International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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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?
     
    jpcv, Eneia, Judee and 16 others like this.
  2. lafarfelue

    lafarfelue Senior Member

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    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.
     
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  3. Sundancer

    Sundancer Senior Member

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    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!
     
    alkt, jesse's mom and Mel9 like this.
  4. RebeccaRe

    RebeccaRe Moose Enthusiast

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    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.
     
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  5. E.man

    E.man Senior Member

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    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 !
     
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  6. Sundancer

    Sundancer Senior Member

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    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
     
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  7. E.man

    E.man Senior Member

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    Most of our houses are single level so that helps. Mine is a small house too which is 'easier'.
     
    alkt, jesse's mom and Mel9 like this.
  8. Deep Soul Diver

    Deep Soul Diver deep soul diver

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    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.
     
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  9. kendonoghue

    kendonoghue

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    Getting a shower chair. Stool for the bathroom. Angled computer stand and wireless trackball. All have helped me conserve energy.
     
  10. Mel9

    Mel9 Senior Member

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    A high stool in the kitchen has helped a lot
     
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  11. jesse's mom

    jesse's mom Senior Member

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    the high stool in the kitchen helps me, and I get my daughter and husband to help with all the big pots. I never pick them up or wash them myself anymore. when groceries come in I never unload them. I stand by the refrigerator and unload the cold items, then leave the rest.

    I have done one other thing many people would not do. Almost three years ago I moved into the back bedroom and left my TV watching all night husband and the lovely, scratching dog in the master bedroom to toss and turn all night. Sleeping solo works for me. No sound, light or movement, I also control the temperature back here. A good night sleep is worth my weight in gold.

    I have to be able to control my environment in one room in the house. It has become my sanctuary for reading, computer, and knitting. (I hate to lose count) Now to have this room redone i need to fix the floor from termite damage, new carpet, new paint, and the best part: I am putting french doors so I can walk directly into the back garden. I live in an urban area and do not always like to be exposed to everyone on the front porch.

    AND 15 minute mini rests help me too!

    I practice meditation twice a day, I lay down instead of properly sitting mostly.

    Thanks to all for sharing your tips

    love, Jesse's mom
     
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  12. WoolPippi

    WoolPippi Senior Member

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    I found that digestion cost me a lot of energy.

    I stopped all vegetables, brans, leafs, fruits and nuts. Instead I eat small portions of egg yokes (custard), cream, broth, yoghurt, white flour and body builder's proteins. Always with digestive aids such as HCL pills, digestive enzymes and bile supplement.

    Not only did I get more energy but also less air in my belly and better motility of the intestines.
    My GI dr. said people do not need fibre if the intestines function without them.
     
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  13. jesse's mom

    jesse's mom Senior Member

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    since I shared on this thread. I am staying in the main part of the house. i have had an upper respiratory infection from the adorable grandchild. That is my crack!!! I love babies. Babies and cats and ice cream... So I am constantly getting whatever virus is going around daycare. I was able to fight it off this time without a trip to the hospital... Good.

    I have been forced to gut and remodel my bedroom and bathroom. Construction seemed to be going so slowly until I got sick. The entire plumbing phase I have done with a low grade temp, sore throat, ear aches, heaaaadaches and all the features of our lovely illness.

    I am getting to the point that I a can see what my finished bedroom will be like. this room will certainly be a place I will be in for a lot... so it is important to me.

    So, following the thread... this is what I am doing to make changes right now.
    cheers
     
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  14. HeleneG

    HeleneG

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    I have a 2 story house I love. The bathroom is upstairs and the kitchen is downstairs. My knees and back were becoming unbearably painful, and added to my weakness and poor balance. After falling 3 times in one week, I put in a chairlift. It's big and ugly and quite expensive, but my knees are healing and I feel stronger in general. I'm very glad I did it.
     
  15. Marchesa

    Marchesa

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    @jesse's mom are you doing the work?

    This thread is what I came looking for and I have taken notes for things to try.

    I use a food and symptoms app, intolerance food diary, and a generic tracking app, nomie2, where I track my pills, pain, fatigue, and depression. That is, when I can remember.

    After more than 9 years of some pretty good days, many really bad days, I thought I had figured out all the triggers. In October I learned that folic acid caused that bone crushing fatigue most of us deal with to flare it's ugly head, from several days to nearly 2 weeks. Armed with this information I believed I would be better able to function as long as I was careful. (It's harder than finding gluten ingredients.) Unfortunately, I haven't experienced the return to the vibrancy of good days, as I expected. Instead I have a new kind of tired that I can't shake. While I'm thankful it's not the 'takes too much effort even to breathe' kind of tired, but it's been a really big emotional set-back for me. And, as we know, that doesn't help any.

    I feel bad complaining when I read how worse off others are, but at the same time it helps seeing the things you guys are doing to make it work. If anybody has any suggestions I should try that aren't in the previous comments, or want to emphasize previous comments, please share with me.
     
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  16. jesse's mom

    jesse's mom Senior Member

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    @Marchesa , no way am I doing the work I make the decisions.. hire a subcontractor.. ECT. That is a stretch for me
    I couldn't Do that work before I was sick! I was a hairdresser and salon owner from the age of 17 to about 47.
    These people are working in 80 degree heat and the room was torn out to the ground, and rebuilt.
    This week a closet will be framed and the drywall will go up.
    I really hope to be back in my room in a week and a half.

    Being in the main house is really exhausting for me. It is bright and loud. I have a husband and daughter who are active and lively. I do much better when I am in the back room. The sounds and lights coming off and on do not disturb me back there. It is an addition to the original house that was built in 1905.

    The problem now is stretching my savings to finish and furnish it.
     
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  17. Sundancer

    Sundancer Senior Member

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    you might search the forum for Potassium supplementing.
    It helped me a lot, some people around here are more knowledgeable, maybe someone chimes in and explains or points you to informative thread
     
    alkt likes this.
  18. jpcv

    jpcv Senior Member

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    Great thread !
    mid day rest helps a lot
    Also, I´m not ashamed anymore of calling for help when I need it. I don´t carry heavy things anymore and I don´t go to supermarkets anymore, I buy online most of products for the house and I only go to the store to buy goods like eggs, butter,vegetables, meat..
     
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  19. Marchesa

    Marchesa

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    @jesse's mom I asked because it sounded like you were. I have a friend who cannot sit upright for the two hours at meetings, but was tearing out the sheetrock in her house to repair it. She said it was taking a very long time, but it had to be done and she couldn't hire someone. I'm glad someone else is doing the work. Hope your sanctuary is done soon.

    @Sundancer I take a lot of suppliments, including potassium. I've actually been wondering if some sub ingredient in one of them could be the cause of this new tired, and I'm only now able to notice it. Idk. If, in the next few weeks I can't figure out what the cause is though adjusting diet, I'll try eliminating pills, or swap brands.

    But I will definitely look through the other threads about potassium. Thank you for the suggestion.
     
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  20. Sundancer

    Sundancer Senior Member

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    yes @Marchesa , it's an enormous puzzle, I'm fiddling around with sups too. Finding that I cannot handle something, trying something else. And it takes so much time to find out things.

    good luck, I really hope you find the source of it.
    I keep a book in which I scribble down things, and find it helpful, should have started that earlier but now that I do i find it's a help.
     
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