Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Activity level - "time in bed"

Discussion in 'General ME/CFS Discussion' started by pibee, Dec 23, 2017.

  1. pibee

    pibee Senior Member

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    I am confused about all activity level measures.

    Many mention time in bed, but I am confused does this mean absolutely no activity (no computer, talk, video, tv), real resting, or this means if you lay and do all of the mentioned?
    Because I have strong issue with orthostatic intolerance, whenever I can i spend time half laying.
    But I never really do nothing, I just do all computer work in half laying state.
    When I sit (usually out of house, in company etc) I dont feel problems but when alone i spend my time like on the photo.. but always "active" mentally.

    so does this count as being in bed? or people really mean.. doing nothing and being in bed?

    [​IMG]


    another issue is for example with dr Lerners activity levels. I'd fit 7 (able to work sedentary job, light housekeeping and socializing, also i'm able to do light sport (like dancing, skating), but i still need to lay down when on computer instead of sitting).. but i have big delayed sleep disorder, meaning i rarely wake up before noon, so this activity levels dont real take into consideration stuff like sleep disorders that are common in ME. So based on this EIPS, i have no idea where I fit.,..and if laying on the side while doing computer work counts as time in bed..
    I'd like to know to track my progress and get a better idea in general where i am..

    [​IMG]
     
    Last edited: Dec 23, 2017
  2. Learner1

    Learner1 Professional Patient

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    Pacific Northwest
    I find this scale difficult as well and have found it best to track my progress via:
    1. Hours of sleep in a 24 hour period, tracking hours at night, amount of waking at night, bedtime/waking time, and number, length, and timing of naps
    2. Ability to exercise - quantity and duration of weight lifting, quantity of steps, number of breaks/naps needed
    3. Cognitive functioning and ability to formulate and execute tasks, how big my backlog of undone, but important tasks is
    I can only work 10-17 hours a week, I can exercise some, but still spend a lot of time laying around. Feels like I'm more than a 3 on the scale - I consider myself 60-75% functional...

    Interested in other's views on this...
     
    Last edited: Dec 23, 2017
  3. CedarHome

    CedarHome

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    Maybe it's a logarithmic scale ;)

    I'm in the huge gap between 4 and 5 somewhere

    If I'm not super careful I get in Achievement Mind where I think... Hey last week I worked X hours/ walked Y steps and this week I "should" be able to do more. It's really hard not to think that way.
     
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  4. Learner1

    Learner1 Professional Patient

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    Pacific Northwest
    You may be on to something with that logarithmic scale!! It seems like a huge jump from 4 to 5 to me!!

    Its more like "What can I do today?" Two weeks ago, after I had an IV with NAD, I was able to briskly walk 3 1/2 miles without slowing down for going up hill. The next day, I was sleeping in a heap in the floor of a store by 10am... I take each day as it comes... :rolleyes:
     
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  5. SueJohnPat

    SueJohnPat Sue

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    Medford NJ
    It is hard to define for me also. I am very fortunate that I have improved greatly in the last 2 years. I had some OI issues ( still have trouble at times standing still waiting in long lines have to do a little dance). On this scale I would be a six or a seven. There is no way right now that I could work. Mainly due to my cognitive issues. I am/ was a pharmacist. I would probably do fine but after 3-4 hours on a shift I would get tired and start to lose it a little mentally some days especially if there is low barometric pressure in the winter months. I would be afraid I would kill somebody.

    I also get extremely clumsy. I shut the front door on my hand the other day after I had been out with my son for about 5 hours straight. I told everyone I was done for the day. My husband knows what that means. If I get tired I get foggy then I misplace my keys credit cards etc. and I just start screwing everything up and I retreat to the sofa.

    I want desperately to return to work , currently on Ssdi. I am 53 and worked 23 years as a community pharmacist.
    When I get tired I don’t have full blown crashes but I am very clumsy and have difficulty with conversations. Too much to pick up the phone and call friends etc. out of bed does not mean fully functioning to me.
     
    CedarHome, Mel9 and Learner1 like this.

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