Clare Knighton – Relapse: The monster came back!

It is practically 12 months ago since I last wrote a blog entitled relapse. I spoke about how I was afraid that it would happen; “A lot of the time, the monster is small and I’m hardly aware it’s there. I can get on with my life, with no worries or dark thoughts, the monster stays quiet. At work, I can be extremely productive, full of ideas and positive energy and life is good.”

And then it happened. At first I felt ashamed and embarrassed, I worried what people would think – but then if peer support has taught me anything, it has taught me that by being brave and honest about my experiences, my honesty may give others the courage to do the same.

I don’t just want to blog about the fact I have relapsed, I want to share with you, deep dark parts that I can remember, the part of relapse that nobody sees, and very few bear witness to.

Being a peer support worker can make relapse feel terrible as to me, my role is about so many positive things, and when I don’t feel positive, I feel like I am losing part of my identity, part of who I am.

So let’s look at my relapse together. Despite the fact I run groups about recognising early warning signs, noticing the exact moment it begins is often hard, and it’s only when you look back on the experience, you can pinpoint where it began.

It began by me coming to work, keeping as busy as I could, avoiding taking breaks, not eating, and then going straight to bed when I got home. I was determined to keep the’ monster under the bed,’ and felt this was the only way. Trouble with monsters is, if you ignore them, they just get bigger and more demanding.

They get to a point where everything else comes second as all you can hear and see is the monster. So I took some time off work, with a little ‘encouragement’ from my work colleagues. All the time, I was saying to myself, this isn’t peer support, this isn’t hope, this isn’t recovery. Then I began to hear whispers, first very quiet, and this escalated to a point where I could hear nothing else. The voice I could hear was dark and repetitive and I stopped all my medication,  I had to shut out all sounds, no tv, and just sit in absolute silence. I couldn’t eat, as everything tasted bitter and poisonous, even coffee that I love tasted unbearable. Meanwhile, outside of my house, the world was going as normal, except that I was no longer a participant.

expectations-vs-reality

I’m not sure how long this went on for, but shortly, the home treatment team began to come and see me daily. There’s much I can’t recall about the early weeks they were with me, just that they came, gave me medication, and talked to me and listened to me. I remember feeling so frightened – convinced that something bad would happen if I took any medication, so it really took some convincing and the home treatment team had great patience with me, every day.

As things progressed, I then began to feel that I would lose everything, that the dark monsters that were swirling around would never go – I would lose the job of peer support worker that I loved, that I would lose my house, and end up homeless with nothing; which the voices told me would happen.

So early one morning, I made a bad choice and started to drink alcohol. My old friend addiction had come knocking, and I had answered, willing to go astray to oblivion, to failure, what |I deserved. I drank all day, and remember waking up the next morning, the first thing I did was go to the fridge for another drink. Something stopped me,I could see the disappointment on so many people’s faces, so I closed the fridge and walked away from that fake friend, alcohol.

Time passed by, days rolled into each other, and the home treatment team kept coming, no matter what I said or how hopeless I felt, they came and slowly supported me to a point where I could push the monster back under the bed! They held onto hope when it seemed I had none. I chastised myself for letting go of hope, the cornerstone of peer support.

Peer support colleagues that I had trained with text me regularly, offering support, coffees and validation of just how rotten I was feeling. So with home treatment, peer support colleagues and friends, I began to feel better. The hope that I felt I had lost, came back to me and I could return to the peer support job that I love. Once back at work, my work colleagues welcomed me back to the team and as usual offered their unconditional support, coffee and good humour.

The terrible thing for me, about relapse is that I feel that it will take everything away – leave me with nothing, no purpose, no hope, no life. So now, back at work, I can smile and say – I made it. I’m back and functioning well. All thanks to those around me who had such patience, expertise and belief in me in my darkest hour.

So to finish this blog on a positive, what have I learnt from this relapse? I have learnt that I am strong, and feel sure that knowing my job was sitting there waiting for me was a key factor in pushing my monsters back under the bed. I have learnt to trust people more, allowing them in to understand the nature of my distress, and of course I have added to the breadth of my lived experience which can only help me in my peer support role, and ultimately improve patient experience.

