Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tuesday, April 10, 2012

List of Low Energy Activities for People with ME/CFS

As some of my recent posts reflect, I've been thinking about how to replace the activities I formerly enjoyed with new, lower-energy activities.  The idea is to, hopefully, not lose a beat in terms enjoying life in spite of ME.  As part of this journey, I asked other PWMEs from different message boards to name a few of their low-energy activities.  This post is a compilation of the various suggestions I received from other PWME's, intermixed with a few of my own.

I've included suggestions for both genders and various levels of activity.  Obviously, not all activities will be possible for all PWMEs.

*Listening to audio books (or reading if possible)
*Photography (mentioned often by PWMEs!)
*Learning a musical instrument
*Online role playing games (especially untimed, turn-based, strategy games)
*Watching movies/TV (especially with a specific goal, like watching all Best Picture winners, etc.)
*Blogging or keeping a journal
*Editing home movies
*Editing photos with Photoshop or other editing software
*Writing letters/emails to troops overseas, or a sick child
*Writing letters/emails/articles for ME/CFS activism
*Baking or cooking
*Light yoga or other stretching routines
*Tai Chi
*Knitting, sewing, crocheting
*Researching new interests online, or look up answers to nagging questions
*Jewelry making
*Participate in a book club (especially online)
*Low energy gardening (such as window box gardening)
*Explore music that is new to you (maybe, become an expert on a new genre)
*Create and design websites
*Crossword puzzles, sudoku
*Write short stories or a book
*Build a model from a kit (such as a model airplane, car, etc.)
*Learn a new language.
*Sciences: Amateur astronomy, birdwatching, plant/flower identification, etc.
*Genealogy - research your family's history
*Learn how to compose music using online software. Write a song
*Explore your hometown or the world's landmarks with Google Earth
*Participate in online fantasy sports
*Create a second, virtual you through online programs like Second Life or The Sims
*Take virtual tours of the worlds greatest art museums with Google Art Project
*Subscribe to and listen to Podcasts on subjects that pique your interest
*View online lectures on topics of interest on sites such as Ted Talks.
*Play games with others through Facebook
*Light travel, such as cruises

I appreciate all the suggestions I received, and I welcome more. I will update the list occasionally. I wanted to limit the list to activities that could be called "hobbies", so I left out things like daydreaming, taking a bath, cuddling and others that we tend to do anyway.  But if you suggested something that was left out, you'll see that I've probably included your other suggestions.  So thank you.

Personally, I've decided to resume my drawing hobby after many years.  While I paint occasionally, the process of mixing the paints and cleaning the brushes makes it a hassle to pursue consistently, regardless of one's level of health.  So last weekend I purchased a set of drawing supplies and really enjoyed my first foray back into drawing.  I wouldn't dare actually show anyone my drawings yet--as resoundingly mediocre as they are--but the point is I enjoy the process.  It is meditative and trains my eye to view the world in new ways.  


  1. Hi, Patrick!
    I got your latest post on my Google Alerts for ME/CFS which I also have. Sorry about your car, but how cool that you got to go out to the beach! I rarely get out, so loved this list of Low Energy Activities! Thanks for sharing.
    I also just started sketching again & am gonna take an online fun art workshop. I think you're right that doing things online helps! Best wishes for more good days!
    Brightest Blessings!

    1. Hi CC. Thanks for stopping by, and might I say, your profile picture cracks me up.

      I have family in New Mexico (Santa Fe) so we go out there once year. Great art communities there.

      You know, I've been thinking of taking some formal classes, but shied away from it due to the ME/CFS. But I hadn't considered art classes are offered online too. I'm glad you mentioned that...I think I'll look into it.

      See you around,


  2. Many PWME's find that having something creative, whether it be knitting or drawing or writing, is absolutely essential to staying relatively sane. Me, I make jewelry, often from mammoth ivory or stone. I've learned how to carve, sand & polish them over the course of the last 10 years. It's been slow going, but that's okay. What's important is that at the end of the day I can look at whatever I worked on that day, even if it was only for 15 minutes, and see a tangible result - I can hold it in my hand & know that despite being mostly bedbound, I accomplished something.

