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April 2017

Data Visualisation of Mental Health

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:

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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:

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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.

 

The Many Adventures of Sophia the Worst (comics so far)

While I wasn’t able to write detailed blogs over the last 9 – 10 months I have taken to making silly comics about some of things I have experienced.

Here is the collection so far:

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Back Online

I last posted just after I had been to A and E, that visit began a process of daily visits from psychiatric nurses, a rapid referral to a consultant who finally took me off a medication that I knew had been making me feel much much worse and fast tracked to some pretty useless therapy.

The consultant informed me that despite also having my battle with bi-polar I was currently in the midst of severe clinical depression, not surprising considering I had lost 2 good friends and a family member all within the first six months of 2016.  The overwhelming grief had floored me and I couldn’t function anymore.

It was still a shock to myself to acknowledge that I was so ill, I cannot even begin to describe the crushing darkness.  I will try to revisit it in a later post perhaps.

I was put on a low level dosage of Prozac and began to attend weekly therapy sessions.

These were beyond unhelpful to be honest.

Slowly, without the drugged haze of my anti-psychotic medication I somehow began to recover.

In the week between Christmas and New Year I then decided to stop taking my Prozac.  I was done with being medicated for now.  It was against the advice of the GP I saw, and I did it anyway.

At some point this year, 2017, I began to feel again.  I began to be able to feel the flood of emotions, the quick changes of mood that had scared me and medical professionals when I was 26 and caused us to medicate the hell out of me.  My hallucinations came back, and to be honest I see them as a small price to pay for being able to feel joy again.

It is not everyday that I am well, far from it, but sometimes when I listen to a song, or notice I am being productive and cleaning or managing something I haven’t been able to do in so long I feel joy.  The joys of a song from my teenage years, the weird pleasure I get from hanging washing outside in the sunshine.  The sense of pride I got from going outside, kind of on my own, (I have ‘acquired’ my brother’s dog, Pearl, for now, she lives with me and she has helped massively with my recovery).

There are many things that may have helped, or may have happened because I started to feel better anyway.

We moved to our own house, which gives me independence and the freedom to live my ups and downs with a bit more privacy.

I have the obligation to look after a dog, so I need to get up, go for walks etc. for her sake.  (I do also have a lovely pet rabbit, however when I was at my worst others have helped me look after him, I was able to walk away from that responsibility without him taking it personally, he’s happy if he gets food, water and exercise and attention.  Pearl, my brother’s dog, seems to sense when I am unwell, she comes and stays close to me, and we share the joys of walking together.  Perhaps the solution was always to get a dog?!

I also really think that personally, at this time, leaving the medications behind have helped.  I do think I needed the Prozac last summer, but I feel now, I am far better without medication.

In my slow recovery I started to document some ridiculous things I have gone through in the awful systems of what is an underfunded, overstretched NHS mental healthcare system.  I began a series of comics called The Many Adventures of Sophia the Worst (link to the ones I have created so far are here)

For the last almost year now, I have felt very unable to write, to inspire others to contribute and I had to focus on getting myself into some sense of functioning normality.  I still have duvet days, but last week I noticed that I had 5 out of 7 days free from the worst of the darkness.  Each day still likes to floor me with crushing anxiety, but somehow I have found this reserve of strength that allows me to push through it more often than when I give in.

So while being in no way fully recovered, I am at-least able to see the light, to push forward and to dare to dream again.

Just because I know you are all super curious, here is Pearl, the dog who has helped me go outside again:

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