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Clare is an accredited peer support worker based in Worcestershire, a passionate coach, mentor, cat owner and lover of kindness..NHS champion..survivor….expert by experience. You can follow her on Twitter @knightonstar for daily tweets about peer support.

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Happy holidays

Dear readers, contributors and casual blog browsers,

As we come to the end of another fantastic year for the blog I would like to thank you for all your support. The blog has received some fantastic content throughout 2017 and as always it’s been great to have so many people sharing their experiences, research, views and opinions. Have a brilliant festive season and I look forward to sharing some great new content with you in January.

 

cat tree.jpg

 

Happy holidays!

Katherine Dyke

(IMH blog editor)

 

PS- if you fancy writing a piece for the IMH blog it would be great to hear from you! Find out more here

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The RECOLLECT project – A lived experience perspective 2017

In February 2017, a group of academics, researchers and “Lived experience” volunteers came together to explore the character, dynamic and outcomes of recovery colleges. The volunteers came from Leicester, London and Brighton, and were made up of people who had experienced mental health illness and attended a college, a carer of a person using the college and someone of mental ill health who had chosen to currently not attend a college. The group endeavoured through literature review, energetic discussion and challenge, to understand what a recovery college was, what and how it delivered learning experiences for those people experiencing mental ill health, and the longer term outcomes for all those involved in the recovery college community.

We agreed to meet 4 times in the year, and in the true spirit of co-leadership, thrashed out a meaningful and descriptive concept of recovery colleges that could reflect both academically relevant information and valuable real life experience. Our group fostered active listening, respectful argument and an openness and honesty that gave an authentic voice to our subsequent papers. The uniqueness of all the participants – academic and not, made a truly kaleidoscopic experience which we all hope will encourage you to learn more and get involved in recovery colleges yourself.

Written by Emma Munday – Bipolar, slightly old, human.

 

We jelled from the start

The group together

Our experience we pooled

Lived experience

Lived experience

Our knowledge coalesced

Thoughts and feelings

Merged

Used for research

Lived experience

Lived

Lived

Empowered

Confident

Confident

Giving inner strength

Sense of self worth

Worth

Common goals

Coalescing thought

Together with

Lived experience

Lived

Lived.

Poem written by Jane, who said, ‘I have been a mental health service user for most of my life and have suffered with bipolar disorder. I have found that being involved in the RECOLLECT project has been informative, useful and empowering to me.  I have enjoyed meeting with people with a common goal and talking and working together has been a lovely experience.

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The RECOLLECT study has been based at the Institute of Mental Health, funded by a Programme Development Grant from the National Institute for Health Research and led by Professor Mike Slade. Emma and Jane wrote their respective contributions to this blog after participating in all four meetings of the Lived Experience Advisory Group to support the delivery of RECOLLECT. You can find out more by contacting Peter Bates, PPI lead at the Institute of Mental Health or emailing peter.bates@nottshc.nhs.uk.

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Ellen Townsend: Small talk saves lives

It sounds much too simple doesn’t it?  Making small talk could save a life.  But the truth is, it really could.  Today SHRG is supporting the campaign launched by the Samaritans. They are asking us all to be courageous and strike up a conversation with someone if we are worried about them at a railway station. MAKE SMALL TALK AND YOU COULD SAVE A LIFE is a new campaign that encourages public to intervene to help prevent railway suicides.  The Samaritans note that for each life lost on the railways, 6 are saved by life saving interventions.  You can find out more about the campaign here: https://www.samaritans.org/media-centre/our-campaigns/small-talk-saves-lives and here http://www.bbc.co.uk/news/uk-41992967

You can hear me speak to Andy and Sarah on BBC Radio Nottingham about the campaign here http://www.bbc.co.uk/programmes/p05lnxxs (The piece starts at 2:08:00 with my bit at 2:10:17)

