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How do you amuse yourself during the day?

Discussion in 'Lifestyle Management' started by Tulip, Jul 28, 2011.

  1. Tulip

    Tulip Guest

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    As in what hobbies or interests (even from bed) do you have that keep you sane/happy?. I am always interested in how others spend their days with this disease...

    I have just taught myself how to crochet properly, thanks to youtube videos :victory: so I am making 2 scarves and a blanket. I am also into bracelet making and plan to sell them on etsy soon. I was going to enroll in an advanced dip in nutritional medicine, but it is very science based and I just don't have the brain cells for it currently, so I will sit on that one for a bit. Other than that I run the whole house and yard on my own which is pretty exhausting in itself!. But I do find some days I am so bored I could scream!.

    Oh and of course there's the net :D

    How do you amuse yourself?
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its not sane but seem to spend alot of time here.

    he he he

    SOmething else would be good though.
  3. Tulip

    Tulip Guest

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    Definitely not sane lol
  4. alex3619

    alex3619 Senior Member

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    Hi Tulip, for me I need to be occupied but in various ways, distributing the stress. So I am doing internet advocacy, or playing computer games, or watching DVDs or TV, or reading a book when I can handle fine print. These use my capacity in different ways, each gives me a break from the others. Of course there are always household chores, which take much longer than they should because I have to pace myself. :(

    Once a week I also get to do voicechat in my second life ME support group - ME, FM, or MCS all welcome, though we are sympathetic to all health issues.

    Bye
    Alex
  5. alex3619

    alex3619 Senior Member

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    Hi heapsreal, sanity is relative. Sane for a fully healthy person - probably not. Sane for a person struggling with a long term badly misunderstood illness, looking for answers and trying to make things better - totally!. Bye, Alex
  6. ixchelkali

    ixchelkali Senior Member

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    Most of my day is spent getting through the day. I mean, taking a shower, getting dressed, fixing breakfast, doing a chore or two, etc. It's surprising how much time that takes when you have to go slowly and rest every few minutes.

    For recreation, I spend a fair amount of time on the web. Occasionally I knit. In the morning, when I can, I read. I play with my cat, connect with friends online, listen to the birds outside. And I have an active fantasy life: I design gardens, invent recipes, travel (via Google Earth), select my retirement home, spend my lottery winnings, all from my recliner. I also enjoy learning new things, so I research what interests me online. And then, because my short-term memory isn't worth diddlysquat, I can research the same thing all over again next month. ;) I've tried doing some creative things like drawing, because I really miss have a creative outlet, but it really saps my energy.

    Toni Bernhard had a couple of good columns on this topic lately, one on her own ideas, and one based on responses from readers. (If you don't know Toni, don't let the fact that it's on the Psychology Today website put you off. Toni's cool. She has ME/CFS herself, and has written about dealing with it from a Buddist perspective in her book "How to Be Sick.")

    http://www.psychologytoday.com/blog/turning-straw-gold/201106/things-you-can-do-the-bed

    http://www.psychologytoday.com/blog...gs-you-can-do-the-bed-revisited-ideas-readers
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i know, but somtimes it feels obsessive, but i suppose feeling like crap we are always looking for answers. I think thats why some psychobabblers say we have an illness belief but they dont get it, we are trying to find the answers to get better i suppose. It might be apart of our type A personality looking for perfection maybe.

    I think i hope that one day i log on here and theres a test and a cure. WHile theres hope??

    cheers!!!
  8. taniaaust1

    taniaaust1 Senior Member

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    I feel like Ive hardly any time to ever get bored as I can never fit in what i wish to do between doing my house stuff and rest but I do do some things which keeps my life enjoyable and interesting to me.

    Most of my free time is spent at PR or wrongdiagnoses forums (where I challenge myself to come up with some kind of suitable diagnoses for peoples mystery medical issues) or researching things.

    I occassionally play about with photography and like making adding borders and altering photos and making albums, photo calenders etc for presents for family

    I like to watch DVDS (i get about 10 from the library every week. I book them online and just get them picked up).

    Two days a week I have my boyfriend visit.. I usually get out on those days due to medical appointments and grocery shopping.

    Cooking is my other hobbie. I try to find interesting recipes online and on my better days will try them out and often will freeze up the extras for days Im not so good (this also of cause has benefits other then just having cooking as a hobbie).
    The past couple of weeks or so Ive been experimenting with making my own icecream and icecream flavours (apricot/almond combo is next on my list to make and try). Ive been having fun of late making my own recipes up, currently a stuffed mushroom one.. Ive been enjoying watching Master Chief due to this cooking interest.

