I have to track daily data for an illness. What motivates me to stay on top of it are the insights gained from the tracking. Being able to go to the doctor and answer questions definitively instead of anecdotally.
We've actually changed the therapy procedures based on the data and then been able to show it was effective with the data that came after.
So think about the insights the tracking will provide you and your doctor, and that might help motivate you.
We use old school paper and pencil. I have a clipboard with a tracking sheet created in excel with rows for each thing that needs tracking and columns for the day. Then I don't have to think, I just fill in boxes, and the pencil and paper are always right there on the wall in the bathroom, where the data is "generated" :)
This also lets me scan quickly across for daily and weekly trends. I have room at the bottom for longer notes if necessary. I put a [1] in the box and then a note that matches.
I don't know anything about tracking your particular illness, but I have tried tracking various things in my life with varying success. Many times I've failed, but then I tried again in different ways. One thing that I noticed is that too often I would try to track too much too rigorously. It would become a burden, I would lose motivation, and I would stop.
For some things, I decided to find a way to do the minimum amount of tracking that is sustainable. One example is fitness. I tried keeping a detailed track of the kinds of exercise I do. I realized it is too much of a burden. So instead, I opted for just noting in my journal whether I did any exercise at all. And it worked. And I realized that I have capacity for more so I started marking whether I did too little, just enough, or a lot. And that was sustainable. And then I built it up some more and for one particular type of exercise, and now I track it thoroughly, while only noting the others. This is now a habit and it seems to have stuck.
So instead of starting with a thorough way of tracking something, start with a minimal way of noting and build up from there.
The reason these things did not work for me is because they were things I had to "do" as in remember/initiate so I made Crohn's AI - because its a program that runs and I just have to reply or answer when the AI-GIs contact me.
This allowed me to essentially set it and forget it until and each program is specific to each condition so its not just a dumb daily alert or something like that.
You can make yourself a program at Medicare.dev - just explain your situation or whatever and it should guide you through the rest.
No, its not a guide and there are disclaims literally everywhere. As long as you don't use the gov bar (at top of all gov websites) its OK. I work w/ people from CMS daily.
Deploying now; TY again for the heads up on that. Im fairly aggressive about the distinction, especially since i'm a part of ACCESS and work with the Innovation Center frequently so this was def a messaging lapse on my part.
I see now. You are just a random user, you have no invite code so you don't see that landing page or any intents; just a blank record. I could def make that clearer but 99% of the traffic comes in w/ ref codes so they see the full paths w/ the disclaimers.
Where? I don't see a single one from clicking around a bit on the site.
The landing page doesn't even say what it is, just some audio thing somehow tied to Dr Oz (can't actually exercise it, because I run firefox). Why is the first thing you're expecting me to do is talk to my browser?
What if I'm deaf, mute, or blind and using accessibility tools? What am I even supposed to be talking about?
In the menu, projects doesn't do anything (and what's a project anyway in this context?)
There's 94 programs... for what? If I go open a program, https://medicare.dev/program/71152-general-enrollment-period... there's still no disclaimer, and still no explanation about the reason someone should be using the site. I guess this is to build.. AI something? Maybe for use in medicare.gov? Is this entire site meant to be used by folks working for medicare (and if so, should I even be able to see this much?)
Messages takes me to a login screen with no sign-up.
Forms and Invest take me to the same page, giving me a chance to invest in foreign markets(?), but not what the investments are in? (codify.city seems like it's created by you as well, similarly says sweet nothing about what purpose it's serving)
"How it works"... doesn't? "The walkthrough isn’t available yet."
"Wiki" seems to be providing some examples of what seems to be instructions to AI agents, but no indication how you'd even use them. (also if you scroll the box, there's an error "Syntax error in text mermaid version 11.16.0"
This whole site fails to nail the very basics, and seems like slop-coded nonsense. I'd encourage you to stop building features, and start doing the boring groundwork. If you're actually expecting anyone to use it, explain it.
Also yet to see any of the disclaimers you claim are all over the place. They're really not.
> Where? I don't see a single one from clicking around a bit on the site.
> The landing page doesn't even say what it is, just some audio thing somehow tied to Dr Oz (can't actually exercise it, because I run firefox). Why is the first thing you're expecting me to do is talk to my browser?
You have no invite; so what you are seeing is not what the test users currently see
> What if I'm deaf, mute, or blind and using accessibility tools? What am I even supposed to be talking about?
Then you would have come from another portal titally
In the menu, projects doesn't do anything (and what's a project anyway in this context?)
>
> There's 94 programs... for what? If I go open a program, https://medicare.dev/program/71152-general-enrollment-period... there's still no disclaimer, and still no explanation about the reason someone should be using the site. I guess this is to build.. AI something? Maybe for use in medicare.gov? Is this entire site meant to be used by folks working for medicare (and if so, should I even be able to see this much?)
Agents run the programs
> Messages takes me to a login screen with no sign-up.
Because you have no invite/ref code - so you are in a blank context
> Forms and Invest take me to the same page, giving me a chance to invest in foreign markets(?), but not what the investments are in? (codify.city seems like it's created by you as well, similarly says sweet nothing about what purpose it's serving)
Forms is an entry gate for people on the management side w/ specific intents
> "How it works"... doesn't? "The walkthrough isn’t available yet."
This is not done yet; i have several videos but they are all linked to specific cases and since you have no invite/ref code they are not available in your session
> "Wiki" seems to be providing some examples of what seems to be instructions to AI agents, but no indication how you'd even use them. (also if you scroll the box, there's an error "Syntax error in text mermaid version 11.16.0"
Yes, there are a few things I have to work with on this
> This whole site fails to nail the very basics, and seems like slop-coded nonsense. I'd encourage you to stop building features, and start doing the boring groundwork. If you're actually expecting anyone to use it, explain it.
I am working on this now; and no - its not slop coded; you are just being reductive and ignorant. I have made no claim this is a production effort you are seemingly just one of those ignorant people that assumes things and then reacts to their unverified assumptions
> Also yet to see any of the disclaimers you claim are all over the place. They're really not.
Yes, they are; they literally are in every single email when a user has the proper ref code.
People like you are the problem in my opinion; this was not a show HN I was responding to a comment and used and example from something I have been working on - you have used this to try and make yourself feel some sense of superiority by projecting claims of "completeness" that I never made. I am very glad that the majority of people I have worked with in tech are nothing like you are and I wish you well.
They are in the programs, when you make your program; it explains things very clearly.
Medicare.dev - clearly sates, as all Gov. websites do that its an official Gov. website etc... My literature here clearly states - for people that actually are using it - this is a functional healthcare utility, even if you google or ask ask - its a very clear distinction that is made.
For tracking in general you need a system and a medium. The bullet journal method has worked well for me for many years. The systems and structures within the bullet journal change over time, but you can jump back years, and see what you were thinking at the time. More recently I have been using GTD within the bullet journal framework. I highly suggest reading at least those two methods before building your own system.
+1 for outliners. Logseq was the first note-taking app that really got me to a daily logging habit that stuck, great for friction-less capture of random thoughts and notes, medical and what not. Flat wiki links and backlinks take some getting used to, but absolutely amazing for discovery and organization of notes.
This is the best solution. It's very easy to ignore a notification from some app and not so easy to ignore a call from somebody you know by name who is trying to help you.
