1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

What to do when you can't do anything?

Discussion in 'Lifestyle Management' started by Lilly, Nov 20, 2010.

  1. Lilly

    Lilly

    Messages:
    17
    Likes:
    0
    Hi! I've been dealing with POTS/OI & I'm pretty sure CFS, my dr won't call it CFS though, for 13 years now. It totally sucks. I try to be as thankful as possible. My biggest problem is boredom!*
    I've watched as much tv & movies as well as listened to music & audiobooks & just lay there staring at the wall. What else can I do? Whenever I try to do anything I get overwhelmed by dizziness, nausea, yacht, & exhaustion. I even pass out.
    I take all my mess religiously, work *on gradually increasing exercises & do what I can when I can which is like glib on the comp for 15 minutes 3-4 times a day.
    Does anybody have an idea of anything else I can do to occupy my time?
    I see some of you are told to rest till you feel better and I try but it's driving me bonkers!*
    Sometimes I wonder I'd boredom means I can do more but the least little thing drains me & takes so long to recover. I feel like a useless person.
    Any advice?
  2. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,964
    Likes:
    3,019
    N. California
    Hi Lilliy--

    I surely can relate to this issue of BOREDOM. And I know I won't be the only one here who does.

    I remember in the movie Frida (about Frida Kahlo), how that was one of her big complaints about living with damaged body... the endless tedium and boredom of it all.

    Personally, my sanity comes from doing creative work: drawing, painting, singing, working on video, and whatever else grabs me. I consider ART my personal savior. Sometimes, when I feel really wasted, I just close my eyes and vocalize my pain and exhaustion--just sing, hum, howl, moan, chant whatever comes spontaneously into my mind.

    When I feel a bit better I draw in bed with Caran Dache Neocolor crayons on a small (8X10) sketch pad. When I feel even better, I paint with acrylics, which are messier and require more clean up than crayons... Though I do find that the mushy dense substance of paint is so satisfying for self expression, that it's worth it to make the mess and deal with the clean up later.

    My paintings are not something I do for show or to please others. They are an expression of my inner process--my pain, fear, depression, hopefulness, anger, release-- and that's what I love about painting them. Here's a couple that I painted during the past year--one was done a very bad day (Brain In Distress) and the other was painted during a day when I felt more feisty and hopeful (Will To Live).

    I hope that's helpful. Good luck finding something that liberates you.

    Attached Files:

  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    327
    Southern USA
    Dreambirdie, nice artwork! Did you make your avatar?

    Those are good ideas. I love to take pictures. If I can't go outside, I take them inside. Plants, pets, closeups of ordinary objects in my home. It is fun.

    In the communitity forum there is a thread about photos and photos inside. I love to edit them with Paint Shop Pro.
  4. IntuneJune

    IntuneJune Senior Member

    Messages:
    554
    Likes:
    4
    NorthEastern USA
    Just jumping in to say I love your work, Dreambirdie! You are so talented.

    Sallyblooms, I remember Dreambirdie talking about her avatar some time ago, it is her work, how beautiful.

    Lilly, I am not bedbound but have been spending more time "lounging" because of exhaustion. Have been spending more time on-line which I do not believe is the best. Wish I could get back to knitting..... just thinking about this though... well, I just don't know.

    Hope some inspiring ideas come along.

    June
  5. Lilly

    Lilly

    Messages:
    17
    Likes:
    0
    I've never really tried mindless sketching. I used to draw but would get frustrated bc it didn't look like I wanted it too! I'd have to get over my perfectionist tendencies. I can still give it a try.
    How hard is drawing compared to reading or being online?

    June, I knit on and off but can't seem to do it for long periods of time. That's a big problem for me, I can't do anything for an extended amount of time so all my time up in the air when I'm not in a complete restful state
    Have you tried crocheting? It takes less energy than knitting
  6. IntuneJune

    IntuneJune Senior Member

    Messages:
    554
    Likes:
    4
    NorthEastern USA
    Lilly, yes I have crocheted and it takes less energy to hold the "work" with crocheting.... hummm ... I save all my patterns, maybe I need to think about that again.

    I bought a laptop computer when I had my foot operated on, it really helped me a lot. I felt I still could connect with folks. I got onto facebook, etc. It would be nice to have something to show though for the "down" time.

    June
  7. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,964
    Likes:
    3,019
    N. California
    Drawing is as hard as you make it. If you think of it as journalling with pictures instead of words, it's not that much harder than writing a few paragraph post on the forum.

    These watercolor crayons are what I use http://www.dickblick.com/products/caran-dache-neocolor-ii-artists-crayons/

    You can use them dry, or dip each one in water and use it like a paint brush. They have great rich colors. I started with a set of 15, and now have the box of 40. They are very convenient to use in bed.
  8. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,964
    Likes:
    3,019
    N. California
    Thanks June and Sally. Yes, the avatar is one of my paintings, which is called Talking To The Universe.

