It’s time for a new experiment! Earlier this week, I had an appointment with my primary care doctor in which I was lamenting the fact that monitoring my activity level to prevent flare-ups has been my greatest challenge.
For my particular condition and my specific individual situation, I truly believe that avoiding flare-ups is possible. Although minor flare-ups often happen for reasons unknown to me, all of my major flares have been preceded by some instigating event. One step in the wrong direction, one activity too many, and I find myself falling backward, yet again, into weeks or months of horribly increased pain levels. Each time I am able to look back and see the cascade of events, culminating in one triggering event, that led to my downfall.
With that being said, at the suggestion of my doctor, I am starting a new plan. The new plan is to track and monitor all of my activities. My doctor suggested that I somehow quantify each of my activities and keep track of them each day. In that way, I will be able to somewhat objectively measure how much I am capable of doing, which will enable me to more accurately assess what I should or shouldn’t do on any given day.
I hope this is making sense so far.
So, I took the time to go through all of my normal daily activities, assigning each one a number of points based on how much they affect me and how much energy I believe I exert doing them:
That is just a sample of all the activities I quantified. Each day, I will track and add up all the activities that I have completed, and each week I will add up a total of all activities for that week. That way, I will be able to keep track of my activity level on both a daily and weekly basis, as some days I am forced into more activity due to work and other days I use as rest days.
Here is a sample of my excel spreadsheet where I am tracking everything. (Click for a clearer view).
For each day, I am also keeping track of a variety of symptoms, my pain levels, any medicines and supplements taken, what I ate, any physical therapy or other appointments I went to, and any other pertinent information that might come up. Today is the fifth day I have kept track, and I am averaging between 50-60 points each day. Each week, I will try to increase my total points by a small amount.
I am just getting started on this new experiment, but I am hoping this new tracking experiment will help me in the following ways:
- Detect Imperceptible Increases in Activity
The increases in activity levels that lead to my flare-ups are often imperceptible to me until after the fact. If I can accurately quantify how each activity affects me, I hopefully won’t have the increased activity level creep up on me over a few days’ time, ending in a crash. Hopefully the numbers will show me when I am doing more than usual and need to slow down even if I am feeling fine in the moment. Oftentimes I will feel fine one hour and crash the next, so perhaps the numbers will give me a heads up before I feel it coming on.
This type of tracking is especially suited for me because my body is in a place of extreme sensitivity. I have to increase my activity level by tiny, incremental steps to make progress. If I increase by a step that is a tiny bit too big, I will go into a major flare. I am not trying to avoid all pain increases, just the long term flares that last for months at a time.
- Eliminate the Need to Agonize over Activity Choice
Hopefully this tracking system will help me with all the scenarios in which I am agonizing over whether I should complete an activity or not. For example, pretend I want to go out with my friends, and I am deciding if I think it will send me into a major flare or not. It will take a total of 30 minutes (6pt) to drive to the location and back, and I would plan to stay for two hours (30pt), which totals 36pts in all. If I have already used up 40 pts that day, I would realize that going would bring me up to 76 pts, which is way above my average pts for each day this week. I would immediately know that going out with my friends was not a good idea.
- Provide Objective Information to Present to Doctors
One of the reasons my doctor suggested this system is so that I can provide objective information for her to look over to help me see any patterns and to aid in my treatment plan. Any time we add a medication or other treatment strategy, I will be able to record it and see how it affects my pain and activity levels. I can also see this being a great tool to show to the doctor in any situation in which they might need to sign paperwork saying you are not capable of participating in something. For example, jury duty. I have had fears of this situation coming up again, but I believe if I was able to show my doctor objective information that I am not able to sit up for eight hours a day, and if I do there are serious consequences, she would be more comfortable signing something like that for me once again.
- Give Hope for Improvement
Just the fact that I am trying something new is giving me hope. In the back of my head, I keep thinking that if I can keep consistent progress over a really long period of time without any of these flare-ups I have to crawl out of, maybe I won’t have to deal with this level of pain for the rest of my life.
I don’t know why or how or where it comes from, but I have this crazy hope that one day I will climb out of this for good. Well, not for good. I believe this will always be a part of my life. I will always have to do my exercises, eat healthy, and monitor my activity. But, I truly believe I can move to a place in which this is not ruling my life so completely. Hopefully this new plan will face me in the right direction!