Mastodawn

Okay, fine. Activity trackers for health and fitness I get. But has anyone done activity trackers for people with chronic illness that helps you *keep within your spoons*?

For some people it can be easy to overdo it. Also eg if you've had COVID or have long COVID, would it be helpful to have an activity tracker that explicitly helps you take it slow and not over-exert yourself?

Dan Hon Feb 10, 2023

I mean, you're supposed to *rest* when getting over COVID never mind long COVID, but my cursory review doesn't show activity trackers with an explicit convalescence mode, you know, 2+ years into a pandemic that will never end.

Dan Hon Feb 10, 2023

I guess if you wanna get all *aesthetic* about it, it's a cozy tracker. More stuff like Gentler Streak please.

Dan Hon Feb 10, 2023

Welp, that's today's episode then.

Dan Hon Feb 10, 2023

Okay, there we go:

~2000 words today on What If Activity Trackers Actually Met The Needs Of Those With Chronic Illnesses And Had A Convalescence Mode, Too?

**s14e15: Hey, Ease Up; A Load-Bearing If-Statement**

https://newsletter.danhon.com/archive/s14e15-hey-ease-up-a-load-bearing-if-statement/

s14e15: Hey, Ease Up; A Load-Bearing If-Statement

0.0 Context Setting Friday, 10 February, 2023 in Portland, Oregon and a grey, half-hearted rain of a day. 1.0 Some Things That Caught My Attention 1.1 Hey,...

Dan Hon Feb 10, 2023

Ok, everyone replying has been fantastic, thank you for all your links + references + sharing your experiences.

One question I have: my wife has fibromyalgia, anyone know any good apps we can check out? It's been a long time since she's looked.

David Thomson Feb 10, 2023

@danhon Clare (ME/CFS) has been trying this one out recently, sure it’s been sent over already but just in case: https://apps.apple.com/gb/app/visible-long-covid-me-cfs/id1624474919

Also, interview with the dev who has long covid here: https://www.theguardian.com/society/2022/nov/28/long-covid-the-patient-whos-made-an-app-to-track-its-symptoms

‎Visible: Long Covid & ME/CFS

‎Visible is designed to help you understand your Long Covid or ME/CFS. Visible is not intended to provide medical services such as diagnosis, cure, mitigation, prevention or treatment in relation to any disease or medical condition. The app is not a substitute for the advice of a medical professiona…

App Store

shabegom 🔘Feb 11, 2023

@danhon not sure if you're interested in digital therapeutics or just symptom tracking, but swing is looking at fibromyalgia: https://swingtherapeutics.com/

Home Page

Swing Therapeutics

Dan Hon Feb 12, 2023

@shabegom thanks! Wife took a look and qualified for the study.

Nat Feb 15, 2023

@danhon I keep thinking about how desperately I want this, eh. Something that recognises that for chronically ill and disabled people, progress isn’t linear and also conserving energy is important, and responds to symptom tracking/input.

Dan Sinker Feb 10, 2023

@danhon wait, you wrote all this *in an hour*???

Dan Hon Feb 10, 2023

@dansinker Yes Dan

Kevin Marks Feb 10, 2023

@danhon I noticed that when I had covid, my daily heart rate was noticeably higher in the tracker, despite being in bed all the time, rather than walking the dogs and cycling, which usually count as cardio.

Karla Feb 10, 2023

@danhon I can’t tell you how critical my apple watch has been to tracking my Long Covid induced tachycardia and how shitty it is to get the alerts that I should be doing things I know I would enjoy but would drastically put me in bed for days. I know if my bpm goes over 150 for more than 15 minutes, I’m pretty much heading to bed and it would be awesome to get an alert.

Sharon Wong Feb 10, 2023

@danhon Not sure if you update issues after sending them out, but if you do, I think it's worth linking to Visible! As several other people have mentioned, it's patient-led. There's been tragically little investment in ME over the years. I think boosting the voices of that community would be consistent with your stated goal of not trying to speak on behalf of them.

Dan Hon Feb 10, 2023

@sharonw Yeah, this one is going to have a follow-up on Monday.

Dan Hon Feb 10, 2023

@sharonw (And I have boosted the posts mentioning Visible in my replies!)

dötcöde Feb 10, 2023

@danhon you know what really GRATES about such apps? Their attempts to provide extrinsic motivation if you already have intrinsic motivation. Like ... I'm diabetic, I don't need some cheery digital "monster" waving it's arms around at me when I record a decent BG (srsly download mySugr and get angry). And I CERTAINLY don't want it fucking giving me a sad face and saying "sometimes that happens" when I record a high BG. Fuck RIGHT off with that shit.

dötcöde Feb 10, 2023

@danhon at the other end of the scale is the utterly amazing xDrip+ https://xdrip.readthedocs.io/en/latest/

xDrip+

Dan Hon Feb 10, 2023

@dotcode ah, nightscout-related!

