Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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It's all about the pacing...

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by rahmama, Jul 28, 2015.

  1. rahmama

    rahmama But you don't look sick...

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    I've known for a long time that I need to pace myself because I'm goal driven and it's hard to stop me once I get going. But now I'm starting to think of pacing as part of my therapy and recovery. I could never get a handle on how to manifest a healthy pace because I lose track of time when I'm doing something I really love, like gardening. (a real PEM trigger!) I always push myself especially if I'm having a good day. I always pay for it later.

    The concept of breaking a large project into small pieces is not new to me, but I recently gave it a name. I think of things that require exertion in 15 minute increments. So when I go out to the garden, I'm the '15 minute gardener'. For this to work, I have to carry my phone on me and remember to set the timer. The hard part is committing to making myself stop when the timer rings. But I'm trying to be more accepting of my limitations and not fight it. Taking baby steps. Plan to stay at 15 minutes until I don't crash.

    This works for walks, house cleaning, standing in the kitchen, etc. Maybe one day I can do all these things for 20 minutes! :p

    Of course not everything fits into this concept. This morning I had 30 minutes of doctor-prescribed physical therapy and 30 minutes of grocery shopping. Even though I felt ok when I got home, I rested for about an hour, hoping the exertion-to-rest ratio will prevent a crash.

    Would love to know what others do in regard to pacing. How important is it in your life? How do you manage it?
     
  2. Hutan

    Hutan Senior Member

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    Sounds like a good plan @rahmama. And I understand that there are some things that just cannot be done in 15 minute blocks.

    But surely doctor prescribed physical therapy is one that can? If you think exertion of more than 15 minutes can cause PEM, why not limit your physical therapy to 15 minutes as well?

    I'm not good at pacing especially in my garden. I try not to do more than one 'extra' thing a day - grocery shopping counts as an 'extra' thing (although it normally takes me about an hour). I agree that resting after exertion can help prevent PEM although for me, the rest ratio has to be bigger than the 1 hour exertion to 1 hour rest that you mention.

    As well as the length of time of the activity blocks, the level of exertion and the level of your health on that particular day are factors to consider. That's why many here use a heart rate monitor and try to keep their heart rate below a certain level. For example, I find that if I can keep my heart rate below around 95 beats per minute, I don't have much of a problem with PEM from physical activity. I find I can do an hour or even two of slow work in the garden, with occasional rests to enjoy the view.
     
    Last edited: Jul 28, 2015
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  3. rahmama

    rahmama But you don't look sick...

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    Thanks for your feedback @Hutan. I am interested in trying the heart rate monitor as I've seen in mentioned here in several posts.
    Where can I get good information about using one for CFS. What kind? I have no experience with one.
    Thanks.
     
  4. butterfly7

    butterfly7

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    I cleaned my bird cage yest and went to help disadvantaged kids learn reading ,Im crashed today and Ive got to go get food etc ,going to have a mag bath ,what mag supp is the best for us creatures, I usually find all minerals and vits cause me pain.........help
     
  5. rahmama

    rahmama But you don't look sick...

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    Sorry to hear you're having a difficult day @butterfly7 It's so hard keeping ourselves in line with the limitations that CFS imposes on us. You never know how much is going to be too much. I volunteer at a local food shelf and two hours on my feet making up bags of groceries does me in for the rest of the day, if not more. I probably shouldn't be doing it but I can't bring myself to quit because they really need the help and I really believe in helping.

    Wish I could help you on the magnesium but with CFS there's no 'one size fits all' solution and I'm no expert. What is working for me is a powdered supplement called CALM by Natural Vitality. On their website is an excellent explanation of how magnesium and calcium interact at the cellular level. I've only been taking it a short while but it's helping relieve the pain in my legs and helping me sleep.

    I've never tried a magnesium bath. Hope tomorrow is a better day. :tulip:
     
  6. TiredSam

    TiredSam The wise nematode hibernates

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    That was my original plan, but now I've decided to forget all about expanding my energy envelope, if it happens it happens, but I never try and push it / test it now. This week my wife has her leg up following an op so I tried doing some shopping and a bit more in the kitchen - big mistake that has left me feeling rotten for a few days. And I mean one small shopping trip and maybe 20 minutes a couple of times in the kitchen. These are things I know I shouldn't do, and they have cost me a couple of days when I could have been productive / useful doing less physical things sitting down. Before this week I'd just had 2-3 weeks of minimal symptoms by staying in my envelope, but one small step outside can have a huge cost.

