Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

[MrMagoo]

Thanks MrMagoo. I think I did in fact properly understand that, but thank you for clarifying. My confusion is that the daily score seems rather random, and though I guide myself using it, and pace correctly, the outcome for the next day seems just as likely to be worse, equal or the same, when I would hope for equal or the same. It's still confusing. Perhaps it will stabilise a bit.



Yes, that's what was explained to me. You simply consume pace points four times faster when in "over exertion" compared to "activity" and that's what I find counterintuitive. So when I was walking with my son yesterday and I was unable to get out of "over exertion" however slow I walked (as we were on a slight incline), the best thing to do would have been to have speed walked for 5 minutes (or best I could do) rather than walked slowly for 10 minutes which would have used twice as many points. That way, though I would be more exhausted, I would have used half as many Pace Points reaching our destination. Walking slowly by still over the limit is implied to be tougher on me for banked PEM, than hurrying up.

But there is a real flip side which I've noticed which probably compensates for this. When over exerting significantly, I've noticed that it can take an hour or more for me to return to anywhere near the same heart rate I was before pushing myself, and if it really is extreme, I may never enter rest again on that day, so perhaps that's how you do end up consuming the "saved" points (by speeding up) and the argument is academic.



That's brilliant thanks, apart from the enormous guilt and embarrassment I'm now feeling over the 25 Pace point budget I've set for myself (I felt the 20 recommended was unworkable for me to start with), compared to the 3.7 that the person writing that article was constrained to use. I guess that's the difference between mild to moderate ME/CFS and somewhat more severe, which makes me feel very humble.

I personally took the view that in general with any objective feedback, it is better to feel that you are succeeding when you are trying to rather than failing all of the time. I can see many on this chat who just report that they are constantly over budget, and once you accept that being over budget is inevitable, there's probably less motivational incentive to keep within your goal, analogous to sticking with any kind of diet!

Well, yes as you’ve discovered, once you’re in the red it takes time to get back out of it, stopping what you’re doing isn’t enough as the heart rate needs to drop.
Comparing points is a zero-sum game, I’m on 90 per day and I’m moderate, I am working on ways to stay closer to my budget but it isn’t easy. I’m also going to ask to be investigated for POTS.

 

[LJord]

Well I go through periods where I am endlessly over budget but currently have managed to stay under some days alot under others barely. And yet continue to get worse. What I am not doing is crashing. I look forward to seeing what the research shows given that there is so much data coming in from this monitoring. What I haven’t found is that the HRV is predictive of anything for me. I did want magic from this and once I gave that up I have found this useful in helping me not push myself into PEM.

 

[Daisy]

@SteveFifield I don't know if you saw this in the Visible app but there is a bit more information on the impact and intensity of tagged activities.

On the HR graph screen tap Activity Insights and you can toggle between Impact / Intensity of tagged activities.

If you tap the information at the top RHS of the screen there is a blog post on Activity Insights.

One way to assess how well you are pacing your activities is by keeping an eye on what your heart rate does afterwards. That's one of the reasons why it's a good idea to know what your RHR is.

If you can undertake an activity, and when you stop and rest afterwards, your heart rate returns to resting heart rate within a couple of minutes, then it is less likely you have exerted beyond your personal limits.

But as you mentioned in your previous post, if you are active beyond your personal limits your resting heart rate increases. What I found is that it usually increases for the rest of the day (and into the next day or more depending on the level of exertion). This means that each additional activity more quickly pushes into exertion beyond personal limits, making pacing even more challenging. This is even though, all things being equal, that particular activity wouldn't normally push you into exertion beyond personal limits.

And of course there is the cumulative impact of exertions all of which may be within personal limits but cumulatively are not.

Pacing is more of an art than a science, there are many variables and moving targets. But tech such as Garminb/ Fitbit etc and Visible can be very useful tools.

 

[NelliePledge]

Interesting. I’ve been doing the free visible for a few months including the fun cap as well. I’ve tended to ignore the daily morning score a I felt it wasn’t picking up my fluctuations promptly enough - more of a lag telling me I’m worse the day after. I’ve been a bit busy this week and keeping up with the inquest and the emotional impact has all been draining. Today is the first day of feeling PEM and the HRV has clearly reflected that and the stability score is 1 (I usually get 2). Now this follows a few days of scoring 4 whereas I’m more normally at 3 So is it the case that the App copes better with picking up bigger fluctuations. Sorry I’m rambling a bit here.

 

[Eleanor]

I've been using Visible for a few weeks and I'm pleased with it as a pacing aid.

However I've been trying the 'coherent breathing' feature the last few days and finding it makes me feel worse; it also lowers my HRV, when the advertised purpose is to raise it. Today I scrolled through the 'About coherent breathing' page, and right at the bottom there's a 'Safety note' saying that if your 'Monthly check-in' (FUNCAP) score is 2 or lower you should try coherent breathing for no more than 2 minutes and only increase from there 'if you feel able to'. I think this advice should be more prominent!

