How do you manage monitoring

I used to have a Fitbit and for a while I was doing the free version of visible app. I’m thinking of doing the paid version of visible but I keep forgetting to find out if it covers sleep monitoring yet. I’m not very good at anything that needs conscious input. I can’t maintain a routine of filing paperwork, counting calories or keeping a food diary either nothing to do with having ME/CFS just my brain doesn’t do that stuff routinely without forcing it so I just let it slide.

I would like to see if I can get some evidence of my sleep patterns and how that affects ME/CFS to see if I can use it to get a discussion with a Dr about it.
 
What works for me: Minimal monitoring. Regular rests. Lots of pacing. No tech.

I have a morning rest (an hour), an afternoon rest (2ish hours), an evening rest before shower (30 mins), and a rest after shower (20 mins).

Until I figured that out, things were harder.

At night I briefly note anything notable for that day in a paper diary e.g. pain ↑, cog ↓, "blood test at home", "started [drug] X". That's it. It just helps me notice big things over time.
 
Evergreen said:
What works for me: Minimal monitoring. Regular rests. Lots of pacing. No tech.
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Much the same, except that it's no monitoring. No fixed routine, I take breaks as and when I need them. Some days it's resting for much of the time; other days it's less.

I wouldn't use limited capacity filling in diaries or scoring symptoms unless I'd agreed to do it as part of a trial, and I'm definitely not giving away data to tech companies (other than what's unavoidable).

I have been ill a long time, though, so fairly experienced. I'm also retired and can use a lot of my time any way I choose.
 
NelliePledge said:
I used to have a Fitbit and for a while I was doing the free version of visible app. I’m thinking of doing the paid version of visible but I keep forgetting to find out if it covers sleep monitoring yet. I’m not very good at anything that needs conscious input. I can’t maintain a routine of filing paperwork, counting calories or keeping a food diary either nothing to do with having ME/CFS just my brain doesn’t do that stuff routinely without forcing it so I just let it slide.

I would like to see if I can get some evidence of my sleep patterns and how that affects ME/CFS to see if I can use it to get a discussion with a Dr about it.
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Visible just rolled out basing the morning check in on the nighttime HRV and HR. Is that what you're after?

I find the Oura ring excellent for sleep tracking, as you can view a plot of HR and HRV through the night (rather than one averaged figure). However, i was fortunate to already have one before the subscription model was rolled out, which meant that I don't have to pay the monthly fee. I'm not sure I'd pay for that and Visible. If I had to choose between the two I'd go with Visible (the subscription one) as the live HR tracking and pace point approach has helped make a significant difference to my pacing (even with 8yrs previous experience!).
 
NelliePledge said:
I used to have a Fitbit and for a while I was doing the free version of visible app. I’m thinking of doing the paid version of visible but I keep forgetting to find out if it covers sleep monitoring yet. I’m not very good at anything that needs conscious input. I can’t maintain a routine of filing paperwork, counting calories or keeping a food diary either nothing to do with having ME/CFS just my brain doesn’t do that stuff routinely without forcing it so I just let it slide.

I would like to see if I can get some evidence of my sleep patterns and how that affects ME/CFS to see if I can use it to get a discussion with a Dr about it.
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Thanks
 
Hello, this might have been discussed, I haven't been around the forum for a while.

I've had a Garmin watch for 5 years. I found it frustrating. So much data but useless and unreadable. A record of what's happened when I want a predictor of what might happen. I have faith in the watch, while it may not be 100% accurate it's a steady record of indicators. My life doesn't vary much. I'm housebound.

I took an discounted offer of AI. I downloaded all the data from the watch. Ran it through AL. It's absolutely fascinating. I only need to ask a question and within a minute it gives me analysis I can understand. It's brilliant. I started a medication that made a difference. I asked for the date my condition may have changed and it gave me the day I started the medication 2 years ago.

I now know that an elevated resting HR for 2 days precedes a crash. Steps aren't a factor. The length of the crash etc. There's lots to look into.

I'm not trying to persuade anyone but hope it might be interesting for anyone with data on a wearable.
 
kilfinnan said:
I now know that an elevated resting HR for 2 days precedes a crash.
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My heart rate's also elevated prior to and during a crash. I had several years of data showing it, and the long term trends also matched well with periods of reduced (or better) function overall.

It wasn't especially useful, as I'm moderately affected, I know when I've done enough to trigger PEM, and I plan for it with rest days. But it was interesting. I wondered if it's a phenomenon that happens in healthy people when they're tired, stressed or unwell, and it occurs in people with ME/CFS after much more trivial stressors?
 
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