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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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A visit to A and E

Last Wednesday I was very ill, I couldn’t stop crying and I wanted to die.

My husband phoned the mental health team and was passed around a few numbers with no one quite willing to take responsibility for me, until someone said the best thing to do would be to present to A&E.

He drove me to the local hospital and I was seen quite quickly by two psychiatric nurses.

Through tears I explained how low and suicidal I felt and the diagnosis of bipolar type II that I had.

They assessed me and decided to refer me to the Home Based Treatment team where daily home visits from psychiatric nurses monitor you to see how you are and I had an appointment on Monday to see a psychiatrist.

Now, while I am still pretty ill I do want to raise the issues that the above has brought to light.  Anyone reading this blog has known that I haven’t been in a great place for a long time and I have regularly asked my GP to be referred to see a psychiatrist but I have been told that it would be 18 weeks before I would see one.

During this waiting time I have steadily got worse and worse to the point where I have become suicidal and had to present to A and E.

Therein is the problem with the mental health services in this area. I have had to hit rock bottom and come to the dangerous edge of my sanity before being treated.

I am very lucky in that I live at home and have people to support me.  Other people are not so lucky.

Now I am having daily visits from a psychiatric nurse to assess how safe I am and my medication is finally being changed after a visit with the psychiatrist yesterday.

It hasn’t cured me over night.  I still feel awful and the only reason I am able to write today is that instead of feeling rock bottom I feel flat. Instead of low I feel a nothingness,  still infected with anxiety and uncertainty but enough of a flatness to let me sit up and write.

What is ridiculous though is there is no help for before you crack and nearly die. There is nothing to stop you falling over the edge.

Vice have an article where other people express the same concerns.  There is not enough funding within the NHS mental health services to help people until it becomes very close to too late. They raised this issue two years ago in an article they published in 2014 and the problems have not changed.

http://www.vice.com/en_uk/read/mental-health-nhs-in-crisis-hannah-ewens-mind-392

Please don’t forget if you are having your own crisis that there are charities that can help, and to keep going back to your GP.  Tell someone how you feel so they can help you harass the right people and you can get the help you need.

Samaritans: http://www.samaritans.org/how-we-can-help-you/contact-us

Mind: http://www.mind.org.uk/information-support/helplines/

Birthday Eve – Life staring at 29

Tomorrow I turn 29.

I have nothing together.

The only victory I have to celebrate is that I still exist.

My mental health rules the roost and it’s a bastard.

I have no money, no property and no health.

I am scared of going outside so I don’t run – if I make it outside for something I have to do for say work then it is a major victory.

I am medicated to my eyeballs.

I feel very little I just exist.

Someone asked me what my dreams are.

I don’t dream anymore.

I exist.

That is all.

Life like this is miserable.

I don’t feel often.

I miss feeling.

I miss the ups and downs and all the joy that comes from the emotions that ruled me.

I want to have dreams again. I don’t want to consider surviving a major achievement.

I spent most of my day in a major panic attack because I had to get myself into town and be normal for a few hours.

I then spent my evening de-briefing my mind because I know I have to see people all weekend and the thought of that is tiring.

Previous birthdays are full of joy and friends and memories. Each birthday I take it upon myself to think about the past year and the coming next year.

Where will I be? Where have I been?

The only successful thing I have is my relationship and even that I feel like a constant drain.  I am not an equal partner. I am a sick person.  Someone who needs looking after.

I miss who I used to be and I hope that I get to see a professional soon.

Bipolar at 28 soon to be 29 is crushing me.

The only thing I know is that I am here thanks to sheer determination to fight my demons but even that gets slowly eroded away.

I have no idea where I will be in a years’ time.  I would like to hope it’s a lot further along than where I am now.  I would like to think that I can think of some achievements other than existing.

Currently I feel like I contribute nothing to life and society.

But I guess it’s my birthday eve so things could always improve from tomorrow.

Happy Birthday me.

Should I Stay or Should I Go?

So my last post (which you can read here) was on the frustration I have felt with the NHS waiting lists and the fact that I have to wait 12 weeks to see someone to review my medication.

I decided to direct my frustrations into doing some research and found out that I will need a tidy £300 to see a private psychiatrist.  In my naivety I thought maybe I could get covered by private healthcare but it turns out that no one will cover a pre-existing condition and also most don’t cover mental healthcare.

So now I am faced with a decision.  Do I use what little resources I have available to me and pay to see someone privately?

I am so incredibly frustrated with the NHS service in Manchester.  I have to specify that it is in Manchester that the service is terrible and not all over the country.  In other parts of the country and let’s face it I have moved around a lot, I have had some excellent services.

Manchester has been awful though.  I don’t know how people who are in crisis cope.  Personally I phoned Mind.  An excellent charity and they really helped calm me down, and suggested some numbers for me to call.

A great resource when you don’t feel quite ill enough to need to talk to the Samaritans for example.

(In my head phoning the Samaritans is reserved for absolute crisis point and I didn’t want to take some phone line space for someone who may have needed them more)

So first of all – I cannot speak highly enough of the charity options out there available for helping you.

Second of all – I cannot believe that despite paying taxes etc. we have to resort to charity work to supplement a shoddy service by the authorities.

I shouldn’t have to go private; I shouldn’t have to phone a charity.

I should be able to be treated in a timely manner by the NHS.

However, the world is full of shoulds.

So now I have to decide what I am going to do.  Still worried about the money side of it I have decided the first step is to try and talk to a GP next week.  (Plus even if I go private I still need a referral letter from the GP to the private psychiatrist).

I don’t think I can wait the 12 weeks to see the NHS psychiatrist so I guess the decision is kind of made.  Now to somehow afford it; anyone want to buy one of my vital organs!?

I’ll let you all know next week what happens but it looks like I’m going to attempt to go private.

