9 Years Undiagnosed: My Life with Bipolar Disorder, for Time to Talk Day: Guest blog by Mike Segall

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(image: Time to Change)

*Trigger warning: discusses thoughts of suicide and mania, please read with care *

This blog has been courageously written by my Dad, Mike, about his journey with bipolar disorder and the hurdles he faced in getting a diagnosis. For those of you who have read my book, you’ll know some of this. This is the first blog that Mike has written for us and I want to share it on today, Time to Talk Day by the charity Time to Change.  So here is Mike’s story….

 

My experience of Bipolar 1 Disorder was that I was undiagnosed for 9 years. I was never sent to a psychiatrist and was put on the wrong medication (I hadn’t heard of mood stabilisers and seemingly neither had my doctor).

So- What is Bipolar Disorder? (formerly known as Manic Depression)

To me, Bipolar symbolises the two extreme poles of mood- mania and depression. The North Pole is Mania. Mania is wonderful for me- you think you can be anyone, you think you can do anything, achieve anything, You are flying. You think ‘why can’t everyone be like this and experience everything?’. You are much more uninhibited. You may shop more, you spend more money, You think you can FLY!

But you can’t fly and you fall, you fall off a cliff into varying degrees of  deep, dark depression, which can last for months.

Bipolar disorder is  a chemical imbalance in the brain that causes periods of depression and periods of abnormally elevated mood, mania. The elevated mood is significant, known as mania or hypomania depending on its severity and whether symptoms of psychosis are present. Psychosis means when your mind lose touch with reality, with delusions or hallucinations.

During mania, someone feels abnormally, happy, energetic, irritable and not requiring sleep they often appear to be bouncing off the walls, starting new projects, trying to achieve too much. In some cases, addictions during mania may also present.

During depression, someone with bipolar disorder may be crying, experiencing negative thoughts and giving poor eye contact. You will notice this if you ever have a conversation with someone who is depressed. They may also be suicidal or talk about self harm.

My Story:

My first manic episode occurred in 1991 and I went to the doctor and was prescribed Valium (an anti anxiety calming medication), which was handed out like sweets in those days.

The Valium didn’t do me any harm but they certainly didn’t do me any good. In the next 9 years, I had three manic episodes followed by three increasingly devastating depressive and suicidal episodes, the last of which lasted 5 months.

In my first manic episode I was going out a lot late at night to clubs and bars and spending too much money. My second and third manic episodes were much more controlled as I recognized what was going on but I was still much more outgoing than usual and spending too much money.

My depressive episodes were serious and eventually suicidal and lasted 3, 4 and 5 months respectively. I often stood on the edge of a London Tube platform thinking about ending it all. I would drive down the motorway at speed not turning the corners until the last possible moment. I would stand in the bathroom with hands full of tablets thinking about overdosing and ending my life. Mostly, I was at home in bed doing nothing but sleeping , eating and surviving.

The person you would meet today is not the person you would have come across at that time.

Looking back there was no real connection made between these episodes and I wonder 1. Why I was never hospitalised and 2. Why I wasn’t diagnosed more quickly.

First of all, 30 years ago far less was known about Bipolar Disorder so the doctors weren’t quick to diagnose it. Secondly, it was only after 9 years that my GP reviewed my file and noticed that I had never been referred to a psychiatrist.

This was the breakthrough that changed and saved my life.

I went to The Priory hospital to see a psychiatrist, describing my episodes. Within 45 minutes I had a diagnosis,

”You have a mental illness. It has a name, It is Bipolar 1 Affective Disorder. You have it for life and it is treatable with the drug Lithium.”

Lithium balances out the chemical imbalance so you end up between the poles and mood is then stabilised. I am pleased to say that in the past 20 years, the medication has worked for me and has stabilised my bipolar disorder, so I no longer get episodes of mania or depression.

I am also pleased to say that as quite an emotional person I still experience the normal feelings and emotions that come with everyday life.

Starting on Lithium is not easy as you have to be weaned onto it. There are side effects, the most common being weight gain and you have to have regular blood tests to make sure the level of Lithium in your bloodstream is correct (non toxic) and it is not affecting your kidneys.

I do wish that I had been diagnosed earlier and not had to suffer manic and depressive episodes as I did.

