April 8, 2013
That was the day something dawned on me: I’m slipping and my MS is getting worse. What I couldn’t tell you was how it was getting worse, what was changing, or what I am doing to cause/prevent/manage those changes. It was a little more than 5 month since my last release from the hospital. Meningitis had been the latest twist; a reaction from my then-newest medication, Gilenya. After 12 years of ‘stable’ treatment on Avonex I was riding the medication merry-go-round. In two years I went from Avonex (leg infections), to Tysabri (anaphylactic shock), to Gilenya (meningitis), and finally Rebif. My body was rejecting all medications available in the most imaginative ways possible! Maybe I was still reeling from effects of the meningitis, maybe I was experiencing a new exacerbation, or maybe something else was going on. Maybe was my new default diagnosis. I had no control.
Everyone with MS has those moments when you feel you have no control in this at all. I didn’t like that, nor did I tolerate it well (I never do). I started to push back for answers. In order to get answers I needed data to ask the right questions. That was the path to control, so the first step was to collect data. I have over 2,700 pages of medical history from the Army and the VA Hospital. That’s a lot of medical testing, evaluations, treatments, prescriptions, summaries, and appointments. Over 2,700 pages that were of zero value to me at the time. I needed to know details, the smallest details of every day.
April 8, 2013 was Day #1. I started tracking every aspect of my life. Sleep, exercise, activities, and diet were all logged in detail. Even mediations, treatments, and the weather were logged! I graded myself every day with a subjective score, a comparison to a set point in time when I was “100%”. On August 4, 2012 I rode strong with Team Amulet for BikeMS. After recovery from my broken leg the year before, being able to ride 82 miles in 103⁰ heat was a signal that my body was back. I had MS but I was strong; I was winning the fight! Ever since, I have never felt as strong as I did that day….
So I started tracking; I continue tracking data every day. There are good days and bad days, busy days and lazy days. All the while I track all the details that I can. As of July 6, 2014 I have collected 16,422 points of data and extrapolations. I run these numbers through a few spreadsheet tables. This is my source for analysis and hopefully a few answers. With my MS, this new world of ‘maybe’ has a bit more statistical clarity.
The details, my details, are not as important to share as the themes. What I have learned is that patterns and routines rule my days. After 455 days I can find the repeated patterns that make for a 77% great day versus a 70% rough day. That’s my playground, 70-77%. I work to avoid the drastic swings and lows of recurring ailments, and to avoid the need for artificial highs of new medication treatments. I’m always striving to break 80%; I even had an 85% one day (June 29, 2013: aah, that was a great day). All the while I try and learn what will prevent the horrors of April 10, 2013 (55%).
MS is unpredictable. It can be hard to say what causes a good day or a bad day. What I am trying to do is take back some of the control. The data gives me some clarity. I can usually tell you what will make my day better or worse. My goal is to find patterns that work and stick with them. There are bad combinations of life that I’ve learned to avoid while always trying to replicate good ones, and maybe find something new.
16,422 points have taught me so much about my body and my MS. I am aware of the effect that many ‘factors’ have on my health, more than I have ever been before. Some seem obvious, but soon after learning how proper diet and strong exercise were good for me I dove into cause-and-effect patterns that even make my neurologist say “Wow!” and press for more data.
It’s nice to have some control over my MS!
…besides, I think Brie finds it adorable being married to someone who strives to live the same schedule over and over (and over) again!
Kevin Byrne - Portland, OR