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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‘Managing chronic fatigue is all about pace — do not go for boom or bust’ | Dr Mark Porter

Discussion in 'General ME/CFS News' started by worldbackwards, Jan 27, 2016.

  1. Michelle

    Michelle Decennial ME/CFS patient

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    I just wanted to say how much I've appreciated the comments by @Richard7 @Skippa and others in this thread about the difficulties of pacing, especially when one lives alone. I've long used the same metaphor of treading water to describe pacing. Treatment it is not. Trying not drown until someone finally throws us a f*****g life preserver in the form of treatment it very much is.

    One of the things missing from the discussion (or barely touched on) is one of the parts I find the most challenging with regard to pacing: cognitive impairment. It will f*** up all my best laid plans, aspirations, and promises to my sterner self to do better. Tasks take so much longer because my brain moves so much slower. I'm constantly back and forth between the kitchen and the bedroom because I forget this, that or the other thing (I swear there is some cheeky pixie living in my apartment that moves stuff around just to screw with me!). I'm so easily distracted it can take 2 hours to get ready for bed because I've been wandering around my apartment watering plants or looking a book (thus expending energy I do. not. have.). My judgement is so impaired that I do things that my later, less fogged brain will wonder what the hell I was thinking. Added to that poor judgement is that even after 17 years, I often still only have a rough approximation of how hard a task will be ("well, it's only doing x, how hard can that be?" Answer: VERY). There is so little that has been quantified with this disease that so much of what we do is just guessing -- but with brains that are unable to handle such a complex cognitive task. And don't even get me started on how ill-disciplined I can be, particularly with regard to the internet.

    The other big one is sleep, as in, my sleep can vary wildly from day to day. One day I sleep for a straight 10-12 hours. Then the next three days I wake up after 4-6 hours and can't get back to sleep. Which I wouldn't mind necessarily if it would only just do it every day so that I could develop a routine. I've tried multiple times over the years of forcing myself to get up after 6 hours on the days when my body wants 10-12 but eventually I just end up horribly sleep deprived, making my PEM worse, which makes pacing impossible (where's your brilliant advice on that, Dr. Mark Porter? Hmmm?). And whoever up-thread said sleep hygiene was the most worthless advice is a damn genius.

    I use a heart rate monitor but can't do much of anything below a HR at 55% of estimated anaerobic threshold for a 43-year old adult without the damn thing beeping incessantly. I also use a pedometer and know I can do about 500 steps a day without an increase in symptoms. Trying to practice mindfulness has helped -- indeed it was how I identified cognitive problems and sleep as the primary reasons pacing wasn't working so well for me. I've also tried to limit decision making as much as possible (though it's not nearly as much as I'd wish for) with things like parental controls on my computer, check lists, etc. I've made some headway but increasingly the realistic part of me is trying to convince my inner idealist that pacing has limits. Big limits. At the end of the day, we need a better understanding of this disease and a real damn treatment already.

    (Sorry if this is taking the thread too off-topic!)
     
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  2. soti

    soti Senior Member

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    Thanks for that great post Michelle. I hate how our illness precludes routine.

    This also comes up a lot in the productivity stuff online... discipline, habits, rituals, routines. So what are we supposed to do?

    Someday if I have energy I'd love to put together a book for mild-to-moderately affected people, collecting insights like yours about how to redefine "productivity" in the face of an illness where one is not necessarily always bedbound, but can't depend on one's body. Lots of expectation management and kindness (all of which of course requires cognitive function...:( )
     
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  3. worldbackwards

    worldbackwards A unique snowflake

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    You aren't telling me something I don't know. :cool:
     
  4. hellytheelephant

    hellytheelephant Senior Member

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    Thank you - you have put into words what I would have struggled to articulate re pacing. On a bad day it strikes me as an invention to get patients out of the Doctor's office...and on a good day, something that would be work if only the whole world ( phone calls, weather, infections, life events, other people etc) was under my autonomous control!
     
    Mel9, JaimeS and Skippa like this.
  5. Michelle

    Michelle Decennial ME/CFS patient

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    Portland, OR
    And yet...I keep coming back to pacing. Keep promising myself each week that this will be the week I Do Better. I realized today it's because it's the only thing about this disease over which I feel like I have any control. If I can just pace better I can have some tiny bit of control.

    Yes, I think "expectation management" is precisely what we need -- all of us. Clinicians included. I had one who kept asking me about how to raise my exercise tolerance even after I explained about 2-day CPET tests et. al. I realize in hindsight I should have said "you don't." Because that's the whole effing point of this disease. Sometimes I think that's what separates biomedical approaches to this disease and the psychogenic school. The biomedical school acknowledges the limits while the psychogenic school simply won't. Shall we call them the "physiological limits deniers?" ;-)
     

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