The myth that work like this will help to dispel is that suicide is not preventable – it is and right up until the last moment.  Johnny Benjamin was brought back from the brink of a suicide attempt by a caring stranger (Neil Laybourn) who he managed to track down through the incredible ‘Find Mike’ campaign so he could thank him for saving his life http://www.telegraph.co.uk/news/health/10604805/I-finally-got-to-thank-the-man-who-saved-my-life.html

Kevin Hines, who survived a serious suicide attempt, maintains that he felt he could have been diverted from his attempt if just one person had asked him ‘Hey kid, are you OK?’ http://www.kevinhinesstory.com/

Dr Christabel Owens from the University of Exeter has produced a great leaflet to help get people talking about suicide if you are worried about someone, which you can access here: https://www.exeter.ac.uk/media/universityofexeter/ref2014/documents/UoA2_leaflet.pdf

So let’s all be courageous.  You won’t make things worse.  Start a conversation and save a life.

This post first appeared on the Self Harm Research Page .

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Ellen Townsend is a Professor of Psychology at the University of Nottingham, a fellow of the Institute of Mental Health and a visiting fellow of the University of Melbourne. Ellen is the director leading the Self-Harm Research Group.  

You can follow updates about Professor Ellen Townsends work on Twitter:  @SelfHarmNotts 

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Theodore Stickley: Singing for Enjoyment, Mental Health and Well-Being. The Nottingham People’s Choir

Funded by the Institute of Mental Health (IMH), the Nottingham People’s Choir was formed in 2013 as an initiative to promote mental health. It is not a condition of Choir membership that people have used mental health services, yet recruitment of members takes place within a local NHS mental health trust. The group, located in Nottingham, is facilitated by a professional choir leader who is experienced in working with people with mental health problems with the support of a mental health nurse.

The Choir meets weekly during school term-times; it meets during the day time as there are a number of community choirs meeting locally in the evenings. It was thought that meeting during the day, would enable people who do not work to attend and during school term-time to enable parents to attend. The venue is provided pro bono by the Nottingham Royal Concert Hall in the city centre by an arrangement with the local authority. The Choir has a steering group that comprises mainly Choir members with representatives from the local authority, the venue, the IMH, and the local NHS trust.

Participation in arts-based community activities has been reported to improve health and well-being for the past 30 years. There is a growing body of evidence to support community singing for health and well-being outcomes. In an international study, researchers report that from a sample of 1,124 choral singers, the majority claimed positive psychological benefits.

We conducted a qualitative study of 10 choir members and it became clear that participation in the Choir has a significant effect on the health and well-being of the individuals. Each participant described many positive experiences from their attendance. These were classified into five themes which are: social benefits, health benefits, accomplishments, personal benefits, and enjoyment.

choir-groupshot

Participants reported improvements in social experiences, health benefits, accomplishments, personal benefits and increased joy in their lives.

  • ‘There’s honesty and openness I think because you’re all in the same boat in a way. We’re quite supportive of each other and share difficulties.’ – Maria 
  • ‘It’s a big distraction because you can be focused…Improving your concentration and your memory about what you’ve learned.’ – Violet
  • ‘In some ways I treat the choir, even though its not part of recovery college, I would treat it as another class because it does give you hope and opportunity.’ – Duncan
  • ‘We’ve sung in different venues and they’re probably places that I couldn’t have ventured out into before that. I suppose in an evening as well, so that’ gave me more confidence to push myself.’ –Isaac
  • ‘It’s a bit like taking medicine I suppose. Yeah, it’s definitely got that feel good factor. You just feel uplifted. It doesn’t matter what you’ve sung. It’s just that process of singing.’ – Isaac
  • I think it’s been really beneficial for me in so many ways. I mean I’ve been here and I’ve felt quite ill, I’ve had occasions where I’ve not been too well but I still keep coming but it always lifts me.’ –Maria
  • ‘Well it’s been a total joy, it’s a fun thing and friendly. Very, very friendly. I just enjoy it immensely…It’s just what I needed’ – Paula
  • ‘I moved heaven and earth to get here with my Mum because it’s such a life-enhancing experience, especially for her. To be honest if it was at two o’clock in the morning I’ll make an effort to come.’ – Sadie

