The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Small lifestyle changes that have helped me :)

Discussion in 'Lifestyle Management' started by Nightingale, Jan 31, 2018.

  1. Nightingale

    Nightingale Chronically Cool

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    Hello!


    After being sick for 2 years, I've made a few adjustments to my management this month and I've seen some real improvement. I'm not talking recovery, just improving my pacing and able to push my limits a bit more. I thought I'd share what I've changed and ask you all what little changes have helped you all as well.


    Before this month I thought I was reasonably high-ish functioning. I could go out for 2 or 3 hours in the morning, then sleep all afternoon, and I could do that maybe 3 times a week. The other days would be total rest days. I couldn't exercise at all.


    I think I had become complacent in my management and pacing, reverting back to a bit of the boom and bust cycle. This was mostly because I wanted to be out in the world and having bigger outings, not realising it was setting me back.


    I think the most important change I made was adding two pre-emptive rests in the day – one in the morning before doing anything and one after lunch. I put on an eyemask, set a timer for 15 minutes and lie down and listen to music or tv. Here's a great article on pre-emptive resting http://www.cfidsselfhelp.org/library/4-nurture-yourself-with-pre-emptive-rest . I really feel like it's made a difference to me.


    Also, with the help of one of my favorite websites http://www.cfidsselfhelp.org/library/topic/Energy Envelope and Pacing , I got back to the fundamentals of pacing. I started doing smaller bits of activity spread out throughout the day, rather than blowing all my energy in the morning. I can still go out, but we try to reduce it to an hour or so, so I can still have some energy in the afternoon.


    After talking to people on the forums, I realised a bit of exercise is actually possible. I am able to walk for about 6 minutes, which is lovely just to get outside and have some alone time. I take frequent breaks while walking and drink loads of water. I can also lift 500g weights when the weather isn't good for walking. I don't exercise on days when I might have already been walking around, like if I've been to the grocery store. I have not experienced any negative symptoms from this light exercising, and feel I could gradually increase it a bit.


    Lastly, I've improved my diet a bit. It wasn't that bad before, but I love to bake. So now I've cut down to baking half a batch of something once a week, or taking my treats to friends or our support group. We're also eating more vegetables with our dinner, as we live near a wonderful fresh market. I'm also snacking a bit more frequently on healthy things, so I don't become ravenous and eat loads.


    Now I am able to do a bit more throughout the day. I can go out for an hour or so, and still be able to do some housework, some diy and crafting, and maybe even have a shower or exercise– all in the same day! As long as I pace myself and get my rests in, of course. It feels great, rather than just being able to go out for a few hours in the morning and then feel awful all afternoon.


    I just wanted to share this with you all as I was starting to feel quite powerless with my illness. But with these minor changes, I've been able to do a lot more throughout the day, and I feel I've regained some control. As with anything to do with ME, what worked for me may not work for you. I was just really excited to share this on the forums, as you all can appreciate how it feels when you feel a bit better than usual.


    What are some small changes that have helped you all?
     
    ljimbo423, echobravo, E.man and 7 others like this.
  2. lafarfelue

    lafarfelue Senior Member

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    Australia
    Great going on all those things! It's so nice to find little ways to help our bodies, regain some sense of self. :)

    One thing that sticks out to me the most recently is reducing my meal sizes. I used to be all about one or two large meals a day when I was healthier, but not so much anymore.

    As others here have pointed out before, eating more smaller meals helps a lot of us to help our own bodies in digesting food with less fatigue, brainfog, GI issues etc. So I tried it out for a while and yep, it helps all 'round :)

    I don't necessarily stick to a pattern/set mealtimes, but I do try to have a healthy meal around noon-ish, mid afternoon and an hour or so before I lie down for sleep in the evening (anywhere between 6.30-8pm).

    And something I've only just realised is that my body likes to have a bit of a fasting period between the evening meal and lunch the next day. That's been the case for as long as I can remember, but I never thought of it as 'fasting' til recently. I definitely feel better when I don't try to force my body to eat in the mornings.
     
