A Chronic Illness Observed (Through Data)
Setting the stage
One of the things you get to do when you're a chronically ill tech worker is create data about your illness! I'll leave the philosophical musings about whether this data collection is ultimately beneficial for another post, so for now let's enjoy some data analysis and craft a few (potentially spurious) narratives.
Each day for the last year and a half (5-Aug-2020 to 9-Mar-2022), I've rated a series of six symptoms on a scale from 1-3, where higher is better: nausea/malaise, energy, depression/anxiety, brain fog, sinus, and headache. I've found this scale is about as much nuance as I'm able to provide consistently. I don't take any number down to 0, meaning the lowest "total" possible is 6, and the highest is 18.
Now, a 6-18 point scale isn't the most accessible system, so in order to tease out a more normalized measure of overall "wellness," I've recently started assigning a flat percentage to my health for the day.
With that new percentage overlay, here are the associations I've observed:
18 (95-100%)
17 (90-95%)
16 (85-90%)
15 (80-85%)
14 (65-80%)
13 (60-75%)
12 (50-60%)
11 (55-60%)
I haven't had any days at 10 or below (thankfully), so no data below that, and this only represents correlations for the last three weeks and change.
The first thing you'll notice is that the relationship between overall percentage and total symptom score isn't quite linear: bigger ranges emerge for the 12-14 symptom scores than for the higher scores. My interpretation of this is that for certain symptoms (esp. energy and malaise), while it’s only possible for them to contribute a drop of a point or two in the symptom score, can have an outsized effect on how poorly I end up feeling that day. Other symptoms, like a bad headache, can be treated with ibuprofen (especially now that headaches are less common) and not drag down my whole day. There are probably some weights hidden in the data that I could tease out, but haven't done yet.
Another thing we see is that the data, while overlapping, at least stairstep downward in a way that we would expect, except when we get to 11, which squats squarely on top of territory staked out by 12. However, the "11" symptom score only had a couple of examples behind it over this period, not enough to form a solid range. Fortunately, the averages I work with below don’t rely on a solid perspective on that data point.
A narrative timeline
For this narrative timeline, I'm going to deal in average point totals that range from 12-15. That gives us a low end average of 50% and a high end average of 85%. I don't believe an average symptom score of 15 truly corresponds to 85% or even 80% wellness. It's more likely 5-10 percentage points below that, for reasons I'll discuss at the end. Also, note that this new percentage is a very recent overlay, so we must take it with a grain of salt when using it to interpret these historical data.
5-Aug-2020 to 7-Dec-2020 (125 days): For the three-and-a-half months before I started Disulfiram, and for the two weeks while I ramped onto DSF, my average symptom score was right at a 12.
8-Dec-2020 to 15-Mar-2021 (98 days): I reached one DSF pill/day (62.5mg) and my health took a rapid, significant upturn; I averaged a score of 14 for the next several months. During that time I did try to up my DSF dose to two pills/day (125mg) but encountered significant nausea and other setbacks while doing that, so ultimately dropped back to one.
16-Mar-2021 to 5-May-2021 (51 days): Things began trending down again in mid-March, and I averaged a 12.8 until early May. I decided during this time to try to come off of DSF as I’d heard reports of folks experiencing greater benefits after coming off of DSF than while on it, so the last three weeks of this period was spent gradually weaning off of DSF.
6-May-2021 to 19-Sep-2021 (137 days): Once all the way off DSF, it was clear that my health was worse than ever. I decided to get back on DSF and committed to reaching a significantly higher dose (four pills/day, 250mg total), as I’d heard anecdotally that folks experienced enduring results/remission at those higher doses. I started feeling much better as soon as I got back on DSF, and that largely persisted through the journey of working up to four pills/day. I averaged a 14.5 symptom score through this period.
20-Sep-2021 to 3-Feb-2022 (137 days): I spent five months at my peak DSF dose of four pills/day and was feeling even better, averaging 15. However, for the last 80 days of this period I did notice a dip, back down to averaging 14.5, which I interpreted as a sign that DSF wasn't going to take me any further, and that I may in fact have been losing some ground.
4-Feb-2022 to 9-Mar-2022 (33 days): Having accomplished what I set out to do at four pills/day sustained over five months, it was time to start ramping off. It was here that I decided to start the Vital Plan herbal protocol as a comprehensive reboot of my body’s systems, and to take over from DSF while I ramped off. For these past 5 weeks, I've been averaging a 14.2. I have fewer really good days, especially in a row, but I believe this is due to the significant level of disruption that the herbs are bringing. I've had large herx reactions, major mood and energy disruptions, and other big shifts in my sinus/headache patterns, which are all positive signs from my perspective.
Discussion
Now, a few notes. The first thing I must acknowledge is that where I start and stop the averages is a highly significant choice, and reflects an already present narrative. I most certainly began this exercise from an intrinsic sense of how this journey played out, and the data bend accordingly. I don’t believe I outright abused the data in shaping this narrative, but they might report feeling a bit put-upon (if you could ask them).
Next, there is definitely some inconsistency in the way I rate symptoms, especially over these long stretches of time. I believe that once I started feeling better on DSF I had a tendency to rate my symptoms higher than I would now simply because of the anchoring effect: being accustomed to feeling worse. In fact, at many points along the journey, I've been inclined to rate things more highly because I believe in whatever treatment I'm on. This is likely part of what we see in the placebo effect. I also suspect that, up until more recently, I’ve consistently rated my "Depression/Anxiety" stat more favorably until it became very obvious to me that I wasn't doing well in that category, but it took being hit upside the head with it before I'd start to drop the rating. I'm now much more clued into how I'm doing in that regard, so have been more likely to report middling scores.
There's also a dynamic where you have to know (or remember) how good it's *possible* to feel in order to accurately assess how well you're doing relative to that standard. Going long periods of time in chronic illness has often led me to overestimate how good my good days are. Only when I get breakthrough glimpses of really good health am I reminded that even many of my relatively good days are still challenging, which is a sobering insight. Starting Vital Plan has been the latest thing to revitalize my awareness of how good it's possible to feel, which serves as both a reminder that my assessments have been inflated in the past, and a spur on to greater health.
All that being said, it seems clear in both the data and my lived sense-experience that I got a significant lift from DSF. It also seems clear that I lost ground over time, no matter the dose I leveled off at. This trend is ultimately what led me to seek out a new protocol in Vital Plan, and I'm very optimistic that will help me build on the gains I achieved through DSF to reach yet higher tiers of consistent health.
While this post functions as somewhat of a retrospective of my time on DSF, I’m not actually all the way off and may encounter worse health outcomes that lead me to get back on. That’s something my wife and I have discussed and are more-or-less prepared for, but it’ll take a while for me to be convinced that Vital Plan herbs can’t get the job done before I’ll venture down that road.
Thanks for riding along with me in my chronic illness, observed. My prayer is always that these perspectives would give you hope and help on your own journey.
Photo Credits
Photo by Markus Winkler on Unsplash
