For a while now I’ve been looking for ways to track my symptoms and triggers to try to better manage my illness. I’ve tried journals and apps and activity trackers but I always find that I either find it too hard to record everything or it becomes difficult to analyze my data to find any meaningful patterns.
I already understand the basics – too much activity means more symptoms, but l want to get a finer grained understanding of the relationship between my symptoms and activities. At the moment I have a limited understanding of the relationship between my symptoms and my diet, or whether my limitations are best measured in time or calories (it’s probably time, being a factor of lactic acid build up and things like blood oxygen saturation).
I upgraded my cellphone a couple of days ago to a second hand Samsung S6 (yay for $1 reserve TradeMe auctions). The phone has some issues at the moment, but I’m hoping that they can be sorted out because it’s already proving to be a useful tool. The S6 has a heart rate monitor next to the camera, and a built in fitness app that helps track steps/activity, stress, diet, heart rate, blood oxygen saturation, and (with something to measure it) blood pressure. I could probably also do similar with an activity tracker bracelet and app but this is what I have available, so it’s what I’ll use. It’s not perfect, but it should be helpful.
I tried using a symptom tracking app along side the Samsung health app, but I found that it didn’t function the way I need and didn’t include any multivariate analysis, just “does trigger A affect symptom X?” which is of limited use in a complex illness like this. I could probably just rate my total symptom level out of 5 and track triggers, but again it’s single trigger only and +/- rather than degrees… which doesn’t feel useful in my case.
That’s where the soccer mums come in…
Just to be clear from the start, I know that bullet journals are a powerful tool used by people of all walks of life, sometimes whether they know it or not. Any criticisms I have are of the Pinterest, and the blogs that appear in such volume on that site, not the tool itself or the people who use it.
I don’t care if you use it to track your laundry schedule, I may well end up adding a page or two to help there. The problem was that every blog about how to use a bullet journal was focused on drawing pretty pictures of water glasses every day and keeping on top of weekly laundry schedules (who has a set day each week for washing whites?), I didn’t feel it was being presented as a tool that would be useful to me. It looked to me like it was being used as a grown up version of a sticker chart.
I have wanted to try using a bullet journal for some time, but Pinterest put me off. When I first came across Bullet Journals, or Boju, a couple of years back, it felt like it would be a useful tool, because it’s not far off what I already use to organise myself. I tried to find inspiration and ideas for how to use it and google gave me a range of Pinterest pages to check out (pro tip -pinterest is a very useful search term). On these pages I was presented with hundreds of pins dedicated to painstakingly designed, calligraphied, and coloured pages dedicated to organising a household and keeping track of the weekly laundry schedule, rather than useful (to me) page design suggestions. Intuitively, I could see that it could be helpful and it is simple enough that I might be able to stick with it, but there were just no designs that showed my fogged up brain what to do (and I’m not often in a state to come up with something myself).
A week or so ago I went looking for symptom tracker templates to use, with the plan to adapt these, print a bunch, then bind them into a notebook for myself. In this search I found that in the time since I abandoned the idea of ‘Bujo’, a whole new catalogue of page ideas have made their way to the intertubes and even onto Pinterest. Looking at these, and other tracker templates, gave me some ideas… I can easily track my most common symptoms (with a level of severity if I want), suspected triggers (again, with levels), and suspected ‘anti-triggers’, that is things that could be seen as mitigating factors, ‘treatments’, or helpful behaviours, all with levels as appropriate. From there I can plot them on graphs and even do multivariate analysis if I think I can see a trend appearing.
I found a graph paper exercise book in my cupboard that clearly I had failed to use it for whatever purpose it was originally intended, so it will serve me as a prototype bullet journal. When I’m happy with the layouts, I’ll go ahead and print them for binding so I don’t have to rewrite the list every month. I’ll add other page templates and blank pages too, so I can use it for more than just symptom management.
So… here is what I have as my starting point (I’ve added lines and filled in more since taking the photos). You can see that today was a good day with limited symptoms, all being fairly mild.
Yeah, I found some coloured pens to use…mostly because they had a nice fine fibre tip that would mean I could write small and still read it. A plain biro, will do, but I probably won’t use my preferred fountain pens on this paper as they’ll bleed through and aren’t great for fine detail type writing.
Remember, if you’re thinking of using Bujo yourself, it’s not about pretty page designs, fancy borders and layouts, or elaborately drawn pictographs for you to fill in. If you like those, that’s great, but if you don’t have the time, energy, or creativity to draw 30 different book covers for your reading list, then don’t feel like you should. The point is to make it a useful tool to you.
I have also written a page of FODMAP and nightshade foods. I’ve included these because many people say that these are triggers for them. I’ve done this because I included FODMAP and Nightshade foods to he triggers lists and I need to check what those are sometimes. As there are so many, I doubt I’ll be able to see anything useful from that tick box alone, but we’ll see.
I may try cutting nightshades and/or FODMAP food entirely at some point or working on an elimination diet to work out what foods might be harmful to me. At the moment I don’t eat much wheat because it upsets my stomach if I eat too much of it (I’ve used ‘gluten’ as shorthand for wheat and related grains. I know it’s technically incorrect, but for my purposes I know what I mean), and I have to avoid shellfish after the food poisoning incident, and I’m definitely allergic to some soy products and to kiwifruit.
When I have a bit more filled in I’ll play with graphing the data.
Do you use Bujo or other tracking systems? How do you find it?