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Mood Disorder Community
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RonPrice
Starting Member
21 Posts
Gratitude: 6
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 Posted - 07/06/2007 : 01:30:30
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Preamble:
1.1 This is both a longitudinal account, going back to my birth, and a short term account taking in my most recent experiences in the last week or so, of my experience with manic-depression(MD) or bipolar disorder(BPD) as it has come to be called in recent years. If this site's administrators and/or moderators feel this post is too long for this particular "personal story" section, I am happy for it to be shortened. But my experience of posting what I am sure some will find too long a story is that my account is useful to sufferers of the illnesses(D, MD and BPD) I discuss here.
1.2 Some of the personal context for this illness over the lifespan in my private and public life, in the relationships of family of birth and of marriage, of work and now retirement and particularly some of my personal circumstances as they relate to my values, beliefs and attitudes on the one hand--what some might call my religion as defined in a broad sense--and my wife’s illness and my/our many moves over the years on the other, should provide mental health sufferers, clients or consumers, as they are now variously called these days, with an adequate information base to make some comparisons and contrasts with their own situation, their own predicament whatever it may be, and thereby gain some helpful knowledge and understandings.
1.3 Many do not feel comfortable going to doctors, to psychologists, to psychiatrists. Perhaps this is part of a general distrust of certain professional fields in our world today. Perhaps it is part of a general public being more critical. Still others do seek help and try to work things out themselves. They often find the journey through the corridors of mental health problems so complex, such a labyrinth, that they give up in despair. Suicide is common among the group I refer to here—the sufferers from MD and BPD. This account may help such people obtain appropriate treatment and, as a result, dramatically improve their quality of life. I think, too, that this essay of some 13,500 words is part of my own small part in reducing the damaging stigma associated with BPD and what might be termed “my coming out.”
1.4 The wider context of my experience which I outline here is intended to place my BPD in context and should provide others with what I hope is a helpful perspective, as I say above, in relation to their own condition, their own problems and situations. This essay of some thirty-four A-4 pages(font-12) is written for: (a) doctors and various medical professional who have dealt with or will come to deal with my disorder and who are now, at this present time, involved with my treatment, (b) internet sites and those registered/inquirers on the www at a range of health and mental health sites, especially the sections dealing with depression(D), MD and BPD, (c) my friends and associations over the decades with whom I still have contact in these years of my late adulthood(60-80) and for some of whom it seemed relevant to give such a statement and (d) for myself as a reflection, for my own satisfaction, to put into words the story, the results, of an illness, a sickness, a disorder that has influenced my life for over half a century. Originally written in 2003, this piece of writing has been revised many times after further reflection on original and earlier editions and drafts; after feedback from various doctors, friends and internet respondents and after an increase in my own knowledge of the illness as a result of further study.
1.5 I do not claim to possess a specialized and/or professional expertise in the field of the study and treatment of D, MD or BPD. I do not work with people who have such problems, nor do I have a desire to do so, although I do find that in my private life and on the internet my experience can be of use to others. That is essentially why I post here at the "My Therapy" site. This long piece of writing, too long I’m sure for some, not as sharply focussed on my actual experience and specific symptoms for others, as some respondents on the internet have already indicated, is but one of my many pieces of writing these days. The vast majority of my writing has nothing to do with this disorder. After more than 60 years of dealing with this medical problem in my private and public life I am only too happy to put it to bed, to put it into some final corner and forget it. Sadly I can not do so because I still suffer, even after 60 years, with problems that are part of this disorder’s long history in my life.
2. My Experience of Manic-Depression: The First 36 Years—1944-1980.
2.1 In the first 36 years of my life I had many episodes of various kinds of emotional disorientation, themselves of varying lengths and intensities, varying from a euphoric or high mood to a depressed or low mood. Sometimes they affected my day-to-day life severely and negatively and sometimes the affect was insignificant, hardly noticeable. After many experiences on the fringe of a normality that was my usual modus operandi or modus vivendi, as it is said in Latin , on the fringe of what I saw as my general everyday experience of life, an experience that is sometimes called the quotidian by writers, poets and novelists, I was diagnosed as a MD in May 1980 in the process of treatment by a psychiatrist. I had often been on this fringe, as I say above, a borderline zone, a limen as some historians call it, a border territory, a zone between normality and various behavioural extremes and eccentricities from my birth in 1944 to 1980.
