Thursday, 7 March 2019

Noticing


One of the most popular activities in our weekly group is our 'noticing'. We spend up to 30 minutes outside (particularly positive when Spring is in the air) and focus on each of our senses in turn as follows:

1. Notice 5 things you can see.
2. Notice 4 things you can hear.
3. Notice 3 things you can smell.
4. Notice 2 things you can touch.
5. Notice 1 thing you can taste.


It's a simple exercise and it builds on our regular practise of mindfulness. So the aim is not to focus on the number of the things we notice but on the experience of focusing on the world around us, rather than being stuck inside our own heads. Above all we are not judgemental of ourselves and we try hard not to be competitive. Some days it is easier than others to be mindful of what's around us. What is most important is that we try so that we learn to 'give our heads peace' - if only for a moment.

Monday, 21 January 2019

I. Am. Not. My. Diagnosis....(Some (Personal) Do's and Don'ts of Lived Experience Involvement)

Since I received a diagnosis which gave me access to Mental Health Services, I have spent a number of years being asked to 'be involved' with different projects within my local NHS. Some of them felt effective and useful, but many despite initially being a positive way to improve services for others with similar experiences have fizzled out - or come to an abrupt end, with little or no feedback to me regarding the reasons for the project ending.



Over the years I have come to the conclusion that the main reason for mine and others' with Lived Experience ending up being discounted, lies in a strange dissonance between Professionals' belief in encouraging self management and self advocacy for 'service users' and an aversion to risk. Usually this is articulated as concern for the fragility of 'Peer Workers', statements around avoiding 're-traumatising' me when I am asked to use my experience to inform my perspectives on Mental Health Services.

Above all, I think the main hurdles to true involvement for those of us with 'Lived Experience' lies in assumptions around individual diagnoses. Unlike medics who deal with physical well being, there are few direct treatments which act as 'magic bullets' to 'cure' mental ill health. There are few commonalities in causes even of the most commonly diagnosed mental health conditions. Nor is there often consensus among professionals about the most effective interventions for everyone with the same 'Label'. Mental Health is so challenging because we need to address issues of the whole life. Assessment may take months, or even years to provide clear understanding of my complexities, let alone begin to help me manage my condition so that I can achieve a 'life worth living'. To understand the risks of my condition, means that you need to understand me as a whole person. To learn to respect my recovery journey means understanding what works for me in managing myself so that I can function effectively. If I am in Recovery and I believe I have something to offer to your project, please trust me to know myself, my risks and what works to restore stability. If I take on the role of colleague, then I do not ask of colleagues therapeutic support, anymore than if I were working in any other context.

As with most aspects of Mental Health, much can be solved by addressing assumptions and expectations - on both sides. My experiences have led to me developing some Do's and Don'ts for helping make my involvement effective for both.

Don’t overpromise – if I have had a good experience of services any inability to deliver on what you have promised will erode any trust. If I have had a poor experience it will reinforce my lack of trust in the NHS as a whole.

Don’t get me to commit to projects without everyone involved being in agreement. I cannot tolerate conflict when seeking to rebuild work confidence. Nor can I on my own change an organisation's culture.

Don’t ask me to go through recruitment procedures, unless there is a definite green light.

Don’t tell me you will be in contact, then fail to make any contact. If there is a vacuum in communication I will fill it with my self-critical beliefs that I really am useless and unwanted.



Do keep me informed of delays/concerns about NHS policies and procedures.

Do be honest with me about the challenges of changing staff culture and assumptions about working with people with Lived Experience.

Do give me the opportunity to talk directly to staff on teams/departments who are considering peer roles. Hearing real stories and meeting real people challenges stigma.

Do trust me to manage my own condition – I am not relying on colleagues to be part of my recovery plan and that needs to be made explicit.

Do make role descriptions and remuneration clear before engaging me in any work voluntary or otherwise.

Do be upfront and honest with me if you have any concerns about my wellbeing and then expect me to be responsible for putting my Recovery Plan into action.

Do be honest if there are organisational/policy changes which will affect my continued involvement – try to give me as much notice as possible so I can adjust. As much as I try any ending that is unforeseen will feel like an immense rejection and may impact negatively on my feelings of self esteem.

Monday, 7 January 2019

The Power of 'Yes'

Of all the skills and habits learned during Dialectical Behaviour Therapy (DBT) there is a small but significant concept known as 'willingness'. When I first came across it in a group skills session, I immediately linked it to my willingness to engage in the DBT process. However, after some years of recovery and reflection I can see that it goes so much deeper.


