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Activity diaries

Discussion in 'Monitoring and pacing' started by Simon, Jan 24, 2018.

  1. Simon

    Simon Established Member (Voting Rights)

    Does anyone else use one? I've been doing mine for two years now, and I'm starting to wonder if it helps or not... Any thoughts out there ?
    Rosie, Trish, Joh and 4 others like this.
  2. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Simon, petrichor, Joh and 2 others like this.
  3. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    To be honest I didn't find keeping one very helpful.

    I found that I was focussing on symptoms all the time and ended up not enjoying the small things I could manage as I was always was thing the clock.

    Admittedly mine was more comprehensive -like the toolkit in the link in the most above.
    Alison, Rosie, Trish and 6 others like this.
  4. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

    I had to keep one to help with my ESA application, I managed 4 days then ran out of energy!
    If you've kept it up for two years and not got anything worthwhile out of it I think you deserve a day off at the very least ;)
    MEMarge, Alison, Simon and 7 others like this.
  5. lansbergen

    lansbergen Senior Member (Voting Rights)

    I never started one. Takes to much time and energy. I had more important things to do.
    Simon, Rosie, Trish and 4 others like this.
  6. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    I did one for the CFS clinic as part of the pacing stuff. It was extremely cumbersome so I transferred to a symptom tracker (sort of as a predictor of how I'm doing that I feel in at the end of the day) and Fitbit heart rate monitor for the activity. Much quicker and easier
    MEMarge, Alison, Simon and 6 others like this.
  7. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    I keep a diary so I can space out appointments/activity over a week allowing some days in between activities. I break chores down into chunks with resting in between but I dont get any value out of trying to plan exactly what to do when in a day at least that way quiet days aren’t all the same. I go by how I feel as to how much I do and when. Apart from trying to stick to 16:8 eating pattern I don’t have a structure.

    Edited to add I have mild/moderate ME and can usually get out of the house under my own steam a couple of times a week. I do my own chores apart from having cleaners every fortnight and my shopping delivered.
    Last edited: Jan 24, 2018
    MEMarge, Alison, Simon and 6 others like this.
  8. Ravn

    Ravn Senior Member (Voting Rights)

    Aotearoa New Zealand
    Always try to keep one 2-3 weeks before going to the doctor, to have some data to show. But that's more than enough, too much work and too much focus on symptoms (I subscribe to the philosophy of ignoring what can be ignored, there are plenty of impossible to ignore symptoms without focussing on the lesser ones as well), plus too little useful data to make it worthwhile.

    Sticking to a safe routine as much as possible and using a heart rate monitor to warn me of overexertion when departing from the safe routine works better for me.
    MEMarge, Alison, Simon and 5 others like this.
  9. Esther12

    Esther12 Senior Member (Voting Rights)

    I found them to be a total waste of time. Only did it because I was told it would be useful, and now I'm surprised I ever bothered.
    Alison, Valentijn, Simon and 4 others like this.
  10. Trish

    Trish Moderator Staff Member

    I've tried several times and given up within 24 hours. Far too much effort. And I wouldn't really know what to do with it.

    For the last few months I've been doing a symptom spreadsheet of my own devising, including a daily record of resting heart rate and steps. It's one line per day with a dozen columns to put scores in. I fill it in first thing in the morning and forget it for the rest of the day. I think it's helping me get a clearer picture of what's going on and when I need to try to do even less than my very little daily activity.
  11. TiredSam

    TiredSam Moderator Staff Member

    I've been keeping one for about 2 years, I still fill it in every day out of habit. Really easy and simple. It has helped me to define a rank order of activities and how long I can safely spend on each one (shopping, kitchen work, playing music, and walking are things I don't do at all any more, but can manage 10-20 minutes if I have to, sitting at computer 40 minutes once a day if I'm lucky). I have a list of about 17 activities ranked in order of energy consumption, although most of them are things I don't do any more. I have recorded every day with a headache for the last 2 years, and by looking at what I was doing on the previous day I have managed to make a few connections. Tracking how I work (about 15 hours) over the week with symptoms has helped me spread it out to avoid PEM too.

    I still fill it in every day just out of habit, but the only number I really pay attention to is the overall symptom level for the day. I have internalised the rest, so for a few months at the beginning it was really useful to find out what my limits were. I also somewhat foolishly hoped I would be able to come up with some kind of algorithm if I tracked enough variables for long enough, but that never happened. It's nice to see how the number of days lost to headaches per month has decreased.
    Last edited: Jan 28, 2018
  12. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    No matter how I pace my underlying condition is unstable.

    Assuming we have energy available is small blocks or units (spoons if you will):

    A task that takes 1 unit of energy on a given day might take 5 units another day.

    Time of month, ambient temperature, levels of background noise among a whole load of other things all affect how much energy is required.

    Ironically, it was actually a physio who enlightened me that it wasn't that I wasnt doing it properly, but that maybe this type of tool wasn't really up to the job and I really needed to listen to my body instead of focussing too much on a form.

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