    TV.. I dont like many things on TV but do enjoy the medical shows and have just started to watch Renovators.
    ..........

    I love the idea of travelling by Google earth, I'll have to sometime give that a try.

    Well done :) .. Ive had two or three people (even my grandma tried to teach me) before I was even sick, attempt to teach me how to crochet but without success. I dont know why I just couldnt pick that up thou I was a good knitter (I cant knit now as I struggle with my hands due to the ME when it comes to doing anything repetitive).
  9. Tristen

    Tristen Senior Member

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    When I was severe it didn't matter. Stare at the TV and ceiling

    When I was Mod-Severe, I was able to research and, interact with other online for fun via chat's like Skype and SL. TV

    When I was Moderate, I became able to visit with my girls, walk a little and sit in the trees, limited socialization with friends, and actually read a book. Look for any small way to be helpful to others and get out of the chronic self absorption. TV

    When I was Mild-moderate I began to want to pick up my guitar again, and do all the above.

    Now being mostly mild, I am playing guitar, visiting with my girls, socializing more with friends, pushing the exercise limits a bit more, and soul searching for what's next after this very long dark night of the soul. I rarely watched TV or spent time on the Puter before becoming ill, but they have kept me amused for the duration. But, I do need more now.

    What I'm not going to do this time is, enroll in classes, look for some mild work I can do, start trying to rebuild everything over night. I'm going to the beach barefoot. I'm enjoying the forest around me. I want to play.

    Great topic for me because one thing that feeling better does is that it puts you in this tough place of desiring to do more, but still being limited on how much you can do. But, I'll take it any day over severe illness. Things are new, they are different. I am different. I would like ideas.
  10. Tulip

    Tulip Guest

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    But even people with *respected* serious illnesses do it. Theres forums for everything from MS to Lupus with people asking exactly the same questions we do...we are all searching for a cure and that part IS normal, even though the internet addiction part may not be lol.
  11. Tulip

    Tulip Guest

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    Making up your own recipes sounds like fun. My 7 year old is obsessed with master chef! I found him getting his lunch ready for school the other day, cutting up an apple with a really sharp knife so he could have the apple "diced" (diced fingers more likely).

    Yeah it took me ages to "get" crochet, the books were really confusing and I just couldn't understand how to get the edges square until I found the best youtube video on it. I take plenty of breaks due to "crochet cramp".
  12. Tulip

    Tulip Guest

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    Thanks for the links :Retro smile:
  13. Tristen

    Tristen Senior Member

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    Northern Ca. USA
    I agree, it's a survival instinct to become obsessed with ones illness, or anything else threatening our being. The worse we are, the more obsessed we get with fixing it, it's normal and healthy. If I smash my leg, I'm not gonna set back and wonder at creation, or chat about the weather. So, even though I do believe it's a healthy survival mechanism, I think when it goes on too long, it can turn on us. Kind of hard to not go on a long time, when the illness does too. But, I have found it helpful to try and get my mind out of myself as much as possible. That's next to impossible when the illness is severe, and maybe it shouldn't be possible then. All in all, try to remember to be good to ourselves. We been through a lot.
  14. Valentijn

    Valentijn Activity Level: 3

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    Has he seen the Junior MasterChef Australia? It's pretty inspirational, even for grown ups :p And when the kids have knives, it's pretty obvious they're "special" knives.
  15. Tulip

    Tulip Guest

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    Yeah he watches that sometimes as well.

    I'd love to get some of those "special" knives.
  16. SOC

    SOC Moderator and Senior Member

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    Like everybody else, what I do during the day to stay sane varies depending on my symptoms and relapses.

    I manage to tutor a couple of hours on weekdays. Students come to me, so even when I'm feeling pretty lousy I can manage it, even if it's the only 2 hours I'm out of bed. It also keeps me connected with the world through the kids and their families.

    For a long time I couldn't read (no attention span), so I got started listening to audiobooks. When I was mostly bedbound I spent the day sleeping, listening to audiobooks and crocheting. Everybody I know now has a crocheted hat or two, lol. About half of them now have afghans, and now that my cognitive function is better, I've managed a couple of sweaters.

    The silver lining of no attention span and poor short term memory was that I could listen to many of my audiobooks (mostly Terry Pratchett) 5 or 6 times without getting bored. :D Also, for a while I lost a grip on the passage of time. I could crochet for 4 or 5 hours and think only a half hour had passed. That sure helped deal with the hours of boredom problem. That symptom I might have opted to hang onto for a while if I'd been given a choice. :D

    Now that I feel a LOT better and have much more cognitive function, I find myself wanting to do a lot more, but my body won't cooperate by providing the necessary energy. :( And I can't crochet for hours on end listening to the same books over and over, lol.