  3. Sundancer

    Sundancer Senior Member

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    Holland
    thank you @Nightingale, your level of functioning is some higher then mine, but I was thinking along the same lines myself. I think I pace my activities ( cooking and doing the dishes that is) reasonably well.

    But lately I thought i should lay down in the midday, give the body rest. I know it would be the wise thing to do, but after being bedbound there is something in me that does not want to do that.
    I've a bed in the livingroom though ( for emergencies, when i really cannot take the hurdle of stairs). So your post gives me a nudge in the right direction,
    thanks!
     
  4. RebeccaRe

    RebeccaRe Senior Member

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    Massachusetts
    Thank you for sharing all of these tips! I'm going to look them over in depth when I have more energy!

    I have made a few small changes in my life that makes it easier to drink more, because at a certain point I realized that it took so much energy to drink (having to reach out, lift a cup, tilt the cup back, tilt my head back, etc) that I wasn't getting in enough fluid. So I have started keeping a water bottle with a bite valve in bed with me. That way I don't need to grab the water bottle or worry about leaks. It just lies next to me, and whenever I get thirsty I turn my head, bite, and drink! On good energy days, I might drink out of a cup from my nightstand using a straw so I don't have to tilt my wrist or my head.

    Although it seems counterintuitive, I've started waking up earlier on days when I need to leave the house. It takes me a long time to shake off the cobwebs after sleeping and slowly rev up for the day. So instead of sleeping until the last possible minute, sleepwalking through my morning routine, and stumbling out the door, I'll wake up 3-ish hours before I need to leave so I'll have plenty of time to wake up and rest first (we'll see how this works for a 7:30 doctor's appointment next week!).

    Another other thing I've done is recognized patterns of fatigue and building in resting periods at times when I know I'll be tired. For example, I'm always exhausted after bathing (it could be the exertion, the heat, or both). So I've just learned to build in an hour of rest time after I bathe and not to expect anything from my body in that time period. That helps prevent some frustration.

    I have also learned that, when I'm out walking, I should turn around before I get tired. Because if I wait until I begin to feel tired to turn back, then I'm going to be exhausted by the time I get home! It seems obvious, but it took me a while to figure out. I usually just do short laps around the block so I have frequent opportunities to assess how I'm feeling end the walk (usually one or two laps will do it for me).

    Also, I have purchased an e-reader. I found that I had stopped reading books when I first got sick because I didn't have the energy to hold them up, I didn't have energy to hold them open, and I didn't have energy to turn the pages (I'd just end up reading the same two pages over and over until I could work up the energy to move my hand). With an e-reader, I can prop it up on a small pile of blankets, and just tap or press a button to turn the page! I also got one that's backlit so I can read when I'm up in the middle of the night without disturbing my partner.
     
    CFS_for_19_years, PatJ and Sundancer like this.
  5. E.man

    E.man Senior Member

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    Bega Valley , Australia
    Little by little is important.

    Those with an upstairs bedroom should move it downstairs. I can't believe people punish themselves with a stack of stairs when they can hardly stand up !
     
    PatJ and Sundancer like this.
  6. Sundancer

    Sundancer Senior Member

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    Holland
    agree, that's what I have the bed downstairs for.

    But so happy that I'm able to go upstairs in the evening, sometimes shower and sleep in my bedroom. balance has to be found in all things
     
    PatJ likes this.
  7. E.man

    E.man Senior Member

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    Bega Valley , Australia
    Most of our houses are single level so that helps. Mine is a small house too which is 'easier'.
     
  8. Deep Soul Diver

    Deep Soul Diver deep soul diver

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    Northern California, USA
    This is so helpful. I just wanted to say thank you Nightingale. I really needed to read this today, and it's very important, and I'm so glad you are doing better. I am really disliking the limitations--shower, cooking, short walks around the perimeter of the house, art or writing, seeing a friend...I must pick very carefully from this menu each day. And I think I need to improve my awareness of my envelope and pacing. I am having major crash days a couple times a week and it's funny that I honestly haven't stopped to consider that my activities might be causing them. And I've been dealing with CFS for years, out of work for 3.5 years.
     
    PatJ likes this.

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