The treatment regime in 1980 was lithium carbonate, an antimanic medication. It was the first really successful mood stabilizer for MDs, for an illness that in the 1990s began to be called BPD. My history to that point had been far from smooth and linear as my remarks above indicate. Those thirty-six years had often been bisected, polarised and traumatised. My particular experience of these all-too-common everyday personal emotional extremes away form the norm, from my norm, is only part of my story. Everyone has their story for everyone experiences all sorts of abnormal eccentricies in life, some people of course more than others and some more traumatic and intense than others.
My account of those years from 1944 to 1980 follows. I try in writing about and in summarizing these first 36 years of my life, not to overstate my case, nor to understate it, but give an account of those first 36 years which I refer to here in this general statement as phase one of my bi-polar life.
2.2 In some ways the inclusion of the names of those doctors who treated me over the years in this first phase and in later phases would personalise this account, but names are not that important and to include them here in this narrative causes confidentiality problems for some readers and for people in my own past who might not want to be mentioned. This is especially true at some internet sites where posts are rejected if names are included in any posting at the site---and so I leave names out. Those whose names I could mention would not be troubled by their inclusion here, not now, not in 2007 after an extensive destigmatization of the disorder in recent years.
2.2.1 I certainly appreciate the medical and clinical work of: (a) several of the doctors I went to in my childhood and adolescence, (b) the psychiatrists who have treated me since June of 1968, nearly four decades ago and (c) many family members, friends, colleagues and associations some known well and others hardly at all, who have helped ride the waves when the disorder raised its head yet again along the way, the road of life.
2.3 Comments on Childhood and Adolescence: 1944-1963
2.3.1 As I refer to above, I had some experience of what may well have been BPD in childhood as far back as infancy and at the toddler stage, all of the pre-school years, 0-5, of early childhood development. My mother nearly died in the first month after my birth, the implications of which it is not my intention to go into here, indeed, if there are any significant implications at all. Then onward through middle and late childhood into the puberty cusp of 12 or 13 the BPD features took other forms. The manifested symptoms which have bipolar aspects, at least to a limited degree, or so it could be argued if not proved, seem to me examples of (a) a lack of control of my emotions, (b) a far too intense activity threshold what is now called hyperactivity and (c) activity with what could be referred to as possessing some/mild bi-polar symptoms. It was not until much later in life, though, that I began to see these aberrant childhood behaviours and new aberrations at puberty and during adolescence as possibly having a link with my future mental illness. It was not until I was 19 in 1963 that any characteristics of this illness became quite clearly apparent and, in retrospect, could be called part of a BPD and given that medical diagnosis, but only in retrospect. At the time no doctor would have given that diagnosis. Even now looking back to the age of 19 in October of 1963 I felt a D so deep it was like ‘a sickness unto death,’ never before experienced, like death not warmed over, as one could say colloquially.
2.3.2 These behaviours, though, at the age of 19 or any of my behaviour before that last year of my teenage life(1963-1964), did not result in my receiving any medical attention. The first formal diagnosis of schizo-affective disorder(SAD), BPD and/or D did not take place medically until the autumn of 1968 when I was 24. I was given lots of advice from religious to common-sensical: diet, exercise, prayer, vitamins, interesting leisure distractions and interests like horse-riding, watching TV, music, et cetera. After several months to several years, 1963 to 1968, the emotional aberrations disappeared at least for a time. My episodes over those years and in the years to come seemed to exhibit quite separate and distinct tendencies and patterns. Hypomania(H) was always characterized by elation and D was always characterized by varying degrees of very low moods. Such an observation seems now to be so obvious as hardly requiring a mention, but at the core of my experience of this problem was either D or H and the impact of their various symptoms. Within those five years, though, the permutations and combinations of emotional variation were enough to being tears to the eyes of a brass monkey, as my mother used to say and, as I say, looking back in retrospect. It was a miracle I ever got my degree and my teaching qualifications labouring under such emotional chaos from time to time and often, week after continuous week.
