Dear mood monitoring,
I saw my psychiatrist last week, for what was a largely positive meeting. We both agreed that I continue to improve, and should remain on the same dose of my medications. He wanted to know what else I was doing in terms of self management. I explained that I am not following any sort of concrete plan, but that I try to timetable in positive things for myself during the week, while making sure I don’t overdo it and become over-stimulated. He then asked me whether I was still sticking with you. He’s a big believer in you, as was my psychologist; and I know that most self-help books on bipolar insist that a relationship with you is a must. But I’ve been spending quality time with you on and off for over a year now, and I’ve finally decided we’re just not right for each other.
We first met through Moodscope – do you remember? I’d seen it mentioned on Twitter, and shortly afterwards heard about it on Radio 4’s Midweek programme in May 2011 (after which the increased volume of traffic briefly broke the site). Moodscope encouraged me to consider you “a daily must-do”, exhorting me to “clean your teeth, wash your face, measure your mood.” It’s certainly a thing of beauty, as such tools go. It presents the subject with a series of 20 coloured cards, each representing a mood state, such as “irritable” or “inspired”. The cards are based on the PANAS (“Positive and Negative Affect Schedule”) scale and are designed to capture both positive (red card) and negative (blue card) emotions. One side of the card shows the scores 0 (“very slightly or not at all”) and 1 (“a little”), while on the reverse are the scores 2 (“quite a bit”) and 3 (“extremely”). The subject can spin each card head to toe, as well as turning it back to front, until they feel they have the closest matching score visible. A click saves the score, and the next card is then displayed.
The site is very keen on the “measure, track and share” principle on which groups such as WeightWatchers depend. Measuring is meeting up with you daily; tracking is the conversion of the subject’s data into graph form. Extra data can be incorporated, such as a particular event which may have had an impact on mood. Sharing can then be by automated emails to nominated support buddies, or by making the graphs accessible by allowing buddies access to a personal URL. The site also sends users inspirational emails suggesting steps to improve mood, and messages reflecting increases in recorded positive or negative affect.
I was really astonished when I found out that Moodscope was founded by a bipolar sufferer (Jon Cousins). Because no matter how elevated my mood became, Moodscope continued to see an upward trajectory as A Good Thing. The higher I became, the higher I scored myself on descriptors such as “excited”, “enthusiastic”, “interested”, “active”, “inspired”. Because I thought I was a genius, was completely over-absorbed in my own thoughts and ideas, and didn’t want to sleep or do anything “boring”, like eat, or talk to my family. And while it’s not generally good to experience too many emotions like shame, fear or nervousness, it is pathological not to have any – to be absolutely full of oneself, and unwilling to question. Yet the more problematic my behaviour became, the more Moodscape praised me. I was doing so well! It told me, urging me to consider how far I’d come since my last low day. Yes, the site positively rewarded me for being mildly manic.
Next, I met up with you at MoodPanda, which is also available as an iPhone app (and apparently will shortly be coming to Android). People can connect their MoodPanda web account to Facebook and Twitter, should they wish to publically declare their relationship with you. Moodpanda uses a single scale of 0-10, with zero being lowest and 10 being highest. Subjects enter this on a dropdown and at the same time can enter an explanatory note if needed. Mood changes are recorded on a weekly chart, a yearly chart, and as a pie chart representing how happy the subject is overall. The downside with Moodpanda is that if someone is not actually sure what their mood state is – because they’re finding it hard to pin down, or they are in a mixed mood – there’s nothing to help them work it out. Subjects are either up or down, and there are no clues to be drawn from analysing feelings or thoughts. At least with Moodscape I was able to note when I was feeling, say, active and inspired, but also feeling irritable or hostile towards others.
Still ready to at least give things with you one more try, I downloaded the T2 Mood Tracker for my iPhone. The interesting thing about T2 is that it is fully customisable. So if I had a sign/symptom that I knew was always a warning sign specifically for me, I could add it into the tracker’s list of questions; and if there’s something in there that I didn’t feel was relevant to me, I could delete it. Each question is expressed in terms of a slider between what the subject wants to avoid (e.g. feeling “unsafe”) and their ideal state (feeling “safe”). It sounds great, in theory, and I was very enthusiastic when I started it using it; but try as I might, I could never get the questions quite right to produce a meaningful graph. It was also quite buggy, frequently closing and resetting any changes I tried to make. It did not, in the end, enhance our relationship as I had hoped.
In March 2012, I joined a large study into mood monitoring for bipolar, based at Oxford University and known as the OXTEXT True Colours study. I was aware that I thought of this as being one last try for us to work things out. As I described a few weeks later, I underwent a series of questionnaires and tests before being permitted to join the study cohort. Once accepted, I could choose to sign up to either email or text prompts to complete two well-known and validated mood monitoring questionnaires: the Altman Self Rating Mania Scale (ALTMAN), and the Quick Inventory of Depressive Symptomatology (QIDS). Each question asks about the past 7 days and is answered on a scale of 0-3, with 0 equating to no change/issue, and 3 indicating a major change/issue. It was up to me which day of the week I wanted the prompt sent, and I chose Sunday. Each weekend, I have been completing the two sets of questions, either at home on my laptop or through my phone’s browser, and my personalised True Colours graph is ready to view by Wednesday.
I’ve been absolutely committed to you via OXTEXT for three months now, and it’s time to start asking myself what I am getting out of our interaction. Unfortunately, I have to say the answer is: very little. For a start, I feel that my meds skew the QIDS to a huge degree. The answers I give about my quality of sleep and length of sleep are down to the amount of quetiapine I take, and so is my energy level, “feeling slowed down”, and having problems with “concentration/decision making”. So almost every week I score a 1 or even a 2 for things that are caused by medication, not mood. Even if the study team could control for the meds I take when analysing the data, that’s no help to me on a week by week basis. I also have fundamental problems with the scales itself. 5 of the 16 things includes in QIDS – having difficulty getting to sleep, waking frequently throughout the night, waking early in the morning, appetite loss, restlessness – are for me symptomatic of high mood, not low. This means that overall, what I see on the graph is pretty meaningless. As I finally head towards recovery from this episode, my mood fluctuations are getting smaller, and I just don’t feel the tool is sufficiently sensitive to capture them.
After all the ways we’ve tried to bond or gel, I have come to the conclusion that you are just not helpful for me. In fact, if I am feeling stressed or agitated, frequent prompts to engage with you make me feel harassed and become part of the problem. The big issue with everything I have tried is that I already know how I am feeling. I have put in a lot of work over the past year as becoming attuned to my mood state, and never once have I looked at any graph/score from any of the tools I have tried and been surprised by what I saw there. In fact, I learn more from 15 minutes’ silent mindfulness meditation (which allows me to notice both the content of my thoughts, and the energy levels in my body) that I do from weeks spent with you. Thing is, my main problem with managing my bipolar is not knowing what state I am in – it’s knowing what to do about it. When, whether and how to intervene is the issue, and when I ask you to help with that, you just look blank. I can’t help worrying that bipolars (especially the newly diagnosed) are being pointed your way as if you are an answer, rather than a way of generating more questions.
Let’s go our separate ways.