My Symptom Tracking Method
I used to loathe the idea of symptom tracking. It stressed me out to think of making a list of all the parts of my body that felt like they were on fire and all the reasons that might be the case.
Fatigue, pain, and endless brain fog mark each and every day in some way for me. I’m sure it’s the same for you. Even when I’m not in a flare-up and things are generally going OK, ankylosing spondylitis has its way of creeping up through the cracks like a little shadow following you around. So, keeping a symptom tracker just felt like I was perpetually observing the darkness.
But when my flareups became more frequent, I wanted to see if there was anything at the root. It was this need to understand that reframed my mindset about symptom tracking. Instead of thinking about tracking symptoms as a chore or a burden or a vessel through which I would stare at my life‘s greatest burden, I started thinking about it as a way of reclaiming autonomy over my own body and taking the initiative to take care of myself.
If I understood why I was in a flare-up, maybe there were some ways that I could prevent it?
First up: There are plenty of symptom tracker apps that you can download. There’s AS Healthy Storylines and Chronic Insights (made by our own James Allen!). There are also plenty of generic symptom trackers out there that you can use.
I tried hand-writing in my journal, but honestly, it made my hands hurt. So I started using talk-to-text on my phone to add info to my Notes app on my iPhone. This may not be the best method for you, so experiment with what works!
Each day I answer the following questions:
- Am I in a flare up?
- What I eat that day
- My mood
- My stress levels
- How much work I am doing and how often I have been sitting in a sedentary position
- How active I have been on that day
- How much pleasure or time off I’ve had for rest
- How many hours I slept
- Medicine I’ve taken
- Alcohol imbibed
You can add any triggers that pertain to you! It seems like a lot, but each category only requires a few quick answers. The point isn’t to mindlessly write things down, but to record honestly and look at the days leading up to a flare.
When the flare hits, you can usually see a trail of breadcrumbs to that pain point
Maybe it was constant working. Maybe it was not working out enough. Maybe it was not getting enough sleep. Maybe it was being stressed over a life event or, you know, the whole entire world.
Although our flares sometimes have no rhyme or reason, I do think it is important to understand that they do sometimes have triggers. I also think it's just wise to remain accountable to ourselves.
By keeping a symptom tracker, I’m able to check in with myself for a few minutes every day right before bed. It helps me take stock of how I’ve been taking care of myself as well.
How much about your AS do you share with others?