2.3.3 In the 1978 episode, my next major episode, elation was rare and varying intensities of D were common. the episode lasted from late December 1977 to May 1980, some two-and-one-half years. The first episode had lasted off-and-on from September 1963 to November 1968, a little more than five years. This latest episode only lasted for half that time, but this was only due to the lithium treatment that put an end to my symptoms quick-smart. In 1968 I had left the mental hospital in Whitby Ontario on a mild sedative. I think it was called valergan; but I’m not sure after nearly 40 years. In the ten years from 1968 to 1978 I tried: exercise, diet, giving up smoking, sex, radiesthetics and hair analysis, jogging and play therapy.
2.3.4 In the episodes from 1978 through 1980 the constellation of: fear, paranoia and the extremes of D seemed to often be as low as I had experienced in the sixties, in those chaotic years of that episode from 1963 to 1968. I experienced in those years 1978-1980 a range of emotional swings but they were largely, at least as I recall looking back a quarter century later, at the D and paranoia end of things. A psychiatrist in Ballarat prescribed stelazine or trifluoperazine, an antipsychotic drug. It was at first administered in early 1978 and it seemed to make things worse. In 1979 I moved to Launceston with my wife and three children and, after a series of two or three quite severe emotional swings at both the H and the D end, a psychiatrist at the Launceston Genertal Hospital prescribed lithium. After just two or three days my symptoms were relieved never to return in the same form. That was in May 1980.
2.3.5 I include these observations, these comments from this second major episode because it throws some light on the first episode and places my childhood and adolescent experience of BPD, if indeed I had that disorder at all in those years, in a helpful perspective. It is helpful to me to put it this way, if not for all readers. As I go about relating this story, I go about trying to place this narrative into some coherent form. It has taken this second edition, now in its fifth draft, to get some sense of coherence, some sense of continuity, into what some biographers and autobiographers now call a ‘chaos narrative.’
2.4 From My First Episode of MD in 1963
To My First Institutionalized Care in 1968:
2.4.1 The episode in 1963 continued in a complex series of forms up to and including 1968. It was not diagnosed as either MD or BPD in those years. This episode, part of this first phase of BPD, did not receive any professional assistance until June of 1968. From June 1968 to November of that year I received institutional care in: the Frobisher Bay, now Iqaluit, General Hospital, the Verdun Psychiatric Hospital in Montreal, the Scarborough General Hospital in a Toronto suburb and the Whitby Psychiatric Hospital about a 30 minute drive from Toronto. The story of those years from 1963 to 1968 and those four psychiatric units and hospitals were my years of university study and the first year of full employment. The story of these years is long, stony and tortuous and I will not write the account of these five years in any more detail since no medical diagnosis was given, just piles of advice from more exercise and prayer, to a better diet and sex, but I do write of these six months and i do I do write of this experience in my memoirs in much more detail than I do here. To write of it here would result in prolixity.
2.4.2 In June or July of 1968, though, one member of a battery of doctors, psychologists, psychiatrists and other care givers who were then providing my treatment program in Montreal Canada at the Verdun Psychiatric Hospital took a personal interest in my case. He was the first attending psychiatrist in my life about whom I remember anything at all. He was a Baha’i, a religion that had its origins in Iran in 1844; he was one of perhaps 4000 Baha’is in Canada at the time and perhaps its only psychiatrist. He was himself at the outset of his own career in psychiatry. I had been serendipitously institutionalized here after the onset in late May of 1968 of an episode of MN.
2.4.3 I had been working with the Inuit at the time in Canada’s high Arctic as a grade three classroom teacher. Looking back it seems highly fortuitous that this first institutionalized care that I received was, in part, from a psychiatrist who shared the same belief system as I did, the Baha’i Faith. I remember him taking me out into the community to meet some of the Montreal Baha’is and their friends. Such an exercise, I assume, he felt was a normalizing experience.
2.4.4 I appreciate, as I say above, the interest, care and assistance shown by a long series of individuals, particularly the relatives and friends in my life, who over the years and as far back as 1963 when what has become, what I now define, as the first clear episode of MD or BPD began to manifest itself. The professional work of those doctors and the personal assistance of those family members and friends has been invaluable and I want readers to appreciate the primacy I give to the work of these special people for their help and support, their saving me from what in any previous age and time period would have been a horrific, virtually end-of-normal-life experience. I want, too, to particularly emphasise the personal care-givers in my consanguineal and affinal families, that is my family of birth and marriage, especially my mother, my first wife and my second. These three people were there to help inspite of the difficulties they experienced as a result of their care-giving attitudes and supporting activities. They were absolutely critical and significant others in that wider social context of family, friends and doctors over the years.
