Activity diaries

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 ?

 

You might find this thread to be of interest:

https://s4me.info/threads/stanford-me-cfs-initiative-pem-avoidance-toolkit.2054

 

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.

 

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

 

I never started one. Takes to much time and energy. I had more important things to do.

 

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

 

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.

 

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.

 

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.

 

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.