I said this somewhere else in the thread, but it's crazy that this type of service exists ( in a good way obviously). I just never thought you would pay for someone to do this
I have an llm agent with a harness that stores/logs everything in a structured manner to local files and/or sqlite. This then turns more into casual conversation type stuff. Send it test results, talk about stuff, give it updates, etc, and it handles the rest. Querying the data is pretty straight-forward without the agent since it's plaintext/sqlite. I tried random tools over time but sorta fell out of them. This is kinda the only thing that's stuck.
Could take this further and make it better with structured tooling. Some sorta CLI perhaps, or an API, that the agent knows how to use, then can build a frontend on top or something. For now this works okay.
Yeah, maybe. The issue I foresee is more that the moat is quite small if you can just build it, so the moat would need to exist in stuff that can't just be built and replicated within a few weeks or something. User base maybe, connections to real resources, some other form of deeper value you can't just copy. Not sure though; I'm not a business person
Ya this is basically what Im building. I dont know where the connections to real resources actually live though? Insurance? Lab Results? Wearables? EEG headsets?
Suppose you could use voice too, yeah. I built a k8s-based sandbox environment. One pod = one agent, and then a bunch of scaffolding around that to manage it and stuff. "Agent" here is a Claude Code instance within a pod with root access to do whatever it wants inside the pod. The main interface is Discord, but it supports other interfaces/frontends. 1 agent = 1 pod = 1 discord channel, managed by the harness. It can do other stuff too, like spawn its own pods and namespaces to build and host its own infra, new agent teams/sub-teams, but unrelated.
I mostly use text to talk to it, and send files via the Discord file sharing mechanism. Discord has voice recordings too, which are sent as .ogg files, which the agents then turn into text with Whisper.
Not quite plain Claude Code but I didn't want to go into too much depth in my original message.
The end result though is a persistent data store for each pod/agent, and then I can talk to them whenever I want from wherever I want, and interact with it with proper media support and stuff. So I have one agent that's for medical logs and such, and others for various other things.
Thank you! Those would be more constructive ideas than what I originally sought out to do: play with text!
And the text-blob deserves refinement, IMO. It still seems 'cool' to me, though yes it's really really ambiguous just WHAT it is .. and if it were merely "really ambiguous" that would be better for us humans.
I did -want- to avoid spoilers.
I am impressed by the Dune story's epic nature. The all-caps treatment was meant in part to express this epic quality.
Also but more abstractly to call out how humans gather strings of concepts and form them into meaningful stories. So as I present the block of meaningless text it becomes meaningful upon a more technical word-parsing form of contemplation.
Haha, fair enough. I read the Dune books through the 4th and enjoyed them. I saw some typos and things and figured maybe there's something hidden in there.
Moving into the "physical world" helped me immensely.
* A paper calendar (ideally the kind with boxes for each day)
* Prompts inside the boxes if relevant, like for pill 1, pill 2, pill 3
* Dedicated physical space, with the associated stuff you need all together (including a pen/pencil!), somewhere that you will see it as part of your normal day to day
I also use phone reminders or spreadsheets for long term tracking where appropriate, but the day to day this lo-fi method works best. I scan or transcribe stuff into a spreadsheet at the end of the page if I need to keep it.
Yes actually! I recently bough a very expensive pen and kind of guilt me into writing and using physical media. I haven't really solved the problem of analyzing this data though (Ive tried scanning but stopped because its kind of alot of effort).
A few decades ago I was diagnosed with hypertension (high blood pressure) and for about the last 15 years I have been tracking my blood pressure and weight. Every morning when I wake up, I weigh myself and take my blood pressure. I write the results in a CSV file that sits on my desktop (it gets backed up). I do this religiously, every single day. I have tried other, more "modern", solutions but somehow they don't stick or are too cumbersome to use. Even tried to build my own app but lost motivation at some point.
Reducing friction is what worked for me. I've been using a headache tracking app for a few months now. I had to sort through a bunch of bad apps. Eventually I settled on one that only requires three taps to log symptoms after it sends a notification once a day (the key is you can set custom buttons to record the specific info you want). That's low enough overhead that I stick with it, and because of that I actually discovered and was able to address the root cause of my headaches, which is life-changing for me!
For something even lower friction than that, I just got this new device "Index 01" https://repebble.com/index. It's a ring with one button that you can hold down and dictate short voice notes to yourself that are transcribed and saved on your phone, set reminders and alarms, etc. It's super low friction because it's always there, you can do it one-handed, and you don't need to get out your phone so there's no distraction. The software is open source and hackable too, so you can customize what it does with the notes and add new voice commands. I think it would be perfect for low friction journaling of illness symptoms.
There's also a Pebble app called "Notes to Self": push button, dictate note, note gets transcribed and added to the timeline, either in the past (if note lacks a timestamp or is in the past) or for a future reminder. It's been the lowest friction for me to set reminders or save notes to myself about things that happened.
This might be relevant to you: I am building a free, open source self-help app. It has a quick daily check-in, a journal, and habit tracking, so some parts could work for keeping a simple record. I originally made it for myself because all the apps in this space were so expensive, and then decided to keep it free so people who can't afford those can use it too.
It is in very early development, but I am very invested in it, so you can expect frequent updates. If you are willing to try it, I would be really grateful for feedback.
Since you are building something yourself: my project is open source (https://github.com/Selftend/selftend), so feel free to take anything useful from it. Honestly, input from someone who has lived through quitting six systems would make it better.
And I would gladly have a conversation about this - no need to pay anyone, I would just enjoy being able to help. Contact is in my profile.
I've previously built a startup in this exact space (tracking of rheumatoid illnesses). We had a good collaboration with Charité Berlin, but it didn't take off as a business.
Happy to chat and learn what you're up to: hthh19xq@anonaddy.me
I'm not sure what you want to track but I'd recommend becoming a stationary nerd . Experiment with different notebooks, paper quality, try fountain pens, pencils, pastels... Pick the combination that brings you joy. If you find pleasure in the tactile act of putting ink (or graphite) on paper, you'll never want to quit journaling. Believe me.
I'm only half joking. Physical, handmade artefacts beat everything else, and will outlive whatever tracking app is currently trending.
I have to agree. At my gym, the people who seem to track their training mostly use paper notebooks. Even the younger people who otherwise live on their phones or post instagram videos of all their lifts. I don't notice many people using apps. Though it can be hard to tell, because e.g. a smart watch may be tracking some things automatically, or an app may have computed the workout in advance.
I personally don't track anymore. I was using a Google Sheet on my phone but it didn't really seem to add any value. Now I just remember what my reps and weights are for the main lifts I do.
Funny you say that. I tried tracking with a journal for 2 months, and it was just cumbersome to add it to the things I bring to gym (water bottle, earphones, wallet and phone). I eventually gave up in remembering to bring it, and just went back to logging on my phone
Haha, I love this. I went to Seattle recently and went to a stationary store. I bought a 150 dollar pen (yikes!). But oh my god, writing with it brings me so much pleasure. (I felt the same thing after moving from a 20 dollar Logitech keyboard to a 110 dollar lofree, it brings so much joy to use a excellent tool)
The bigger question you should ask yourself, is what are you hoping to gain by tracking? I mean if you were getting results from Google sheets you would be using it today.
If you want to make it a product you need to do it in a way that makes people less paranoid, allows them to enjoy their life, doesn't try to guilt or game them into staying involved, doesn't have, lots of notifications and makes their life better as a whole. I mean it's not healthy to think about your illness 24/7.