These are the 4 takeaways I would like you to have from reading this, this Time to Talk Day:

1. With mental health it’s good to talk about it , It’s good to fight stigma and it’s good for your own healing.

My journey started in 1991 and I would hear things like ”you’ve got a weakness. Why don’t you pull yourself together?”, which were unhelpful

2. Think about how you can help people in your community by recognizing the signs that someone has depression or mania.

3.  Live a positive life- I am an example of a bipolar sufferer who can maintain a positive life. Bipolar is an illness that needs treating. It is treated with medication but it can take time for the medication to be right as each person has individual brain chemistry.

4. Listen to those who are struggling. Most of us listen to reply. If you watch two people deep in a conversation or you are in one yourself your focus will be very much on the other person and you will be listening at 90%.

But if you are listening to understand and you are feeling and sharing their emotions then you are truly listening at 100%. Check out the Samaritans help line too.

 

mikesegall

(image: Mike Segall)

Mike Segall is a professional speaker and mental health advocate, sharing his lived experience with bipolar disorder to groups in the UK. He is also the father of the founder of this blog, Eleanor.

Shame and Psychosis article for Time to Change

My latest article for Time to Change, a campaign in the UK aiming to end mental health discrimination. (name has been changed)

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Three years ago last month, my mind lost touch with reality in a very rapid turn of events that culminated in an acute manic episode of bipolar affective disorder. Having been diagnosed with bipolar in 2004, I had not experienced any mania or hypomania (a lesser manic state) in ten years, although I had fallen into a suicidal depression just six months earlier. So when my brain fell into full blown psychosis – with delusions and grandiose thoughts, fearful thoughts about loved ones and being in danger and a complete change in rational perception – it ripped apart the fabric of my life and all I knew. I am writing this to explain what psychosis is really like.

I was just 25 and although I had experienced a mixed state which left me hospitalised at 16 (and had experienced some psychosis then), this was by far the most challenging, lengthy and painful bout of mania and psychosis that I had experienced. I began to believe that my step father was behind why I was in hospital and wouldn‘t let him see me, I thought that the doctors and nurses were a gang holding me hostage. I was fearful of everything, talking and singing to myself, unable to sit still and became quite agitated at times with the staff and patients, which is completely out of character for me. I simply didn’t know what was real or unreal and I was so frightened of the staff and others while my brain was in this state. Eventually, I recovered after about two months of being given anti-psychotic medication and tranquilisers to help me rest (often I was pacing around due to agitation/ mania), in combination with individual and group therapies. I left hospital after three months.

I rarely talk about my psychotic state, which led me to be sectioned under the Mental Health Act. This is due to shame: I was ashamed of myself even though it wasn’t my fault – rather down to faulty brain chemistry and my medication that had stopped working. There is still a huge amount of stigma about psychosis and anything that makes you lose your sanity. My psychosis is part of my bipolar illness and happened completely out of the blue. My mood stabiliser hadn’t been holding me for some time but no one could have predicted quite how rapid my descent into psychosis and illness could have been (it took only a number of days and escalated at a weekend, leaving me to be admitted via A&E, which proved traumatising).

The shame of losing your mind is great and also acting out of character shatters your self-esteem. When I left hospital, I sunk into a depression due to the shame of how I acted in hospital and how my brain and its chemistry could go so catastrophically wrong. Kindness goes a long way when you are feeling ashamed. If you have a friend or family member struggling with this – be calm, show kindness, and show up for them. They need your support at what is an incredibly painful time. Let the person with feelings of shame about their illness know that they are human, that they are an important friend to you, and stand by them.

What truly helped me in those dark days was the attitude of my psychiatrist in hospital and in the day recovery unit I attended after. Despite being psychotic and unwell in hospital and quite agitated at times, my doctor persevered to get me on the right medication and put up with my changing moods. She knew that if I took anti-psychotics and then agreed to go on lithium carbonate (the main mood stabilising medication for bipolar disorder) that I would recover – even if it took me months to get there. It was a slow recovery but I got there in time. Her patience, perseverance and kindness saved me from a very acute episode of illness. Similarly, the psychiatrist and all the staff at the Day Recovery Unit helped me in my down days starting on lithium and having regular blood tests, recovering from being very unwell and they treated me like a human being, when I had felt so ashamed.

If it wasn’t for the Doctors, nurses, occupational therapists and other staff who looked after me  and helped build me back up, I wouldn’t be here today.

There is no need to feel ashamed, although you may do.

Although I still find it hard to talk about my descent into a psychotic state – I am so grateful to the NHS for all the help I was given and have been well for some time. I hope this article helps others in a similar position – you are not alone and don’t let anyone make you feel ashamed.

https://www.time-to-change.org.uk/blog/there-should-be-no-shame-experiencing-psychosis