Friday, 29 December 2017

Expectations (Not Resolutions)

We all have them. We've all suffered from our own and others'. Many times they are too high for anyone to fulfil. Sometimes we most misjudge our own of ourselves. Expectations and their failure or perceived failure have caused me untold tears of disappointment and frustration. I am certain I am not alone - that expectation is bound to be met!

Misplaced and excessive expectations can cause increased distress and emotional pain at any time, but never more so than in our yearly build up to Christmas and New Year celebrations.

For the past few years I have abandoned the frankly masochistic practice of setting resolutions - why do we have to become abstemious and self denying, immediately assuming we can rid ourselves of all the behaviours which cause us untold misery over years at the stroke of midnight on the 31st of December each year? Was it Einstein who said that the definition of insanity is to keep doing the same thing, expecting a different result?

So, now I tend to adjust expectations - a bit like the Team GB Cycling Team - I now aim for 'marginal gains' making small adjustments to how I've been doing things over the past year. Looking back at my path on recovery I recognise that I have changed so many of my habits and behaviours and honestly I can say that I am in a better place this year than last. Doesn't mean that everything is hunky dory or that the past year hasn't had its battles or disappointments.

What expectations do I have for 2018?

1. For Myself. Setting unrealistic goals for myself has put unnecessary pressure on me over the years. Aspiration is all very well, but honestly, I believe that expecting myself to be perfect, to hold myself to a higher standard than I have for others has meant that a significant level of anxiety has been a constant in my life. So I need to adjust my expectations.

I am living with a condition (Emotionally Unstable Personality Disorder) which means that my emotional stability is constantly adjusting to changes in my circumstances, my body, my nutrition, the presence of other people, the absence of other people, making plans, too much work, too little work etc. This means that I quickly become exhausted if I do not 'give myself a break'. I have had to adjust my expectation that I can keep on going without any regard for my own emotional and physical needs. In the past this has led me to experience repeating cycles of recovery, giving out too much, for too long and ending up exhausted and unable to function.

I now recognise that helping others requires me to look after myself as much as I care for others. Part of the healing process is accepting that I need to be cared for in order to care for others. I cannot expect to feel connected to others by either keeping myself locked away so I do not become exhausted or becoming unreliable as a friend because I wear myself out by giving out when I have run out of emotional resources. The goals I set for myself will be helpful if I keep an eye on my limits, my realistic strengths and my need to care for myself as well as others.

2. For Others When feeling intense emotional distress it is easy to expect way too much of others. In particular, I have demanded of professionals and my friends the impossible. No human being can remove my past from me, no human being can undo the harm done to me. I think sometimes within a service which is free at the point of delivery, we have expectations of staff which are not humanly possible.

If I have waited nearly a year for a treatment, there is a sense in which I expect that on day one the therapist will wave a magic wand and all the emotional turmoil and sense of emptiness will disappear. In black and white that is clearly unfair, and if you presented me with this as an objective observation I would be shocked and deny it as an expectation. However, the reality is that sometimes my anger and frustration has been directed at those who are seeking to help me, simply because deep down my expectation is that they SHOULD be able to stop me from feeling so much pain. I have often created barriers and 'tests' which have become self fulfilling prophesies as I maintained my expectation and belief that 'No one can cope with me' and 'I am incapable of being loved and giving love'. Of course people give up when they are pushed to their limits and beyond. Unrealistic expectations result in the very rejection I always fear and, ironically, expect.

Adjusting my expectations means that the limits of the therapeutic relationship and friendship which maintain effective connection can provide a stable framework in which they can survive my emotional storms. Friends and therapists alike have their limits. I have no right to expect a friend to carry the burden of my past hurts or my present struggles. A friend is someone who walks alongside - no one - not even in the most intimate of relationships can actually live my pain for me. The therapist is there as a sounding board, not a whipping boy, as a guide, or coach. They are not a fount of all knowledge, nor are they able to 'prescribe' chemicals which can remove every painful emotion or memory. In a sense, because I have survived the actual events, the emotional pain and distress I continue to feel are the 'aftershocks'. I have the strength to deal with them, I do not have to inflict the same distress on my friends or my therapist in order for them to come alongside and help me cope in the here and now.

