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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"Play-Up & Lay-Up" not "Boom & Bust"

Discussion in 'Lifestyle Management' started by Keela Too, Sep 12, 2014.

  1. Keela Too

    Keela Too Sally Burch

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    Early in my ME encounter I was told to avoid "Boom and Bust" and to aim for day to day consistency.

    I was also given the advice:
    "Do only 60% of what you can sustain without producing symptoms".

    Now these two bits of advice are excellent, but not at all easy to achieve. After all, if I really DID do so little, as to never produce symptoms, then how would I know if I was starting to improve?

    I was thinking about this dilemma recently, and being a science teacher (prior to ME) I couldn't resist a few graphs to help me think all this through! Perhaps they'll help you too?

    http://sallyjustme.blogspot.co.uk/2014/09/play-up-and-lay-up.html

    Does this help?
     
  2. Martial

    Martial Senior Member

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    I like it :)
     
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  3. Revel

    Revel Senior Member

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    How clever! I can certainly relate to all of the graphs and I do think it would help the newbie to pacing grasp the concept more clearly.

    After years of resolutely following graph 4, I am now at the 'Play-Up and Lay-Up and Decline Anyway' stage.

    However, I think the addition of a 5th graph illustrating this unfortunate reality for some sufferers might be more discouraging than helpful. Always better to travel hopefully, as they say.

    I look forward to returning to graph 4!
     
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  4. Keela Too

    Keela Too Sally Burch

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    Awwww.... sorry to hear of your stuggles. It is not easy for any of us. And even with good pacing, real life sometimes encroaches on the best plans to pull us down no matter how careful we are.

    I had a virus in early July, and I haven't got back up to my level prior to that.... meh!

    Thanks for your comment....
     
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  5. ukxmrv

    ukxmrv Senior Member

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    It's OK if one has a baseline of little symptoms and isn't prey to constant viruses and infections. So it needs another graph intermixed that shows (as an example) all of December sick with a flu and then all of January recovering to the November baseline. Then the same again at Easter and then a summer of a glandular fever type disease and so on over a year.
     
  6. Keela Too

    Keela Too Sally Burch

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    Yes - many permutations I guess. In the end I went with my experience of having never fully recovered lost ground....

    I did mention viruses as another spanner in the works.

    I fully recognise that the whole thing looks much more fine and dandy drawn as pretty graphs, than the reality of invisible and sometimes somewhat mobile boundaries between the levels.

    However as a basic concept, I thought the idea might be useful to some people. Certainly these are images I'd have liked to see early on in my illness to help me get my head around the sheer amount of down time I need.
     
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  7. BadBadBear

    BadBadBear Senior Member

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    I think if you plotted a pre-illness graph for most of us, and then put these on the same scale, they'd ALL look like pacing days comparatively!! :) I do tend toward the 'play up and lay up' pacing as I've gotten better since last year.

    The concept of pacing has been very helpful to me as I have been feeling better. There's such a huge amount of guilt for me involved in needing to rest all the time, it's good for me to understand that getting the daily rest HAS to be the pillar that everything else is built around or it all falls down again.
     
  8. Keela Too

    Keela Too Sally Burch

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    Yes... really rest is as you say a pillar on which everything we do must be built.

    I have to keep finding ways to keep myself still and relaxed. Best thing I've discovered recently is Audiobooks. And just like a book, I can pause it for a moment and rest a while (thinking nearly nothing for a bit ;) ) before listening on.
     
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  9. Revel

    Revel Senior Member

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    I second audiobooks. They have saved my sanity (such as it was in the first place :p). Not only have they been an invaluable tool with regard to pacing but also, depending upon the choice of saga and narrator, an unintentional aid to sleep!

    My cousin's girlfriend runs a Facebook book club, but I'm not allowed to join because, as she puts it, '"audiobooks isn't reading".

    She cannot comprehend how a book can be too much to hold, or that the mental exertion of processing the written word can be so draining (some days even audio is too much for my ears). Ironic that she is actually a nurse working in a respite centre for the chronically sick.

    What was it Groucho Marx said? "I refuse to join any club that would have me as a member".
     
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  10. Keela Too

    Keela Too Sally Burch

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    Just a quick thought, the Play Up and Lay Up concept, as I dreamt it up, is supposed to mean when you "play up" you have no payback. I suggest if you are still having declines after a Play Up moment, then sometimes you are actually (perhaps inadvertently) having Booms?

    Alternatively your ME has a wicked wild factor that lowers your boundaries randomly (like a virus does) meaning it is almost impossible to judge where the boundaries are!!

    This is why pacing can be so frustrating. Sometimes we can be so "good" and still loose out. The theories are all well and good, but not every-one's illness plays by the rules! LOL....

    Anyway, I think it is useful as a concept to aid strategy, even if we need to recognise that it is not always just like this in real life. xx
     
  11. Revel

    Revel Senior Member

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    @Keela Too over the decades my Pacing Zone has slowly fallen and each time I have adjusted my lifestyle accordingly to cope. Things remain relatively stable for a while and then it falls again. It never returns to previous levels no matter how much I try. Same goes for my weight, currently under 90lb - only lose it, never regain it.

    I am increasingly inclined to believe that whatever I have, since it's been with me from childhood, is more genetic than viral and that my body is slowly giving up the ghost, regardless of how I try to nurse it through this life.

    PS. I don't mean that last paragraph to sound morbid, just how it feels to me. I'm generally a happy soul at heart :-D.
     
    Last edited: Sep 14, 2014
  12. Keela Too

    Keela Too Sally Burch

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    @Revel I understand what you are saying. xx

    Some people seem to be able to "get away" with having quite severe crashes repeatedly and not loose ground. That has not been my experience, nor have I managed to regain lost ground - if I don't return to the previous "normal" within a few days, it seems I won't.

    So over a period of years, I can see how it is possible to be carefully pacing, but every now and then have a wild card mess things up and ratchet things down a notch....

    In my own case, I am perhaps not long enough ill to know if my trajectory is long term like this.

    I fully understand how you can be practically honest about what is happening to you, but also maintain being a "happy soul".

    Sending many good wishes, cyber ((hugs)), and hope that your illness trajectory will change its mind for the better in the near future. xx

    Thank you for your comments.
     
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