Those are good questions, and to answer them you really have to think about what it is to have an illness that requires treatment.
Typically you start on a medication. These usually take anywhere from 3 to 6 months to really work. Along the way you will have ups and downs, and maybe some unexpected new things happening that are related to the disease. Do you feel better today than 3, 4, 5 months ago? Are you having more sick days, fewer sick days? Are you having more or fewer days with nausea or headaches?
After being on a medication for some time, you might have a general feeling about whether it's good or not. But for people like OP, it's very often not the case that you start on a medication and everything is good. No: you go through one medication after another. Sometimes multiple stacked on top of each other. Each medication takes months to kick in.
Who remembers if medication 1 worked better than medication 5, four years later? It's surprisingly hard to remember how you felt physically. It's also really important to keep a journal of the basic facts, like what doctors you saw and what tests were done. But I think tracking how you feel is important. It allows you to compare (not scientifically or perfectly, but well enough) over time. It allows you to see trends you might not spot otherwise; a medication starting to fail as opposed to random flares, for example. Or if you track what you eat, you might notice that some types of foods make you feel bad for a couple of days after, a connection that's often hard to make without doing a full elimination diet.
I recommend people with chronic illnesses keep a spreadsheet of how you feel, day to day. But also track every medication, every switch, every diet change (if applicable), every doctor's visit and treatment decision, every symptom and side effect. I don't think anyone should obsess about it, but recording some basic facts doesn't hurt and doesn't take much time, as long as can remember to keep it up.
Ya this is 100% exactly where Im coming from. Probably word for word. Im on my 6th med right now, and just thinking about how long the journey is/was and what lays ahead is why Im trying to build something for this.
I have an app I built for myself (because I couldn't find anything appropriate) to ask me questions via notifications like rating how I feel, how's my sleep, am I alert, eating well etc. its probablistic both in when it alerts and what it asks and I power a self monitoring dashboard off the back of it.
There were two key insights for me:
- too frequent or predictable and I'll ignore it
- always being reminded about something negative is bad for you
You didn't give a lot of information in your question; so that is my two cents.
I make an app called Reflect [1] which is geared towards tracking these kinds of things. Admittedly, sticking with the habit and forming it in the first place can be hard. If you’re interested in talking about it, let me know! We have a discord that we link to in the app and that’s the fastest way to get a hold of me.
I keep an old phone in the bathroom, and every morning I use it to file my weight and my peak flow (for asthma tracking) on a web page I host on my home server. The server just appends the numbers into two text files, and plots some nice curves. In case of errors or other problems, I can just go and edit those files. The basic tracker took about an afternoon to code, by hand, long before we had LLMs. I have a more advanced tracker system to remember all the craft beers I drink, that one has recently migrated to a sqlite backend, and the LLMs have helped me to add many more features. Some of my friends have wanted to use it too, one lasted a couple of months, the rest gave up within a week - it requires discipline which most people don't have - I wouldn't either, but being my own system I am more inclined to keep using it, and adding features.
My advice would be to find a way that minimizes the friction, and get it into your (morning?) routine. And keep the system simple to begin with.
Did your friends ever say why they stopped, or did they just kind of stop opening it? For me it was always the second one. I never really decided to quit any of mine, I just noticed a few weeks later that I had.
What do you need to track? I have a personal app I call Genomicly where I am, quite amateurishly, trying to replicate MaxGen panel and similar precision medicine with whoop, and LabCorp integration. My main goal is privacy which is tricky without the right hardware. The whoop is really easy to use from someone with ADHD and 20 years on a fire engine. I need simple.
I don't know anything more about your condition than a few sentences from Google.
So I don't know if tracking would or would not provide useful information for making daily choices that mitigate symptom or if tracking would have substantial on medical treatment outcomes.
And most importantly, I don't know if tracking will or won't benefit your mental well-being. Everybody copes with chronic disease differently...both the physical /medical dimensions and the emotional/psychological ones. good luck.
Well really im trying to see if anything triggers it, and if it does, I stop the trigger. Maybe something about my food, or how much I sleep, or if I drink caffeine or not is causing some of the pain Im having. But I dont know.
How about using a dedicated paper notebook to log everything that comes to your mind related to this illness?
And also, if the illness is somehow related to food/habits, more or less, then that could also be tracked - like what you're eating and how your body responded afterwards (I mean, within, let's say, 24 hours).
If you are journaling your illness, you might want to do a more complete journal so it is not the only thing to focus on. Keep it as part of a larger record.
You can chat with the AI and say “I’ve had headaches at 6pm the last 4 days and foot pain every morning for last 2 weeks” and it will create structured entries for you on each date.
Still kinda buggy tho so it might be easiest to hop on a video call to walk you thru it
I’ll get you free access if you run into the paywall (trying to set up the paywall soon)
> Is this a common experience or do I just have to be better at tracking?
I don't know anything about your illness, but I have Type 1 Diabetes, which is a pretty high maintenance chronic illness. Many T1Ds put a lot of effort into tracking their daily numbers and routines. For example, see all the settings in this popular third party continuous glucose monitoring app[1]. It does all sorts of tracking and monitoring and giving you feedback. My cousin is also T1D and uses some similar app to manage all this stuff, always putting in all her injections and food intakes and CGM data and using that app to make predictions and judgments. It's very useful for her.
I've tried these a couple times and they just don't work for me. I'll keep up with it for like two days and then skip a few entries and then just stop.
I think part of it is, I just don't find the output from all that input very useful. I've been diabetic for more than 20 years so I'm just kinda good at it and don't get much reward for all that effort. But also my personality is very detail-oriented and my daily routine is pretty stable, so for me personally, I just don't get the value from all the tracking that people with other personalities do.
So I guess for your situation, I would ask what you expect to get out of all this effort. Find a way to make the amount of effort you have to put in match the amount of value you want to get out of it. If it requires a ton of effort to do all this tracking and all you get out of it is a couple of charts that you don't care about, then maybe your particular situation doesn't justify spending that effort. If you do actually get some value out of it, but the effort is still too high, then maybe you can find a way to reduce the amount of tracking effort, even if the actual fidelity of the end results is somewhat lower.
Just some ideas from my parallel perspective. Good luck, chronic illnesses are a never ending adventure.
Thanks for your perspective. I find these threads really useful especially because alot of the people Im around have never given a thought to chronic illness in general. I think theres just so many things that I feel, and so many small things I do throughout the day, that I feel there should be a connection or unique insight somewhere in order to make my diagnosis or care journey better. So granted, my expectation is really open ended. For something like diabetes (where there is a specific marker to track, this is different), but for seronegative im always second guessing what caused this flare or when did this part start hurting. This being said, thank you!
Pen(cil) and Paper. I keep a stock of mini memo pads in various colors for record keeping. This lets you track what you need when you need it. If you find yourself needing more room get an thin a5 notebook.