The most pervasive expectation I have had has been that of the 'perfect relationship'. If my loved one really understood and loved me, they would know at every moment exactly what is happening emotionally to me. They would be so entwined with me that they would be able to read my mind. Most destructive of all is the expectation that if my partner loves me 'enough' then all the pain and emptiness inside from my early experiences, coupled with my physiological make up would end. Man, what a burden to put on any relationship let alone any individual. Often, this impossible expectation is coupled with the twin one of myself, ie that no matter how self destructive to me, I will do anything to 'prove' my love. Sometimes, this toxic combination has resulted in abusive relationships which have perpetuated the destructive experiences of trauma in the past. Adjusting my expectations to taking responsibility for my own emotional balance allows me to enjoy connection and relationships which are not burdened by unrealistic expectations. Accepting that our shared humanity means we all have our limits allows greater honesty and more secure relationships.

3. For Life Life is tough. For everyone. When we are at our lowest we often assume, wrongly, that everyone else and everything else is experiencing a life that is so much more than our own. The reality is that most of life is boring when people are not dealing with crisis or enjoying high points. Often I have assumed that no one else is struggling to extent that I am. It is a symptom of emotional struggles that we fail to perceive the daily grind of most people. No one exists on mountaintops in terms of their life experience. Mountains stand out because the terrain around them is lower. The lives and experiences of others we think are better, stand out because of the relative 'normalness' of those around them. I do not know what other people's experience is of life, nor can I tell anyone else what a meaningful existence consists of. I can only decide that for myself. I cannot possibly compare myself or my feelings about life to another. There are too many variables in our comparative experiences. Nor do I have a right to judge another person for struggling, particularly if I expect that their life experience has been 'easier' than mine. I have no right to call another person's mountain a molehill. Accepting myself and the life I am living as unique to me, without comparing it that of others means that my expectations of my own life shift and don't suffer in comparison. This means that material and physical circumstances become less vital to my expectations of life.

If you are finding yourself under pressure at this time of year, ask yourself what you expect, or expected from the festive period? What do you expect of yourself and others going into a new year? Are your expectations for recovery/managing your mental health realistic? Do you expect too much from yourself and others? Do you ignore the limits of living in the real world? Are your expectations of medications/professionals/human relationships for your mental health realistic? Accept what cannot be changed, change what you can, within your own limits and maybe learn to enjoy what there is to be enjoyed, moment by moment. Resolutions sound so definite, expectations can be adjusted.

Tuesday, 24 October 2017

Intricate and inextricable knots

'O time, thou must untangle this, not I.
It is too hard a knot for me to untie!'
Twelfth Night - act II sc ii

I am not just a collection of interconnecting muscles, nerves, blood vessels and bone. On its own my body is a miracle of complex engineering, but within this body there are many complex chemical and electrical interactions and reactions all with different functions - perhaps I could see these as the fuel and lubricant which ensures the machinery keeps working effectively - there are hormones which determine my readiness for creating children, my moods, my appetite. Then there is the product of my mind, my thoughts, the core of who I am. This is indefinable in purely physical or chemical terms, although some argue that even the most complex of human interactions are just the result of biochemistry, I tend towards believing that there is something intangible, the essence of who I am, which I call the Human Spirit, or soul, so there is a spiritual side to consider.

When I consider all three aspects of who I am I recognise that there is no part of me that does not impact on the others. So when I fall over in the street, which I did recently, it is not just my hand which is hurt. That, it has to be said was the first part of me to connect with the shock of hitting the ground. In short succession, physical pain, was followed by a wave of grief - I wanted to cry. Then I caught sight of the shocked faces looking out of the bus window as it passed. Grief was replaced by embarrassment and then shame. Then my personality came to the fore as a kind passerby offered some help and I waved her away and too quickly got to my feet. The blood in my circulatory system was unable to keep up with what I, as me, wanted to do, so I nearly collapsed again, the physical working in opposition to my spirit. You get the idea - if anyone had asked me what part of me was hurting I could answer, honestly; my hand, my shoulder, my ribs, my knees, my pride, my sense of independence, my self confidence, my conscience (guilt for refusing a helping hand). Had I been taken for medical treatment only those parts of me which were evidently hurt would have been treated.

Too often we experience health services which treat only one aspect of our person. So we treat the 'flu, but neglect the emotional impact of feeling drained physically. The plaster cast, sets the bones and supports physical healing, but the emotional cost of a physical trauma is neglected until it becomes unavoidable.

