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How the heck DO you pace yourself?

Discussion in 'General Treatment' started by markielock, Apr 18, 2017.

  1. markielock

    markielock staying independent, one day at a time

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    Hi guys,

    Does anyone have any advice or resources regarding how to pace yourself? I've lived with this condition for 7 years and I have learned to cope (and how not to cope) with limited, fluctuating resources. However, I have never really found any good information about how to pace. If there's any good material out there that could improve or refine my current discipline, that would be amazing.

    Many thanks,

    Mark
     
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  2. Valentijn

    Valentijn Senior Member

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    @markielock - Mostly I keep track of what I'm doing, what I've done today, and how I'm feeling. I try to keep my periods of activity to 5 minutes or less, in every hour. And on some days I can handle less, so I cut out any non-essential activities. So a lot of consistency and scheduling for not exceeding my limits.

    A heart rate monitor is very useful for determining which activities you can tolerate, and for how long. Though symptoms still need to be listened to as well - immediate symptoms like muscle burning, weakness, trembling, or twitching, as well as knowing that an amount of activity will crash you in a day or so.

    Basically I try to keep my heart rate under 110, and stop an activity at 100 since it will keep climbing afterward. Some days (or weeks) I'm at 100 just sitting up, and that's when I need to do very little and lie down a lot. Once I learned my tolerance levels, I didn't have to use heart rate monitoring much anymore, primarily for showers and outings, as well as checking to see if it's the reason I feel awful.
     
  3. TiredSam

    TiredSam The wise nematode hibernates

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  4. charles shepherd

    charles shepherd Senior Member

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    Basic advice from the MEA on activity and energy management and pacing

    NB: Some of this advice and info only applies to the UK

    Activity and energy management, which should include physical, mental and emotional activity, has to take acount of the stage (ie how long you have been ill), severity, progress and variability of your illness.

    In other words, the type of activity and energy management programme you carry out has to be done on a very individual and flexible basis.

    The type of activity and energy management programme we recommend is a process called pacing - which is consistently reported by people with ME/CFS to be a very safe and helpful way of learning to cope with ME/CFS

    We have MEA information leaflets covering activity and energy management, and pacing, in more detail:

    Activity Management and Pacing leaflets:
    http://www.meassociation.org.uk/shop/management-leaflets/
    (Pacing leaflet is in the ME Connect section)

    It is also well worth reading the new MEA report on acceptability, efficacy and safety of CBT, GET and Pacing:
    http://www.meassociation.org.uk/how-you-can-help/fundraising-support/

    The other point I would make is that getting the right balance between rest and activity is often a do-it-yourself process involving trial and error

    However, it is extremely helpful to have some good initial advice on establishing an appropriate baseline of safe activity levels, along with how to gradually and flexibility increase what you are able to do - as well as cutting back when appropriate

    To do so you really need some help from a health professional - doctor, OT, physiotherapist - who fully understands the way to deal with this key aspect of ME/CFS management

    Have you been referred by your GP to a hospital-based ME/CFS service for more help on management?

    If not, this is something you could discuss with your GP

    There is a full list of ME/CFS hospital based services on the MEA website:
    http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/

    Along with a clear health warning about inappropriate exercise programmes…..

    There are also a few private services available who can provide good expert advice on activity management
    Eg - The Yorkshire Fatigue Clinic, which also takes NHS referrals:

    http://www.yorkshirefatigueclinic.co.uk

    And if you want something to show to a physiotherapist, or other health professional who is surpervising activity management but appears to be giving unhelpful or even harmful advice, this is an article from a professional journal for physiotherapists:

    http://www.meassociation.org.uk/201...-exercise-for-people-with-me-19-january-2011/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  5. charles shepherd

    charles shepherd Senior Member

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    Basic information on Pacing and Energy Management - from our MEA physiotherapist:

    More detailed information and guidance can be found in out MEA leaflets covering Pacing and Energy Management

    PACING AND ENERGY MANAGEMENT

    Prepared by Sue Mayes, Retired Physiotherapist and author of ‘Pacing for People with ME’


    Pacing is the balance we all strike between activity and rest. For people with ME it can make the difference between feeling fair or desperately ill.