Dan Hon Feb 10, 2023

@dotcode yeah, right?

I had a proper go at my optometrist last time I saw them; he was a baby and was all "hey, so, you know. diabetes. and your eyes. and your a1c. it's really important for you t--"

dude you know I was diagnosed like 10 years ago, please stop

Alby Feb 10, 2023

@danhon I'd really like a smart scale which was actually smart. Why can't my scale tell me what my 14-day average is, rather than being a weighted random number generator? Why can't it have modes that are friendly towards people with issues around their weight? What if I don't want to know my exact weight to 0.1 kg but rather that I'm heading in the right direction?

Carter Baxter Feb 10, 2023

@danhon The lack of real-world utility and awareness in tracking apps is just silly.

Why not alert me if my heart rate spikes up absurdly high while exercising? Nope, won't do that.

Or how bout recognizing that if I fall while riding my bike it may be considerably worse than if I just trip and fall walking?

How about some basic geospatial awareness? Maybe if I'm at an ICU it could be aware that very possibly I cannot, in fact, "still do it"

And "convalescence mode" is just.. right there.

Curtis C. Chen (he/him) 陳致宇 Feb 10, 2023

@danhon Oura ring does have an explicit “rest mode” setting but agreed, more user accessible customizations for chronic health conditions are needed for all wearable health monitors. https://ouraring.com/blog/ouras-new-rest-mode-helps-optimize-your-recovery/

Oura’s New Rest Mode Helps Optimize Your Recovery

Oura is introducing the ability to turn on “Rest Mode” within the app to optimize your insights to focus on recovery when you feel tired, unwell, or need to slow down. Turning on Rest Mode adjusts your Sleep and Readiness insights to give you recovery guidance while temporarily snoozing your Activity score and goals so […]

The Pulse Blog

Sisuile Butler Feb 11, 2023

@danhon yeah, I have my watch and my app actually set for two different step counts- my Wyze watch is set for 2500 steps, which is my "you should really slow down before your body makes you" level and my phone for 3000, as a "Stop. Now. You know better. You are crossing the Bad Line "

But streaks are the opposite of good for the way I manage my fitness.

Raven Onthill Feb 13, 2023

@danhon There is also a need for activity trackers which don't have to be worn on the wrist; not everyone can wear them there, so an ankle band, or even a chest band would be useful.

Thomas Beagle Feb 10, 2023

@danhon We just got new trackers (Huawei Watch GT3 and a Fitbit Sense 2) and both offer "stress" tracking but I don't quite understand what they're doing to achieve that.

Jacob Harris Feb 10, 2023

@[email protected] I mean, I do remember getting annoyed at Apple Health when it pinged me that I was walking much less than the previous month – I had broken my leg! I do think it would be interesting for these trackers to start to support both dramatic and gradual personal health changes. It's a more complicated conceptual model, but think how much better it would be for the ostensible purpose of these trackers

Dan Hon Feb 10, 2023

@harrisj I mean, it's "just"* a matter of also getting Apple Health's integration with your healthcare provider's EMR and pulling down your records and reconciling the ICD code for your broken leg and using it as an input for Apple Health's goal setting...

* heh

Mark Gardner Feb 10, 2023

@danhon @harrisj Yep, a Simple Matter of Programming™. And standardization, and vendor negotiation, and regulatory approval, and rollout and transition from legacy systems…

Dan Hon Feb 10, 2023

@mjgardner @harrisj tbh I'm still amazed at Apple Health's EHR integration

Jacob Harris Feb 10, 2023

@danhon @mjgardner Me, wondering why OneMedical doesn't work with Apple Health: hmmm

Me, remembering that Amazon purchased OneMedical: ohhhhh

Jacob Harris Feb 10, 2023

@[email protected] @[email protected] Coastal elitists may sneer, but the West Virginia University healthcare EHR is way more interoperable/feature-packed than any health portal here in DC (as I discovered when I broke the aforementioned leg)

Jacob Harris Feb 10, 2023

@danhon File this under different-but-related gripe: I am still unable to make my bitmoji/meta/cartoonish/whatever you want to call it avatar reflect that I have a mole on my chin or even that I have gray hair and crow's feet wrinkles. Instead, I have to be reminded I am not an impossibly smooth and young version of myself anymore

Jacob Harris Feb 10, 2023

@danhon What ties all of this together: there is often more nuance and broader uses for products than what product teams are often able to envision. If you are a company making fitness trackers and all your employees are young and fit, you should consider you are doing it wrong. If all your engineers building the avatar code are under 25, you're doing it wrong.