    I really enjoy painting. It gives me some semblance of freedom amidst all these awful restrictions.

    Here's another one I painted on a happy day called I Am A Dancing Volcano Enjoy!

    Attached Files:

  9. hollie9

    hollie9

    Messages:
    45
    Likes:
    1
    Northern California
    Lilly, if bedbound you could meditate. It's good for one's health and mind. It takes patience and is a learning process. There are good audiobooks on Bhuddist meditation by Jack Kornfield. The monks do it for years.

    I always mean to do it but don't get around to it....I was meditating a lot for awhile but got out of the habit and need to start up again. Even Dr. Oz says it's the number 1 thing we can do for our health.

    Hollie
  10. helen41

    helen41 Senior Member

    Messages:
    561
    Likes:
    111
    Sleepy Hollow Canada
    Dreambirdie, I've tried to expand your avatar in the past because it looks intriguing. I had no idea it was your work. Well done! I'd like to see more.

    Lilly, what I do with my time is enter online contests. The trips I enter for my daughter, guitars for my nephew, toys for friends children, and for some reason, lots of camcorders for myself (I won 10 last year- that's what everyone got for Christmas LOL). It's in small segments, I don't have to concentrate, sit up or do much. Winning is pretty intoxicating (just look at the turnip movement) and people are delighted when they suddenly win something they have no idea they tried for!
    Not what I wished for, but if this is my new life, it helps take a bit of the sting out.
  11. Lilly

    Lilly

    Messages:
    17
    Likes:
    0
    Hmm so it's not something I'd be able to do a TON of like a few hours a day. My problem isn't what to do it's energy & not feeling horrible doing it. But I can try drawing!

    Hollie, I've meditated some, it gets boring. Maybe I'm to antsy of a person. I should look for more information on doing it properly

    Helen, where do you find the contests?
  12. Nielk

    Nielk

    Messages:
    5,105
    Likes:
    4,682
    Queens, NY
    Dreambirdie: You have a talent and it's great that you can use it and I'm sure it's therapeutic.

    I too love to paint. When I feel better I paint with oil other times I draw with pencil or charcoal.
    It's hard to get myself started but when I do, I feel transported to a different plane and time just passes by without realizing.
    It's very therapeutic for me. I just lose myself in the work.
    I have to get myself more motivated to start.

    Lilly: If you enjoy drawing, I strongly recommend it. It's not the outcome which is important, it's the expressive process.
    You don't need to show it to anyone if you are not happy with it. Just doing it, will make you feel better and will make the time pass.

    Attached Files:

  13. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,964
    Likes:
    3,019
    N. California
    Yes Nielk, it really takes me out of myself when I paint or draw or sing. I think they call that "the right brain shift," where you switch gears from the left brain (linear, word-based thinking) to the right (which is spatial, non-conceptual, and perceives the world beyond time.) Betty Edwards taught people how to draw using this idea. Check out it out here: http://www.learn-to-draw-right.com/right-brain-drawing.html

    I am totally in agreement with you about how important the expressive process is. So much of this illness puts you in a passive head space, just watching the world go by. But when you do art, you engage a different part of yourself. You become "the creator," you get to call the shots on every aspect of what you create, and that's very empowering.
  14. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,384
    Likes:
    1,151
    Have we had a thread here for showing our art? It would be interesting to see. I am sure many of us who are sick do something creative because being ill makes your mind switch sometimes into creativity due to the boredom. I know for me it has. I am so thankful for making jewelry. Even if it wasn't my business, I would do it anyway just for the sheer joy of making something, especially during my most sick times. It helps me out of my funk and pain even though sometimes it can induce pain. I feel it is worth it because it feeds my soul.

    I love to watch movies too and have the candles lit. That keeps me entertained.
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,918
    Likes:
    784
    Concord, NH
    Umm, I would say find another doctor? Why can you not get a diagnosis? 13 years seems like an awfully long time with no diagnosis!
  16. Nielk

    Nielk

    Messages:
    5,105
    Likes:
    4,682
    Queens, NY
    Another idea I thought of for you to pass the time is puzzles.
    Sudoku, word jumble or jigsaw puzzles.
    They take your mind off other things and it's good practice for the brain.
  17. anne_likes_red

    anne_likes_red Senior Member

    Messages:
    835
    Likes:
    246
    Things to do in bed.

    I'd love to hear (and see) more of what people do to feed that part of them :)
    I love that you've found that side of yourself as kind of a silver lining.