As an English student I challenged myself to read James Joyce's Ulysses....bit of a pretentious phase, but the sense of achievement paid off the effort. One of the episodes that make up this epic novel is called 'Molly Bloom's Soliloquy'. It is 50 pages of unpunctuated, stream of consciousness as Molly lies in bed thinking about life. 'So what?' I hear you say. 'What do you want? A medal?' The point of mentioning this 50 page 'sentence' is that, for me, the most significant part of this piece of writing is that the 50 pages begin and end with one word 'Yes'. James Joyce believed that 'yes' is the most positive word in the English language. And that brings me to the heart of what willingness has come to mean to me.



It means saying yes to leaving the past behind. Saying yes to trying new ways of coping when my old self destructive ways have proved ineffective. It means saying yes to being part of something....accepting invitations to begin new friendships. It means saying, yes to giving human beings a chance when humans have proved to have caused me most suffering in the past. It means saying yes to the reality that I am made to be in relationships with people. It means saying yes to accepting that people can see good things in me and may want to get to know me. It means saying yes to something or someone who is bigger than me and my problems. It means saying yes to belonging and feeling that I belong after years of feeling like an alien. When I was able to leave behind the constant feeling that I wanted to escape this life and instead said 'yes' to keeping going, no matter how difficult I may find it, the power of 'yes' began.

Yes releases me to say No to those things in my life that are self destructive. Yes enables me to say No to people who prevent me from taking part in life as it can be. Yes releases me to say No when I feel pressure to do things I don't want to do, because I fear rejection.

The power of yes is not contained in any magic formula. The word 'willingness' gives the key. Saying 'yes' to changing life so that I can stop being managed by traumas from the past, or the fluctuations of moods and circumstances, means actively willing myself to choose the positive. Saying yes to life may cost at times, but it must always be weighed against the cost of choosing not to embrace 'yes'.

Sunday, 25 November 2018

Revisiting Routine

In the past I have written about routine as an important element of recovery here "https://bpdlifeinthemoment.blogspot.com/2014/10/routine-bars-of-protection-or.html" For many, one of the most important parts of treatment or therapy, particularly when it lasts a lengthy period of time, is that it provides and external routine on my life. As well as the natural sense of loss at the ending of the therapeutic relationship and important structure is removed at the time of discharge.

Early in the recovery journey I found it difficult not to immediately go back to the routines I had before I asked for help and finally had to give up my job. Problem was the life I thought I was living was completely different. It had to be, after all the way I had been living my life before had led to me becoming completely emotionally and mentally exhausted.


It took me a while and several months during which there were moments when emotional exhaustion returned because I tried to do too much too soon. Any new skills, or routines, no matter how good they will be for me, can take additional mental and emotional effort, simply because I am still becoming used to them.

Be kind to yourself, has to be the refrain - my broken leg, may have had the cast removed, but the muscles around the healing bone need regular practise and exercise to be built up around the bone, in order to make the most of recovery.

Looking back I think I focused on mastering new and forgotten skills to help me rebuild, in stages. I would identify these now as follows:

1) Keeping 'Body and Soul' together. There are certain tasks, or routines which literally keep us alive. Eating, drinking, sleeping. When beginning to recover from any illness these are essential to keeping the body going, so the mind and emotions can recover effectively. I remember the time when getting out of bed, making regular time for meals and noticing when I was thirsty, actually used up all the energy I had. I would sleep in the middle of the day, because, emotions are exhausting - what told me that this was necessary was the fact that I could still go to bed at a routine time and sleep despite having had naps.


2) Building Self Management. DBT teaches me skills over a sustained period of time. The challenge without the group skills and one to one therapy is to continue to build habits which help me to maintain management of my condition. Because skills such as Emotional Management, Mindfulness and Relationships have routines built into them, the maintenance of them, helps to create a routine in itself.

