Being Disabled: How I Track My Symptoms and Other Factors

It's not just about pain.

Photo by James Orr on Unsplash

Fibromyalgia is a very complex and little understood disorder. It has a lot of common and sometimes weird symptoms, and it has several comorbidities. While managing symptoms is fine, being able to track symptoms and other factors and being able to drill down into that data can improve quality of life even further. It has been especially helpful for me in finding out which foods aggravate my pain and my GI symptoms. (Turns out that, as a vegetarian who prioritize veganism, it’s most of what I eat!)

I don’t use a smart watch to track. I don’t think it would track the right things for my situation, and I have a habit of causing watches not to work. I track using an app on my phone. It’s called Bearable (I’m not being paid by them, but I highly highly recommend it. It’s very customizable!) I can track anything from what I eat to my medications to each daily activity! You can add and group factors and symptoms, etc to your heart’s content. They also frequently ask the users for input on improvements and updates they are making and even have a Discord server where people can give input to the team, chat, and compare notes. You get graphs of your data and can run experiments. Even if you just use the free version, you get a lot. I pay about $30/year for it, and it’s worth every penny!

Within the nutrition section, I have added factors like “caffeine” and “sugar.” These are there for when I have extra caffeine or sugar. Most days, I start with a cup of something caffeinated. I don’t track that. If I have a second cup later in the day, however, I do track that. Same thing with sugar. My diet has a certain amount, but sometimes I indulge in extra treats. That is what I track. I’ve written in the past, I believe, about how I use coffee as medicine (those would be the times that I have that second cup.) Tracking that helps me to see when extra caffeine is affecting my sleep. Sugar can affect my pain levels, tremors, or GI issues. When I find that I’m consuming too much of either food, I can cut back on it, and that helps my symptoms. I am currently actively tracking oily foods, for my GI issues, and nightshades (which comprise most of my favorite foods) for all over pain. Do I always follow the advice suggested by the data? Of course not! Does anyone? That said, I can cut back on those foods when I know I need to function at my best.

I also track my activities throughout the day. There are things that I do just about everyday, like laundry and doing the dishes. I don’t track those. I do, however, track other chores, like hanging the laundry outside, cleaning the cat box, and changing the bed. Though these are also normal chores that I do, they are more physical. Tracking them enables me to see when I need to delegate a chore or do it less often. (I typically only do laundry every other day, but sometimes, it piles up.) I track my spiritual practice and time spent in the studio. Doing activities that relax me and make me happy, even when they are physically strenuous, helps my mental health and can help with my pain levels.

I track when I have to make phone calls. (Those times when it’s more than just a quick phone call or more than one.) Talking on the phone actually tires me out physically, and depending on how easy or hard the call is or how much detail there is to cover, it can affect my anxiety levels, as well.

I not only track when I smoke pot or drink it as tea, but I track each separate cannabinoid that I consume. Some are better for sleep or relaxation. Others are better for physical pain or anxiety.

Tracking everything in such fine detail allows me to track my overall health and symptoms, and it also helps me track my time. If I forget what I did on a previous day and “where those three hours went,” I can look back at that day and see that, “Oh. That’s right. I had to work that day, and then I cleaned up the yard.”

The biggest reason that I track, though, is that when it comes right down to it, as someone who sufferes from a complicated illness, it’s up to me to identify and manage my symptoms. I can’t run to the doctor everytime I have IC pain or every time my bad ankle acts up. If I know what causes or helps those things, I can simply adjust what I am doing or eating. Doctors just aren’t as engaged, as a whole, as they used to be. They are overworked, not granted enough time with their patients, and facilities are understaffed. Disabled people just aren’t getting sufficient care from the medical world, so whatever we can manage on our own helps. That is not to say that I’m OK with this. I’m really not. Unfortunately, it’s out of my control. And I say this as someone who has a pretty good medical team! At the same time, tracking makes you better armed when you do go to the doctor. I have, many times, whipped out my phone to show my doctors various charts, and it’s been very helpful! They can see that I’m on top of my day to day health, and it often sparks a targeted conversation.

So, if you are someone with a disability/complicated illness, I recommend finding a way to track your factors by whatever method you choose. I journal will do, if you’re not someone who wants to use an app or doesn’t have access to that, for whatever reason. Before I started using my app, I was tracking my sleep patterns on paper with colored pencil. (I was so glad when I could stop doing that!)

In an ideal world, we wouldn’t need to do that, but we don’t live in that world. Tracking can be a very powerful tool.