What i did (been doing it for like 5 months so far) is keep track of my day (just using Logseq just type in things like: "5:00 -> 5:30 checking Email" and such .. for the whole day, but i found that when i'm not home there will be some gaps, and that I usully fill back form memroy at the end of the day (which leads to maybe some gaps?)
usully what I do I track (in the md file) day by day: my mood, what I eat, do, play, nootropics, waking up time and all that) and the goal was to see any trends (was planning to do it for like 1-2 weeks but then turned out to in a way keep me gorunded and more aware?) (the last 3 months logs md file was 5k long)
I tried to have a Hermes agent that I talk to throught telegram (had some cron jobs to check in multiple times a day) and some script to pull things like browser data and other data points to see time spent on certain things, and it would generate an md report at the end of the day for that day, but idk, it misses a lot of things (like it hard to tell how many hours I spent on X or Y and such reltative to other day and/or the break down of tasks and such).
for the md file I do upload to Claude or such and then try to find correlation (I dont tend to read it back my self), I did find out that lactose give me bit of a brain fog (that was never too strong that I could tell it's lactose directly) and that when on caffine I tend to think I achevie more than what I actully did (among many other thigns here and there), I also have smart ring data taht I also upload to claude too.
I do use habits app (been using it for like ~5 years but with some gaps.
My main thing that would make me use somethig external is if it pulls data form various sources directly into the logs.
like browsing history, sleep data, location data, phone usage hisory, spotify, tempreture, air quality, water drank (Idk maybe usign some smart water bottle or something) and such (althougth it might be iatrogenic)
Yeah I feel the same way about filing from memory. I said this higher up in the thread, but at the end of the day how I really felt is kind of gone, and im filling it in from memory.
The lactose point is exactly what I am trying to work on right now. Do you just upload data or do you have a specific question/md file you use to get that result?
And finally, you mentioned that you are looking for external sources and pulling it into logs. Have any external sources been helpful or? (ex: lactose was from self reported right?)
You can get a guy online to call you every day and yell at you if you didn't do the thing.[0] That's probably what's missing here, some kind of external pressure to do the thing.
At least that's what I've found helpful, I couldn't rely on willpower for long term behavior change, so I just change my environment in a way that makes doing the thing become the path of least resistance.
Or you could tie it to an existing habit like, "I'm not allowed to brush my teeth in the morning until I logged how shit I feel today." But I'd definitely consider just getting the guy who checks "did you do the thing?"
[0] I've seen ads online for people doing this for like $1/day.
I also found this very helpful and refer to it on a regular basis:
Im shocked that this is a service, thats really interesting. And yes, ive tried logging based on psychological checkpoints, but I found how I really felt is lost by the time I log something at the end of the day.
You can find people who will do it for free, there are forums dedicated to that. (Called accountability partner, accountability buddy, things like that.)
I set up a project with a friend once, where every evening, for several months straight, we sent each other one piece of creative work. (He'd send me a drawing, I'd send him a song.) This was even more interesting because beforehand we'd send each other a prompt for what to make, so it was always a bit of a fun challenge.
But eventually he lost interest, so if it something you intend to do indefinitely, I'd recommend paying someone, instead of relying on them not getting bored / demotivated.
When he lost interest, the way I solved the problem was by just making a rule for myself: I had to do my task every single day, as soon as I woke up.
I structured my environment to make this inevitable, i.e. every night before bed I'd turn off the internet, turn off my phone, and get things ready for the next morning, so that everything would be smooth and "automatic", even if I stumbled out of bed barely sentient.
Kinda like that hack where you put your running shoes next to your bed, so you step on them as soon as you get out of bed. Or putting an important briefcase in front of the door, so you trip over it on the way out. Environmental design!
In that case sadly I think it’s just having significant discipline to track the various things. I had to do this for a while because of allergies and it was a lot of effort. However, as someone else has suggested, either getting someone to call you (I basically did this, and it was definitely the easiest way) or maybe you could knock something together with twilio or similar. I considered this, but ultimately didn’t have time so just had someone call me instead.
I also used a lot of the health functions on my iPhone, but those are easy to ignore.
I also used a bunch of smart buttons - so when I drank water I pressed a smart button to log that, I had other smart buttons to log taking specific medications, etc.
The problem is if you’re not motivated to do it (which is often the case if you’re feeling unwell/overwhelmed) then very few systems help.
Considered building something like this over a decade ago (because my mum has chronic health problems that are manageable but require a lot of management) and I'd recently been diagnosed with Chrohn's.
I thought about the design/approach that would work for her and her use case and my own and then I realised I'd be holding peoples most personal data (medical) and realised that I wasn't comfortable building a system that did that or that I could keep it genuinely secure, it simply wasn't a level of risk I was comfortable with and I've worked on/around payment systems etc but that is only money in the end (and the risk would be my employers).
For my personal use case I just have health.md in my `~/personal` dir, I put stuff in with a fixed structure, so I can grep it it later and that's about it.
It seems to work however managing a chronic in illness in the UK is going to be quite different to other countries, here other than tracking your symptoms and remembering appointments (and even then there is the excellent NHS app) etc it's a lot simpler.
I wish you good luck in finding something that does work for you and hopefully others, I've yet to see a system that works for even most chronically ill people.
thanks for the insight. the data risk is something that I havent went into. What would have changed it for you? (local, export and delete, or maybe something where the patient owns the key?)
Separately, Id really like to know what structure you keep your health.md? I go between fixed responses, and free text responses and havent really settled on anything yet.
Seems like the appointment and coordination is mostly handled, which leaves the actual symptom part! Thanks again for your response.
I can liken it down to one thing. First, all the tracking methods were based on habit building, and admittedly I failed in building that habit. Perhaps because of activation energy to get started/remember to do it.
I have to track daily data for an illness. What motivates me to stay on top of it are the insights gained from the tracking. Being able to go to the doctor and answer questions definitively instead of anecdotally.
We've actually changed the therapy procedures based on the data and then been able to show it was effective with the data that came after.
So think about the insights the tracking will provide you and your doctor, and that might help motivate you.
We use old school paper and pencil. I have a clipboard with a tracking sheet created in excel with rows for each thing that needs tracking and columns for the day. Then I don't have to think, I just fill in boxes, and the pencil and paper are always right there on the wall in the bathroom, where the data is "generated" :)
This also lets me scan quickly across for daily and weekly trends. I have room at the bottom for longer notes if necessary. I put a [1] in the box and then a note that matches.
I don't know anything about tracking your particular illness, but I have tried tracking various things in my life with varying success. Many times I've failed, but then I tried again in different ways. One thing that I noticed is that too often I would try to track too much too rigorously. It would become a burden, I would lose motivation, and I would stop.
For some things, I decided to find a way to do the minimum amount of tracking that is sustainable. One example is fitness. I tried keeping a detailed track of the kinds of exercise I do. I realized it is too much of a burden. So instead, I opted for just noting in my journal whether I did any exercise at all. And it worked. And I realized that I have capacity for more so I started marking whether I did too little, just enough, or a lot. And that was sustainable. And then I built it up some more and for one particular type of exercise, and now I track it thoroughly, while only noting the others. This is now a habit and it seems to have stuck.
So instead of starting with a thorough way of tracking something, start with a minimal way of noting and build up from there.
I hear you, ill try this out
The reason these things did not work for me is because they were things I had to "do" as in remember/initiate so I made Crohn's AI - because its a program that runs and I just have to reply or answer when the AI-GIs contact me.
Intent: https://wiki.crohns.ai/agent/posts/ibd-biologic-therapy-init...
Program: https://crohns.ai/program/71174-eim-joint-pain-flare
Protocol: https://crohns.ai/protocol/71174
This allowed me to essentially set it and forget it until and each program is specific to each condition so its not just a dumb daily alert or something like that.
