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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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What to do when you can't do anything?

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

  1. anne_likes_red

    anne_likes_red Senior Member

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    Ukulele

    Lilly,
    I can still manage my guitar, but I do find Ukulele easier these days. Some days, not very many though, I don't have the stamina or I'm uncomfortable with swollen glands and tense muscles - including even my fingers :( - and I can't hold anything up much. You do need a bit of finger strength. You can actually buy children's sized guitars which are not too much bigger than a ukulele so if you prefer the sound of guitar it may still be an easy option.
    Youtube has good basic Ukulele beginner lessons - my 6 year old just started with some presented by Madeline Pots www.madelinepots.com. They're obviously presented for children, but they're free so you have nothing to lose having a look anyway!
    I personally love ukulele - we're going to see The Ukulele Orchestra of Great Britain next Saturday. So rapt they're coming to my city.
    Is it ok to post a piece of theirs?
    [video=youtube;bQoHKACVU-w]http://www.youtube.com/watch?v=bQoHKACVU-w[/video]

    BTW You don't need a super-flash ukulele. I think ours were the equivelent of about US $35 and $55.
    :)
    Best,
    Anne.
     
  2. penny

    penny Senior Member

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    Southern California
    Jigsaw puzzles - not high excitement but (other than sitting in a chair) they are pretty easy on the body and can provide some entertainment/distraction.

    games on iphone (which in itself is wonderful, so much in a easy to holdl package) - there are lots of addictive, challenging and/or mindless games that I turn to to entertain (word games - scrabble, wurdle) or soothe (solitare) me. And if you like sudoku type logic game, there's a good app called PuzzleManiak which has lots of different types of logic puzzles with a wide range of difficulty levels - so when I'm feeling not so sharp I can still play. Most games are only a couple of bucks, or free.

    somebody mentioned bbc, if youre in the states they have a lot of their stories available online, the one I have bookmarked: http://www.bbc.co.uk/radio4/programmes/genres/drama/player/episodes

    oh, and podcasts are a good way to get some short bits of fiction. I don't know many but I like the escape artists ones - they cover science fiction (escape pod), fantasy (podcastle) and horror (psuedopod): http://escapepod.org/

    If you do like reading, I'd also put in a plug for ebooks. I got a kindle this past summer and it really does make reading easier for me. Physically it's quite light and I can get settled in one position and read for quite a while (no moving around to turn pages or to flip the book over if you're lying on your side - a reading position which can be quite uncomfortable for a big book). Also sometimes it feels like I have a harder time 'seeing' so being able to bump up the text size is good.
     
  3. anne_likes_red

    anne_likes_red Senior Member

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    Absolutely agree! :thumbsup:

    (On your birthday you can do all that - and eat cake!)

    :Retro smile:
     
  4. anne_likes_red

    anne_likes_red Senior Member

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    Penny,
    That BBC iplayer link worked for me (in NZ) - woot! What a find. Thank you!

    And thanks for the Kindle review. I was asked if I'd like one and I wasn't sure if it would work out easier or not. The idea of being able to alter the text size to suit my variable needs is attractive.


    The Spitfire - Great website, and lovely work. Looks like you have a lot of fun :)
     
  5. penny

    penny Senior Member

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    Great! Glad they were useful :)
     
  6. camas

    camas Senior Member

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    I've always thought that the boredom of this disease is almost its worst aspect. I do the usual -- read, watch movies, follow sports, needlepoint, play scrabble, keep up with old friends on facebook (and play a little Farm Town too), and when my cognitive skills are at their best, do a little writing.

    I second Penny's recommendation of the kindle for all the same reasons. I used to read a book a month, but with the kindle I'm averaging five or six books a month. You can download a number of classics for free.

    I've also been doing genealogy for years and host a website devoted to it, so have made the acquaintance of a lot of distant cousins. It's fun being a sleuth and you can do it at your own pace because it's not like your dead relatives are going anywhere. :D
     
  7. justy

    justy Senior Member

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    i just wanted to say that i am really enjoying this thread. Thanks guys!
     
  8. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi everyone

    My strategy to avoid boredom is a little different. Boredom is about sameness. Dealing with it is about shaking things up - not easy to do when you can do so little.

    I switch between TV, DVDs, PR forums, XMRV/ME/CFS research, a little housework (not as much as I would like), cooking, and computer games.

    Most of it is computer games.

    There are many types of computer games. If you like any kind of game, there is a computer game to match, but not all CFS patients can tolerate the shifting visual presentations. I know another severe CFS patient who has similar computer game likes to me. I like "Open World Role Playing Games". These are essentially areas on a computer world where you can have an avatar travel, interact, and explore. The ones I play are at least borderline violent, so it isn't everyones cup of tea. What I have to avoid is adrenaline, so I avoid intense shooter styles of games - these are bad. The thing about open world games is you can spend hundreds of hours exploring them, and every time you play it is different. The other patient I know who likes this spends a lot of time peacefully exploring wilderness. This is a way to get out in a virtual world for people who are house or bed-bound.

    I break up RPGs with strategy wargames, which require planning. Again, not suited to everyone, but it exercises my brain differently.

    So the overall strategy is to accumulate different pastimes that use our brains differently, or make different physical demands, and keep switching between them, and experiment with doing them differently. Change is good, provided it is set at our own individual pace.

    Bye
    Alex
     
  9. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    I don't have the brainpower to do puzzles or anything that requires much concentration, but have found that I can write short notes to people. My daughter (who also has CFS) takes pictures of bugs, leaves, flowers- things right in our yard, and we make cards by attaching her photos to blank cards. We got a small photo printer for $30 so we don't have to get out to have them developed. We use these to remember birthdays and anniversaries and to send general greetings. We have (unfortunately) many friends and acquaintances who are going through difficult times with cancer treatment or loss of a family member, and they seem to really appreciate knowing others are thinking of them. It has also helped us not feel quite so isolated.
     

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