Hello! Fitness tracker recommendations?

[SunnyK]

That sounds like quite hard work?

I think my strategy is the opposite, in that most of the time I don't think about it. I'm too taken up with other things. It's more the little feedback signals: did sitting down for a rest half an hour ago help? If it did, my back brain might prompt me to get up and do something else. If it didn't, it knows more sitting down is needed.

The decision-making isn't completely unconscious, but I don't spend much time focused on it. It'll come to the forefront when it strikes me that I felt really rough yesterday and today isn't any better, meaning I ought to check I've got enough slack in the schedule.

I'm also immensely skilled at not doing housework. It's probably one of my crowning achievements, in fact. I insist on my clothes and bedding, kitchen and bathroom being clean, but everything else can be postponed for as long as necessary. My late mum was an obsessive cleaner and my sister still is, and it was hard to get out of the mindset that somehow housework is a moral issue. Not only is it not, it can be a harmful habit; I was relieved when I managed to quit!

Yes, I tend to make everything into more of an ordeal than it needs to be. Last time I telehealthed with my ME specialist, she wanted to know my average fatigue, brain fog, and pain levels since I'd first seen her, and I figured it'd be helpful if I began keeping track of those. And I thought listing my symptoms and activities might give me some idea of what is doable and what wipes me out. But of course, what I can do changes day-to-day, especially if I'm in PEM. I like your approach of noting little feedback signals rather than obsessing about the whole thing. I just feel like I'm so new to this that I don't notice the feedback signals until they're screaming at me and it's too late, so I'm trying to find ways of getting feedback earlier on.

I, too, grew up with a cleaning-obsessed mom and like a clean house, but honestly over the past several years, the combination of being crippled from JRA and being exhausted has meant even our kitchen and bathroom haven't been very clean. However, my amazing mother-in-law gave me $ for my birthday to hire a cleaning person, so that is now one less thing constantly nagging at me! And yeah, housework should never be a moral issue, just as exercise one's weight, etc., shouldn't be.

 

[Kitty]

I just feel like I'm so new to this that I don't notice the feedback signals until they're screaming at me and it's too late, so I'm trying to find ways of getting feedback earlier on.

It is so hard, and few of us ever really get it right. But I think you do eventually develop a sense of which signals you have to pay attention to, which helps navigate it a bit better.

And I thought listing my symptoms and activities might give me some idea of what is doable and what wipes me out. But of course, what I can do changes day-to-day, especially if I'm in PEM....I just feel like I'm so new to this that I don't notice the feedback signals until they're screaming at me and it's too late, so I'm trying to find ways of getting feedback earlier on.

I tend more to think about how today has actually gone, so that I can plan what not to do tomorrow. I can't change the mistakes I made today, but I may be able to compensate for them a bit. It works both ways—sometimes today will have gone better than I expected, so I'll probably be fine to do something enjoyable tomorrow.

I don't really look at symptoms, as that'd be so inconsistent it wouldn't make any sense. It's more about how much overall function I had, and how evenly it was spread across the day. The lower the function or the more up-and-down the graph, the louder the warning bell.

What I never do is look at the reasons I felt terrible even though I hadn't overstretched my capacity, or why I woke up feeling fine even though I'd been out three times this week. In my experience, ME doesn't play by rules or make sense, and working on the assumption that I can understand or control it has never done much except leave me on my backside. All I can do is try to plan my schedule sensibly, and respond to what's actually happened by continually making adjustments.

 

[Hutan]

In my experience, ME doesn't play by rules or make sense, and working on the assumption that I can understand or control it has never done much except leave me on my backside. All I can do is try to plan my schedule sensibly, and respond to what's actually happened by continually making adjustments.

This is exactly why I get a bit annoyed with people who try to suggest that people with ME/CFS need a huge amount of education by health professionals in pacing or energy management. In reality, it's mostly muddling through, tweaking things as necessary.

Muddling through successfully requires that you have some flexibility to just stop when required, and, for most people new to ME/CFS, that's going to require some pretty major changes in employment, housing, relationships and living conditions. So, assistance with making decisions about those things and then making the necessary changes are what would actually be useful. But instead, if we get anything at all, it's micromanagement, with an imposed activity schedule and advice about sleep hygiene, typically banning naps or sleeping late, or complicated regimes with HRV.

 

[SunnyK]

It is so hard, and few of us ever really get it right. But I think you do eventually develop a sense of which signals you have to pay attention to, which helps navigate it a bit better.



I tend more to think about how today has actually gone, so that I can plan what not to do tomorrow. I can't change the mistakes I made today, but I may be able to compensate for them a bit. It works both ways—sometimes today will have gone better than I expected, so I'll probably be fine to do something enjoyable tomorrow.

