Simon's Recovery Journey

Hope

Initially there was none. Direct quote from my consultant –

“You will never work again”…...

“….bipolar disorder is cyclical therefore, there could be recovery, though insignificant because of inevitable relapse.’

And because he was the expert, I believed him.

For ten years I did not consider beginning any relationships with women. I was told there was no hope of real and lasting recovery – I didn’t want to subject anyone else to the horrors of the illness I was suffering at that relatively early stage.

In Wellness Recovery Action Planning training – which I shall mention briefly later – we liken this experience to the metaphor of being blindfolded, gagged and bound in the closed boot of a car. I didn’t know what was happening, I was very frightened, I cant see where I am going – I have no control of where, how quickly, how long the journey. That’s how I felt from day one. In other words ‘abandon hope all who enter here’

There are some real negatives to having a bi-polar disorder. Unless you/your family are substantially wealthy, bi -polar disorder ruins you financially. I have been in debt to 10s of thousands of pounds over the 21 years but I have never been declared bankrupt - even though have been on benefits for most of the time I have paid it back. When manic or even hypomanic, its very easy to talk even the most experienced financial advisor to give you a large loan, several credit cards etc. - believe me I did it!

The turning point for me came with a change of psychiatrist who actually asked me what I wanted from life and listened to me. A fantastic occupational therapist began visiting me. It took her 6 months to restore my confidence and self esteem, which were zero. At this point, I couldn’t leave my parents’ house, not even to go into the garden. I had stayed mainly in my bedroom for approximately 12 months.

The more I achieved, the more I was able to achieve and the more I began to feel confidence and hope for the future.

Hope is the key to recovery.

Personal Responsibility and Self Management

I was told that whatever I did to keep myself out of hospital, because bi-polar disorder is cyclical there was actually nothing I could do to avoid relapse leading to re-admission.

You possibly won’t believe this but I am actually in the middle of a relapse now and do I look as though I need to be in hospital? On Tuesday of this week I was allowed home from a social services residential establishment where I was using one of their crisis beds to help me self manage my condition. (ironic really because I work for social services now!). Due to what I have learnt recently I now know that a full blown relapse is avoidable.

This time I recognised the early warning signs that I was becoming ill. It is then that I used the tools from my Wellness Toolbox.

Lack of sleep is an early warning sign for me. It is the one thing that exacerbates my illness the most, especially in hypomania. Sleep deprivation studies have shown that if you deprive anyone of sleep they begin to experience psychotic symptoms such as auditory and visual hallucinations so how much more is it going to affect me who is vulnerable to these type of symptoms anyway!

The difference now is it’s crucial to recognise the early signs of my illness because I have too much to lose by relapsing. I have 3 jobs – I work for social services in a community day centre, I sit on the NHS Acute Services Forum and am a consultant for a disability consultancy service that educates the general public – starting ideally at secondary school level - about mental health issues to stop prejudice and ignorance really before it begins. I was also recently engaged and I moved into my own flat. Learning to manage my illness and recognise when I might need some help is crucial to building my future.

Education

My education regarding bi-polar disorder began with my uncle Jim. He was a Senior consultant radiologist at Huddersfield royal infirmary. He could access any information I needed from any NHS source or from the university with which he originally studied. Pointing people in the direction of information about their condition is really important, I certainly found it helpful as when you know what is happening there is less to fear. But, and it is a big but, a lot of the information doesn’t give you much hope! It wasn’t until I started to find out about wellness recovery that I really realised that there are things I can do to help myself and things that I can do to regain wellness.

The wonderful OT taught me square breathing, physical relaxation [tensing and relaxing different muscle groups] and mental relaxation [walking in fields or my girlfriend and myself in the Maldives!]. This is a coping strategy that has helped me to deal with my anxiety that I get when I am starting to feel unwell.

And another great OT – yes there are many professionals who do help lots! - taught me approximately a dozen methods of combating my auditory hallucinations.

I must mention at this point that I am a trombone player of 30 years now. If I don’t employ any of the techniques that I learned, the only times I don’t have the hallucinations are when I’m sleeping or when I am playing my trombone. When stress increases they become louder – at times they are screaming at me - but I have learnt to cope with them and can feel well despite them. Also, to go back to sleep deprivation – the voices can become hell as my sleep becomes less but with education I now understand what is happening and can tell myself that its not surprising that I’m feeling this way after only sleeping 4 hours in the last 60!

Self Advocacy

I have been constantly given the message that healthcare professionals are the experts and the only people who know about my illness.

When I asked one consultant could he explain my condition to me and how the various meds I was prescribed worked, he told me he didn’t think I was of the intelligence to understand what he would be explaining to me! My first job was working at Unilever research doing research chemistry – including biochemistry and organic chemistry!!

How things can change! I am now referred to as an ‘expert by experience’ - my opinion is sought because of my 21 years experience of the healthcare system and my relationship with my consultant psychiatrist, CPN, OT, social worker, key worker in day services is more of a partnership than a professional expert versus patient one. I am listened to more and this has empowered me. People now recognise my expertise regarding my experience of bi-polar disorder – my experience is my own and I am the expert on my own journey!

Support

In the first stages of bi-polar disorder you lose many if not all of your friends – it’s easier for them that way.

I’m lucky! During the 21 years of my illness I couldn’t have been more supported by my family who have been, and continue to be, excellent in that respect.

I am now beginning to rebuild my network of friends. Mary Ellen Copeland [who has a bi-polar disorder and who conceived the concept of Wellness recovery Action Planning] advocates a network of at least 5 people, at least one of whom should be able to offer support at any one time. It’s important to be able to talk to someone if you need to but also to share a laugh, go to the gym or just hang out. For me this is ongoing.