I have been thinking about this silo approach to well being recently in regard to mental health and disability. Too often services and benefits tend to separate physical disability from mental illness or emotional challenges. This is why so many disability assessments have been running into difficulties and result in so many appeals which are overturned nearly 70% of the time. The reality is that 'seen' difficulties are the most easily identified and therefore treated or managed. It does not require a hard pressed NHS service to take time to investigate or have to spend time on treatment when presented with bruises or broken bones. When presented with emotional or mental distress, time is required as well as to change the approach from 'What is wrong with you?' to 'What is causing so much distress?'. The first question allows the professional to decide how to fix the problem, the second question opens up the need for a more long term intervention. Often Mental Health interventions are time limited when mental health issues require time and relationship, something that a six week hourly intervention cannot offer.

The thing is if you can help me to manage my emotional and mental responses to the physical pain or trauma I have experienced it is more likely that the physical therapies and interventions are likely to help me recover from or manage my physical challenges. Equally if you can help me address the physical causes of my exhaustion then I am more likely to be able to manage feelings of depression and anxiety.

I have been reflecting on my own recovery in these terms and recognising that persevering with looking after my physical health will help me to continue to manage my mental health. It is common sense, it also makes financial sense when applied to a resource-and-time-poor NHS. Yet I have to piece my recovery plan together from different silo'd teams under my own initiative. I am effectively the wellness hub for my own recovery.

When I worked within criminal justice I was privileged to be part of an multi-disciplinary team made up of police, nhs, probation and charities staff each working with individuals to address the complex factors which were stopping them from reforming and ending their offending careers. As long as an individual undertook to manage their own offending behaviour, our team would provide a range of support to help them with housing, employment, substance misuse, education etc. It was effective and when the people we were targeting were responsible for 80% of local car, thefts and burglaries was arguably an excellent investment. Even with the costs involved it was still cheaper than prison for most of the people we worked with.

What do I learn from this when applied to health? Well first there was a concept of 'end to end management' from the point of arrest to the point of end of sentence. Our team picked people up and worked with them through court, into prison, out of prison and to the end of licence or community sentence. If they re-offended they came back to the same team to begin again.

What if health and social care teams in hospitals and the community were integrated and worked in the same place? What if every person who has undergone significant surgery, or who is managing a significant physical disability has access to evidence based mental health well being practices as part of their recovery? What if mental health was seen as part and parcel of recovery from significant physical illness? What if we stopped separating off mental health units from the rest of the hospital except for those requiring the most intensive mental health support? What if we actually practised our interventions on both physical and mental health as if there were parity of esteem? What then?

Friday, 22 September 2017

Reflecting on Relapse and Resilience

We were walking uphill. I had known that the walk involved going up. I can see the woods at the top of the walk from my house. However, a sudden emotional storm engulfed me and I started sobbing and becoming angry towards my dog, who was running UP. With me attached to her lead. Looking back I'm laughing, in fact, my snapped responses to my friend who was with me, you know, 'I'm fine.', 'what's wrong with me', 'stupid dog', just as suddenly as my anger had arrived prompted sudden laughter. 'No wonder you're struggling, you swam half a mile this morning!' Common sense. Check the facts. Don't rely on how I'm feeling. Fluctuating moods is how it is described. Hardly surprising then that when I am physically tired and continue to push myself, my emotional control goes out the window. Fluctuating moods is basically 'what's wrong with me'!

About five years ago, such a process of understanding the waves washing over me would not have been possible. Understanding my condition does not stop my emotional reactions. What it allows me to do is to take a step back, pause long enough to stop the feelings overwhelming my ability to see the world around me with some degree of balance.

My recent travails with the system of 'reformed' benefits and the consequent relapse has given me reason to reflect on the state of 'recovery' and the nature of resilience.

By reaching the age of fifty despite the emotional and other storms of my life, I have shown resilience. I have bounced back from setbacks, again and again. That's resilience, right? I think it is, but I am also learning that rather than just waiting for my 'bounce back' to kick in when I am in crisis, there are everyday routines and activities which feed by resilience. This, I think is the main occupation of the person in recovery, to feed and nurture the parts of me which keep me involved in living.

Part of this task is recognising the restrictions, boundaries and limits that my condition places on me. For example, if I want to do a full time job odds are it needs to be emotionally neutral, have limited contact with people and probably be very non challenging. However, I also need to recognise that as someone with skills and experience in certain areas I still need to be challenged in my day to day occupations. So the compromise I make, in order to make my commitments sustainable, is to limit the hours I work/volunteer so that I have recovery and nurture time. As someone who worked full time in challenging careers since I left university, admitting that this was a need to maintain my recovery and prevent relapse has been a struggle.