2.4.5 I sojourned in these first five years, in that first episode from 1963 to 1968, in a public and private world that was new to me. From time to time and beginning arguably on 29 May 1968 I sojourned in a place no less strange to me than if I had been among an exotic jungle tribe in Africa. It is the duty of some cultural anthropologists to report on their exotic travels and field trips, whether among the indigenous peoples of the Earth’s antipodes or to equally remote recesses of human experience among other culturally diverse groups. The account I write here, though, is not so much anthropological; it does not give an emphasis to the eccentricities, the absurd and the bizarre which SAD, D, MD and BPD accounts often do; it does not attempt to make a comprehensive statement of my experience. I leave this for my autobiography/memoirs and readers can find the story buried there in occasional references among the 2500 pages much of which is now on the internet in different forms, short and long, paragraphs here and pages there. I came, insensibly over several decades--and then only at some distant and abstract level--to associate the extremes of my BPD somewhat with the role of shamans among tribal, third world and animistic communities, people who relate their myths and their meanings by means of emotionally laden quasi-ecstatic visions.
2.4.6 On the personal level, I discovered in myself unexpected patience, humility and hope. I learned to treat life as the most precious of gifts, infinitely vulnerable and precarious, to be infinitely prized and cherished. I had not become a shaman or a saint, though; I still suffered; I was still impatient; I did not always appreciate life; I still got depressed. I had journeyed with my body, although I don’t think with my soul, into an underworld and come back, more times than I care to tell and certainly more times than I tell of here. But I have survived and lived to tell the story. This is not always the case for people with SAD, D, MD or BPD.
2.4.7 Mine was a spiritual drama of sorts—on a psycho-neurological, a psycho-pharmacological, a schizo-affective level and in 1968 the first psychiatric diagnosis, some five years after the beginning of my first episode, resulted in my suffering, my illness, having at last a label, a medical diagnosis, a name attached to it: a mild-schizo-affective disorder, for which I use the acronym SAD in what has become a somewhat long account. This mild SAD I could, as I say, narrate as a drama in religious terms and describe it as a purgatorial dark night. But, briefly, it was both a pain in the neck and a gift of the gods. Whatever it was and however I interpret its meaning in my life, it has unquestionably been a key part of my life. But it was not all my life. I do not define all my life in terms of this disorder. This account is of that part, that small but important part.
2.4.8 Stories in life, all peoples’ stories, are chaotic and confusing at a certain level of analysis, a problematique as some social scientists call the story of one’s life, especially in the absence of some kind of narrative order, an order imposed or simply narrated in a simple fashion. Even with some order, imposed or not imposed on one’s experience, one’s life is still a problematique. I tell my own story here as briefly as possible to help establish, for me, some of that sense of order. I tell of these events, as a storyteller might, of my experience of life, but it is a story not packaged for the media. It has been packaged, though, in several written forms for the internet at some 60 sites since 2004. At some of my postings there is only a brief statement and at other sites the statement is as long as this one. Without sequence or discernible causality, though, as I say, one’s story remains a bit of a jumble to say the least. Of course, not everyone feels this way. We are a highly diverse species and we see things in such different ways. Life has an element of mystery, of jumble, no matter how much knowledge and understanding we bring to our problems and whether we write an account of our life or whether we don’t. Such is my view, anyway.
2.4.9 And so this story is what I could call my chaos narrative. Certainly studies in autobiography and biography, as I say above, are now classifying this quite popular genre, perhaps and arguably the most popular genre of the last several hundred years. One sub-category of the genre of life-writing is the chaos narrative. It is written after the excesses of the chaos have gone; the experience of the extremes of the chaos are incompatible with the writing or the telling. To put this another way, it is difficult to write the story while in the midst of some of the more extreme parts of the experience. People like the famous dancer Nijinski, among others, have placed their experience in a written context during their suffering. But I could no more have written anything when in the summer of 1968 I was placed in a locked and padded room to protect myself from myself; or in the winter of 1978 living in Ballarat, an old gold-mining town in Australia, when I hid under the sheets of my bed on getting home from work feeling, as I felt a sense of acute paranoia every day. The paranoia was not experienced all the time but certainly enough of the day to make the day one that was difficult to cope with in my ordinary employment and family situation. As I say, some write in the midst of their chaos, but this is not the case with me in this account.
