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
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