August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Discussion in 'Lifestyle Management' started by Furball, Jan 21, 2013.

  1. Furball


    Just wondered if anyone has anything they do while suffering? I used to play instruments & play a lot if sport ( football ,cricket etc) but of course that now is impossible,

    I've recently got a bird feeder station as I love wildlife & it's nice to help them out in winter & I've become a bit if a spotter lol. It's just a case of watching the birds , squirrels whatever come & identifying them with my book. I actually find it relaxing & rewarding knowing that your helping them out.

    I would have never thought that I'd become a " twitcher"

    Anyone got any hobbies to while away the hours of not being able to do much.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    Its a struggle to imuse your self when ones interests prior to cfs/me was sport and training etc.
    Mostly its TV for me, i liked watching 'cheers' but a few months ago it finished on tv but recently it started up again but with some of the older series, so these are being recorded and i watch them when im bored. I also like american pickers and american rstoration etc.
    I do like when some good sport is on tv not just the regular week in week out stuff. Australian open tennis is on which i like. its good when the olympics is on but it only lasts 2 weeks:( every 4 years.
    Im exercising again but its really a very low level not the same adrenaline rush i use to get. A good day for me use to be a hard 1 hour weights session followed by 30min of bag and rope work(boxing stuff), then get out and mow the lawn which use to be 3 hours where we use to live, then i would sit on the deck and have a cold beer and enjoy the exercise high. I dont think that will happen again.
    I wonder what people did with cfs/me before tv and the internet??
  3. Dmitri

    Dmitri Senior Member

    During teen years I spent most free time on video games and scientific topics.

    I returned to video games after a long break last month, it doesn't help that all technical appliances that I use seem to have a high failure rate.
  4. SickOfSickness

    SickOfSickness Senior Member

    Does anyone know where that good list of activities is? It was a year or two ago that we collaborated on a list of low energy things to do. I think it started on a blog here but moved to a different webpage.
    redrachel76 likes this.
  5. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    That was a good list. I hope something can find the link for it. Maybe it should be (oh word loss.. that thing when a thread is put and kept at top of pages with other important threads) by the mods.. or put into the useful info section of the forum (whatever its called.. oh my brain today).
  6. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Maybe they did things like what I was doing earlier.. ant watching!!

    I have ants all over my house right now.. so Ive put out the ant rid and have been watching them eat it. Its kind of sadistic that its giving me joy watching them eat it to take it back to their nest.
    rosie26, ibenagnes and MishMash like this.
  7. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    ive become a bit of a movie buff since having ME/CFS. I watch 1-2 DVDS every day. Before ME/CFS I used to be very active and into sports... Im now going back and watching the old TV shows from my childhood as many of those are now on DVD.

    ME/CFS has also got me more into photography.

    I do have a bird watching book but unfortunately there isnt many varieties I see. Some at this site have spent a lot of time watching animal/bird cams esp when birds have eggs and raising the chicks. Ive checked out the animal cams at times.

    One year (I'll probably do this again this year).. I killed a lot of time by making photo calenders (I had a calender program which came with my photocopier) for my whole family as keepsakes for xmas. I themed each month eg for mid summer had a photo of my nephew at the beach where he'd put a lump of seaweed on his head. I found good borders and backgrounds etc for the photos at free places online.

    I also have gotten into dream analyses. .. thou the ME/CFS can even mess up our dreams and make them harder to remember or give us nightmares instead to analyse. One can gain a lot of life insight by studying these.

    I also use a lot of time up.. in this forum... and researching ME/CFS stuff (thou I hardly do research any more as I think Ive already read every study out over the years). One can kill time by helping others who have ME/CFS too. I also do ME/CFS advocacy when Im able too.. I like to spend at least some time per week on that, whether its just to sign a petition or do something more complex like a letter.

    Due to the ME/CFS I also got into cooking more (when able).. as one usually needs to cook anyway.. so I got into recipe experimentation and really improved my cooking skills to the point that when I cook for anyone.. they will be surprised at how good I cook (that was before I developed even more food issues so now on a very strict diet and cant play around with recipes like I used to).

    ME/CFS hasnt stopped me from developing skills or hobbies but just made me have to change the ones I do...