You can make yourself a program at Medicare.dev - just explain your situation or whatever and it should guide you through the rest.
You're operating a third-party Medicare guide at "medicare.dev" with no visible disclaimer anywhere that you are not affiliated with Medicare?
No, its not a guide and there are disclaims literally everywhere. As long as you don't use the gov bar (at top of all gov websites) its OK. I work w/ people from CMS daily.
Where are the disclaimers? I've clicked around, and nothing is really clear what this is, or what it isn't.
Deploying now; TY again for the heads up on that. Im fairly aggressive about the distinction, especially since i'm a part of ACCESS and work with the Innovation Center frequently so this was def a messaging lapse on my part.
I see now. You are just a random user, you have no invite code so you don't see that landing page or any intents; just a blank record. I could def make that clearer but 99% of the traffic comes in w/ ref codes so they see the full paths w/ the disclaimers.
TY for the heads up.
Where? I don't see a single one from clicking around a bit on the site.
The landing page doesn't even say what it is, just some audio thing somehow tied to Dr Oz (can't actually exercise it, because I run firefox). Why is the first thing you're expecting me to do is talk to my browser?
What if I'm deaf, mute, or blind and using accessibility tools? What am I even supposed to be talking about?
In the menu, projects doesn't do anything (and what's a project anyway in this context?)
There's 94 programs... for what? If I go open a program, https://medicare.dev/program/71152-general-enrollment-period... there's still no disclaimer, and still no explanation about the reason someone should be using the site. I guess this is to build.. AI something? Maybe for use in medicare.gov? Is this entire site meant to be used by folks working for medicare (and if so, should I even be able to see this much?)
Messages takes me to a login screen with no sign-up.
Forms and Invest take me to the same page, giving me a chance to invest in foreign markets(?), but not what the investments are in? (codify.city seems like it's created by you as well, similarly says sweet nothing about what purpose it's serving)
"How it works"... doesn't? "The walkthrough isn’t available yet."
"Wiki" seems to be providing some examples of what seems to be instructions to AI agents, but no indication how you'd even use them. (also if you scroll the box, there's an error "Syntax error in text mermaid version 11.16.0"
This whole site fails to nail the very basics, and seems like slop-coded nonsense. I'd encourage you to stop building features, and start doing the boring groundwork. If you're actually expecting anyone to use it, explain it.
Also yet to see any of the disclaimers you claim are all over the place. They're really not.
> Where? I don't see a single one from clicking around a bit on the site. > The landing page doesn't even say what it is, just some audio thing somehow tied to Dr Oz (can't actually exercise it, because I run firefox). Why is the first thing you're expecting me to do is talk to my browser?
You have no invite; so what you are seeing is not what the test users currently see
> What if I'm deaf, mute, or blind and using accessibility tools? What am I even supposed to be talking about?
Then you would have come from another portal titally
In the menu, projects doesn't do anything (and what's a project anyway in this context?)
>
> There's 94 programs... for what? If I go open a program, https://medicare.dev/program/71152-general-enrollment-period... there's still no disclaimer, and still no explanation about the reason someone should be using the site. I guess this is to build.. AI something? Maybe for use in medicare.gov? Is this entire site meant to be used by folks working for medicare (and if so, should I even be able to see this much?)
Agents run the programs
> Messages takes me to a login screen with no sign-up.
Because you have no invite/ref code - so you are in a blank context
> Forms and Invest take me to the same page, giving me a chance to invest in foreign markets(?), but not what the investments are in? (codify.city seems like it's created by you as well, similarly says sweet nothing about what purpose it's serving)
Forms is an entry gate for people on the management side w/ specific intents
> "How it works"... doesn't? "The walkthrough isn’t available yet."
This is not done yet; i have several videos but they are all linked to specific cases and since you have no invite/ref code they are not available in your session
> "Wiki" seems to be providing some examples of what seems to be instructions to AI agents, but no indication how you'd even use them. (also if you scroll the box, there's an error "Syntax error in text mermaid version 11.16.0"
Yes, there are a few things I have to work with on this
> This whole site fails to nail the very basics, and seems like slop-coded nonsense. I'd encourage you to stop building features, and start doing the boring groundwork. If you're actually expecting anyone to use it, explain it.
I am working on this now; and no - its not slop coded; you are just being reductive and ignorant. I have made no claim this is a production effort you are seemingly just one of those ignorant people that assumes things and then reacts to their unverified assumptions
> Also yet to see any of the disclaimers you claim are all over the place. They're really not.
Yes, they are; they literally are in every single email when a user has the proper ref code.
People like you are the problem in my opinion; this was not a show HN I was responding to a comment and used and example from something I have been working on - you have used this to try and make yourself feel some sense of superiority by projecting claims of "completeness" that I never made. I am very glad that the majority of people I have worked with in tech are nothing like you are and I wish you well.
> People like you are the problem in my opinion;
You got caught lying. It is funny that you found a way to blame the tester. The website is public. This sounded quite aggressive.
Lying about what? Did you even read the thread? Can you point to the "lie", if so I will attempt to correct.
"tester" is probably not the correct term here. website "visitor" would probably be more appropriate.
They are in the programs, when you make your program; it explains things very clearly.
Medicare.dev - clearly sates, as all Gov. websites do that its an official Gov. website etc... My literature here clearly states - for people that actually are using it - this is a functional healthcare utility, even if you google or ask ask - its a very clear distinction that is made.
For tracking in general you need a system and a medium. The bullet journal method has worked well for me for many years. The systems and structures within the bullet journal change over time, but you can jump back years, and see what you were thinking at the time. More recently I have been using GTD within the bullet journal framework. I highly suggest reading at least those two methods before building your own system.
+1 for outliners. Logseq was the first note-taking app that really got me to a daily logging habit that stuck, great for friction-less capture of random thoughts and notes, medical and what not. Flat wiki links and backlinks take some getting used to, but absolutely amazing for discovery and organization of notes.
Actually I have tried this. GTD with obsidian
My friend paid someone to call her every day and ask her how she's doing, then write the rating in a spreadsheet.
This is the best solution. It's very easy to ignore a notification from some app and not so easy to ignore a call from somebody you know by name who is trying to help you.
I said this somewhere else in the thread, but it's crazy that this type of service exists ( in a good way obviously). I just never thought you would pay for someone to do this
I have an llm agent with a harness that stores/logs everything in a structured manner to local files and/or sqlite. This then turns more into casual conversation type stuff. Send it test results, talk about stuff, give it updates, etc, and it handles the rest. Querying the data is pretty straight-forward without the agent since it's plaintext/sqlite. I tried random tools over time but sorta fell out of them. This is kinda the only thing that's stuck.
Could take this further and make it better with structured tooling. Some sorta CLI perhaps, or an API, that the agent knows how to use, then can build a frontend on top or something. For now this works okay.
This is a great idea for a potential startup or, even better, some free software. I started developing something like this but didn't go far.
Yeah, maybe. The issue I foresee is more that the moat is quite small if you can just build it, so the moat would need to exist in stuff that can't just be built and replicated within a few weeks or something. User base maybe, connections to real resources, some other form of deeper value you can't just copy. Not sure though; I'm not a business person
Ya this is basically what Im building. I dont know where the connections to real resources actually live though? Insurance? Lab Results? Wearables? EEG headsets?
So like a voice capture system, then just feed all that as raw data into an agent?