2.4.10 Those who are living in the midst of bipolar episodes are now telling of their experiences more and more in recent years as they come-out and as BPD becomes more a part of public knowledge. Their stories are often bizarre, but in this crazy world sometimes their stories are only one of many kinds of traumatic, bizarre and extreme forms of suffering that the world is drowning in at present. The chaos that I describe in the distant past is told here in the relative and retrospective tranquillity of the present. Living in the midst of chaos, to emphasize this point for a final time, makes reflection, and consequently any attempt at narrative for oneself or others, difficult if not impossible. Telling and, even more so, writing is a way of taking control and creating order, thus giving an account of what was once experienced as chaos as having a framework of meaning. To some extent, as a famous psychiatrist Dr.Victor Frankel once put it, suffering ceases to be suffering, the moment it finds a meaning. That is partly true and even if it is entirely true it is not always seen that way by the sufferers. But Frankel’s words apply to me in a significant way and this is partly why I write this account here. Without one of the main strands of medicine, though, namely orthodox psychiatry behind me and its chemotherapy strand I don’t feel I would even be here to tell my story.
2.4.11 The longest intense depression I had was in 1963 and 1964 with perhaps two six month periods from June to November and July to December, respectively. The longest episode of some combination package that came to be labelled a mild schizo-affective state, a combination of hypomania and depression was a part of my life from June to November 1968. This episode also resulted in the medical characterization of my illness, as I say, a SAD with the adjective mild placed at the front of the term. The episodes of H in 1978, 1979, 1980 and 1990 were treated quickly with medication, although the 1978 episode, beginning in January, seemed to last for at least three or four months and had a mostly depressive component. It was treated with trifluoperazine, under its brand name stelazine, another anti-psychotic and the side effects were horrific. Only the 1980 episode required hospitalization in this case for one month in May of 1980.
3. Enter Lithium in 1980 and Then Fluvoxamine in 2001:
3.1 Lithium was and is, arguably, the central pivot in this whole story, at least to this point in my life at the age of 63 as I live through these early years, 60 to 65, of late adulthood as some developmental psychologists characterize the years from the age of 60 to 80. I was on lithium for twenty-seven years: from May 1980 to April 2007 a little more than 40% of my total lifespan to this point, to 2007. I have experienced the symptoms of this disorder, this partially genetic disorder, with the label MD and then BPD for 27 years. I would now add at least an additional 12 years during which I was not diagnosed with BPD, but had been diagnosed as having an episode of SAD in 1968 for six months. But by 1969 I was treated and ready to enter society which I did as a security guard on what was then Canada’s tallest building in Toronto. And so, this made 60% of my life, 39 out of 63 years during which I manifested some obvious features of a disorder of some kind: SAD, D, MD or BPD.
3.2 My mood swings came to have an entirely different typically in 2001. And again in 2007, after 6 weeks on this new package of medication, on yet another medication, sodium valproate, my emotions, my feelings, are of quite a different order. The death wish, for example, which I have lived with since at least 1963 has dimished even more and is a faint residue of its past. It was not blown away entirely, but its heat had gone. If it exists at all it is as a trace element, so to speak. My mood swings have moved into new territory yet again. The luvox in 2001 took my blackness away and the colouration of my emotions late at night became grey; luvox(fluvoxamine) was added to my medication package that year.
3.3 The symptoms that affected my daily working capacity, even now, are fatigue and psychological weariness, sometimes after a night of light sleeping, tossing and turning and/or late at night after many hours of intellectual activity. One can hardly complain, though, given that this fatigue, these experiences, psychological and/or physical weariness, are the lot of Everyman to some degree and in a myriad of different patterns. My story, my experience with sodium valproate, my lithium substitute, began just three months ago in April of 2007 and with effexor in 2 and ½ months or thereabouts. More of this later in section 4 below.
3.4 Since 1980 and more so since 1990 I have had little difficulty knowing where I was in the process of mood swing, psychological orientation and general understanding, not so much of the chemistry but of its affects. Over the years I had grown used to the various plays on my emotions, my sleep patterns and my mental activity during the pre-medication phases and the post-medication affects of the medications prescribed. During this transition, though, the swing to a mild elation or euphoria was new, refreshing and quite pleasurable, after an initial period of a few weeks of in stability sleeping problems and a variety of symptoms I have described elsewhere. The transition to the medication package in 2007 was very different than the one is 1980 or the second major shift in 2001—the addition of luvox.
