On the Importance of Data

From about Mid-April to the end of May, I went through a mood cycle. Basically, cycling through from manic to depressed and then back again to normal in the length of a few weeks. It’s one of the worst experiences I have with schizoaffective disorder as it leaves me feeling particularly unbalanced, especially crazy, and poorly equipped to handle everyday life. With an unstable mood it’s hard to get much of anything done, it’s hard to know how I’m going to react around certain people – I could be extremely friendly or outright hostile, I could be merely uninterested or I could be completely inconsolable.

When I’m going through a mood cycle, I’m more susceptible to psychotic episodes, to delusions, paranoia, etc. because my defenses are down. When my mood isn’t managed well it’s like the shield generator inside of me, which normally blocks so much of that stuff from ever becoming an issue, is either malfunctioning or simply not working and so sickness begets sickness and it leads to some rough times: walks with my dad where I’m so hostile I can reduce him nearly to tears, nights where it’s next to impossible to get to sleep because my mind is racing a hundred miles a minute; where I’m so manic I can hear every sound every single one of my neighbors is making and every source of light in my apartment, even if it’s just the dim standby LED on my stereo receiver might as well be a 120 watt lightbulb. I go through afternoons where I’m so depressed I don’t see how time can even keep moving and “hopeless” doesn’t even being to describe how despondent and wretched and inconsolable I feel – it’s work to even just sit there in my chair and keep breathing.

You have to be proactive about mental illness, you have to attack the problems you’re faced with head-on or else they’ll consume you. It’s a tall order most days and it’s one of the more under-appreciated things a person with a mental illness does. Like when we’re depressed; when we get out of bed in the morning and go through our morning routine of making coffee and eating breakfast. And even if we just sit in our chair for the rest of the day and just stare into space, we’ve accomplished a great feat in willpower by simply getting out of bed, making coffee, and eating breakfast. It’s why I don’t think we should be looked upon as weak, as not being able to cope with normal stresses. We’re like the anti-Superman, instead of landing on a planet that grants as super-human abilities we’ve landed on a planet that’s burdened us with Herculean loads to carry.

Fixing the problem starts with data, with recording every relevant facet of my life down on paper. With data I can catch a mood swing early and do something about it before it gets out of hand. With data I can notice that I’m sleeping 10 or 11 hours a day, an indicator of depression, and I can call your doctor to adjust my medication as necessary and give myself an easier time of it. With data I can notice that I’m getting more hostile toward my parents and take the appropriate measures. With data I can notice that I’ve been having a series of particularly good days and try to figure out what made them so good and incorporate those features into my regular life. My treatment is only as good as the data I can provide to my doctor and to this end I’m a big believer in the Hobonichi Techo.

The Techo is part day-planner, part sketchbook, part diary. It has a very open organization to its pages, so it lets you do what you want with it, more so than with more traditional day planners. I’d tried a different day planner years ago to get similar data, but the days were blocked off by hour long appointments, 9am-10am, 3pm-4pm, etc., etc. and so I felt as though I needed to fill in what I was doing every hour of every day or else I wasn’t doing it correctly and so the experiment failed – I didn’t have data, I just had a record of exactly what I was doing with each hour of my day.

The Techo has a gridded page, on the left margin there’s a “12” in the middle and a little fork and knife icon at the bottom for your dinner plans. Otherwise there’s no indication of appointment time. I’m free to put whatever I want, wherever I want and this frees me to sum up my day and put the data I feel I need to put in. Other people will draw pictures, or write diary-type entries, there are sticker packs you can buy to have analog emojis… for some people it’s really more about expressing themselves as an individual than it is about keeping track of their appointments as a more business-oriented-day-planner might have them do.