3) Finding Joy'Glimpses of Glory' is a way a friend of mine heard about last year, when a group of friends were reflecting on the past year just after the Christmas Holidays. Since 2016 when both Brexit and Trump blew onto the world stage, there has been a tendency when reflecting to focus on the negative in the world around us. Instead, looking for 'Glimpses of Glory' encourages us as we reflect to ask that we see the moments of good, the joy we find in the small things in us. When we are rebuilding after a period of illness, we may struggle to see the positive, it can be a symptom of emotional exhaustion. In spite of the fact that I struggle to socialise, I know that there are nurturing relationships and friendships, which I need to build into the fabric of my life. Again, it begins with a small step in opening myself up to friendship....relationships take time to build, but by making meeting up part of my routine, I can begin to make a path out of isolation. To find people who may be good for me, I need to acknowledge the things in life that I enjoy. Where are my Glimpses of Glory....then the next step, are there others who share my joy in these things? It's hard to walk in somewhere new, but when I have a focus, a class, a hobby, a sport, it can help to distract me. It also helps me to connect with the community around me, if I can help in simple ways by volunteering - there are so many opportunities starting with making brews and washing dishes at your local parent toddler group, for example.


These are just small ways that I have rebuilt a routine, which is a safe structure in which to build a new life, where I can manage my condition effectively. Recovery is not a straight line, there have been hiccups and setbacks along the way. But the trend has been towards a more meaningful life for me. Looking back I wasn't ready to move on stage to stage until, the effort needed to maintain new routines has reduced - moving on overlapped at times - life isn't made with beautifully straight edges, like me, the pieces of my routine jigsaw, can be messy!

Sunday, 21 October 2018

Reaching Into the Void

It is one of the most difficult aspects of the emotionally sensitive PD sufferer to communicate. It is a well of undefined emptiness, which seems to endlessly feed my fear of rejection, my sense that I am not made for this world, that life, many times, feels just too hard. It is the cause of so many devastated relationships and friendships, as my need to end the emptiness it brings, swallows up the capacity of those around me to keep loving me.


Recently, I have had the opportunity as a volunteer with lived experience to work alongside staff in a number of co-production projects. Along with the positive I have also had a glimpse at some of the more negative assumptions made about people with a diagnosis of Emotionally Sensitive Personality Disorder, ESPD (also previously known as Borderline Personality Disorder, BPD). Since I was diagnosed seven years ago, I've encountered sudden changes in relationships and friendships, based on ignorance and fear of the label. I have not experienced stigma from professionals who worked directly with me, although many with whom I have shared my treatment journey have told me their own stories of being treated as a 'headache', 'a problem patient', 'manipulative', 'difficult'. I did encounter these attitudes following my diagnosis being added to my medical history, mostly from those in the periphery of my journey, GPs, some A&E staff, those treating me for physical illness.

There is an unspoken expectation that I will be time consuming, difficult and, ultimately that I will not able to be 'boxed off' and 'sorted' by the time my intervention has ended. On reflection I know this does not reflect the compassion of the majority of professionals, but more reflects the lack of ability of the systems and organisation to deal with human beings who have seemingly intractable and complex needs. Our systems are more and more built around outcomes which can be measured and when I present with a complex web of biological and social needs, I mess up the system.

I've spent some time reflecting on the disconnect between the move from 'untreatable' to 'treatable' under the Mental Health Act 2007 and the frustration evident in eye rolling exasperation I can detect in some professionals.

At my worst I could never feel I belonged anywhere. At my worst my emotional pain was so searing and real it felt as if I were walking around with my sternum cracked open. As if it exposed every nerve in my body, pulsing in pain with each beat of my heart so that it felt as if the mere presence of another human in my personal space became unbearable. The core of these feelings centre on a void within which no person could fill.

The sense of helplessness this evokes in those who seek to show me love, often leads to the ultimate breakdown of the relationship as my see-sawing emotions create unending storms. For the person on the receiving end, this see-saw goes from 'love me', to 'I hate you', 'I knew you couldn't love me'. The intensity of loving me can be satisfying for a short time, until the void within swallows every ounce of emotional energy you have to give - many of my relationships ended because of the need of self preservation.

The pressures on the professional working with PD sufferers cannot be easily resolved by an end to the relationship. Indeed, there is a contract, mostly unspoken which says, 'but you can't abandon me, it's your job to care'. I believe from my own observation and experience of positive therapeutic relationships that this is at the heart of the exasperation of many professionals. No individual can possibly remove or fill the void and lack of self which underlies so much of my emotional dysfunction. I have seen the discussions between different agencies who step in to help, or more accurately rescue. After all, when all else fails and I am in so much emotional pain and feel that no one is listening I can always call 999. Police, A&E scoop me up and remove me from all responsibility for managing the void within. I am helped to rest with drugs, I am kept safe by restrictions placed upon me. The reality is that the emptiness remains when the drugs wear off and therefore it becomes a battle to return me to my everyday life.