    That's a scary amount of physical activity. Is there any way you could help sitting down doing something less physical? I quite agree about helping, but not if it costs you your health and your ability to help in the future. I spend 6 hours a week teaching English to homeless teenagers, but it's something I can do sitting down, and I refuse to help moving tables around at the start and end of the lesson. I cancelled this week, which is very rare, but if I hadn't I wouldn't be much use at home or work to anyone else for the rest of the week. A few months ago I was going there to teach every week, exhausted and headachy or not, but I don't do that any more, I won't push through my symptoms for anyone now. Fortunately pacing has helped me so much in the past months that I've been up to going every week and haven't had to cancel until this week anyway.

    I'm a huge fan of pacing, I really learnt all about it in detail here:

    http://www.cfidsselfhelp.org/

    There's a large library of articles to read, including one on heart-rate monitors here:

    http://www.cfidsselfhelp.org/librar...our-heart-rate-to-stay-inside-energy-envelope

    You can buy the book or just read it all online, or even join an online course.

    I think many people on PR will tell you that they wish they had slowed down more when they still had a lot of functionality. There is the view that if you keep pushing yourself and crashing, it can have a long-term cumulative effect on your recovery prospects and make it very difficult to get back to where you were.

    Best of luck to you anyway. I think pacing has made a huge difference to my life, I can't recommend it highly enough.
     
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  7. butterfly7

    butterfly7

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    Hi Rahmama, Thankyou, I may try it Ive spent alot of money on different supps and they usually always just hurt, had food intolerance all my life and now live off 10 foods , can only eat green beans cooked and a small handful iceberg lettuce sometimes , i guess im getting some c as im still going ,every other live food causes me much pain (salicylates ) I am amines too so only have eggs as protein , anyway its all good ,had this cfs for 4 months and at first so sad and angry ,used to be able to walk ,swim ,just live normally basically ,now its like im about 85 no offence to anyone ,should see me in the local shopping center , i used to care how i looked now its just comfort and getting home although i do try to cheer up and look nice occasionally ,i just cant do much ,so im learning about this pacing , thanks for the well wishes and i know what you mean about the charity work it really lifts the spirit, God bless you........with good health
     
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  8. butterfly7

    butterfly7

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    Hey Tired Sam I will look at the link on pacing ,I feel alot like you do ,at first i didnt know what it was and tried to keep going my whole body felt like lead ,,Thankyou for the info :)
     
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  9. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Are you anywhere near a good ME/CFS specialist? Those who get treatment early appear to have a much better chance at remission/recovery.
     
  10. Valentijn

    Valentijn Senior Member

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    I hate chest straps, so I went with a Mio Alpha. Older wrist units can be inaccurate due to arm movement interfering with the readings, but the Mio Alpha has a motion sensor to compensate for that. It's a bit expensive, around US$200 or 160 euros. But easy to use, and has a lot of functionality, most of which I don't use :p

    What is the goal and content of your physical therapy?
     
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  11. butterfly7

    butterfly7

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    Hi little Blue stem,Im off to see a gp that has special interest in it early august ,have been taking homeopathics also,they say it can take 12mths with that,my poor mum has had it 12yrs ,she had the mozzie influence ,dont know if that is true for me yet too ,man can barely type have to leave it there ,thanks for the interest
     
  12. WoolPippi

    WoolPippi Senior Member

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    thank you for these words. They hold much truth. Your body needs regular time slots to take a breath, fight some bugs, reorganize blood pressure and all the things that go on automatic in a healthy body. Our ill bodies need a break from outside influence and from being upright to do the same things. It's the only way it gets some reserves to fight the actual illness. When we push it or when we crash it's been robbed of these reserves.

    The pacing itself feels counterintuitive: stopping while you still feel good. But it's the most important thing. It's the only way to get things done during an entire day. And be able to do something tomorrow. To keep the reserves in the plus.
    Pre-emptive resting is hard too: resting while you feel good. But it's also important.

    So both from a recovery point of view and of a daily life management point of view I feel pacing is of the utmost importance.

    I'm a 15 min gardner too but without a clock. I've made this pact with myself: as soon as the thought of a rest springs in my mind I stop and go rest. No questions, no weighing of the possibilities. If I think it I do it. It's not the thought "I need a rest" but the mere mind wandering away from the weeding at hand. That's my cue.
    Sometimes it's 5 minutes, sometimes 20. Never more it seems. I can now go out and weed 3 times a day because of this :)

    Also, I pace by the clock. I take stock at 9 - 12 - 15 - 18 and 21 o'clock to check whether I took my pills, took my food, had a wee (I forget to do so), brushed my teeth and had my rests. I rest when I need to but these clock-checks insure that I never forget to do so.
    I have a friendly wooden clock on my wall that I check.
     