 

[SteveFifield]

I've been using Visible for a few weeks and I'm pleased with it as a pacing aid.

However I've been trying the 'coherent breathing' feature the last few days and finding it makes me feel worse; it also lowers my HRV, when the advertised purpose is to raise it. Today I scrolled through the 'About coherent breathing' page, and right at the bottom there's a 'Safety note' saying that if your 'Monthly check-in' (FUNCAP) score is 2 or lower you should try coherent breathing for no more than 2 minutes and only increase from there 'if you feel able to'. I think this advice should be more prominent!

I’m inclined to agree as otherwise it becomes one of your day’s dominant activities, surely?
Might be worth using the Visible Profile->Send Us A Message feature if you feel up to it. If not, I would be happy to do that for you

 

[Eleanor]

I’m inclined to agree as otherwise it becomes one of your day’s dominant activities, surely?
Might be worth using the Visible Profile->Send Us A Message feature if you feel up to it. If not, I would be happy to do that for you

I've done that, but thank you for offering! Got a reply saying they would raise it at the weekly meeting where they discuss user feedback.

 

[Trish]

What is coherent breathing?

 

[Eleanor]

Just deep, regular breathing basically! There's a feature on the app to guide you in doing it. Plus some blurb about its supposed benefits.

 

[MrMagoo]

It’s just a few minutes of deep breath in and out. Mine broke ages ago, but it did relax me. Brought my heart rate down.

 

[LJord]

I gave up on the coherent breathing. Separate from any readings it is exhausting.

 

[bobbler]

Moved posts

I’ve ordered visible - is there any thread on advice on using this? I’ve avoided getting it before as I struggle with the work of setting things up and want to start small on what I measure whilst I learn how it works because I can’t do a lot of filling in

I’d like to ask questions about what to choose to measure as I’ve noticed at the moment a strange hr thing where when I’ve been moving about ny blood pressure is high for me but heart rate low, then when I rest in zero gravity the reverse - blood pressure drops but the heart rate goes up.

I’ve never had any idea what to select re POTS because I get a lot of needing to lie flat etc and for a long time can’t stand long etc but I don’t think it is actually pots but may other OI.

And I don’t know what the arm band can measure or what patterns it might give etc

 

[MrMagoo]

I’ve ordered visible - is there any thread on advice on using this? I’ve avoided getting it before as I struggle with the work of setting things up and want to start small on what I measure whilst I learn how it works because I can’t do a lot of filling in

I’d like to ask questions about what to choose to measure as I’ve noticed at the moment a strange hr thing where when I’ve been moving about ny blood pressure is high for me but heart rate low, then when I rest in zero gravity the reverse - blood pressure drops but the heart rate goes up.

I’ve never had any idea what to select re POTS because I get a lot of needing to lie flat etc and for a long time can’t stand long etc but I don’t think it is actually pots but may other OI.

And I don’t know what the arm band can measure or what patterns it might give etc

Hi

There is a visible thread but it’s not very active, I’ll have to look for it.

Personally, I like Visible I find it user-friendly.

You can do the morning check-in which gives you a score based on your HRV trend. Although, you don’t have to do this if you don’t want to.

You can see on a graph where you are resting, exerting or over-exerting, in real time if you want, or just review it when you feel able.

You can set up an alarm to text you when you have spent x minutes in “overexertion” if you want.

You can tag your activities on this chart, if you want. I don’t really bother all the time, but every few months I do it to see how taxing a shower/bath is, hoovering, etc.

I also made a point of adding tags on days I was working on my PIP as useful evidence of the impact that has on me.

They also have a Facebook group but I found it annoying, constant essays on whether it’s worth starting visible, or not being happy at how many points activities use etc look at several pics of me and my chart. Light on Visible info, heavy on chatter.

 

[MrMagoo]

I had a look back and a lot of that thread is from when it was first set up. It’s developed since then and things might have changed.

Personally I don’t like the “prescriptive” vibe some people have. Visible is a tool, it’s there if I need it, I can’t sweat the small stuff. It’s not my master, I don’t let it “dominate” everything I do.

Most days I fill in the end of day check-in. Sometimes I can’t be bothered. I like having months worth of data where I can look back and see how many migraines I had, or crashes. I actually surprised a GP once as I was asked about migraine frequency and I pulled up the info right there - 16 in the past year!

I’ve also showed it to medics (and others) in real-time to show I’m overexerting since I got ready for this appointment, let alone travelling here and sitting now talking. Very effective! Look at that red warning block!

I like having the FUNCAP every month and the data of that stored.
The monthly health report I download but don’t really use it, just keep it for posterity.

Here is me today, I’ve been doing housework on and off since I got up.