I have had to accept that if I am to break the patterns of over-commitment, exhaustion and breakdown, I need to focus on what I can realistically sustain while managing the fluctuations in my moods.

Here are some ways I am trying to maintain my recovery and build up my resilience:

1) Set realistic limits and be honest with myself and others about what those limits are. I am mostly involved in running a community well being group and that has been my focus for the past couple of years. In addition for short periods of time I help deliver a six week course which links in with my involvement with the other group. I was asked if I wanted to help with a group aimed at helping older people. In terms of time that came to 6 hours a week. Surely manageable for someone who has worked full time most of their life? What I need to remember is that when I did work full time I had constant meltdowns, high levels of emotional instability resulting in emotional exhaustion and necessitating me leaving job after job, usually in five year cycles. I am more than capable, but my emotional and mental resilience needs constant monitoring and maintenance and I was never able to sustain that when 40 hours of my week were taken up with work alongside volunteering in the evenings and at weekends. This week I found out how my limits have changed. In addition to the four hours involved in the group and course I had two separate meetings on two consecutive days, meaning my routines were interrupted four days in the five day week. By Thursday, my busiest day, I had become tired and confused about meeting times, something I usually never am. As a consequence I recognise that I need spaces in my week to give me a breather from giving out. So my pattern will become, Monday morning small group meeting, Tuesday focus on my own health, Wednesday writing and work at home, Thursday morning, course, Thursday evening, group, and Friday time and space. The time and space needs to include time with friends and family who are nurturing. Against my instinct that I will be letting people down I have had to pull out from my involvement with the older group.

2) I am recognising that my needs are important too. We all know the feeling of pressure and obligation that comes when we have taken on too much. When there is so much need and there seems to be so few community resources, as a compassionate person it feels like a personal failure if I am unable to meet all those needs. Except, no one asked me to. I am reminded of the words of a co-worker in a charity when I was visiting the Sudan and witnessed firsthand the extreme suffering and need of refugees, 'You can't change the world, but you could change the world of one person, just by witnessing and reporting what you see.' It was easy to connect with the suffering and allow myself to be overwhelmed by it, but again, no one asked me to. Just because I see the need does not mean that I have to be the person to meet it, indeed I may not be the best person to meet that particular need. When I am focused in helping out and when I make space for my own needs, then I am better able and equipped to give out, without burning out and consequently resenting those I am trying to help. I have recognised this in others, particular mothers of young children who feel guilty because somehow their children have become question, when did you last have space to yourself, to just relax and enjoy a moment or two of pampering? We are very bad at prioritising time to recharge.

3) Physical fitness has a direct impact on my ability to manage my emotional health. This is different from saying, when you feel low, go out and have a walk, or just do something. This is about preparing much as an athlete prepares for competition. The years before the Olympic finals are vital long before the need to perform at the top of their ability. I now work as hard at maintaining my weight, balancing my food and maintaining my sleep patterns. When in the early stages of recovery from emotional exhaustion I needed all my energy to practice my emotional and distress management skills. As my emotional health recovered was the time to think ahead, admit that there will continue to challenges which will sap my emotional strength and admit that to give myself the best chance to manage these life events well, I also need my body to be functioning as well as possible. Sounds mechanical but we often forget that we are one fully integrated unit, so when I have a cold I feel lousy. In the same way I give myself the best chance of coping with mental and emotional illness if I am not also fighting my own body. As with everything balance is important - I need to watch that I don't over do the exercise or become obsessed with eating and food.

4) Above all I need to be aware and notice what is happening to my thinking and my physical wellness. The easiest route to fixing a problem is to notice it early. Most of my life the strategies and skills I was using to 'get through' did not help me towards a meaningful and fulfilling life. It is better for me to practice skills which help me monitor how things are emotionally and physically so that I can take the appropriate action and end up in a spiral downwards in my health. There are some early signs... routines with the dog and cleaning the house, losing track of appointments and time, becoming obsessed with online games. I can do something about what is happening at this point if I notice in time and do something about it, including talking to my GP or to trusted friends and getting help in working out what has triggered issues.

Resilience and maintaining recovery require daily and even moment by moment awareness of what is going on around me and within me. This is not about being self absorbed but is about recognising that one of the ways I maintain my wellness is to be aware of events and their emotional and physical impact on me and my condition.