    Activity can be physical, emotional or mental. Gain control of the illness, and your life, by learning to manage your energy. Learn new skills and exercise strong willpower.

    AIMS

    You are aiming to gain stability in the way you feel. Every day you should be feeling the same, possibly only fair, but certainly not good one day and terrible the next.

    BASELINE

    First find your baseline of activity levels, often even lower than you think. Drop your activity levels and increase your resting until every day is the same and you feel you have control. This can take some time.

    Keeping a pacing diary for a week can be helpful, but not for long. It is better to learn by listening to your body and being really honest about what you can cope with.

    ACTIVITY

    • When doing any activity, remember that the fatigue sometimes appears after a delay.
    • Recognise the feeling of ‘doing too much’ which is often not a feeling of tiredness. It can be that you feel stressed, anxious or that you lose concentration.
    • Do not fight the illness; stop the activity when your body tells you to.
    • All activities need to be done in manageable chunks, with short rests at intervals.
    • These principles should be applied to all your activities all the time.

    REST

    Resting is a skill to be learnt. You must give yourself permission to rest and not feel any guilt. Remember you are ill.

    There are different types of rest:

    • Complete rest when there is no outside stimulation. Shut the door.
    • Reading or watching the television.
    • Mini rests between chunks of an activity, such as ironing.

    It is possible to overdo the resting, particularly when you are fearful of doing too much and causing a relapse. Learn how to pace yourself and this anxiety will reduce.


    REVIEW YOUR PRIORITIES

    • Do not feel guilty. Remember you are ill; put yourself and your health first
    • Is the activity needed at all? Can you put it off? Learn to say no and learn to ask for help
    • Include things purely for enjoyment

    IMPROVING

    Once you have achieved a sustainable level of activity you will feel that you have control and your confidence will grow. You can increase your activities but only by tiny amounts.


    PROBLEMS


    • You may need to discuss symptoms with your doctor. If they are allowed to continue, they may stop you pacing successfully. Any new symptoms need to be reported to your doctor.
    • Always have a reserve of energy. Any unexpected demands need to be counter-balanced by removing something from your plan for the day.
    • Do not forget that tiredness and stiffness are a normal reaction to hard work. Do not panic and assume you are having a relapse. Continue to pace as usual.

    RELAPSES

    • Pacing is a skill and you might misjudge things.
    • Drop your activity levels, but do not go back to the beginning unless really necessary.
    • Do not increase activity until you feel stable.
    • Learn from the experience.

    ENJOY YOUR LIFE!

    You need to accept that you are ill, but nevertheless you need some enjoyment. Your plan for the day should contain some activities that are there only for you. They should be a priority.
     
  6. purrsian

    purrsian Senior Member

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    I'm over ten years now and still struggle. I think it will always be hard, because you no sooner learn your current patterns then they go and change. I find I have times where I'm doing pretty well with the illness (headspace-wise) but as soon as there's a little bump in the road, I feel like I no longer have any ability to judge or manage what's going on and have to re-learn my new "normal".

    I think one of the most awful things about this illness is the fluctuating nature and corresponding lack of stability. A constant lack of stability in life is a pretty hard thing emotionally and I think it's why it's so common to go through the grieving stages over and over, always trying to get a handle on life but as soon as you do, everything changes on you again!

    It sucks, but at least we have resources like those posted above to re-read as needed. My biggest progress in the past few years has been learning to recognise the initial signs of overdoing it. The things like struggling with thought processes, hard to focus eyes, clamminess. The sooner you recognise the need to stop the better. The other thing has been recognising the signs of an overall bad day and then accepting that that day is a do nothing day. That is usually when my POTS is worse, as that's become a good indicator of my overall health. I use an app "chronic illness assistant" which I think has helped me recognise my symptoms and their severity much better. Rating things out of 10 gives you a good view on things, plus doing it multiple times in a day helps you assess patterns.
     