    On my future agenda if I remain sick.. I plan to write a book. I brought a home DVD course towards the end of last year to improve my writing skills and sentence construction (Ive only done the first two lessons so far but its sitting there waiting for me.. I do the lessons in 20min periods as my brain wont cope with a longer time per day). There is a ton of home DVD courses on all different subjects one can get.

    If I get well enough to be able to drive again and do a whole lesson in one go.. I could then go back to study part time.
  8. Furball


    I also play games but I find my attention wanders after a bit, actually in most things I now struggle to " get into" things due to being foggy
  9. Jemal

    Jemal Senior Member

    Definitely videogames for me. I suffered from brainfog a lot and I couldn't play all videogames. I did find out however that online shooters were my thing. They are fast and frantic. They keep me awake because of all the excitement and most of the time I even get some energy from them. I am even starting to wonder if the adrenalin rushes I get from playing these type of multiplayer games do something for me...

    Obviously some days I can't even play these kind of games. Those days I spent in bed or on the couch. I tend to play some iPad games then.

    I also do a lot of reading on the iPad. I love to browse Wikipedia for example.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    i was playing a cool tennis game on the xbox but after enjoying it i could see my 15 y/o was getting frustrated by me cutting into his game time, so i have eased off some for now. Yes i do alot of reading on medical stuff, who would have guessed , plus it does help my job alot.
  11. ibenagnes


    I spend way too much time online in different fora`s. A few of them are really good.
    When I have good days I read. Photographing is another hobby, but also too challenging these days.
    Can`t carry heavy cameras and things like that. Photographing the way I used to is exhausting. Now I only take snapshots. I edit old photos and sort negatives.
    Used to work out a lot. Now I can do simple yoga on good days.
    I like to draw and cook. Cooking has become a hobby while sick. Not every day, but a few times a week I plan and cook something special. I don`t have a TV, but I watch some TV online or watch movies. I used to be a film snob, but now I watch about almost anything. Having a cat is sort of a hobby as well. Oh and I write periodicly.
    I also like to upcycle old clothes and things. Sewing pillows from old shirts and things like that.
    Think thats about it.
    Wait! I spend a lot of time thinking. That`s sort of a hobby! Ha ha.
    Janice Hargreaves likes this.
  12. caledonia


    Cincinnati, OH, USA
    I've gotten into geneology this past year. It really is like being a sort of detective, and it's a lot of fun. I've discovered the answers to a lot of old family mysteries. I have a tree set up at

    I really love my Roku box. I can stream instant movies and tv shows from Netflix for a cheap price. There are also many other free commercial and private channels. I have it set up so I can stream internet videos from various sources (Facebook, Vimeo, Youtube) on my tv.
  13. peggy-sue


    I find it very hard to amuse myself when fogged up.
    I can't cope with a film - they're too long and very few are worth watching anyway, I can't handle the canned laughter on comedy shows. Reading is hard, either from a book or on a pc screen, but I can cope with forums when posts are not too long and are just making one point at a time.

    I spend a lot of time playing various solitaire card games on the pc. I find these easy and they don't use up much working memory. It helps a lot that I played bridge before I got ill and got to know a pack of cards very intimately!

    My one big hobby is in researching Art Glass, but again, I "gathered" all my knowledge on the subject before I got ill, and I can use that to carry on with it. I do find learning new stuff is hard.
    sparklehoof and ibenagnes like this.
  14. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    Video games, when I'm feeling better I do 3D art :)
  15. justy

    justy Donate Advocate Demonstrate

    For the first couple of years of my latest relapse i was too ill to do more than 5- 10 minutes of computer at a time. so i took up tapestry - which i could do in bed for short bursts, and i also used to listen to talking books while laying down. Apart from that when i was that ill, just getting up and getting dressed took a long time, then there was the interacting with my family and a bit of cooking occasionally.

    Now i am quite a lot better (but mainly housebound) i have started cooking again for fun - although ive just started a paleo diet - so baking is not so much fun - but a big challenge which i will rise to!

    I have also signed up for a degree with the OU - im in my second year and i can work away slowly - a little bit of study every day (except for weekends, unless i have an assignement) i am doing a degree in English Literature with creative writing, which is opening up new posibilites for work as a housbound PWME. The great thing about the OU is that they make allowances for diabilities, i dont have to go out to do it and due to being on a low income i get my fees paid and get a grant. The first year was very tough as the brainfog was quite bad - but this year is a bit better.