Saturday, 12 August 2017

Dealing with the 'Robinson Crusoe Effect'

For an image of isolation, it is hard to find a more complete picture than that of the person stranded on a deserted island. I was first introduced to Robinson Crusoe through the black and white, dubbed series which was shown every summer on Saturday mornings throughout my childhood. I was familiar with the story of loneliness told - of the desire to find the owner of one solitary footprint Crusoe found on 'his' beach. Later on, I was able to read the original novel and found that the story does not end on the island. Crusoe is eventually rescued and returns to England. What I find interesting is that he does not embrace his return to society with unfettered joy. There is a challenge to breaking the isolation.

For many of us the isolation caused by emotional and mental storms is like being stranded on our own islands. Recovery is our story of rescue and return to our communities or our families. If you are like me, being solitary feels safer than being a part of wider groups. It is a constant challenge to myself to break away from my island where I feel safe, with my pets. It is comfortable most of the time as most of my struggles are evident in relationship with other human beings. However, the reality is that we are made to relate to others, to something bigger than ourselves. For me I have a personal faith in someone who is so much bigger than me and the island I inhabit. Others may find their something bigger in other things. What I need to acknowledge is that often the pain of relationship is temporary and persevering with those relationships is important to my long term recovery.

I love the imagery of John Donne, a poet who mixed images of every day experience with the deeper spiritual experiences of humanity. He sums up best the reality of needing to reject isolation in favour of being a part of community: "No man is an island, entire of itself; every man is a piece of the continent, a part of the main". If one part of our coastline erodes, there is loss for the whole island. Sometimes we focus so much on joining with others, that we neglect our own value in contributing to the whole.

This is a critical result of low self esteem. We are unable to value ourselves as a necessary part of the whole yet, moving forward in recovery means that we continue to learn about our value in relation to others.

So where do I begin if I have been isolated and become comfortable with my 'own company'? I have found that the best way to get to know others is to do something together. It is so much easier if there is a task or activity to complete with others, than having to 'socialise' which can be so problematic. Here are the steps I have taken to avoid growing into my isolation:

1. This week I have received my 10 badge from Blood Transfusion. It is one of the easiest ways to feel a part of wider society and to know that I have something valuable to contribute. The benefit is that staff and others donating are good at offering a welcome - it is time limited, and you get a brew and a choice of choccy biscuit or crisps.

2. I have been blogging and sharing my story online within different forums. I would say be protective of yourself if you go on social media. Keep yourself safe by not giving too much away. Even though I have blogged for a number of years on here, I have never told every detail of my experience. Partly because over exposure of my personal struggles is probably unhelpful to others and also because I do not want to make myself more vulnerable - once it has been published it is out there and I have lost control over who sees it and how far it is shared. The benefits are that you are not alone in your experiences and you hopefully will find support.

3. Volunteer. There are different ways to get involved in different ways. If people are a real struggle for you, think about local pet charities. Locally, there is a hedgehog hospital near me, a Cats Protection League and ways to get involved. I am a member of a local church. I have been able to go along when I feel able to the larger meetings, but through the week I can offer to help out with refreshments for the Parent & Toddler groups - no need to go in among the seething mass of toddlers! It is good to be part of a group which has a wide range of ages and therefore different needs.

4. Sport and Exercise. I have managed to get back to swimming after nearly 8 years of trying. I have found times when the pool is less busy and a bonus has been that people are creatures of habit so I am getting to know staff and other swimmers. The benefit of a sport like swimming is that if I don't feel like 'doing social' I can just do my swim and get out and go home. My GP has also signed me up for a 3 month health and fitness group. This gives me the push I need to extend my social circles because I am given free access to the leisure facilities if I attend a weekly class. It is a good way to find out about other groups that I can continue with after the 3 months is up. The big help is that I am using my DBT PLEASE skills which are a big part of keeping myself well and stable.

5. Keeping in touch. I actively try to keep in touch with friends by setting up time for coffee and/or walks. My dog is a big help to get me out of the house. When I am unable to attend the big church services, I try to keep in touch with at least one friend through the week.

These are things which have helped me. One thing I have had to learn is that because of my emotional ups and downs, I will have times when I feel so alone, even though my head tells me I have a strong network of caring friends. For me, I need to accept that is the way I feel, sometimes but it is not my whole life. Even in the most stable of relationships people without emotional fluctuations can feel alone. I need to remember 'this too shall pass' and do my best to think of my efforts to connect with others as one of the essential skills to maintaining my recovery.