Money is overrated anyway.  Who needs it………….

PS If you need to talk to the Samaritans their contact details can be found here:http://www.samaritans.org/how-we-can-help-you/contact-us

Or if you need some advice from Mind their contact details can be found here: http://www.mind.org.uk/information-support/helplines/

 

Manchester your Mental Health Services are Appalling

I’m currently in tears because I have just had a phone call that I had to wait 2 months for, to be told that I was referred to the wrong place and I now need to wait on a waiting list for the right place which takes 12 weeks.

I just want my medication reviewed so I can get the hell off these terrible pills.

I’m ill all the time, either crying and low or maddeningly manic.

Because I can function and work as a writer despite all of this I don’t seem to be a priority.

I am so angry right now.

I’m crying because I’m mad as hell.

What an awful underfunded ridiculous way to treat someone with a mental health problem.

I am very lucky in that I am married to a doctor and looked after by friends and family.

Other people are not quite so blessed.

God knows how they cope.

When I lived in Stafford I was seen so rapidly it was brilliant. When I lived in Reading I had regular care and rapid referrals too.  Manchester has really let itself down.

I don’t really like to post negative things if I can help it but I am fuming.

It shouldn’t be so badly funded that it takes this long to be seen by someone.

The NHS is an excellent concept with some great individuals working within it but thanks to the way that government has under prioritised spending on mental health we have the situations that I’m in now.

Manchester is a huge area and I do not doubt it has its fair share of people with mental health issues.

I do not know how they cope.

I wish I could afford to go private and see a doctor that way.

This NHS post code lottery is ridiculous.

If you have been subject to waiting times that you feel have impacted your mental health as well please comment below or on the Facebook group.

 

 

Guest Blog: Having Your Trust Betrayed

I’ve talked before on this blog about my anxieties and how they affect me generally.

Normally I can find a way to tune out most of the worst of it, but recently something happened that caused me to lose faith in myself and others.

I found out the hard way what it was like to have your trust betrayed by someone I thought I could trust last week.

As a person with social anxiety I find it hard to trust people anyway but after several years and some quite deep conversations with this person, I thought I could open up.

The situation arose from comments to this person from a parent at the group where I volunteer.

This person has also been helping me to keep the group going during a shortage of help.  The parent had noticed some of my coping strategies (retreating to the relative safety of the kitchen has been fine previously when I’ve been feeling a bit anxious, but as I have had to step up and be much more of the front man in organising things and running nights, which is so much more stressful, it’s not so good).

It’s a fair observation and I have no problems admitting it as it helps me.
So I decided it would be a good time to be honest about my anxiety and why I felt the need to retreat every now and again.  I told her about the anxiety issue and she said we could work on it and she would help me to keep an eye on the issue.
What I found out the following week was that she had also used this information to try and justify my behaviour.

She actually took my anxieties and spread it to the parent of a child who I work with.  This information was then passed on to at least one other person, the wife of another helper at the group, who then passed it back to me (I don’t know how far this information was actually spread beyond this).
So my immediate reaction is great, now everyone thinks I’m crazy and not fit to look after their kids.

I confronted this person, and she said she passed it on in order to help the parent understand why I do these things and also to point out that it is a direct action of us not having enough help.

While this is a fair point, I was quick to point out that for most people no matter how you write down or explain mental health issues…they look bad, especially when you’re in a position of responsibility.  She did apologise for what she had done.
As a very single guy who works with young kids voluntarily, you always wonder what people think of you but I can get past that. Throw in mental health issues, even ones like mine that are relatively mild compared to some…and I’ve been worried about what people think.

So I already had a low mood and this then sunk very much lower quite quickly after this.

I didn’t want to trust anyone again, and I just hated people in general.  This low mood has haunted me for some time as a result.

At the time I just wanted to quit, I wanted to know why these people felt that they had to betray me like this and pass on such sensitive information.

I decided not to ask in the end though.  I guess there is no real positive I can take from this story other than the fact that I will try and push on…. because I still feel bad and I’m worried something will happen as a result of it.

I hope the person who I thought I could trust would learn not to pass on information like that in future, but I guess I’ll never know.

Please note that anonymous guest blogs have a featured image to associate it with the same person.  If you want to find more blogs by this guest blogger look for the football photo on previous posts.  

Can you call me Crazy?

Well no, it’s not OK.  I can call myself crazy but it’s probably not OK for you to do the same.

Is it really OK for me to call myself crazy?

Probably not too, it is probably a way to bring myself down by using derogatory language about myself.

It’s an interesting minefield the world of what language is OK when discussing mental health.

Some think it’s insulting to always refer to mental health issues, illnesses and conditions.  Others see this as normal everyday language.

I was recently part of a heated debate about whether you can call antidepressants happy pills.

My stance was that you are adding humour into a difficult subject, but others saw it as demeaning suggesting that the term made it sound like you just needed to buck up a bit with some magic pills and your depression would be cured.

I can see where they’re coming from but I still maintain that humour in the face of a tough subject is something that I think we should all attempt.

It makes it less awkward to discuss.

Let’s be honest people already tip toe around the subject area with awkwardness as it is.

Let’s lighten up and actually open the conversation up.

Of course it is also a matter of intent.  Someone could use derogatory language on purpose to demean and belittle you.  Well that obviously is not OK.  So maybe we should seize all language and filter it….wait that’s not OK either.

It’s a fine line to tread but as long as the speaker isn’t trying to be horrid, and the listener can explain why certain things make them feel certain ways then I think it is an area we can navigate together.

So what do you think?  Am I being disrespectful by even suggesting we lighten up?  Or am I trying to open the conversations and get people talking on a subject that is already heavily stigmatized?

Comment below or on the Facebook group! (Link to the Facebook group is here)

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