[Click on any graph to enlarge]
For the past 4 Remicade cycles, I tracked how many hours I napped per day. Though I know I didn’t manage to record 100% of all naps, my records are reasonably accurate. I dumped them into Excel and thought the results would follow a pattern like this:
or like this:
because I had the general impression for years that I get more and more tired, and can do less and less work, as my Remicade wears off. While my abilities to concentrate on work definitely do follow this pattern, I was surprised to see that my pattern of napping is, well, not what I expected:
The error bars on this and all subsequent graphs are standard error measurements.
Of course, the variation here is huge because there were only 4 Remicade cycles in the data set, so each point on the graph represents the average of only 4 days. But, still, the crazy fluctuation during weeks 4 and 5 (days 21-35) threw me. Then I remembered that in one Remicade cycle, I’d had bronchitis. I removed the 3 days of sleeping off the bronchitis from the data, and the resulting graph is slightly less weird:
Then I got the brainwave that I tend to sleep more on the weekends than on weekdays. I know that I’ve introduced a certain amount of error in my data tracking here because I did not count sleeping in as nap time, even though the number of hours I sleep per day on weekends tends — I think! — to be higher than the number of hours I sleep per day during the week. When I was counting naps, I only counted the number of hours I slept after I had already woken up, gotten dressed, eaten breakfast, etc.
Anyway, taking all that into consideration, here’s the same graph as the one above, but with the weekends marked. Note that I always get Remicade on a Thursday — shown as day 0 on all graphs — so weekends fall in the middle of the treatment cycle “weeks”:
This graph shows a massive overlap in the number of hours I spend napping on the weekdays and weekends in every week of the Remicade cycle. Also, rather strangely, it shows that the week that I tend to sleep the least is one of the weeks in which I feel most tired: week 6.
So what does this all mean?
I think what’s going on is that:
- the naps on the two days immediately after the Remicade infusion are related to steroid withdrawal;
- I’m generally pretty active in weeks 1, 2, and 3 after treatment (days 3-21 on most of the graphs) and have more control over when I nap, so I’m napping, but it’s not interfering with work too much;
- all of that activity in weeks 1-3 tends to catch up with me by week 4 (days 22-27 on the graph), and by week 5, I start getting multiple Crohn’s symptoms, including mouth ulcers and rashes and arthritis. I tend to decrease my activity levels in week 5 to prevent the fatigue from getting too bad, but I end up having to nap anyway;
- in weeks 6 and 7 (days 35-49), I’m generally too tired to be active. I tend to sit around a lot during week 6, which helps me avoid getting so tired that I need to nap, but by week 7, I’m napping a lot despite my low activity levels. I also get overwhelmingly tired more suddenly and have less control over when I fall asleep.
Unfortunately, I tracked only the time I spent napping, so these graphs don’t take into account the modifications I make to my activity levels to balance my obligations with my degree of fatigue or the loss of control I experience over nap times as my Remicade wears off.
The take-home message from this Excel blowout is that I need to track my activity levels as well in order to show that my interpretation of my napping patterns makes as much sense as I think it does!
Maybe I should borrow or buy one of those quantified self wristband things . . .