Where Dialectical Behaviour Therapy (DBT) is different from other interventions is where it asks about my whole life. I need to find an answer to the void within. No one can reach into it for me. For me, meaning and hope come from a personal faith, which helps me to anchor my recovery in a belief that my life has purpose. The challenge for any professional is that the essential question is 'what does a life worth living look like to you?' and means that there is a need to listen to and explore with each individual how they find hope and meaning.


I believe the word 'holistic' is one of those trend words in psychology or medicine which we throw around without exploring to an effective degree what it means in practice. Traditionally, in my experience therapies focus on either my physiology, or my emotions, or thoughts, or all of the above. To be truly holistic we need to look at the core of our being, some would look to spirituality, others might focus on the sense of soul inherent in human relationships. Whatever, when looking at what has worked for me in DBT the difference was in helping me to accept the existence of the void within, whilst encouraging me towards finding out where I could find a sense of belonging and of purpose.

When I consider all of this it is hardly surprising that our longstanding systems and pathways don't fit the needs of the PD sufferer. So we become the 'problem patient', the awkward one that can't be 'treated and streeted'. In essence, though I think there is a need for a different approach for ESPD due to the all pervasive emptiness. I would also say that due to the impact of Mental Illness in general on our physical and spiritual well-being maybe a truly holistic approach to our therapeutic interventions is necessary to help people to rebuild lives with meaning and hope.

Sunday, 23 September 2018

Spoon Theory and Self Care

Spoon Theory was developed as a way for people with long term life limiting conditions to explain to others who may say, 'but you don't look ill/look ok', how much energy, physical and emotional, it takes just to live day by day. I love it as an easy shorthand between me and those who care to explain how I'm doing on any given day and maybe why on some days I just need to hide away.

The theory is simple. Everyday begins with twelve spoons. Before I plan anything, if I have not slept well, I take one spoon away. If I have missed my meds, or not been keeping to my emotion regulation habits, I take away between one and two spoons. And so on....some days depending on other events which are outside my control I may only start my day with six spoons for everything else in life.

This is particularly useful for helping me with being more compassionate to myself. Perhaps, if I have a social event later in the day I can restock my spoons through positive activities and rest. It helps me feel more objective about how much I can effectively achieve in my day.

It's worth trying to help plan your days. The illustration below gives more ideas about how to calculate and use spoon theory in your day to day self care.

Remember, be kind to yourself!

Tuesday, 19 June 2018

Expectations, the NHS and Unintended Consequences

We are proud of our NHS in this country. We rightly celebrate that anyone, no matter what income, or background, can access health services, for free, at the point of need. It is one of the few social contracts which have survived changes of political party and governmental ideology for 70 years. Most of us, recognise the connection between our willingness to contribute through tax and national insurance and the quality of healthcare all within our nation can have access to.


Recently I have been wondering about the unintended consequences of this bastion of the nation's welfare state. I love watching '24 hours in A&E' and more recently, 'Ambulance'. Focusing on the most acute needs and how the public services and people who make up the NHS meet humanity at its often lowest and most vulnerable point of need. At its best these television programmes show the dedication and endless compassion and professionalism of our doctors, nurses, porters, paramedics. Bizarrely, you may think, I find both of these programmes uplifting.

From time to time, though there is the exposure of an element of disdain from some of those phoning for emergency help. 'Where is the (expletive) ambulance? I've fallen over...', 'are you breathing?'....'*@!&ing get me some help....', 'Are there any injuries, are you bleeding, are you in a vulnerable position, are you or anyone with you at immediate risk of serious injury or death?', 'No, but you have to sort me out...' and so the demands go on, with long suffering Control Centre staff dealing with the abuse whilst watching the lights flash as serious emergencies build up, requiring response. Perhaps, this demonstrates the truth that familiarity - and availability breed contempt?


Before I was finally diagnosed and was able to access some very good Mental Health Services, locally - flawed and imperfect, but to me an absolute lifesaver! - I remember being contacted via the magic of t'interweb by a former student from my days teaching A Level English. She had qualified as a Neuro Scientist and had secured a post doing research at Harvard. Our email exchanges were enjoyable discussions of my fresh understanding of my own condition and some really interesting research she was involved in to do with brain structures, the limbic system and the impact on mental illness. However, naturally the discussion also included our experiences of accessing health in the USA and UK respectively.