    Lately I've been trying to figure out how to do more of the housework/cooking within my limitations. While it's an intriguing puzzle, it's not very amusing.
  17. illsince1977

    illsince1977 A shadow of my former self

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    Like others here it depends greatly on how badly I'm affected at any particular time.

    At my worst, when all I can do is listen, though (not even turn on the computer, much less take care of myself or anything or anyone), I am totally hooked on radio and Podcasts. There's such a huge variety of Podcasts out there to download and listen to. No one has ever mentioned them as far as I've read when people inquire as to what we do to distract or amuse ourselves. TV and movies are close seconds during my least functional periods. Sometimes cryptograms, Sudoku and crosswords and jumbles. Obviously the internet and PR.

    When I'm more functional I take great joy in being able to grocery shop, cook, do laundry, look after the house a bit, maybe a tiny bit of gardening, swimming, and visiting family. If I'm well enough to do those things and sit up, I still wind down at day's end by watching something while keeping my hands busy mending or doing some needlework (like knitting or crocheting). If I had confidence that a remission would be sustained long enough, I might go so far as to think I could pick up the flute or guitar again, but honestly ambition like that has always wound up in disappointment and resigning yet again to loss of function. So the fewer ambitions I have, the happier I am in the end.
  18. Grampus

    Grampus

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    Well, as we are all aware, how much we can do on any given day is directly related to how we are feeling. :cool: I work full-time still, so that takes up MOST of my energy stores.

    That being said, I am an avid reader. Before I got my Kindle, I would go to the library to check out books. That experience can totally wipe me out, so I started just ordering the books online and going to pick them up when they were ready. My Kindle has made me lazy, yes, but it is great because I can "carry" lots of books and take it anywhere! Oh, and I also play lots of word games on Kindle, like Scrabble. Love, love, love Scrabble! My hubby and I play it all the time now (he has it on the iPhone too.)

    Sometimes I watch tv, but it makes me sleepy after a while. I surf the net, read forums and blogs, but that makes my eyes tired. I have cut down my "net" about 50% from 5 years ago.

    I still do my French learning, word of the day, online lessons, etc. I think it helps my brain. I have to learn at least one new thing in French every day!

    I have also taken up guitar. It's awesome to finally learn an instrument, but it REALLY takes a lot out of me some days. Plus, I'll get all frainbogged during my lessons (30 mins/1x wk) and feel like a dork around my teacher :rolleyes: But it is coming along...slowly, but surely. To me, music is just another language I'm learning. Plus, rockin' out can make me feel awesome some days :victory: I obviously don't rock out on days when I'm on sensory overload! Grrrrrrrrrr.

    I used to do some car racing and motorcycle track days, but have found that they take wayyyyyyy too much effort (physically) for me to do them. I miss it though... :( I also don't do any formal exercise program anymore. Bye bye muscle tone!

    When all else fails, I have my hubby and our fur-babies to keep me entertained. They don't care if I haven't the strength to wash my hair! :thumbsup:
  19. Graham

    Graham Senior Moment

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    How about setting up a local support group for people with ME and similar illnesses (don't worry too much about being exclusive to ME - there are other similar illnesses where people find the limitations frustrating)? Nothing grand, just meet up once a month (or even twice) somewhere pleasant for coffee (we go to garden centres). The big advantages are that everyone gets the good days/bad days episodes, no-one expects too much from you, and if you can't make it, well people understand. It can get a bit ME symptom-centric, but it is always possible to work on that. We have around 15 in our group, which means that we average 4 or 5 at a coffee meeting - just about right. I think one of the big bonuses is that it gets me mixing with people that I wouldn't have otherwise met, and keeps my world wider. Plus, when one person is going through an "ordeal" (such as moving house), the others can be very helpful.
  20. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Playing computer games, or making digital art, or playing with my beloved pooch when up to it :)

    highly recommend Civilization V, turn based game and not 1st person, so maybe les stressful, thoguh the "management" side of it may still be too much for some folks

    this is just the intro movie, not game play but I think it's gorgeous :)
    (watch it in 720p size if you wish to see it full screen, hit the WATCHONYOUTUBE button to go to it's page, its selection on the little bar next to expand/full screen options...in the game it plays in MUCh higher resolution, looks awesome)

    [video=youtube;sPu26IXwob8]http://www.youtube.com/watch?v=sPu26IXwob8[/video]

    Gameplay
    [video=youtube;SMA0iBRAdvI]http://www.youtube.com/watch?v=SMA0iBRAdvI[/video]

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