Mastodawn

Dan Hon Feb 10, 2023

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.

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.