Suppose you could use voice too, yeah. I built a k8s-based sandbox environment. One pod = one agent, and then a bunch of scaffolding around that to manage it and stuff. "Agent" here is a Claude Code instance within a pod with root access to do whatever it wants inside the pod. The main interface is Discord, but it supports other interfaces/frontends. 1 agent = 1 pod = 1 discord channel, managed by the harness. It can do other stuff too, like spawn its own pods and namespaces to build and host its own infra, new agent teams/sub-teams, but unrelated.
I mostly use text to talk to it, and send files via the Discord file sharing mechanism. Discord has voice recordings too, which are sent as .ogg files, which the agents then turn into text with Whisper.
Not quite plain Claude Code but I didn't want to go into too much depth in my original message.
The end result though is a persistent data store for each pod/agent, and then I can talk to them whenever I want from wherever I want, and interact with it with proper media support and stuff. So I have one agent that's for medical logs and such, and others for various other things.
discord as an interface is interesting. Any particular reason? (openness or somewhere you already live?)
Is the Dune summary in your bio steganography of some sort, or contains a code? Or just as-is to avoid spoilers?
Mostly merely playing.
And in response to this question, I did a new version (WARNING: Has LOUD Star-Wars music): https://starwarsintrocreator.kassellabs.io/FP-LxbQVrUHPe7UvJ...
More:
Thank you! Those would be more constructive ideas than what I originally sought out to do: play with text!
And the text-blob deserves refinement, IMO. It still seems 'cool' to me, though yes it's really really ambiguous just WHAT it is .. and if it were merely "really ambiguous" that would be better for us humans.
I did -want- to avoid spoilers.
I am impressed by the Dune story's epic nature. The all-caps treatment was meant in part to express this epic quality.
Also but more abstractly to call out how humans gather strings of concepts and form them into meaningful stories. So as I present the block of meaningless text it becomes meaningful upon a more technical word-parsing form of contemplation.
Haha, fair enough. I read the Dune books through the 4th and enjoyed them. I saw some typos and things and figured maybe there's something hidden in there.
Thats what I did here... w/ the agent and voice capture etc...
https://crohns.ai
Moving into the "physical world" helped me immensely.
* A paper calendar (ideally the kind with boxes for each day) * Prompts inside the boxes if relevant, like for pill 1, pill 2, pill 3 * Dedicated physical space, with the associated stuff you need all together (including a pen/pencil!), somewhere that you will see it as part of your normal day to day
I also use phone reminders or spreadsheets for long term tracking where appropriate, but the day to day this lo-fi method works best. I scan or transcribe stuff into a spreadsheet at the end of the page if I need to keep it.
Yes actually! I recently bough a very expensive pen and kind of guilt me into writing and using physical media. I haven't really solved the problem of analyzing this data though (Ive tried scanning but stopped because its kind of alot of effort).
A few decades ago I was diagnosed with hypertension (high blood pressure) and for about the last 15 years I have been tracking my blood pressure and weight. Every morning when I wake up, I weigh myself and take my blood pressure. I write the results in a CSV file that sits on my desktop (it gets backed up). I do this religiously, every single day. I have tried other, more "modern", solutions but somehow they don't stick or are too cumbersome to use. Even tried to build my own app but lost motivation at some point.
Hopefully something I can solve with what Im building. Thank you for the perspective!
Reducing friction is what worked for me. I've been using a headache tracking app for a few months now. I had to sort through a bunch of bad apps. Eventually I settled on one that only requires three taps to log symptoms after it sends a notification once a day (the key is you can set custom buttons to record the specific info you want). That's low enough overhead that I stick with it, and because of that I actually discovered and was able to address the root cause of my headaches, which is life-changing for me!
For something even lower friction than that, I just got this new device "Index 01" https://repebble.com/index. It's a ring with one button that you can hold down and dictate short voice notes to yourself that are transcribed and saved on your phone, set reminders and alarms, etc. It's super low friction because it's always there, you can do it one-handed, and you don't need to get out your phone so there's no distraction. The software is open source and hackable too, so you can customize what it does with the notes and add new voice commands. I think it would be perfect for low friction journaling of illness symptoms.
There's also a Pebble app called "Notes to Self": push button, dictate note, note gets transcribed and added to the timeline, either in the past (if note lacks a timestamp or is in the past) or for a future reminder. It's been the lowest friction for me to set reminders or save notes to myself about things that happened.
https://apps.repebble.com/notes-to-self_1bf71e21cd18409baa8e...
Im definetly checking this out! Thanks for linking it!
This might be relevant to you: I am building a free, open source self-help app. It has a quick daily check-in, a journal, and habit tracking, so some parts could work for keeping a simple record. I originally made it for myself because all the apps in this space were so expensive, and then decided to keep it free so people who can't afford those can use it too.
It is in very early development, but I am very invested in it, so you can expect frequent updates. If you are willing to try it, I would be really grateful for feedback.
Since you are building something yourself: my project is open source (https://github.com/Selftend/selftend), so feel free to take anything useful from it. Honestly, input from someone who has lived through quitting six systems would make it better.
And I would gladly have a conversation about this - no need to pay anyone, I would just enjoy being able to help. Contact is in my profile.
I've previously built a startup in this exact space (tracking of rheumatoid illnesses). We had a good collaboration with Charité Berlin, but it didn't take off as a business.
Happy to chat and learn what you're up to: hthh19xq@anonaddy.me
I find a telegram bot useful, it's just easy to start typing. Then can store right into a Google spreadsheet
For instance it can text and have me rate some symptom or can put structured text into a special part of the spreadsheet
Ya, trying that out right now (the product that Im trying to build)
I'm not sure what you want to track but I'd recommend becoming a stationary nerd . Experiment with different notebooks, paper quality, try fountain pens, pencils, pastels... Pick the combination that brings you joy. If you find pleasure in the tactile act of putting ink (or graphite) on paper, you'll never want to quit journaling. Believe me.
I'm only half joking. Physical, handmade artefacts beat everything else, and will outlive whatever tracking app is currently trending.
Start on YT and go down the rabbit hole.
I have to agree. At my gym, the people who seem to track their training mostly use paper notebooks. Even the younger people who otherwise live on their phones or post instagram videos of all their lifts. I don't notice many people using apps. Though it can be hard to tell, because e.g. a smart watch may be tracking some things automatically, or an app may have computed the workout in advance.
I personally don't track anymore. I was using a Google Sheet on my phone but it didn't really seem to add any value. Now I just remember what my reps and weights are for the main lifts I do.
Funny you say that. I tried tracking with a journal for 2 months, and it was just cumbersome to add it to the things I bring to gym (water bottle, earphones, wallet and phone). I eventually gave up in remembering to bring it, and just went back to logging on my phone
Haha, I love this. I went to Seattle recently and went to a stationary store. I bought a 150 dollar pen (yikes!). But oh my god, writing with it brings me so much pleasure. (I felt the same thing after moving from a 20 dollar Logitech keyboard to a 110 dollar lofree, it brings so much joy to use a excellent tool)
The bigger question you should ask yourself, is what are you hoping to gain by tracking? I mean if you were getting results from Google sheets you would be using it today.
If you want to make it a product you need to do it in a way that makes people less paranoid, allows them to enjoy their life, doesn't try to guilt or game them into staying involved, doesn't have, lots of notifications and makes their life better as a whole. I mean it's not healthy to think about your illness 24/7.