    Last edited: Jul 29, 2015
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  13. TiredSam

    TiredSam The wise nematode hibernates

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    I was thinking of getting one. Do you have the Mio Alpha 1 or 2? Can you have the display on time, with the HRM running in the background and peeping when you go outside the limits? Some of the amazon reviews seem to suggest that when you change to time display, the HRM turns off. How often does it need recharging? My pulse goes from 54 to 120 when I stand up from sitting, so it would be a good reminder for getting into better habits when I stand up, go upstairs etc.
     
  14. WoolPippi

    WoolPippi Senior Member

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  15. worldbackwards

    worldbackwards A unique snowflake

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    My experience of pacing comes largely from being severely affected, which puts strict limits on things. I found that the safest way to do things was to split them up in to small sections, usually between 15 minutes and half an hour, though sometimes less if I'm experimenting with a new activity, and then swap to something different, preferably alternating active stuff with something more passive like watching TV.

    If you're more ill, it's best to do the passive stuff lying down and/or have a rest between activities where you're doing absolutely nothing. It's also a good idea to swap around the kind of active stuff you do, so maybe you do something sat up, then lie down a bit, then have a short walk is possible, etc. I've found that the need to order stuff like this gets less imperative as I improve, but it still needs to be done to an extent - I need both physical and cognitive rest.

    If possible, it's best to keep to a routine most day, so you can see clearly what influences symptoms when you change activities. Obviously, this won't be possible every day, but the more this can be done, the easier it become to see what causes problems and what you might need to leave out. Also, if you're feeling better and try to increase something, it helps with being able to see the effect this has had and whether you are coping with the extra activity or not.

    If I go outside this routine, particularly if I have to do something that I know from experience will make me more ill, then I have a good long rest, an hour or so, both before and after and then get on with things. This eases off any reaction in the aftermath, though it doesn't stop it completely by any means.

    Pacing is vastly important to me - it makes it easy for me to keep track of what I'm able to do and, as I am improving, provides a framework within which to move forward whilst I am still very restricted. Sorry for rattling on but I haven't really got much else to be doing. And you did ask.

    Finally, you've missed the opportunity for a Megan Trainor reference here: it's all about that pace...
     
    Last edited: Jul 30, 2015
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  16. Mij

    Mij Senior Member

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    I *try* not to judge by how I'm feeling. I'm definitely a clock watcher too.
     
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  17. rahmama

    rahmama But you don't look sick...

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    [QUOTE="
    Also, I pace by the clock. I take stock at 9 - 12 - 15 - 18 and 21 o'clock to check whether I took my pills, took my food, had a wee (I forget to do so), brushed my teeth and had my rests. I rest when I need to but these clock-checks insure that I never forget to do so.
    I have a friendly wooden clock on my wall that I check.[/QUOTE]

    This is a great idea, taking stock at regular times. There are so many things my body requires to stay balanced. It's pretty easy to stay tuned in when I'm home and can keep a regular routine. Traveling, which I've been doing lately, is particularly challenging. No one else wants to live on my schedule. :p
    I just try to do the best I can and maintain a positive outlook even when I crash. Not always successful when I feel like I'm sinking into a pit of quicksand. :rolleyes:
     
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  18. rahmama

    rahmama But you don't look sick...

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    I appreciate your feedback and perspective @TiredSam Thanks for encouraging me to rethink this. I was willing to break my own rules when it comes to volunteering...:( But I just sent out a email to this volunteer group and requested a sit down job rather than quit. Request has already been accepted. Yeah! I feel better already. :thumbsup:
    Have a good restful day.
     
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  19. rahmama

    rahmama But you don't look sick...

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    I did ask and loved reading about your pacing experience. I've only been on this forum for a few days and feel like I've learned a lot already. Having contact with other CFS sufferers has been very rewarding. No one, not even those who love me most, 'get it'. And I'm sure it's boring to non-CFSers to hear about how tired I am. :p
     
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  20. butterfly7

    butterfly7

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    Goodmorning fellow pacers glad i logged on ,so much id like to do today ,but i see i need to leave some for tommorrow and get the priorties today ,talk about delayed gratification, lol, well i hope everyones day is reasonable with the hope of some joy and wonder and happiness also...:D
     
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