Dan Hon Feb 10, 2023

@harrisj The Memoji of Dorian Grey.

One of the brilliant examples of the Under 25 story is the sudden insight Zuckerberg had, and the subtle change in direction in Facebook's product, after he became a father.

Cyd Harrell Feb 10, 2023

@danhon @harrisj I realize there are gentlemen present, but I know you both, so... every cycle tracking app becomes useless for going through the entirely expected transition from regular periods to none in your 40s-50s as well 😬

Dan Hon Feb 10, 2023

@cydharrell @harrisj Hey, I'm married to someone in their 40s-50s!

@cydharrell I can't even tell my cycle tracking app how old I am. I got an info in it saying "in your age group...." but they can't even know my age, so obviously they are going by what would be normal for people under <handwaving> 40.

Jem Feb 10, 2023

@cydharrell @danhon @harrisj thank you, yes, I have been pondering this recently!

fritzoids Feb 11, 2023

@cydharrell that is exactly why, when I got my first tracker ever this week, I did not opt-in to the menstrual cycle part of the experience.

xian Feb 10, 2023

@danhon @harrisj the hallmark of "conservative empathy"

Bill Seitz Feb 10, 2023

@harrisj @danhon Or maybe they're understaffed? Or focused on building an ad-placement system, instead of actually improving the product?

Anil Dash Feb 10, 2023

@harrisj yeah, my Apple Watch scolded me for not walking enough when I had Lyme disease, and there's literally no way to tell it it should be reminding me to rest.

Mark Sample Feb 10, 2023

@harrisj I had the same experience with Apple Health. The whole quantitative health industry assumes everyone shares the same goals and needs. But it ain’t so!

paulmather007 Feb 10, 2023

@danhon My Apple Watch telling me it’s “time to stand up” during a long car ride is my favorite apple health annoyance. Followed by the “good job!” you get if you *do* stand up, which feels patronizing.

Adrian Howard Feb 10, 2023

@danhon This is reminding me of the gallows humour a friend of mine got from the "good job" notifications various apps gave him for weight loss during his terminal cancer.

He couldn't find anything at the time (and this was a while back) aimed at supporting weight stability — rather than weight loss.

Dan Hon Feb 10, 2023

@adrianh Yeah, one of my canonical examples of this is my wife getting a Great Job! notification for losing weight.

After she'd had a caesarean.

Emily Webber Feb 10, 2023

@danhon @adrianh the Apple Watch once told me to celebrate international women’s day by doubling calories burnt - you what now!?

Derek Powazek 🐐Feb 10, 2023

@danhon Every time I injure my back, I have to, literally HAVE TO, DOCTOR'S ORDERS, lie down and remain still until the spasm is over and the pinched nerve calms down.

If I had an evil little sprite on my wrist telling me to get up, it would be defenestrated immediately.

James Callan Feb 10, 2023

@danhon Someone gave me the Streaks app recently, and one feature I appreciate is that you can pause your streaks.

Chris Lienert Feb 10, 2023

@danhon even short term would be good. My watch hasn’t left me alone after surgery a week ago

Monica Ayhens-Madon Feb 11, 2023

@danhon Have fibro, and did a 3.5 mile walk this Tuesday at a much faster pace than normal. Gentler Streak urged me to rest the next day, while Apple Fitness was like “do it again!” 😔

Dysmorphia💛🤍💜🖤Feb 10, 2023

@danhon This kind of reminds me of that thing that I think you posted a while ago about smart scales not handling growing children well.

Dan Hon Feb 10, 2023

@dys_morphia one example is when our Withings scale congratulated my wife on losing weight.

After she'd had a caesarean.

Sofia ☭🇧🇷☭Feb 10, 2023

@danhon there was an article a few years ago where the writer got pregnant and her smart scale started shaming her for gaining weight and then she looked into it and discovered that basically none of these devices have a pregnancy mode? I wonder if that's changed 🙃

Daniel Latorre Feb 10, 2023

@danhon check out Gentler Streak, it won an AppStore award for just this issue. It encourages balance. It’s great. https://apps.apple.com/us/app/gentler-streak-workout-tracker/id1576857102

‎Gentler Streak Workout Tracker

‎Gentler Streak is a health and fitness tracker that puts your wellbeing first. It helps find the right balance between exercise and rest. App responds to your readiness and proposes daily workout actions that keep you within healthy activity levels. Rest days are part of the actions that keep the st…

App Store

Dan Hon Feb 10, 2023

@danlatorre yeah, gentler streak is great. I thought it was great that Apple featured it. Write about it in my newsletter.

RamenCatholic 🐢🌈Feb 10, 2023

@danhon I use Fitbit's sleep tracking to help me guess my spoons for a day. It shows my sleep stages & estimates sleep quality.