  7. markielock

    markielock staying independent, one day at a time

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    Wow, thank you everyone for such good advice and resources! @Valentijn, I hadn't considered measuring my heart rate before. I'll look in to this!

    @TiredSam: I had completely forgot about that site. Then again, I couldn't even remember my pin number earlier so I probably didn't stand much chance. Thanks a lot for helping me re-discover it.

    @charles shepherd: Once again, thank you for outlining what the MEA has to offer, I shall certainly digest all the info.Unfortunately I don't have a regular GP and this is something I sorely need to fix. My current doctor's surgery assigns doctors at random when making appointments so I need to find a private GP who has a understanding of my condition.

    @purrsian : Amen, I hadn't looked at it that way before but that's so true: our health ebbs and flows and the lack of stability makes it hard to measure what we can do because the rules tend to change frequently. I'm slowly learning to notice the signs too. They present their own challenges on finding a stable lifestyle but worth fighting to figure out (however slowly).

    Thanks for the wealth of information everyone. I'm going to slowly start going over it and see how I can apply it :)
     
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  8. Basilico

    Basilico Florida

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    @markielock , What I usually do when I wake up and am starting to feel less zombified is to make a list of things that I think I need to do or should do and things I want to do that day. I include everything, even things like 'take a shower'.

    Once I have my list, I prioritize what REALLY has to get done that day, whether it's an annoying chore or something enjoyable. With this illness, I think it's equally important to do things that are pleasurable, and I try to avoid only doing annoying things at the expense of doing anything pleasant.

    Very often, things that I think 'need to get done' are actually 'should get done', and depending on how much energy/time each thing will require, I choose the most important thing - that's what I do first. Many times I sacrifice doing things that are less important or can be done another day.

    Then, I stop to assess how I feel; am I losing steam? Am I tired or sore or losing brain power? If yes, I rest, and I don't attempt to do anything on my list until I start feeling better. Sometimes I only need to rest for 10 minutes, other days I need a few hours. Some days I can do everything on my list, other days I only accomplish that first thing.

    I think the keys to pacing are really about prioritizing, being realistic about what you can do, and constantly reassessing how you feel after you do each thing.
     
  9. Keela Too

    Keela Too Sally Burch

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    I've written a bit about pacing, and about using HR monitors on my blog. Check out the link to the index page in my signature line below. Might help a little. Mind you it's always easier knowing what you should do, than actually obeying your own advice... :p
     
  10. hellytheelephant

    hellytheelephant Senior Member

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  11. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Just repeating everyone here:

    I use a constant heart rate monitor (also stop at 100bpm). You can stop rest and restart jobs this way...putting my feet up brings my heart rate down faster so I can resume a job I've started.

    I have avoidance rules for things I know bring on PEM (lifting and carrying weights over 5kg, aerobic exercise of any sort, standing still for longer than 10 minutes)

    I have a symptom tracker on my phone, which I use to plan my day and track forward a bit into the week and monitor crashes

    I have a traditional A4 academic diary that I put my tasks for the day in to help prioritisation



    Heart rate monitor is the best tool I have.
     
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  12. Valentijn

    Valentijn Senior Member

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    This is a good point. We get so accustomed to pain, exhaustion, and other symptoms that we can be inadvertently ignoring it. Mindfulness can help a lot, as I mentally go over my whole body and pay attention to what each bit is experiencing. Then if there's a problem, such as arms sore from scrubbing something, I know to ease off on them, or to lie down if having cognitive symptoms, etc.

    Of course, that requires us to remember to be mindful, when dealing with cognitive dysfunction :rolleyes:
     

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