Following are two sets of charts describing my pain: one set for January 2008 (six months into my condition) and another set for January 2009. Each set contains two charts: a spreadsheet and a graph. Each spreadsheet includes three sections: (1) Symptoms, (2) Treatments, and (3) Daily Management. The Symptoms section specifies both the pain-level rating and the percentage of the day the pain persisted, and this data is displayed in the corresponding graph. For clarity, these example spreadsheets and graphs show only the data related to the bladder.
At every visit and often many times a week, a different caregiver would ask, “How have you been doing since our last visit? How is your pain?” Things often fluctuated a lot during the week, and I didn’t want to have to remember all that information. So every night I rated my pain and symptoms on my chart. Then, to answer my caregiver’s question, I just showed them my chart or summarized the data verbally.
I also brought my spreadsheet to my monthly follow-up visits with my different caregivers. Instead of just a general idea of whether my pain was worse, the same, or better, my caregivers could see my pain in a clear, objective, and graphic form.
My spreadsheet and graph were invaluable tools for seeing the general trend of my condition, because my progress was slow and tended to wax and wane. It was unclear how I was doing day to day or even week to week, but when I looked at my status over the months or years, my progress was obvious.
It is important to chart the symptom(s) that impact your life the most and that change over time. Tracking both the average level of pain (1–10) and the percentage of the day you are in pain (1 = 10% of the day and 10 = 100% of the day) can capture your pain experience for the day.
If you have more than one area of pain, it is wise to chart them separately. I kept track of my two main areas of pain—the bladder and pelvic-floor muscles—as well as my urinary frequency. For clarity, these example spreadsheets and graphs show only the data related to the bladder.
Include other symptoms (beyond pain) if they are bothersome. For example, initially, I recorded how often I urinated during a 24-hour period because urinary frequency is a common symptom of BPS/IC. On my chart, 4 indicated the typical number of voidings over a 24-hour period (usually, once a night and every three to four hours during the day), and any number above 4 indicated I was voiding more frequently.
Consider tracking other physical issues to see if they are a factor related to your pain. For example, I kept track of the days of my menstrual cycle to see whether my pain cycled with these monthly body changes.
The treatments section allowed me to keep track of which therapies I attended on a specific day. I could then look at my pain levels for that day or the next day to see whether there was a trend. This gave me information about whether certain treatments were effective in decreasing my pain.
The daily management section allowed me to see whether my medications and self-treatment activities corresponded to a decrease in pain over time. In addition, this was a reminder to keep up with my home program.
As the condition changes over time, it is important to modify the factors that are recorded on the spreadsheet. For example, several changes were made in my second year spreadsheet. I began seeing a massage therapist, and kept track of these visits. I also began to chart my stress levels and my gastrointestinal symptoms more closely, using the symbols G (gas), D (diarrhea), and C (constipation).
If the level of detail in my charts is overwhelming, you can simplify yours. The main thing to include in your chart is the level (1–10) of the physical symptom(s) that affects your life the most and changes over time. In addition, mark the dates when treatments are started or stopped. Keep in mind that a chart doesn’t need to be complicated or made on a computer to capture valuable information about your condition and to effectively communicate your experience with your caregivers.