What does my daily medication and self-management look like? How could I visualize this regimen? How can I communicate the ‘burden’ and work of caring for myself?
Those were my questions as I prepared to help facilitate a behavior design workshop at the Stanford Medicine X conference a few weeks ago. The day-long workshop was taught by Kyra Bobinet and conference organizer Larry Chu, and my role as a patient facilitator (along with co-patient-facilitator Dana Lewis) was to help bring the patient voice into the workshop and help attendees understand the context and complexity of patients’ days.
I decided to draw pictures of the things that I need to do on a daily basis; that way I could show the workshop attendees what my day was like instead of just telling them. Here’s the resulting ‘day’ that I presented during the workshop:
Morning meds, ~7 minutes:
On waking up, count out 16 pills (medications and supplements) from 9 different containers. Walk to the kitchen and squeeze 6 drops into my mouth. Heat up water, then measure out, stir up and drink my matcha tea (which has helped reduce inflammation.)
Mid-day meds, ~1 minute:
Remember to take my mid-day pills to help with weakness. Grab my container from my purse, shake 2 out, pop ’em down (with or without water.)
4pm meds, ~1 minute:
Notice a reminder in my e-mail inbox to take my 4pm meds. Shake out 6 yellow supplements from one container; 2 pills from another container. Gobble down with a gulp of something cold.
Nightly spreadsheet from hell, ~5 minutes:
Notice a reminder in my e-mail inbox to track my symptoms and a few behaviors for the day in my giant ‘spreadsheet from hell.’ I use this to keep track of what’s going on with me on a daily basis, because I tend to forget from day to day how I feel (curse of the eternal optimist.) (Note – a drawing of a spreadsheet from hell actually looks kind of cute. An actual spreadsheet from hell makes your eyeballs bleed.)
Bedtime meds, ~5 minutes:
Count out 15 different medications and supplements from 7 containers. Gulp down all but 4 of them – put those 4 under my tongue and let ’em dissolve.
What did I learn through this exercise?
1. I could better see and understand my regimen and the impact it has on my day
I estimated that I have 19 minutes of medication dosing and self-tracking work each day, split up over 5 discrete moments on average. It was helpful to view my pills in color like this, instead of looking at the bottles – because that’s really what I see right before I swallow them. This type of drawing (or more likely, a color photo) would be a great help for a caregiver trying to help count out meds.
I’ve never documented my daily process like this before, so I never quantified the time it took out of my day or considered the way it might interfere with my daily activities. In the workshop, I stressed the point that most patients have daily, repetitive activities that they must keep up with and that drain their willpower and attention reserves. Asking a patient to add another behavior or activity to their daily regimen is asking a lot – especially for someone whose day is already fractured into tiny pieces.
2. I don’t have it so bad.
Sure, it was clear that my daily regimen divides my attention. But as my fellow patient facilitator Dana spoke about the hour-by-hour, minute-by-minute management and decision-making that a person with diabetes has to keep up with (something like 400 decisions per day,) I realized that my self-care regimen is a cake walk compared to hers. I can go on autopilot for a lot of it, which helps me save some brainpower for the important things (but which means I do make mistakes sometimes, so….)
3. It’s time to grow up and get a pill organizer
Today I ordered a pill container so that I can count out my am/pm meds on a weekly basis – I’m hoping this will help me reduce my own pill dispensing error. I can’t believe it took me 23 years to consider this, but pill organizers always seemed like they were ‘for old people’ (especially when I was 13 and newly diagnosed) and so I didn’t consider them before.
4. I left a lot out
After the workshop, I realized that there are a lot of things I do on a daily basis to care for myself that I didn’t include in this visual. Things like avoiding dairy and gluten (which definitely takes work,) exercising, getting enough sleep, taking baths to help me fall asleep and relax, and other such activities that many would put into more of a ‘lifestyle’ category. It’d be interesting to layer these into my day and see how that looks.
I’m always excited to test out new ways of visualizing my health situation, and I almost always get one or more useful nuggets of insight out of it. I’d recommend to anyone with a chronic condition that you spend a day or two documenting the activities that you do as a part of managing your day-to-day care; you might discover some opportunities for optimizing, as I did. I’d love to hear about it!