    I know a few people with CFS who worked in creative occupations, and having to let go of something that was so much an expression of themselves, as well as all the regular positive feedback that can come from creating things that are well received has been very hard.

    My GP (General Practioner - MD) recommended spending time doing something creative. My work during the 1990's had involved design and colour, and tutoring the same. I'm not sure if his recommendation came as a general one for all affected by chronic illness or if it was he thought it would be beneficial for me to keep in touch even in a small way with my previous occupation. If I'd been a gardener perhaps it would have been better for me to get a window box or some manageable pots??
    My mcs has gradually got worse so I have to use as non toxic materials as possible, and I need to have projects that don't require much set up, time to complete, or any that make a lot of mess to clear up. I still get a lot of satisfaction even though my projects aren't very ambitious. Making things is part of who I am and I'm grateful to have found some light creative projects that I can work on during rest time.
    I have the use of a workshop and some assistance for hand-printing when I have the time and energy for that, and lately I've coloured lots of smaller prints in bed. I live in a busy pedestrian street with people streaming past on their way to either the beach or cafes and I open the windows (smell the coffee!) and can happily spend an hour or two colouring/resting and feeling not too disconnected from the world.
    A real bonus is that my kids (keen makers of things too) come home from school and look first thing for anything new I've made, and then set about making more things themselves! It's gratifying they see me as something other than a tired person. Actually, I've realised that aspect is probably just as good for my soul as making things.
    Happy to get some photos up sometime if there's a dedicated thread.

    I played piano and guitar before I got sick. Haven't really looked at either for years but I took up the Ukulele this year to be able to keep up with my children. Easy to practise in bed too :) I close the windows if I sing. :cool:

    This year I've researched our house, and my ancestry. Mostly online. and mostly from the comfort of my bed. Very rewarding. I also learned crochet.....I'm no natural there! (Yay for Youtube's basic tutorials.)

    In her PR interview I remember Veronica (Athene) recommended people with CFS do a creative writing course. There are writing groups online. Courses too no doubt.

    I read a lot, always have. I can't tolerate much television, but I go through phases of watching DVDs. I do sudokos sometimes, but if I'm too tired I can't tolerate a whole puzzle and the frustration makes it counter productive. For me any "resting" activity needs to have just the right level of challenge and the right level might be different one day from the next.

    PS Who mentioned perfectionism? Letting go a bit is SO liberating. :victory:
  18. Lilly

    Lilly

    Messages:
    17
    Likes:
    0
    Ggingues: I've been diagnosed with POTS but I think my dr has been reluctant to say CFS bc of *stigma it had when I first was sick. Although the stigma is changing & he alway looks into treatments for Cfs to improve the fatigue that comes with POTS. I very very cleary have POTS no doubt in that so I wonder how to know if thins act up bc of POT or CFS ya know?

    Anna: I was thinking about ukulele recently. I used to play some instruments but never guitar or ukulele. So I'd have to learn. I thought guitar might be a bit heavy? *If you have any advice in that area I'd love to hear it? Does guitar or ukulele take a lot of hand & arm strength?
  19. justy

    justy Senior Member

    Messages:
    2,415
    Likes:
    2,188
    U.K
    Hi, I dont have the problem of POTS, but i do gt bored as i am mostly housebound with M.E. I spend too much time on the computer, but that does stop me from feeling so lonely. I have started trying to knit again and enjoy most craft activities. I also have been doing a tapestry and some days making cards. On my birthday i treated myself by choosing a whole selection of music and then got out my craft box and made cards, listened to music and sang along. Then i wondered why i dont do this for myself more often and why did it have to be a treat?
    I sed to play the piano and dcided recently to try it again, but sadly for me, the effort of coordinating 2 hands and trying to read th music at the same time was too much and my brain went very haywire. afterwards i was really exhausted.

    The boredom is really hard to deal with. I also meditate and listen to BBC Radio 4 - which is so interesting and i have learned a lot from all the diferent programmes.
  20. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,384
    Likes:
    1,151
    I spend a lot of time on facebook. It makes me feel not so lonely. Plus, it doesn't have to be an intense deep email and doesn't require a lot of energy. When I push "like" on a specific product, I like that in my news feed...it shows if it is on sale or if there is an event at a store that I may want to go to. Many of my artists friends are my friends and I get to see their work.

    My website with what I do is www.spitfire-designs.com. I also have a page on facebook where all of my work comes up as soon as I make it. I post pieces right after making them. Spitfire Designs Jewelry.

    A couple of years ago, before making jewelry, I would sew. I sewed appliques onto purses and jeans. I love taking a pair of jeans and putting all kinds of funky things on them from Joann fabrics. Buttons, paisley, a Rolling Stones tongue! It's fun. I still do that when I have down time after Christmas from selling.

See more popular forum discussions.

Share This Page