Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here is a masterlist of activities pitched at a level severe ME patients can manage.
This part of the list is different in that it focuses on things you can do on your device. Ideally, of course, you wouldn’t use your device when you’re resting at all. But distractions are important, and you may as well have more options than scrolling endlessly through social media. The important thing to bear in mind is to choose activities within your capacity, pace, and be CAREFUL.
Thanks again to the ME/CFS communities on Facebook and Telegram for contributing to this list. It wouldn’t be half as big and rich without you.
WITH A DEVICE ACTIVITIES:
Two great Android apps to recommend right off the bat: Precise Volume and Twilight. Depending on your phone, Precise Volume can artificially lower your lowest volume. You can also set the equalizer to make everything 15db quieter. Twilight lets you permanently lower the brightness and install a red filter on your screen. iOS users have Night Shift for the red filter, but I couldn’t find any equivalent to Precise Volume. Don’t forget a good ad blocker!
1. Engage in low energy creativity. Use a colouring app, a cross stitch app, a sketch app, anything that you can do fairly mindlessly but which gives you a sense of satisfaction.
2. Check in with your ME chat community or support group, if you have one. Get an ME pen pal! A list of ME support communities can be found on /r/cfs, and a list of MEAction Facebook groups is available here, including a POC group here.
4. Take a virtual museum tour! Some virtual tours you could try:
Smithsonian Museum of Natural History
NASA Hubble Telescope
The Metropolitan Museum of Art
The National Museum of Computing
Google Arts and Culture has a wide variety of virtual tours, online collections and 360 degree videos.
6. Play mindless games. Only you know what is mindless for you. Games like Tsuki Adventure (Android, iOS), Neko Atsume (Android, iOS), or clicker games like Abyssrium (Android, iOS) work the best for me. You might prefer games like crosswords, Picross, jigsaw puzzles, Scrabble, or Sudoku, or one of the many match 3 games out there.
8. Sign petitions for ME or other causes. It only takes a second and it lets your voice be heard!
9. If you find speaking easier than typing, consider recording for Librivox or for ME patients who need audio versions of articles.
10. Teach yourself skills. Learn a language on Duolingo, or take a free online course somewhere like edX. Be careful — this is a particularly easy one to overdo. Pitch it several steps simpler than you would have done when healthy.
11. Participate in micro-volunteering. You can try Freerice and practice your vocabulary, or help out a blind/visually impaired person with the Be My Eyes app. Crowd4U lets you assist with a number of ongoing charity projects, while Zooniverse asks for help with research projects in the arts and sciences. TomNod is a great option for those with the cognitive capacity to scan satellite images.
12. Explore the galaxy with 100,000 Stars or Google Sky, or by zooming out really far on Google Earth. Combine your love of astronomy with microvolunteering and help identify galaxies on GalaxyZoo or craters on the moon on CosmoQuest.
13. Try writing about your daily life. I use the Daylio app for my diary, which allows me to track mood and symptoms at the same time. But the thing I love to write when I’m too sick to write anything else is haiku. Contrary to popular belief, haiku isn’t about the 5–7–5 structure, it’s about capturing a spontaneous moment in nature. Explore kigo (season words) and incorporate them into your work, or just try and capture moments as and when you see them. Haiku are a great low-energy way to record your daily experience. Just a few little lines and you’re done!
14. Create a soothings box on your phone. Mine is in a folder on my Dropbox so I can access it anywhere. It includes images that make me laugh, poetry that makes me smile, heartwarming messages from friends and family, anything I can go to when I’m in a bad place and feel soothed. It’s a great little project to grow over time!
15. If it’s within your capacity, you can listen to podcasts, audiobooks, music or the radio. A lower-energy option is ASMR or white noise/nature sounds. Great sources of nature sounds are: Purrli.com, Birdsong.fm, Simply Noise (Android, iOS) and Relax Melodies (Android, iOS).
17. Watch videos on YouTube. Be very careful to pace yourself with this one.
20. Feeling lonely but don’t have anyone to chat to? Talk to a chatbot! Two well-known chatbots that aim to help you with your mental health are Replika (Android, iOS) and Wysa (Android, iOS). Another well known bot is Evie.
21. Check out one of the following fascinating timewasting websites, or go hunting for your own:
22. Don’t forget to take a break from your phone and get some real rest! Helpful tools include Take A Five, the Offtime (Android, iOS) app for blocking access to certain apps, and a Pomodoro Timer like Clockwork Tomato (Android).
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