The great intensities of swing, had virtually gone by 1980 and in a different way by 1990, and different again in 2001 and 2007. Total acceptance of the necessity of taking lithium was a critical variable in this process and it took a decade to achieve, the years 1980 to 1990. At the hypomanic end of the continuum over the years there were experiences like the following: violent emotional instability and oscillation; abrupt behavioural changes and a sudden change in a large number of intellectual assumptions; elation, high energy and various forms of excess. Mental balance, a psychological coherence between intellect and emotion and a rational reaction to the outside world all seemed to blow away, over a few hours to a few days, as I was plunged in a sea of what could be variously characterized as: emotional heat, intense awareness, sensitivity, sleeplessness, voluble talking, racing mental activity. This was the hypomania at one end, the extreme end of the spectrum. At the other end: fear, excessive paranoia, incoherence, intense depression or melancholia, despair and a desire to commit suicide.4 Some of the latter I experienced from 1963 to 1965, in 1968 and again from 1978 to 1980 off and on; the former from 1963 to 2007 in a whole range of forms and degrees.
3.5 Memory Loss:
3.5.1 I was a classroom teacher and educator for over thirty years and I have seen a good deal of short term memory loss in both myself and my fellow man and the myriad reasons we all give for forgetting, some justified and some not-so. The experience of memory loss in my own private domain, though, may be the result of: (a) the several medications I have had since 1968 and (b) the eight ECT treatments in the summer and autumn of 1968. But, again, everyone has memory problems; a recent test in 2005 administered by a doctor specialising in treating memory loss in geriatric patients, did not indicate any particular memory difficulty or the onset of any illness associated with memory loss, like altzeimer’s disease, a disease with its own trajectory of memory problem and functioning. My current psychiatrist, who specialises in treating people with BPD and who has been providing his professional advice to me for the last six years, after a series of psychiatrists I have had going back to that period in 1968,3 does not think my memory problem is a central or even a peripheral part of my bipolar symptoms. If anything, the problem of memory has its origins in causes other than bipolarism. That was the conclusion of that specialist in geriatric care, as well, whom I saw two years ago. After forty years of evidences of bipolarism in my life, I am inclined to think that my memory loss is, again, not something that should concern me unduly in this account of my bipolarism even though it is a practical concern in my daily life.
3.5.2 The memory problem also contributes, as you can appreciate, to many practical problems in day-to-day life. I mention these things because, although my bipolar disorder is largely treated, there is a constellation of physical and psychological difficulties remaining, in addition to the residue of bipolar symptoms remaining. I do not want to emphasize these problems, though, because such descriptions detract from the central theme of this account. Their relevance is indirect though not irrelevant to the way I experience my life.
3.6 More General Comments:
3.6.1 It seemed appropriate to outline this detailed statement of my experience with BPD for several purposes since the issue of the nature of my problem and what was once called MD, at least until the 1990s, is a complex one. The story varies from person to person and has been of concern to me over the sixty-three years that I have had to deal with its symptoms in my personal and professional life. Others close to me, some of whom are now called care-givers, have also had their concerns.4 It is difficult to characterise my condition and it is for this reason that I have written what some may find to be an overly long statement. As I say above, I write this for both my satisfaction and the use by others, especially those who suffer from BPD.
3.6.2 I hope this account, in both long and short term contexts, will explain adequately my reasons for not wanting to work in any employment position or participate in any demanding social context. It was for this reason that I drafted the first edition of this essay, this account, four years ago now in 2003. This account, now in its third edition may provide those interested, as I also say above, with some useful information for dealing with their own particular problems, perhaps even problems not associated with bi-polarism.