Sunday, 14 May 2017

Taking the 'PIP' (Part 3) Relapse

Relapse. There it is. In black and white. After nearly three years of slow progress towards a semblance of stability, in March I found myself referred to the Single Point of Access by my GP, following what felt like a major setback.

I'm avoiding the term 'breakdown' because I know I have been much lower, for longer, in the past. However, given that I had been contemplating ways to go back to paid work, this time last year, to be faced with the full extent of my regression and loss of emotional stability, felt like a slap in the face.

The major trigger? The ongoing uncertainty over my financial stability and the emotional impact of going through a PIP appeals process which is destined to end in a court hearing where I have to prove that the impact of my emotional and mental instability significantly impacts my daily life. I returned my request for a tribunal on 10th January 2017 and am still awaiting a hearing date. That along with the hardship caused by losing two thirds of my income in one fell swoop has had a devastating impact on my ability to manage the symptoms of my condition. I became exhausted with the effort of trying to manage my day to day life. Something the PIP payments are supposed to help with. Eventually, I became so exhausted I started to press my self destruct button, repeating self defeating behaviours from the past, because it seemed that no matter how hard I worked to maintain my recovery it seemed as if I were the mole in the arcade game and circumstances, particularly the system designed to support me and which I had paid into for most of my life, was wielding the large mallet which was constantly crashing me down, every time I managed to push myself up again.

Meanwhile, a decision on my PIP payments, which replaced the DLA is still awaited. The process has now lasted nearly ten months. I have never received any mobility payments, but the additional daily care component had allowed me to continue to work on a part time basis for nearly two years more than I would otherwise have been able to following my initial diagnosis. I am in 'limbo' unable to move forward towards paid employment, paralysed by a complex mix of stigma, over qualification, lack of transport options and the lack of confidence caused by my experiences of employers and interviews over the past five years. Who wants to take a chance on someone with my mental health history?

This situation became untenable, the skills which were helping me to maintain a level of stability were essentially rendered useless as I was overwhelmed by the complexities of a situation beyond my control.

The good news is that in the time since my last referral into Mental Health Services, there has been a recognition that for someone like me, a hospital ward is not a positive environment, nor is it somewhere that I seek to be to find safety. I am currently under the care of the Home Treatment Team (HTT), but needed acute care in the initial crisis period. I was offered a place on the Acute Therapy Service (ATS), an intensive six day placement which required me to travel to a local unit where I spent time undergoing a booster for mindfulness and Dialectical Behaviour Therapy (DBT) Distress Tolerance, Emotion Regulation, in addition to Occupational Therapy approaches, Mentalisation, Holistic therapies (I opted for head, shoulders and neck massage) and art therapy.

As with DBT, the success of the ATS requires a high degree of motivation towards self management. Having benefited from the 18 month DBT programme I found that I was able to refresh some critical skills I had lost over time, as well as having a fresh approach from an OT perspective to 'regrouping'. Throughout there was a recognition that during my stay some 'magic bullet' which would have removed all the factors in my life that ground me down, was impossible. There is no such thing. What I was provided with was space to let go of the pressure to keep going regardless of my ability to do so, space to remind myself about the importance of self care and self compassion and most importantly an effective structure in which to begin to regain my sleep routines. As with the main DBT programme I left with a reminder of what I could manage, my limits, a structure in which to regain my emotional stability and most of all, a belief that I could cope.

The uncertainty around the PIP has not changed, in addition there is destabilising atmosphere of an election campaign which offers little hope of respite of those affected by 'Welfare Reforms' - I am accepting that this environment is too strong for me to fight on my own. Above all, the injustice inherent in the PIP assessment process is something which I cannot win against on my own. I must stop 'tilting at windmills' and use what energy I have to survive and hope that I can regain what has been lost through this period of relapse. Above all, I am reminded that recovery is not a straight line.

Monday, 16 January 2017

Oceans of Emotions

I've always loved water. Being in it, on it and under it. I've enjoyed swimming in all kinds of swimming pools, beautiful Victorian bath houses with cold little cubicles, my modesty sheltered by Circus tent-striped curtains, modern circular 'fun' pools, aimed at frustrating the serious swimmer, rivers, lakes, and most exhilarating of all, the sea. Again and again I have returned to water imagery to try to explain the complexities of my own mental health struggles.

