My Spreadsheet from Hell
chronic condition | stress
Katie McCurdy is a patient and user experience designer and also lives with myasthenia gravis & Sjögren's syndrome. These autoimmune conditions cause involuntarily muscle-weakness to her face, dry eyes, and stomach and joint problems. Because of her conditions, many different things impact how she feels from stress to caffeine, to lack of sleep or whether she has been drinking. In this talk, she discusses the massive spreadsheet she created and also shares what she learned from 18 months of tracking various aspects of her health.
Hi, my name is Katie, and I would like to talk with you today about my spreadsheet from hell and what I learned from 18 months of tracking various aspects of my health.
So I'm a patient and a user experience designer. I have a few autoimmune conditions, and one is called myasthenia gravis, which causes weakness involuntary muscles especially on my face. The other is Sjögren's syndrome, which causes a bunch of crazy symptoms including kind of dry eyes, stomach problems, joint problems. And I really have this sort of symptom soup, and it’s been kind of difficult me to attribute which symptoms belong to which other immune conditions at times.
So many different things impact in how I feel, from stress to caffeine, to lack of sleep, humidity, dairy, allergies, whether I’ve been drinking. And it’s really this puzzle that’s kind of always battling me, and I'm always trying to solve. But that hasn't been enough recently to making me want to track because tracking is a lot of work and I've definitely had tracking fatigue in the past.
So this time I wanted to try and reduce the supplement that I’ve been taking in an attempt to get off another drug. And I’ve been taking it in this very large mega dose for quite a few years. The problem is since supplements are understudied, under-regulated, the long-term effects of the supplement are unknown. So together with my doctor I decided you know, let's see what we can do to try and get me off of the supplement.
I noticed in the past that weird things happen when I try and reduce. So I’ve seen my eye get weak and just close itself which is a symptom of myasthenia gravis and that was very scary. So it basically flared one of my major symptoms. So the reason I decided to track again was to kind of keep track of that symptom along with you know my other symptoms as I tried to reduce to try and stay on top of it to prevent that from happening again.
You know I was trying to think, how should I keep track of things, and I know keeping track in my mind doesn't work. Every day when I wake up, I forget all of the bad things that happened the day before. I'm sort of an optimist in that way I guess.
I decided I didn’t want to track in the moment throughout the day and I didn’t want to track food, just because in the past that I have done that and I had success with that, but I know the energy cost that goes along with that.
So I decided in this case to use a spreadsheet, and I was inspired by a friend who has a similar tracking spreadsheet. In this spreadsheet, my spreadsheet from hell, the rows are dates and the columns are various aspects about my life that I wanted to track. Everything from symptoms to location, stress, certain medications, and supplements, whether I took a bath, whether I drink booze, all kinds of things.
And I called it a hellish palette, so especially with my symptoms, I used a darker red to show when I was feeling the worst and then no color when I was feeling best just so I could get a visual and see patterns more easily.
I set a reminder, and I got an email to myself every day at 4 PM automatically so that I would track every night and just did this kind of on my laptop, you know maybe watching Seinfeld or whatever.
And so in this way you know 18 month past, I was able to keep up with tracking during that time pretty successfully for most of that time. So I was impressed with myself for that, but I was not able to reduce the supplement. I did notice a few times that my eye did start to get weak and started to close itself. The good thing I was able to catch that and prevent it from actually getting too bad. So I was able to sort of keep control of that symptom sort of keep an eye on my other symptoms and I also just learned some things about myself that helped make some changes of my life.
So the first day of I sleep poorly I was sort of in denial about this, but when you see it consistently on your spreadsheet, you can't ignore it. So certain things I found made my sleep worse. Definitely when I am drinking my sleep is much worse, and this is also something that I maybe didn't want to think too much about, but seeing it on the spreadsheet just reinforces it and really made me understand that booze makes my sleep worse.
Exercise and baths seemed to improve my sleep, just from kind of visually looking at my spreadsheet. So I try to take more exercise and try and take baths especially before bedtime.
I also noticed that in general, my autoimmune symptoms get really really bad right before my period or in the latter part of the month. And I actually took this information into my doctor, and we talked about his together and actually made some medication changes based on this. And since we've made the medication changes I have noticed a difference and just the severity of the symptoms has not been quite so bad at that time of the month.
So I also noticed that exercise just seems to help everything. I noticed one summer I was feeling really good and I was like, what’s different, what am I doing. I’m spending time in the sun; I'm hiking all the time. So I attributed that to exercise, and I try to get as much as possible now.
I noticed myself because this is a spreadsheet, I noticed myself copying and pasting and getting lazy from day to day. So that’s just one kind of drawback from using a spreadsheet is that it’s easy to copy and paste.
I did not track while I was on vacations, so there were holes in my data, but I think you know I needed a break from tracking as well, as regular life so I wasn’t too worried about that.
I colored my spreadsheet with my hellish palette so that it would allow me to eyeball the data and for now that’s good enough for me, that’s fine. I would love to run some advanced statistics on this data at some point but for now, you know I'm getting what I need just by having that visual of what's popping out to me, what's bright red, what trends am I seeing based on that.
And I will continue on tracking because I'm constantly tweaking my medications, I'm still trying to reduce the supplement, unfortunately, and so I will continue tracking even though it's a pain because it helps me stay on top of my condition.
So thank you.