3.7 The Process:
3.7.1 There seems to be a process, one of immense variability, that I have experienced on a daily basis for arguably, 63 years. The details, the symptoms, the behaviour, varies from year to year, with the decades, with the days and especially with the medications I have been placed on since June of 1968. I cross from some normal behavioural constellation to an abnormal, intense one. The abnormal extreme position varies, as I say, from day to day, month to month and year to year in content, texture, tone and intensity. In 1946 it was characterized by uncontrollable early childhood behaviour and eccentricities. My mother had to deal with these aberrations. I think the diagnosis of bipolarism at that early stage of my life in 1947 at the age of three is only a remote possibility given that only 1% of people with BPD are considered to have exhibited BPD behaviour during their childhood or adolescence before their late teens. Looking back to my childhood I did have some behavioural abnormalities, but their association with bipolarism is, I think, unlikely in retrospect. Behavioural abnormalities in children are also as common as air and it seems to me, at this stage of the understanding of my disorder, that to impute bi-polarism may be premature at best and simply incorrect at worst.
3.7.2 At the moment, at the age of 63, the negative aspects of my BPD are several, but I will go into these details, these more recent manifestations of this disorder at least since 2001 in the next section of this essay, section 4. Due to the above "process" more than sixty years, due to the part of the process which occurs in varying degrees in various accentuated forms, it has often been difficult to define just where I was at any one time along the 'normal-abnormal' continuum—and it still is. This was true at both the depressive end and the hypomanic end of the spectrum. It is difficult, therefore, to actually name the number of times when I have had major manic-depressive episodes,5 perhaps as many as eight, certainly as few as four, in my whole life, from what may have been the first episode in 1946 to the last brief episode in 1990 when I went off my lithium for between one and three months. Defining an episode is not easy for me to do; indeed, the concept of episode is only useful in some respects. In other ways it over-simplifies a complex set of behaviours; it has value, though, when trying to describe the experience in writing. The term episode serves as a sort of shorthand, a paradigmatic sign and symbol to cover a broad range of behaviour under one rubric.
3.8 Some Things I Have Left Out:
3.8.1 This account above has none of the fine detail that I could include like: (a) details about my mental and mostly auditory hallucinations, (b) specific fears and paranoias, (c) the electroconvulsive therapy, E.C.T.s, (d) the psychiatric analysis and diagnosis, (e) the many years of dealing with suicidal thoughts and what some call a death wish, (f) experiences in and out of half a dozen hospitals, unnumbered doctors’ clinics and advice from more people than I care to recall, (g) adjusting to medications that varied from ones which put me to sleep to ones which made me high, increased my sensitivities and sense of awareness of my environment; (h) the affects of these swings on my employment, my relationships and my attitude to life; and (I) the periods in my life when the manifestations of the disorder were few and far between.
Many of the situations, looking back, were humorous and the contexts absurd. And there was much else but, as I indicate, I hesitate to go into more detail. My aim here is to make a short, clinical statement, to put some basic facts on paper, to outline some impressions, to make some analysis and some tentative conclusions. Perhaps later, in a further essay or posting on the internet--for this is the place my writing on BPD as a non-professional gets the most exposure--I will go into the kind of detail some readers have already asked for. And so--I want to make this statement as short as possible, but as detailed as I can, to give a longitudinal perspective. At 13,000 words this account is far from short, but it serves my purposes even if it is somewhat onerous for some readers to digest.
3.9 Different BP Profiles and Typicalities:
3.9.1There are a variety of MD and BPD profiles, what you could call different disorder typicalities, from person to person. It is bipolar because both ends of the spectrum, the moods, were and still are experienced over the period 1944 to 2007, 63 years. Thanks to lithium, fluvoxamine and, now, sodium valproate and venlafaxine(effexor), most of the extremes are now being treated. Beginning at the age of 19 in 1963, then at the age of 35 in 1980, and again at the age of 57 in 2001 and, finally(I hope) in 2007 in these early years of late adulthood, that twenty year period in the human lifespan from 60 to 80, different medication regimes have resulted in an experiencing of life in very different ways. They brought me back to a centre, a normality, but I was somehow, somewhat mysteriously in some ways, never the same again. This of course, is true of all of us, each in our own ways, with our own stories of change, of crisis and our own expression of some normality and abnormality.
3.9.2 It took ten years, from 1980 to 1990 as I say above, for me to fully accept the lithium treatment. From time to time in the 1980s I tried to live without the lithium, to go it alone, to do a cold turkey on it, as they say colloquially. Such, in as brief a way as possible, is the summary of my experience over the years and, in the main, up to 1991. I have written more extensively of these years in my autobiography which is readily available on the internet for anyone who is interested.