As I have widened my experience of explaining, discussing and challenging assumptions about mental health in general and my own diagnosis in particular, I have realised that, because I cannot show you operation scars, or other visible symptoms, it becomes difficult to help you understand my experiences.

When your primary symptoms are centred around emotional volatility and their impact on your behaviour, most people think that you are describing being 'moody'. That or words and phrases like: over-dramatic, highly strung, over-sensitive melodramatic, emotionally manipulative, serve to dismiss my experience and need for additional support. This has come sharply into focus throughout my recent experience of going through the Work Capability and Personal Independence Payment assessments. So, once again, I will try to explain how come time and resources have been spent on treating my 'moodiness' since my diagnosis in 2011.

Mablethorpe V Maui

I grew up with visits to the seaside on the North Antrim coast, which means that I became used to waves crashing in from the Atlantic. As a strong swimmer I enjoy riding on the top of waves as they hurl me towards the shore. Once when visiting Ghana, I experienced huge Atlantic waves with swirling undertows which were far too strong even for me to cope with. I certainly learned the limits of my ability in the huge Rollers off Sir Charles Beach on the Gold Coast.

Imagine then, my first visit to the North Lincolnshire coast, when after nearly a year in South Yorkshire a group of us went for a day out at the beach. As the flat beach gave way to water, I was deflated, as the 'waves' (or rather ripples) lapped at my ankles providing none of the excitement or exhilaration I normally associated with sea swimming.

My point is? Imagine that you live your life with emotions which never reach the ripples of Mablethorpe. Imagine that every day you awake with an emotional arousal akin to the waves crashing in off the Atlantic onto the Antrim coast. You never manage to start or return to 'neutral'. Then imagine that the everyday events and trials begin. Someone cuts me up in traffic - I am not able to be annoyed, because my emotional temperature is already raised, one small event can provoke an outpouring of rage.

So what? A lot of people experience road rage. Problem being that the waves of emotion are at Gold Coast levels and continue that way for a sustained period of time. Now imagine that before I can return to smaller waves of emotion, I receive an important phone call at work, which puts additional pressure on my deadlines for the day. The emotion switches, but returns to huge crashing wave levels, this time of anxiety. As a result of this heightened emotion I find I have physical symptoms, nausea, triggering migraine symptoms. Sometimes I may throw up. Sometimes I may find I succumb to a debilitating migraine attack lasting 48 to 72 hours. I am only half way through a normal day.

In the past sometimes the only way I had of reducing the high levels of emotion was to self harm - thus somehow releasing the building pressure. Imagine cycling through a full range of emotions from anger, anxiety, to relief and feeling excessively giddy several times in one day, like this. Is it any wonder contact with other people and life in general is exhausting?

Oceans V Brooks

One of the observations commonly made by others about the behaviour of people with Emotionally Sensitive Personality Disorder (formerly Borderline PD) is that my reaction is out of proportion to the triggering event. There are a number of reasons for this, some biological, some due to my experiences in life. Research has shown that the emotion centre of the brain (Amygdala) is more highly attuned and sensitive than average. For those who have experienced childhood trauma this emotional disfunction means that memories, particularly the emotions evoked are overly vivid and are experienced with the immediacy of immediate experiences - as if I am reliving the original trauma related to the given emotion.

Sometimes the encouragement to 'just let go of the past' adds to the pain, as I feel judged for feeling the fear, rejection, sense of shame with the same power as if it had happened in the immediate present. When I fear that I am going to lose a friendship, I am not only filled with the fear in this moment, it connects with every time I have experienced rejection throughout my life. So, I am not only dealing with one wave of emotion at a time, I am trying to manage oceans of the same emotion, an accumulation of every time I have felt, particularly, painful emotions. Again, is it any wonder that my emotional reactions are out of proportion to the triggering event in the here and now?

Self Defeating V Effective

There are effective ways of managing life but there are also self defeating behaviours which over the years I have developed to help me get through the crashing emotional waves, but which do nothing to take the power from them. Symptoms related to the emotional turmoil of ESPD (BPD) include, self harming behaviour, substance misuse, overspending, excessive speeding, or reckless driving, problems with eating, an unstable sense of self, major problems in relationships. When I am struggling to maintain day to day life in the face of my turbulent internal struggles, it becomes impossible to think of more effective ways of coping. However, those self defeating behaviours, which, however, flawed, have kept me going over the years, need time, patience and space to be replaced by more effective coping skills.