Those are good questions, and to answer them you really have to think about what it is to have an illness that requires treatment.
Typically you start on a medication. These usually take anywhere from 3 to 6 months to really work. Along the way you will have ups and downs, and maybe some unexpected new things happening that are related to the disease. Do you feel better today than 3, 4, 5 months ago? Are you having more sick days, fewer sick days? Are you having more or fewer days with nausea or headaches?
After being on a medication for some time, you might have a general feeling about whether it's good or not. But for people like OP, it's very often not the case that you start on a medication and everything is good. No: you go through one medication after another. Sometimes multiple stacked on top of each other. Each medication takes months to kick in.
Who remembers if medication 1 worked better than medication 5, four years later? It's surprisingly hard to remember how you felt physically. It's also really important to keep a journal of the basic facts, like what doctors you saw and what tests were done. But I think tracking how you feel is important. It allows you to compare (not scientifically or perfectly, but well enough) over time. It allows you to see trends you might not spot otherwise; a medication starting to fail as opposed to random flares, for example. Or if you track what you eat, you might notice that some types of foods make you feel bad for a couple of days after, a connection that's often hard to make without doing a full elimination diet.
I recommend people with chronic illnesses keep a spreadsheet of how you feel, day to day. But also track every medication, every switch, every diet change (if applicable), every doctor's visit and treatment decision, every symptom and side effect. I don't think anyone should obsess about it, but recording some basic facts doesn't hurt and doesn't take much time, as long as can remember to keep it up.
Ya this is 100% exactly where Im coming from. Probably word for word. Im on my 6th med right now, and just thinking about how long the journey is/was and what lays ahead is why Im trying to build something for this.
I have an app I built for myself (because I couldn't find anything appropriate) to ask me questions via notifications like rating how I feel, how's my sleep, am I alert, eating well etc. its probablistic both in when it alerts and what it asks and I power a self monitoring dashboard off the back of it.
There were two key insights for me:
- too frequent or predictable and I'll ignore it
- always being reminded about something negative is bad for you
You didn't give a lot of information in your question; so that is my two cents.
I make an app called Reflect [1] which is geared towards tracking these kinds of things. Admittedly, sticking with the habit and forming it in the first place can be hard. If you’re interested in talking about it, let me know! We have a discord that we link to in the app and that’s the fastest way to get a hold of me.
[1] https://apps.apple.com/us/app/reflect-track-anything/id64638...
Fun! Ill check it out soon!
I keep an old phone in the bathroom, and every morning I use it to file my weight and my peak flow (for asthma tracking) on a web page I host on my home server. The server just appends the numbers into two text files, and plots some nice curves. In case of errors or other problems, I can just go and edit those files. The basic tracker took about an afternoon to code, by hand, long before we had LLMs. I have a more advanced tracker system to remember all the craft beers I drink, that one has recently migrated to a sqlite backend, and the LLMs have helped me to add many more features. Some of my friends have wanted to use it too, one lasted a couple of months, the rest gave up within a week - it requires discipline which most people don't have - I wouldn't either, but being my own system I am more inclined to keep using it, and adding features.
My advice would be to find a way that minimizes the friction, and get it into your (morning?) routine. And keep the system simple to begin with.
Did your friends ever say why they stopped, or did they just kind of stop opening it? For me it was always the second one. I never really decided to quit any of mine, I just noticed a few weeks later that I had.
What do you need to track? I have a personal app I call Genomicly where I am, quite amateurishly, trying to replicate MaxGen panel and similar precision medicine with whoop, and LabCorp integration. My main goal is privacy which is tricky without the right hardware. The whoop is really easy to use from someone with ADHD and 20 years on a fire engine. I need simple.
what do you mean by (My main goal is privacy which is tricky without the right hardware)?
Serious questions:
Why do you try to track it?
Do you want to track it?
I don't know anything more about your condition than a few sentences from Google.
So I don't know if tracking would or would not provide useful information for making daily choices that mitigate symptom or if tracking would have substantial on medical treatment outcomes.
And most importantly, I don't know if tracking will or won't benefit your mental well-being. Everybody copes with chronic disease differently...both the physical /medical dimensions and the emotional/psychological ones. good luck.
Well really im trying to see if anything triggers it, and if it does, I stop the trigger. Maybe something about my food, or how much I sleep, or if I drink caffeine or not is causing some of the pain Im having. But I dont know.
How about using a dedicated paper notebook to log everything that comes to your mind related to this illness?
And also, if the illness is somehow related to food/habits, more or less, then that could also be tracked - like what you're eating and how your body responded afterwards (I mean, within, let's say, 24 hours).
If you are journaling your illness, you might want to do a more complete journal so it is not the only thing to focus on. Keep it as part of a larger record.
Reading thread, as I've been working on something similar for a very moderate use case -- what you eat and how you feel (gas/gut, head, BM) after.
Id love to hear your insights, would you be open to a call?
I’m building ezhealthlog.com for this. Web and iOS. Decently early stages, but my wife and I use this everyday
I use it to manage my GERD/SIBO and joint issues
I have voice rec, typing unstructured text to create structured entries.
Message me johnsimerlink at gmail dot com and I can customize it for you
You can chat with the AI and say “I’ve had headaches at 6pm the last 4 days and foot pain every morning for last 2 weeks” and it will create structured entries for you on each date.
Still kinda buggy tho so it might be easiest to hop on a video call to walk you thru it
I’ll get you free access if you run into the paywall (trying to set up the paywall soon)
> Is this a common experience or do I just have to be better at tracking?
I don't know anything about your illness, but I have Type 1 Diabetes, which is a pretty high maintenance chronic illness. Many T1Ds put a lot of effort into tracking their daily numbers and routines. For example, see all the settings in this popular third party continuous glucose monitoring app[1]. It does all sorts of tracking and monitoring and giving you feedback. My cousin is also T1D and uses some similar app to manage all this stuff, always putting in all her injections and food intakes and CGM data and using that app to make predictions and judgments. It's very useful for her.
I've tried these a couple times and they just don't work for me. I'll keep up with it for like two days and then skip a few entries and then just stop.
I think part of it is, I just don't find the output from all that input very useful. I've been diabetic for more than 20 years so I'm just kinda good at it and don't get much reward for all that effort. But also my personality is very detail-oriented and my daily routine is pretty stable, so for me personally, I just don't get the value from all the tracking that people with other personalities do.
So I guess for your situation, I would ask what you expect to get out of all this effort. Find a way to make the amount of effort you have to put in match the amount of value you want to get out of it. If it requires a ton of effort to do all this tracking and all you get out of it is a couple of charts that you don't care about, then maybe your particular situation doesn't justify spending that effort. If you do actually get some value out of it, but the effort is still too high, then maybe you can find a way to reduce the amount of tracking effort, even if the actual fidelity of the end results is somewhat lower.
Just some ideas from my parallel perspective. Good luck, chronic illnesses are a never ending adventure.
[1] https://navid200.github.io/xDrip/docs/Settings/MainSettings....
Thanks for your perspective. I find these threads really useful especially because alot of the people Im around have never given a thought to chronic illness in general. I think theres just so many things that I feel, and so many small things I do throughout the day, that I feel there should be a connection or unique insight somewhere in order to make my diagnosis or care journey better. So granted, my expectation is really open ended. For something like diabetes (where there is a specific marker to track, this is different), but for seronegative im always second guessing what caused this flare or when did this part start hurting. This being said, thank you!