Participants reported improvements in social experiences, health benefits, accomplishments, personal benefits and increased joy in their lives. Participants have expressed how the Choir has had significant improvements in their mental health, physical health, and well-being and has helped some members recover from being in ‘dark places’. Given the extremely low cost of running a choir such as this, it makes the potential to set up such an enterprise easily achievable within either statutory health or social care, or in the voluntary sector.

For the full research report, please see:

Plumb, L., & Stickley, T. (2017). Singing to promote mental health and well-being. Mental Health Practice20(8), 31–36.

This post first appeared on PsychReg

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Associate Professor Theodore Stickley is the Academic Lead for Public Engagement and Associate Professor of Mental Health at the Faculty of Medicine & Health Sciences at the University of Nottingham. He led on the ESRC-funded seminar series for arts, health and well-being. This development has led to the formation of the Special Interest Group at the Royal Society for Public Health.

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Rebecca Toney: Actions speak louder than words

The hula-hoop, the shimmy and the fiddle

10 October was World Mental Health Day and on Saturday 14 October Carnival MAD enlivened the IMH as part of a Nottingham-wide programme of events: see http://www.mhaw.org.uk/

The inimitable Julie Gosling chaired the day and many brave people took to the stage to demonstrate their personal strategies for wellbeing. I was struck by how many of these were non-verbal. Hula-hooping, belly-dancing and a jaunty tune on the fiddle resonated more for me than words or pictures. And it’s impossible to hula-hoop and not smile. It’s impossible to shimmy and not giggle. It’s impossible to listen to a tune that dances and to stay slouched and crouched in your mind.

I drove home refreshed, revitalised and with some questions for us all:

  • What research question(s) might explore non-verbal ways of recovery and wellbeing in a health-service environment where talking therapies (and medication) are primary options?
  • As adults in offices at desks and keyboards should we hula-hoop now and again (the theme of this year’s World Mental Health Day was ‘mental health in the workplace’)?
  • What more can we do, together, to involve the IMH and its work in World Mental Health Day – sharing and celebrating our work and taking the opportunity to meet people who may wish to participate in a study or collaborate in its progress?

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Rebecca Toney is a Research Assistant based at the Institute of Mental Health. Rebecca works on the RECOLLECT Study – a study of Recovery Colleges in England which is led by Professor Mike Slade, Mental Health Recovery and Social Inclusion. Rebecca is a current user of secondary care mental health services and worked previously as a NHS counsellor in Staffordshire, Greater Manchester and Derbyshire over 13 years. Rebecca is keen to see the IMH ‘live and breathe’ its work and was delighted to attend Carnival MAD.

For more information on RECOLLECT: see http://www.researchintorecovery.com/recollect or email: rebecca.toney@nottingham.ac.uk.

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A Carers Life is…

A really insightful piece from Trevor Clower. Trevor organises the Carers Road Shows every year. You can follow his posts and activities through his blog.

trevorclower

A Carers life is a busy one for calls
Doctors
Receptionists
Pharmacists
Pills, bed sores, bandages & falls
A Carers life is always short of time
Appointments
Visitors
Deliveries
When their late & there’s no sign

A Carers life is frustratingly annoying
Professionals
Professors
Academics
They know best … become appalling

A Carers life is a professional one, is a pain
Qualified
Expert
Experienced
But no one slaps any letters after your name

A Carers life is popular, like the teams rowing boat cox
Assessment
Opinion
Consulted
But you get little feedback, like you’ve just ticked a box

A Carers life is relentless, needing super powers
Services offer
2 hours in a morning
2 hours in an evening
The Carer has pick up the other twenty hours

A Carers life is an invisible one, your not
Asked
Informed
Considered
In any health plan, discharge plan or plot  

A Carers…

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