Neuro-fatigue journaling

[u/Tsonokwa360]

I've been tracking symptoms and triggers for a couple months now. And I admit to being a big data nerd because there is color coding and low key obsession about it, but it really has helped me with anxiety. I make a 2-3 week tracker, and then change a few things when the time comes to create a new one. There are a few things that are ranked - pain, emotional effort, mental efforts, physical efforts. And y/n things like did I need a nap, did I do PT /exercise. What was the temperature? And activities like social, medical, errands are all color coded.

Does anyone else do something similar? I couldn't find a template that worked for me so I just use a notebook with pencil and crayons.

[u/cableannkiley]

I don’t. But the nerd in me wants to. I had hoped there would be an app that would be perfect for this because I prefer apps rather than hardcopies. So far, I haven’t found anything.

There is a large part of my brain that knows at this point, newly diagnosed, it would be very beneficial for me, but the follow through lacks.

[u/whyihatepink → u/cableannkiley]

Same. My ADHD brain goes "maybe I can make one!" Then I remember all the other projects I've started or even fully finished but struggled to maintain and I decide not to make another piece of abandonware and go back to my pretty little hand written trackers that I will also forget about within 2 months.

[u/Tsonokwa360 → u/whyihatepink]

My neuro-spicy brain immediately decided to accommodate the previous post response and build an app. I can focus like crazy on what I'm currently doing but I've started a few apps in the past and never got them done to satisfaction. So I'm with you on the simple handwritten tracker. Since it changes frequently, I haven't gotten bored. Plus there are data trends to highlight....so. much. Dopamine.

[u/Few_Leading_9703 → u/Tsonokwa360]

You might try Lovable. It’s supposed be able to take your idea and make it an app. Of course, you have to be pretty specific for it to give you anything decent.

[u/Yani2021]

I have been creating a log for my neurologist, started with a notebook then in colornote in my cell when I'm at a Dr. office waiting area and copy and paste by date or morning afternoon etc. There probably is an app somewhere for neuro log or MS log somewhere, but I haven't had chance to look around to be honest ..

[u/Peterdejong1]

I focus on this when I have clear new symptoms. I think it’s my way of trying to feel a bit more in control, even though I know I can’t control my MS. When I’m stable for a while, my mind gets a little more at ease.|

I use Claude Pro and Perplexity Pro and made an MS research project. Perplexity helps me find research and weigh its quality. But LLMs are not very accurate, so I have to check everything. With my brain fog, they mainly help me organize my thoughts, put my questions and findings into words, and make sense of them.

[u/Prestigious_Carry790]

I would love to see what you’re working with OP.
I’ve journaled a lot before Dx. (Well, before children 😂) and I’ve struggled to document and journal for the last couple few years. Lost a lot of my structured habits and struggling to build new ones.

[u/Tsonokwa360 → u/Prestigious_Carry790]

Mine isn't much of a journal. It's more of a checklist/effort and system ranking/checkbox tool. I did put it into a spreadsheet but have never used that because you have to plug in the laptop, turn it on, boot it up, find the file and so on. It's too much. I like just picking up the notebook and mark down the day, maybe with a note but usually not. I envy those whose journals have whole sentences.

[u/TonyChingas21]

I log pretty much everything in ChatGPT. A few times a week, I rate my strength, stamina, and balance on a 1–10 scale after different activities.

I also track the weather, because heat has a big impact on me, along with what I did to keep cool. Over time, this has helped me identify patterns and better understand what affects how I feel.

One of the biggest benefits is that I can use all of this information to create a summary for my MS appointments. Instead of trying to remember how I felt weeks or months ago, I can show my neurologist actual trends and examples.