Any academic will light up with joy when talking about data and I am not so different.
A good academic will also tell you of the limitations of a data set and that you should always think about these limitations as you analyse and try to learn.
What I have found interesting is the data that is naturally collected on my phone. I have a step-recorder app that came already installed so I began to look at it each day. For the most part of 2016 the steps I covered were very low, many days were spent under my duvet with the only steps taken between the bed and the bathroom for when nature called. There are days when I took less than 200 steps the entire day.
The end of November 2016 seemed to mark a turning point, I remember I actively decided to make sure I was more involved with life again, and while I still felt beyond awful most of the time, I agreed to every social opportunity that came my way.
The step-recorder app reflects this decision, from that point on the number of steps recorded is much larger.
What is behind this increase is that I was physically more social and made sure I was attending events.
I made sure I went to friends’ birthdays, I went to the opera for the first time with a friend and even went to Amsterdam for a few days.
Christmas and the surrounding days around it were full of lovely quality time with the people I love the most and I made sure I was present and involved with activities again.
There were still duvet days and times when I felt I couldn’t achieve anything, if something wasn’t planned for a day, I used it to crash out and rest.
When I was up and about I didn’t feel ‘well’ I felt like I was watching myself attend things and expecting to feel the joy I had a distant memory of feeling when I used to be well.
Even being in Amsterdam, a city that holds so much joy for me, was somehow dulled. It was so good for me to be there, but I didn’t feel joy, not yet. I also didn’t feel crushing despair and that was a huge improvement.
By the end of the December I was feeling over-stretched, every social interaction had been enjoyable but cost me a lot mentally. The step counter in December 2016 shows huge peaks and troughs, on days where I was active I was super active, racking up many thousands of steps, the in-between days I would crash and rest and barely move again.
Despite feeling so thinly-stretched and frazzled I took the decision to stop taking my Prozac. It didn’t feel right to be taking it anymore, I can’t logically explain it, I really wish I could, but it felt like it was time to go it alone again.
January 2017, I started to notice, and be annoyed by the mess that life had become. The piles of clean clothes I had never sorted, the unopened letters, everything started to motivate me to clean and tidy again.
When I have been well, I like to be organised and on top of things, when I am unwell I don’t have energy and do not care about mess. January 2017, and my desire to sort out life was another important milestone. I bagged unused clothes and things for charity shops, created piles of paperwork, and began to finally unpick the mess that finances had become while I had been under the crushing darkness.
The step counter shows that my overall activity was increasing yet again, in December there were spikes where I had done lots and then huge troughs where I had done very little. January showed that while I didn’t have such high peaks as December, because I wasn’t going out as much, I had a more even distribution of active days.
Fast forward to March 2017, below is the graph showing the steps taken over that month:
There are still days of inactivity, where the world gets too much, but there is so much more movement overall throughout the month. It should also be noted that by this point I had become a full-time dog-parent! So I have had to go on walks. The troughs are days when despite this responsibility, it has been all too much, and my husband has walked the dog alone.
The end of March 2017 came with a new decision from me, I wanted to increase the amount of distance I walked each day, really begin to push myself past my comfort zones and try and keep myself outside, something that I could never have managed last year. Going out and about in 2016 was always with someone else, I was too anxious to go places on my own and even when I was with someone else there was always the anxiety following me.
March 2017 saw me take joy in being outside, not quite alone because I have Pearl the dog with me, but also not needing the company or safety of another human being. I feel like I have my freedom back.
This last week marks yet another milestone. Again apparent when you look at the data in the step-recording app:
A solid week of activity! No troughs, now here comes the limitation of data, what you cannot see is that there have still been times when I have been unable to function, still had to take a break, go under a blanket and rest. The difference is that these crushing anxiety and lows have lasted maximum half a day, and that I have still managed to achieve movement on a bad day, within a 24 hour period.
Another major indication of improvement is that I have been able to write again, to update this blog and to start engaging with the world more.
My next aim is to begin to get into the habit of using a website called Moodscope. It uses a quick series of questions to record your mood and then graphs it for you to look for overall patterns. I tried to use it last year, but I was never fully well enough to regularly complete it.
Now again, for me it has limitations, I have something called rapid cycling within my bipolar so this means that I can fluctuate between highs and lows more often. Still if I aim to complete the Moodscope evaluation daily there should be some useful data from it.
Now I hope that I continue to improve to at least tackle and tame the anxiety so that I am only left to battle the bipolar.
I will always have lows, they will never disappear. I will always have mania and regular small hallucinations, as I like to say, bipolar disorder is a life sentence.
I hope however that I can build back in some coping mechanisms and mental reserves and routine that cushions the blow, next time that I fall.
Sadly, most of this journey is on my own, while I have friends, family and a lovely husband, the kind of therapy that would be most beneficial to me is not available on the NHS. The medications that have been thrown at me over the last three and half years haven’t particularly helped. So I fall in this no-mans land of not really getting much medical help. Until the next crash and A and E visit, I will be off the NHS mental health radar, falling through the cracks of an over-stretched, underfunded system.