If you’re a rare or chronic illness patient, you’re probably accustomed to tweaking your schedule, eating habits, exercise routines, and even your chores and social life. Even when your life does go according to plan—your symptoms may not. One moment you might feel fine and the next you’ll be looking at a weeklong hospital stay.
In the beginning, I struggled to balance my symptoms with running a business and trying to maintain friendships. My disease took a lot out of me and at the end of the day, no matter how much I may have wanted to go out and meet a friend or take a business meeting in person, catering to my symptoms had to come first.
I decided what I really needed was to get organized. I sat down with my laptop and started a data collection on my own life.
Bizarrely, Facebook was one of my best resources in collecting data about my health. I would frequently post status updates when I had migraines or when I was excited to be able to work out that day. I had collected a lot of information in my timeline. I had taken pictures of the foods I ate, the long work days, the sudden onset of symptoms, even the 3AM posts that appeared when pain kept me up all night.
My Google Calendar, which I couldn’t survive without, was also a great tool. My whole health history —including doctor appointments, times and dates to pick up medications, nights where I may have gone to a party and had a drink, was already laid out for me.
When your disease comes in waves, you may be able to find a pattern you didn’t notice before. For instance, I realized that my migraines were occurring just as my weekly medications were running out. On weeks that I was able to exercise more often, I was also able to attend more meetings and social activities.
You may not have such an obvious pattern, but here are a few questions to ask yourself after each regular activity, treatment, or night of sleep:
- How difficult was the actual activity for me? Was I fatigued and pushing myself anyways?
- Did I do this activity on a full or empty stomach? Was I hydrated? If it was a medication, did I drink the amount of water recommended to drink with it on the label?
- Did I wake up feeling lethargic after a night of sleep? How many hours did I get? What medications did I take (or forget to take) before I went to bed?
Here are some categories you may want to organize data on:
Meals: There are very few chronic illnesses that aren’t affected by the food we eat. Keeping a log of what you ate and at what time you ate it, can have produce familiar patterns. The same can be said for measuring how much fluid intake you’re getting daily.
Exercise: Recording your exercise routines may be an obvious one (if you woke up feeling stiff and achy, it has to be from the 50 burpies, right?) But even small amounts of exercise for those with more sensitive conditions can cause residual pain. Consider recording thing like how often you lift heavy loads of laundry, how long you walk the dog for, and even how many hours you browse during a trip to the mall.
Sleep: Sleep can deeply impact the intensity of a flare up. Both the kind and the amount of sleep you’re getting should be measured to check for variables that you can adjust.
Event/Stress: Stress always impacts us physically. Things like holidays and birthdays, big deadlines and social drama can leave you feeling drained and overwhelmed. It’s important to see how these events correspond with the intensity of your symptoms.
Wondering how to keep track of all of these categories? Here are some tools that can help you stay organized:
Food Diaries: App’s like MyFitnessPal can help you keep a log of what you’ve eaten during the day. You can also use an old-fashioned notebook or an Excel document to track the type of food you ate, what time you ate it, how many calories it had and whether or not it was dairy or gluten free.
Online Calendar: A Google Calendar can easily allow you to see what you had for dinner last Tuesday. Mark your meals, exercise routine, and major events so you can look back and see what might have impacted your current symptoms.
Social Media: Can Facebook really help measure the intensity of your flares? If you frequently check-in at restaurants, doctor’s offices, gyms or bars—you can keep a steady track of activities that may have caused a flare. Using your timeline, Twitter, and even just taking a quick look through your texts may remind you of a trigger.
You might find that your life is already well-documented. With a little research, finding the pattern problems in your health might be as easy as logging in.