Try "Tiny Habits" by BJ Fogg. I found it quite interesting and I implemented few habits by using it.
Though there's ADHD and other neurodivergent scenarios, and when you have it making anything of a habit is a hard work.
Is this super different compared to atomic habits?
Hi, ADHD here. I bought Tiny Habits. I tried reading it. Didn't get very far. You can imagine why...
Pen(cil) and Paper. I keep a stock of mini memo pads in various colors for record keeping. This lets you track what you need when you need it. If you find yourself needing more room get an thin a5 notebook.
how do you organize/how do you draw insights from this?
What i did (been doing it for like 5 months so far) is keep track of my day (just using Logseq just type in things like: "5:00 -> 5:30 checking Email" and such .. for the whole day, but i found that when i'm not home there will be some gaps, and that I usully fill back form memroy at the end of the day (which leads to maybe some gaps?)
usully what I do I track (in the md file) day by day: my mood, what I eat, do, play, nootropics, waking up time and all that) and the goal was to see any trends (was planning to do it for like 1-2 weeks but then turned out to in a way keep me gorunded and more aware?) (the last 3 months logs md file was 5k long)
I tried to have a Hermes agent that I talk to throught telegram (had some cron jobs to check in multiple times a day) and some script to pull things like browser data and other data points to see time spent on certain things, and it would generate an md report at the end of the day for that day, but idk, it misses a lot of things (like it hard to tell how many hours I spent on X or Y and such reltative to other day and/or the break down of tasks and such).
for the md file I do upload to Claude or such and then try to find correlation (I dont tend to read it back my self), I did find out that lactose give me bit of a brain fog (that was never too strong that I could tell it's lactose directly) and that when on caffine I tend to think I achevie more than what I actully did (among many other thigns here and there), I also have smart ring data taht I also upload to claude too.
I do use habits app (been using it for like ~5 years but with some gaps.
My main thing that would make me use somethig external is if it pulls data form various sources directly into the logs. like browsing history, sleep data, location data, phone usage hisory, spotify, tempreture, air quality, water drank (Idk maybe usign some smart water bottle or something) and such (althougth it might be iatrogenic)
Yeah I feel the same way about filing from memory. I said this higher up in the thread, but at the end of the day how I really felt is kind of gone, and im filling it in from memory.
The lactose point is exactly what I am trying to work on right now. Do you just upload data or do you have a specific question/md file you use to get that result?
And finally, you mentioned that you are looking for external sources and pulling it into logs. Have any external sources been helpful or? (ex: lactose was from self reported right?)
I use this ai tool that checks in over sms every day, and is more conversational.
https://www.atlasnetwork.org/
The website link isnt working - redirects me to a completely different website.
You can get a guy online to call you every day and yell at you if you didn't do the thing.[0] That's probably what's missing here, some kind of external pressure to do the thing.
At least that's what I've found helpful, I couldn't rely on willpower for long term behavior change, so I just change my environment in a way that makes doing the thing become the path of least resistance.
Or you could tie it to an existing habit like, "I'm not allowed to brush my teeth in the morning until I logged how shit I feel today." But I'd definitely consider just getting the guy who checks "did you do the thing?"
[0] I've seen ads online for people doing this for like $1/day.
I also found this very helpful and refer to it on a regular basis:
https://jamesclear.com/atomic-habits-summary
Im shocked that this is a service, thats really interesting. And yes, ive tried logging based on psychological checkpoints, but I found how I really felt is lost by the time I log something at the end of the day.
You can find people who will do it for free, there are forums dedicated to that. (Called accountability partner, accountability buddy, things like that.)
I set up a project with a friend once, where every evening, for several months straight, we sent each other one piece of creative work. (He'd send me a drawing, I'd send him a song.) This was even more interesting because beforehand we'd send each other a prompt for what to make, so it was always a bit of a fun challenge.
But eventually he lost interest, so if it something you intend to do indefinitely, I'd recommend paying someone, instead of relying on them not getting bored / demotivated.
When he lost interest, the way I solved the problem was by just making a rule for myself: I had to do my task every single day, as soon as I woke up.
I structured my environment to make this inevitable, i.e. every night before bed I'd turn off the internet, turn off my phone, and get things ready for the next morning, so that everything would be smooth and "automatic", even if I stumbled out of bed barely sentient.
Kinda like that hack where you put your running shoes next to your bed, so you step on them as soon as you get out of bed. Or putting an important briefcase in front of the door, so you trip over it on the way out. Environmental design!
What do you need to track? Are you trying to track something like ten different things or just one or two?
It's kind of open ended. Id like to track as many things as possible, so that I can see what instigates a flare, or what leads to my low energy days.
In that case sadly I think it’s just having significant discipline to track the various things. I had to do this for a while because of allergies and it was a lot of effort. However, as someone else has suggested, either getting someone to call you (I basically did this, and it was definitely the easiest way) or maybe you could knock something together with twilio or similar. I considered this, but ultimately didn’t have time so just had someone call me instead.
I also used a lot of the health functions on my iPhone, but those are easy to ignore.
I also used a bunch of smart buttons - so when I drank water I pressed a smart button to log that, I had other smart buttons to log taking specific medications, etc.
The problem is if you’re not motivated to do it (which is often the case if you’re feeling unwell/overwhelmed) then very few systems help.
Considered building something like this over a decade ago (because my mum has chronic health problems that are manageable but require a lot of management) and I'd recently been diagnosed with Chrohn's.
I thought about the design/approach that would work for her and her use case and my own and then I realised I'd be holding peoples most personal data (medical) and realised that I wasn't comfortable building a system that did that or that I could keep it genuinely secure, it simply wasn't a level of risk I was comfortable with and I've worked on/around payment systems etc but that is only money in the end (and the risk would be my employers).
For my personal use case I just have health.md in my `~/personal` dir, I put stuff in with a fixed structure, so I can grep it it later and that's about it.
It seems to work however managing a chronic in illness in the UK is going to be quite different to other countries, here other than tracking your symptoms and remembering appointments (and even then there is the excellent NHS app) etc it's a lot simpler.
I wish you good luck in finding something that does work for you and hopefully others, I've yet to see a system that works for even most chronically ill people.
thanks for the insight. the data risk is something that I havent went into. What would have changed it for you? (local, export and delete, or maybe something where the patient owns the key?)
Separately, Id really like to know what structure you keep your health.md? I go between fixed responses, and free text responses and havent really settled on anything yet.
Seems like the appointment and coordination is mostly handled, which leaves the actual symptom part! Thanks again for your response.
The most important thing is to make this as simple as possible to track.
The more data you have to collect, the more tiresome it becomes. The more tiresome it becomes, the harder it is to build a habit.
Start with one. Then go to two. Then go to three. If you notice you start dropping off again go back to two.
Well fair advice, but this comes from me noticing that Im dropping off. I just didnt notice. how do you catch yourself dropping off?
Why did you quit them?
Tough to notice the omission!
I can liken it down to one thing. First, all the tracking methods were based on habit building, and admittedly I failed in building that habit. Perhaps because of activation energy to get started/remember to do it.
> Im building something for this
You've probably answered your own question here. Welcome to the age of bespoke LLM coded apps where almost everyone can build the thing they want.
Haha fair point - edit: I did build one already, quit that one