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Living with ME/CFS: Survival Tips

Discussion in 'Lifestyle Management' started by shrewsbury, Jan 13, 2010.

  1. shrewsbury

    shrewsbury member

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    During all the years of learning to live with this disease, I've often wished there were a resource out there that provided tips on all the different aspects of how to live with it. My learning has all been so piecemeal and slow and on-going. Reading different things in different places. Being forced to come up with new ways of doing things. Little brain waves. Suggestions from astute friends.

    Have thought of writing 'the definitive' survival book myself and using it as a fund-raising tool somehow, but of course, trying to get dressed everyday, keep myself fed and have more than one shower a week, let alone maintain my key relationships, hasn't left much time or brain for that.

    There are lots of great tips on the forum here. I thought it might work to compile tips here for now. I think it would be so useful for newcomers. And maybe someday we could do some fund-raising with it..... or not.

    Here are a few random tips:

    I usually cook 'big' so that the food can last for a few days. Then I can eat it for a few days straight, and freeze some in meal-sized portions whenever I have the energy over the next few days.

    I keep a 2 big bowls on the kitchen counter so that as I prepare food, compost goes in one and garbage goes in the other. That way I only have to walk the few feet to put these things in their place once at the end of cooking. The 3rd bowl, recycle, has a place of honour behind where I prep.I only have to empty it into the blue box a few times a week.

    I use an exercise ball for when I can sit up to use my computer. I figure the micromovements help keep my strength and flexibility.

    On lying-down days, l do about 5 seconds of exercise at a time - a leg lift, an arms raised, a crunch and hold..... And spread them throughout the day.

    On days I can move around the house a bit, I try to build my 'exercise' into my daily tasks if there's extra energy for that. When going through a doorway, I do a few doorway psuh-ups. When emptying the dishwasher, I do deep-knee bends as I collect plateware from the bottom shelf.

    I keep a list on the fridge and write down what I need next shop as I realize it. Important ones are *ed so that if I'm too tired or foggy to shop long, I only get the necessaries. When going for a big shop, I sometimes rewrite the list in the order of where things are in my grocery store.

    While shopping, I only get what I've written down. I don't look at other items or go through unneeded aisles as that is all too energy wasting.

    I plan outings for when there is the least traffic.

    I got one of those plastic bed protectors to save my mattress from all the nightsweats.

    When talking with people, I last longer if I'm flat. Friends got me a folding gravity chair that goes flat to use in places there is no couch.
  2. shrewsbury

    shrewsbury member

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    I just recently found a great tool for use with the computer. It's called coolpreviews and is a firefox add-on (I have nothing to do with this company, own no shares etc. ). Instead of having to click on links to see them, coolpreviews has a little box. You put the arrow over it and it shows a smaller screen of where the link would have taken you and you can maneouver around (and lock-it there if you wish - otherwise, when you move they arrow outside the preview box, the box disappears). It saves me a surprising amount of time and energy not having to click back and forth. I've used it for about a week now with absolutley no problems.
  3. Andrew

    Andrew Senior Member

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    Thank for the helpful tips.
  4. Koan

    Koan Be the change.

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    Yeah, If, I want to second Andrew's thanks!

    good tips!
  5. Kati

    Kati Patient in training

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    Islandfinn, thanks for the tips. One of the things I have been recommended when I joined the forums (some 8-9 months into my illness, is to spend a lot of time horizontal, since it's easier on all your organs, including the brain and the heart.

    Like you, I function better laying down, less dizzy, and can concentrate longer. And as for organ preservation, I trust I trust the long timers for they speak with experience.
    Now I have to convince my disability company.
  6. OverTheHills

    OverTheHills

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    This will sound strange but.... my tip is listening to BBC Radio 4* (or its equivalent in other countries) especially over the internet.

    I find listening at low volume while lying down (if necessary with the eyes closed and falling asleep in the middle) conserves my energy but distracts my mind and keeps away distressing brooding. And if I do fall asleep I can rewind later thanks to the internet.

    Pleasure through acheivement was my thing (however relative - I was no olympic athlete or Nobel prizewinner). After decades of "doing stuff" (physical and mental) I found the transition to "not doing stuff" extremely hard.. Not being able to concentrate hard or remember well meant not learning and not reading anything of substance. But on Radio 4 I can listen to all sorts of documentaries, classic books, satirical comedy etc. and I can feed my mind a little without it being too tiring.

    Loneliness is also a problem for many of us. Radio4 is good company.

    * a speech-based station which has news, documentaries, drama and readings, comedies etc
  7. Sunday

    Sunday Senior Member

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    Wow, OverTheHills, thanks for the BBC 4 tip. Great site! In return, I'll pass on TED Talks, http://www.ted.com/, where I first heard Bruce Lipton talk about how our thoughts can influence our DNA; they have a lot of interesting speakers on technology, the arts, business; also some comedy. It's an excellent opportunity to hear ideas from places in the world Western media seems to pretty much ignore, such as the Middle East. They're talks with "non-mainstream" perspectives, length from short to an hour (or maybe longer, I don't know their full extent). I can get tape and CD books from my library, too. Though I confess online TV has become a serious addiction in times of crash, very low-brow. Sometimes escapism is what I need.
  8. Sunday

    Sunday Senior Member

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    Islandfinn, great tips compilation; some of these I'd worked out but some I hadn't thought of. I have to say, on days I can stand up and houseclean, rather than putting extra calisthenics in I really prefer to get a little more exercise by going out in the garden and pulling a few weeds, taking a tiny walk to enjoy the outdoors or maybe a little yoga. A sun salute covers just about everything, and you can do it really SLOW. When I was learning it I was so brainfoggy and weak, it took me over a month to get past the first four positions. But even that much helped. But this is all personal preference.

    THANK YOU for the Firefox add-on tip. Every time I upgrade they tell me how many cool plug-ins they've got, but then you have to go through them and think about it...I rarely get around to it. This one sounds like a no-brainer, and I appreciate you pointing us to it.
  9. cgstar4

    cgstar4

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    usa

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