuck in bed by focusing on meeting your own needs. Has a good check in on the back. Easy to keep by your bed/behind a phone case.
Crip Camp - Full Length Documentary
This documentary follows the lives of disabled campers from Camp Jened who went on to be at the center of the disability rights movement. Their summers there showed them what a world free of discrimination could be like and as adults they helped create that world for others.
Cleaning + Home Management
Record + Reflection
Bullet Journaling
Bed Hobbies
Bed Volunteering
Bed Socializing
Spirituality
Mobility Aids
Medical Care + Hospitalization
Recommended Reading
Chronic Illness in Media