Having painted part of the picture I hope this explains why Dialectical Behaviour Therapy (DBT) is such an intensive course of therapy. Once I was discharged, it was only the beginning of managing my emotions daily using the skills taught to me during the DBT programme. When talking of mental health conditions, I think people become confused particularly once direct care ends. If I am discharged from hospital following an operation, then the problem has been dealt with and my condition, hopefully improves. For some mental health and physical diagnoses there is no end point. Just as the diabetic needs to undertake both medication and lifestyle changes to manage their condition effectively, so I need some medication, alongside the DBT skills to be able to keep the waves of emotions manageable. 'Manageable' is not 'dealt with'.

Monday, 9 January 2017

Taking the 'PIP' (part 2 - My New Life on the Rubbish Heap)

In the past two months I have had my income slashed by 2/3. Let that sink in. I have been assessed by the DWP as being unable to return to paid work due to the impact of my condition. But the same department have decided that I am not sufficiently incapable that I require any additional help with my living costs. So, I am adjusting to having £80 a month to live off after I have paid my housing and essential costs. I do not drink alcohol, I don't smoke. I have disposed of the vehicle which was helping me to volunteer and visit important friends once or twice a week. I am no longer able to afford the cost of swimming which was part of a plan agreed with my support worker to help me keep well. The council funding which would have supported projects open to people on limited incomes has been slashed. Opportunities to develop social skills and help me overcome my depression and anxiety symptoms have now closed down.

I am tired of fighting this system. I am sick of hearing myself pretend that I am doing okay with it. I am sick of not being able to be positive about the prospect of maintaining my recovery because the system keeps kicking me down. All made worse by the speech making and promises about mental health. My response to Mrs May right at the moment on how to achieve a major step forward in helping those of us with mental health issues is: please provide an adequately qualified assessment of mental health conditions using those who have experience of the complexities inherent to decide how my condition affects me on a day to day basis.

You may detect from the tone of my opening paragraphs that I have failed (again) in my paper appeal against the wholesale loss of all disability related benefits which has stripped out two thirds of my income. I am now facing the prospect of having to present my case within a courtroom to a panel which will include a member of the judiciary.

The following is the basis on which my appeal failed (bearing in mind that I have been unable to cope with reading any correspondence from the DWP since last June, anything that I know has been filtered by my support worker, so I did not have the full impact of the decision):

1. Prior to the assessment, I had suffered a number of vomiting bouts related to anxiety and stress caused by the PIP process. I decided to take additional meds to ameliorate these symptoms so I would not be sanctioned for missing the appointment. This was cited as evidence that I was managing my symptoms. Despite obviously overdosing on a range of medication this was not recognised by the 'health professional' or the faceless and nameless assessor at the DWP. This betrays a significant lack of medical knowledge related to the medication of complex co-morbidities related to BPD (Borderline Personality Disorder, aka Emotionally Sensitive PD).

2. Because I am intellectually capable of being able to read, interpret and use bus timetables, it was assessed that I do not struggle to use public transport. This is despite me explaining my experience of high levels of anxiety and inability to cope with large groups of people and sudden changes to timetables caused by road traffic incident, road works, etc.

3. The 'health professional' assessed that I was only affected by fluctuating moods on approximately 2-3 times a month. This directly contradicts the information I provided during the asssessment, or, indeed any rudimentary understanding of the major symptoms of ESPD. At the outset of the assessment interview I asked the assessor about his understanding of mood disorders in general and Personality Disorders in particular, he stated he had no experience of mental health, and none at all of PD. Given the complexity of diagnosis and the need for specialist intervention in order to accurately assess the groups of symptoms evident in ESPD, the PIP assessment is at best a blunt tool and at worst an actively vindictive weapon which effectively exacerbates the worst of my symptoms.

My overall observation of this assessment is that even for physical conditions it is rudimentary in the extreme. There is no scope for assessing those of us considered 'high-functioning', ie there is no method for assessing the emotional and mental impact of my mental health condition. It can only assess my intellectual capability which entirely misses the point of how mental health conditions affect people's ability to function on a day to day basis.

Overall my feelings at the moment are frustration and impotence. I know the progress I was making in trying to rebuild a life which allows me to manage the worst of my symptoms has been stopped in its tracks. Following the indifference and active anti-pathy towards the more vulnerable in society evident in our political leadership and rhetoric, I fear that I must become accustomed to my place on the rubbish heap of society. Simply because it seems that, at heart we, as voters will always put our own self interest ahead of everything else.