I use the main page to keep track of my sleep – when I wake up, how many hours I’ve slept, how many of those hours were restful and how many were light, if I woke up at all during the night (with all of that data being fed to my phone through a Misfit wearable I’ve had for the past couple-three months). I also keep track of my mood. I keep track of psychotic symptoms – if my baseline hallucinations were especially bad, if I had auditory or visual hallucinations, if I had any full-blown hallucinations. I keep track of if I’ve had an especially disturbing dream, I keep track of if I’ve needed to make a phone call to anyone because I wasn’t feeling well. And I also keep track of what I did with my day – where I went, who I saw, what happened – a very brief overview of the main events of my day. I break it down into AM, PM, and Evening. There’s a blank spot in the upper right corner of every page where I do an even briefer summation of the AM, PM, and Evening so I can look for major things while I’m flipping through it during an appointment with one of my doctors. I rate my AM, PM, and Evening on a scale of 0-100 and then average the three numbers to come up with a total score for the day so I can tell at a glance how good a particular day was.

There are two monthly views in the front which I make use of – one for particularly bad days and one for particularly good days. I rate both on a scale of 1-10 and keep track with tally marks the number of days that were a 6/10 or more. I allow my doctors to photocopy these pages (since they just contain facts and not my personal feelings and so I feel comfortable having them keep this info in their files) so they have it for their records and it gives a nice overview of how my months have been going. It’s enabled me to recognize a pattern wherein if I have an especially disturbing dream I’m more prone to psychosis the next day, so I’m able to adjust my day accordingly (either with medication or extra self-care) to help mitigate it.

There are also some pages in the back which are totally blank. I use these pages to keep track of things I want to remember when I look back on the Techo in the future. Encouraging things people have said to me, important realizations I’ve had, little tidbits of information that are too long to put on a page in the calendar itself but should still go into the Techo. If it’s medication related (like adding a new medication or changing the dose of a current one) I’ll put it in the blank page that precedes each month for quick reference.

Keeping track of sleep is especially useful when you have schizoaffective disorder or bipolar illness – it’s like your speedometer. Too little sleep for too many nights in a row and you know you’re probably manic; too much sleep for too many nights in a row and you’re probably depressed. Accentuating the data with what you’ve done with your day is further confirmation – are you bouncing around from activity to activity but not actually getting your projects done? are you staying inside, not going for walks, lying in bed for two hours before getting out?

It’s entirely possible to be manic without you or anyone else realizing it and it’s entirely possible to be depressed without you or anyone else realizing it. At least, in the early stages. Sleep is the biggest indicator for me, but another person might have a different indicator – perhaps how much they eat, how many hours of TV they watch, or how long of showers they take. By collecting the necessary data it’s possible to catch mood swings early. It’s important to catch a mood cycle as soon as possible so it doesn’t last for months. The fact that my mood cycle only went on for about a month is testament to how effective keeping track of my mood in my Techo is.

Mid-April through the end of May was rough. So when I say “easier” I don’t mean it’ll be easy. It’ll still suck, it’ll still be hard, you’ll still suffer. But the suffering won’t be as bad as it could have been.

Because I was keeping track of all of this data, I was able to catch the manic swing early – so we increased my Risperdal and the mania didn’t get out of hand. Then, when I was coming into the depressive swing, we were able to add another medication and I was able to take a small vacation at my parents’ house and I did better than I feel I otherwise would have if I hadn’t known what was happening to me.

Your method might not be a Hobonichi Techo – I tried keeping track of my mood in Microsoft OneNote for a while. It was great that I could search for specific events quickly and that I could update it from any of my computers or even from my phone. But it didn’t feel personal enough to me. I didn’t like that I couldn’t draw boxes or make lines…I much prefer pens and paper to keyboards and screens.

Your doctor is only as effective as the data you provide them. If they don’t know you’re only sleeping four hours a night, they’re not going to be thinking you could possibly be going through a manic phase. If they don’t know you haven’t changed your clothes in three days they might not think you could be going through a depressive phase. And the data applies to much more than just bipolar illness or schizoaffective disorder – you can track whatever symptoms you want to (even non-mental illness symptoms). By providing your doctor with more data, you’re enabling them to give you more effective treatment. It’s also nice to be able to look back at yourself a few months/years down the road and see where you were and what you were doing and what your symptoms were like to see how far you’ve come.

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