I had received a number of different referrals, starting with my GP who had worked with me to explore beyond an acceptance my 'over-emotional' responses as anxiety and depression, the treatment for which seemed to only offer temporary relief from the patterns identified in my medical history. I was referred to specialist practitioners and consultants until we arrived at a diagnosis which led to a treatment pathway. Most of all, even though it was a label, what it gave to me was a way to understand the pervasive symptoms which had plagued me all my life.

The waiting times in 2011 had not suffered much from cuts in services so waiting times for appointments varied from two weeks to nearly a year. Despite having to wait at different stages, at no time following diagnosis was I left 'adrift', I maintained weekly appointments with my CPN and monthly appointments with my GP until the treatment I was offered had a place for me. Following five years of consistently good care, (there was the odd disappointment along the way), I was discharged with the skills I needed to manage my condition. Thankfully at no point was I forced to weigh up treatment options based on what was left in my bank account (very little as it happens).

My former student, though, shared with me that although she had very good medical insurance provided by her employer, was facing a $50,000 bill following hospitalisation after she had been involved in a serious car accident which led to her being in hospital for four weeks. The bill was for the portion of treatment not covered by her insurance.

So yay for the NHS. However, I have observed in myself along the way some attitudes which could loosely be described as 'learned helplessness' - simply because if I have any little concern about my health all I have to do is book an appointment online or by phone (forget the waiting time) for free to get it checked out. This is where our expectations and the realities of the limits of any therapy (physical or mental health related) clash. Because of the ease with which we can ask for help, I think we can sometimes confuse this with the abilities of any intervention to undo the ravages of time and/or trauma whether physical, emotional or mental. With this mind set I begin my journey towards therapy with an assumption that the professional in front of me is embued with some magical 'fairy' dust called 'The NHS Magic Dust' which they can sprinkle on my area of need and immediately bring about healing.

An unintended consequence of the availability of free healthcare is that when I am prescribed a therapy or medical intervention which requires
effort and discomfort to myself, I either ignore the prescription or try it half-heartedly or for a limited amount of time before declaring the NHS 'useless' and unable or (worse) unwilling to help me. I remember my GP telling me about patients who had been referred for physiotherapy to help alleviate longstanding physical pain. Some would return to her having completed all the Physio appointments with the news that 'it hasn't helped'. On exploring further, my GP would discover that the patients perceived the therapy to be limited to six, weekly appointments with the therapist without taking the exercises home and practising them on a daily and ongoing basis.

The first thing that made me pause for thought following my diagnosis and referral to DBT (Dialectical Behaviour Therapy) was the initial meeting with my therapist when she made clear to me that she could not stop my distress, nor could she remove the emotional pain I was experiencing. However, what I was offered was hope that TOGETHER we could work to develop skills and practises which would eventually help me to manage my condition.

I recognise why A&E staff groan when presented with someone in emotional or mental distress. If I turn up with an obvious physical wound, you can offer me support and even the means to lessen or remove the pain I am feeling.

I wonder if another unintended consequence of the NHS is in regard to our Mental Health more than our physical health. I have blamed the failings of the NHS for not providing a personally tailored solution to the complex emotional and mental challenges caused by a combination of my biology and my experiences of life. Looking at it in black and white prompts me to ask myself: 'who told you, you were the centre of the universe and the focus of all public health efforts?' It also begs the question - without referring to that other Dr - who could possibly undo my brain structures and the impact of my limbic system, or the impact of my life experiences on both of those? Certainly no earthly physician - as far as I know. Yes antibiotics have managed to help us eradicate the threat of bacterial infections. However, I am often reminded of how simple those 'germs' are as organisms compared to human beings. More than any other aspect of our health, our mental and emotional health requires that we are fully engaged and involved in both understanding and managing the struggles that we face.


A Sea-Change in attitude is emerging - a recognition that medicalising and medicating mental health is not effective as an approach, in isolation. As a complex being, I probably am likely to respond better to interventions which see me as an integrated and whole human being, rather than focusing on my challenges in isolation. 'I am not my diagnosis' resounds.

I hope that as we move forward we do so as patients and professionals joining forces to find the best outcomes for each person in need. After all, the NHS cannot possibly be present for the 95% of my life which is where I am fighting the majority of my battles against ill health. If I can do all I can to help myself as much as I can, then maybe I can leave the NHS and its precious resources for when I really need it and therefore release more resources for those who are in urgent need right now.

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