    It sometimes takes me weeks to finish working a piece to perfection, but when I'm finished, I can see I took a raw material and turned into beauty. That is one thing that keeps me going. I am still useful, still contributing something to the world.

    It can also be very relaxing to spend time sitting outside, just sanding a stone - it requires so much concentration that the pain, the stress, fades into the background.

    I would suggest adding travel, especially cruises, to your list. I can't do those anymore, but before I became too ill to, we did cruises to Alaska, Hawaii, and several to the Caribbean. I'm so very glad we did! I didn't think i'd like cruises, but they are really the easiest way to see a lot with the least energy expenditure. You only have to unpack once; food is terrific & varied to accommodate food sensitivities, excursions are organized by someone else and usually short, and unless you're on an excursion, your bed is always there waiting for you.

    Cruises are also great in that your family can *always* find something interesting to do if you need to rest, since there are activities onboard 24/7. I always got a balconey room, and spent many hours sitting out, watching the ocean, and the incredible scenery of the Inside Passage of Alaska and the islands pass by while family did other things. But I never felt I missed out on anything.

    Great list - I love how your blog is uniquely your own, and offers a perspective & gift that other ME blogs do not. Keep up the good work (and take a cruise with that wife & baby of yours!).


  3. Oooo! Oooo! (Wildly waving hand in air!)
    This list is such a great idea, and I thought of 2 additions.

    Birdwatching: grab a field guide to your area & see how many different species you can see. Be adventurous, and listen to bird calls online and list how many you can identify by their voice. Both can be accomplished anywhere, just sitting still.

    Wildflower Identification: wildflowers grow in every available speck of dirt, so if you're not blessed to live in a forest, as I am, you can still do this. There's an amazingly simple identification guide available that I used in college (training to be a naturalist) and it makes it easy - even for amateurs!
    That book is:
    Newcomb's Wildflower Guide (north eastern & central US):

    There's also this one:
    Newcomb's Wildflower Guide

    My daughter & I have been perusing the area around our house, and so far have spotted the beginnings of the Trilliums, Bloodroot, Mayapples, Violets, and many more. Since I've lost most of what I learned 20 years ago, we do it with our trusty Newcomb's Guide in hand. We don't have to go far, either, to run into many different species.

  4. Ash, these are great suggestions. I added them to the list.

    I'm a little late in responding here, but better late than never. I always appreciate your perspective on things.


  5. Adaptive surfing. There are organizations who enable disabled people to surf. I have surfed with people who are blind, quadriplegics, autistic children, people with spina bifida. Anyone can surf with the right adaptive equipment and friendly volunteers. The only reason you might want to skip it is, if you are having a day with severe neurological over-stimuli, then the motion of the waves can be a bit too much.

    One of my favorite organizations to do this with is Life Rolls On.

    Here is a vid:

    And here is a link to their 2012 schedule:

    Another good group is AmpSurf:

    I have surfed with both groups, they do not discriminate by disability :)

    Taking classes does not have to be restricted to online classes for those with moderate ME/CFS.
    I have a light weight foldable lounge chair which I keep in my car all the time (you never know when you
    might want to hang out somewhere a bit longer) and take with me to attend classes. I can think better when
    I am not upright and of course I last longer energy wise. Others in the classes were always very helpful and
    shared notes with me, if I could not keep up. Then I could review them at home when I was rested.

    I have also been doing some volunteer work for a local marine reserve, all while lying there in my lounge chair :)
    Many organizations are grateful for volunteers and happy for any help they get. Just find an organization which
    you are interested in helping and check what kind of help they need. I choose tasks which are not time sensitive,
    so I have some lee way for when I am not feeling good enough to do anything.

  6. Hello Patrick! I have just come across your blog after Googling 'activities for people with m.e' I really appreciate your post and wanted to say thank you as I have been struggling and find it too easy to over do things while trying to fighting boredom.
    I don't think you could call it a hobby but I've found playing with and grooming my cats is fun and comforting but something I often forget I can do. Maybe if you have a really big dog it's not such a low energy activity but pets are a great place to gain comfort and distraction from pain and tiredness, I think.