Ask HN: I've quit six systems for tracking my illness. What works?

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.

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.

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....

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.