I don't really look at symptoms, as that'd be so inconsistent it wouldn't make any sense. It's more about how much overall function I had, and how evenly it was spread across the day. The lower the function or the more up-and-down the graph, the louder the warning bell.

What I never do is look at the reasons I felt terrible even though I hadn't overstretched my capacity, or why I woke up feeling fine even though I'd been out three times this week. In my experience, ME doesn't play by rules or make sense, and working on the assumption that I can understand or control it has never done much except leave me on my backside. All I can do is try to plan my schedule sensibly, and respond to what's actually happened by continually making adjustments.

I like your approach, Kitty. Very wise. Thanks so much for sharing this.

 

[SunnyK]

This is exactly why I get a bit annoyed with people who try to suggest that people with ME/CFS need a huge amount of education by health professionals in pacing or energy management. In reality, it's mostly muddling through, tweaking things as necessary.

Muddling through successfully requires that you have some flexibility to just stop when required, and, for most people new to ME/CFS, that's going to require some pretty major changes in employment, housing, relationships and living conditions. So, assistance with making decisions about those things and then making the necessary changes are what would actually be useful. But instead, if we get anything at all, it's micromanagement, with an imposed activity schedule and advice about sleep hygiene, typically banning naps or sleeping late, or complicated regimes with HRV.

I at first felt so disappointed that monitoring my HR wasn't going to be the easy magic bullet for managing ME--but then, I never had any magic bullets for managing my unpredictable JRA growing up, either, so I should've known! But reading what you and @Kitty have said is actually very freeing. I have experience tuning into my body and using intuition and "muddling and tweaking"; I just need to reorient myself to apply it to these symptoms.

Thanks so much!

 

[Trish]

I have similar experience of finding trying to keep symptom and activity diaries and plan according to previous days is useless. My local ME clinic is very keen on getting people to keep hour by hour diaries to look for patterns of activity that trigger worse symptoms etc. I think some people find that helpful in the very early stages after ME diagnosis, before they are really aware of PEM, and can use it to try to reorganise their lives so that things that reliably trigger PEM, such as going to the gym, or energetic household cleaning, or standing in the shower can be cut out.

Once the most obvious triggers are reduced or removed, I think there's little benefit in continuing to keep detailed hour by hour diaries, and the fantasy of therapists who think we can reliably find our 'base level', make and stick to daily activity plans, and then even systematically gradually add activities, is revealed to be nonsense in the context of most people's real lives. Most of us need to just get by as well as we can, using pacing and resting where possible to reduce the chances of setting off PEM episodes.

I thought I was pacing fairly well once I gave up work, but I was still crashing for a few days or more about once a month. The thing that helped me reduce the frequency of crashes was step counts on my Fitbit. I realised pretty quickly that whenever my step count went over a certain level, I tended to crash. I deliberately cut back from hitting peaks of about 2500 to 3000 steps to half that, and the frequency of crashes reduced.

Then I added heart rate monitoring, and found that I needed also to split activities into smaller chunks, while still doing about the same amount of daily physical activity overall. My symptoms were already telling me what my step and heart rate monitoring were telling me, but for me the value of the monitor was as an objective measure that helped me believe and take notice of my symptoms - like it gave me permission to stop pushing myself to keep going and ignoring my symptoms. Now I'm more aware of this I can rely pretty well just on symptoms to tell me to stop or split activities, and I am less reliant on being told by my Fitbit.

 

[Kitty]

This is exactly why I get a bit annoyed with people who try to suggest that people with ME/CFS need a huge amount of education by health professionals in pacing or energy management. In reality, it's mostly muddling through, tweaking things as necessary ... But instead, if we get anything at all, it's micromanagement, with an imposed activity schedule and advice about sleep hygiene, typically banning naps or sleeping late, or complicated regimes with HRV.

Hear hear! It's like expecting to teach someone to drive from a book.

Last time I telehealthed with my ME specialist, she wanted to know my average fatigue, brain fog, and pain levels since I'd first seen her

I meant to mention this last night. This focus on fatigue and brain fog always seems a red herring to me, as we're almost never clear of them even on our best days. I'm not convinced they're as meaningful as doctors seem to think.

The real questions are about how much living we could do without trying to ignore red flashing lights or paying a heavy price afterwards. This year, roughly how far up the Y axis is our average, compared to last? And what shape does the line make: is it undulating fairly gently or does it look like a drawing of the Alps?

I at first felt so disappointed that monitoring my HR wasn't going to be the easy magic bullet for managing ME

I was interested in it as well, but suspected there'd be too many factors. Some of us have quite a range in our ability to tolerate effort, and in order to make decisions, we'd need to know how much capacity we have today. Given that we can never be sure, measuring our heart rate isn't likely to be any more reliable than instinct. Might not apply to everyone, though; people with more consistent capacity might find it a much more helpful tool.