    All the best, Justy.
    golden likes this.
  16. redrachel76

    redrachel76 Senior Member

    I like crochet and knitting but I have too much pain to do it much so I bought the cheapest easiest knitting machine I could find online. It is one where you turn a handle wheel instead of knit. It's called "Addi Express". It's a bit naff for the money it costs but good enough for me to use.
    I knitted my first (ugly ) sweater using it. It took 5 months because I can only do 5-10 minutes at a time. Felt very pleased with myself.:)

    I remember having ME before the internet and cable TV. The only good thing about it was that I sat outside my flat more and got more sun. It was better when the internet and TV came.

    I also watch films more since I got ill.
  17. svetoslav80

    svetoslav80 Senior Member

    For me it's computer (mostly) - from programming to playing games, doing math problems, feeding the street cats near my house (they are my only fellows). I also used to play guitar but it's too tiring for me now.
  18. Nielk


  19. Scaldy


    Vancouver, BC
    I'll try and keep this short. I'm a 33 year old female M.E. sufferer for the last 5 years. Before that I was a PE teacher who coached allot in her spare time. I grew up playing many different winter/summer sports, a good amount of video games and I was pretty much a tom boy.

    Now with ME I struggle to be active.On "good" days I have a 2-3 hour window in the afternoon where I can take care of the basics like Grocery shopping etc. On bad days I'm stuck in my bedroom. I use to have so much drive and purpose in my life. I always tried to set goals. I had lots of hobbies. And then *POOF*, everything is gone.

    To fight back and to keep a positive attitude I try to stay as busy as I can. Here are some of the things that have worked for me.

    9 holes of pitch and putt golf. Sometimes I use a golf cart. Bowling, Pool.
    Driving my car. It's a Scion FRS/ Toyota 86 and it's a blast!
    Using the computer. Reading, surfing the web.
    Shorter walks. Including my shih-tzu and playing with him.
    And finally way too much TV time.

    I know and understand that for some people with ME, a 2-3 hour activity window and being able to drive would be a godsend. I try not to take these gifts for granted.

    I would really appreciate hearing from ALL members on what you do to make your life more interesting. This is my first post but I have been enjoying this website for awhile :)
    *GG* and ibenagnes like this.
  20. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Certainly you should not take the level of functionality that you still have for granted, but that doesn’t keep the loss you have experienced from being frustrating. Right now my aging parents take up a lot of my functional time, so my answer will be a mix of things I do and things I have done and/or plan to do.

    I too spent time on the computer and take short walks. I would like to get back to video games.

    I enjoy jigsaw puzzles, but do not have time for a real one, so I do the online ones at National Geographic. I also like the word games and vocabulary quiz at Merriam-Webster Online.

    I enjoy doing sudoku puzzles from the newspaper and sudoku books. They are probably available online as well. I also do various other puzzles for the newspaper.

    I enjoy coloring. This is an activity that is underrated by adults, in my opinion. You can get coloring books designed for adults and all sorts of crayons, colored pencils, felt-tipped markers, paints, etc. Of course, if you are artistically talented, you can draw, paint, and whatever else talented people do.

    I enjoy spinning wool into yarn with a hand spindle. I find this very calming. It is also rather inexpensive, at least when you are as slow at it as I am.

    I plan to relearn to knit and learn to crochet. My mother has had Alzheimer’s disease for years and it looks like my father is developing it too. I wish that my mother had some activity that she could still do by rote. As more of us live to greater age, more of us will develop some kind of dementia. Although I am already past fifty, I am hoping that if I take up knitting and/or crocheting and continue to do it/them, I will be able to do it/them if I develop dementia.

    You do not need to worry about what to do with the items you make. There are many places that will accept them as donations. That does mean that you need to be able to afford to buy the yarn. I have come across a couple of places that will provide the yarn for items that will be returned. Some people also find cheap yarn at yard sales or online when a needle worker ‘destashes’ or passes away. While expert needle workers can make complex and beautiful things, a simple crochet or knitting stitch will make perfectly serviceable scarves, blankets/afghans, and lap robes. Some animal shelters will accept small blankets, including less-than-perfect learning items.
    SickOfSickness likes this.

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