Hello! Fitness tracker recommendations?

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.

 

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.

 

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!

 

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

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 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.