3.9. 3 I would like, now, to focus on the more recent experience of the last decade and a half, 1991-2007, and especially the last half dozen years, 2001-2007. By 1991 I had no problems with compliance with my lithium, a problem I reiterate that I had in that first decade of lithium treatment, 1980 to 1990. I’m sure by now readers will realize that I jump from time frame to time frame, that I compare and contrast different episodes while placing them in one particular time frame. They may find this confusing. I may be able to sort tis problem out in some future edition of this story, but for now, this is the best I can do given the complexity of the disorder and how it was experienced over more than 40 years.
4. MD/BPD In The Short-Term: 1991-2007
4.1 1991-2001: “Luvox Arrives in 2001”
4.1.1 In the decade 1991 to 2001 I finished my life of full-time employment; I began to seriously reduce my extensive and intensive activities and responsibilities in the social and administrative aspects of the Baha’i community and its life, as well as other social involvements and I began my obsession with writing. Rather than ponder the value of non-compliance with this medication as I had done in the 1980s, I came to a state of full-compliance; I came to appreciate, to fully accept, my lithium treatment. Anti-psychiatry has had many forms since psychology emerged in the last decades of the 19th century and since chemotherapy began to have more and more success in the last half century, say, in the years 1957 to 2007. In 2001, after two years of early retirement, my supervising psychiatrist in Tasmania suggested I go onto fluvoxamine maleate or luvox under its trade name, in addition to the lithium treatment. Luvox is an anti-depressant and it had been used in Australia at that time, in 2001, for about five years.
4.1.2 Fluvoxamine(luvox) removed the blacknesses that had dogged my life since the late 1970s and the blacknesses that had begun when I went on lithium in 1980. Periodically before that: in 1975, 1968, 1965, 1964 and 1963 I also had depressions. They did not seem only a part of my night time/sleep time scene. they lasted well into the daylight hours and messed up my experience of work, leisure and family life. Beginning in 1980, though, these blacknesses were only at night, from late in the evening until early morning when I was awake or partially awake. The death-wish, as I mentioned above, has always been associated with these blacknesses(1978-2001). With the fluvoxamine, though, gradually the blacknesses, the nightly depressions, disappeared or virtually so. Only residues of a lower mood remained. The death wish remained as did sleeping problems, but in a much milder form. Like so many things in life, the death wish and mood swings have varying degrees of intensity.
4.1.3 Coping is the key question with so much of this quite horrific personal experience, at least for me, although everyone has their key questions, their orientations and philosophies vis-à-vis the various approaches to chemotherapy, the many talk therapies and the myriad alternative medicines in the marketplace today. The level of intensity within which one suffers is the determinant of how one understands and experiences whatever problem one has and its symptoms and the extent to which one copes. Such is one of many ways of putting this quite complex idea. It is an idea, a process, not easily described, answered or understood and to expatiate on this aspect of the problem would quickly lead to a greater prolixity than has been engaged in already.
4.1.4 Frequent urination, periodic nausea and memory problems related, in part and perhaps, to the medications and shock treatments I had back in 1968, were new problems by the year 2001. But the dark and debilitating feelings, I had experienced for so many years, were at last removed, if not totally at least virtually or, to all intents and purposes as people often say in the language of quotidian reality. After sixty years of BPD and/or manifestations of BPD in varying degrees of intensity, with periodic totally-debilitating episodes, most of the worst symptoms seemed at last, at least in the last six years, to have been treated and removed.
4.1.5 My anger seemed, at last, to have disappeared by insensible degrees, little by little, year after year. My anger episodes had finally gone by the time I was in my early sixties and during the first years of fluvoxamine treatment. Irritability too, it seems to me, looking back over nearly 40 years of periodic outbursts of anger(18 to 58) or what some call ‘intermittent explosive disorder,’ an irritability which triggered my outbursts of anger, seemed to move into a much lower register. The medical literature indicates that people who suffer from BPD experience ‘intermittent explosive disorder.’ This lack of control, this uncontrolled form of anger, seems to be a biologically driven symptom of H or mania, at least the relevant literature strongly suggests that this is so. The sexual urges, I might add, still remained.
5. 2002-2007: “Sodium Valproate Arrives in 2007”
5.1 In April 2007 I switched from the mood stabilizer, lithium, to sodium valproate an antipsychotic agent. It became my main medication due to the fact that the creatinin levels in my blood, tested every 3 months for the previous six years, had been too high for too long—for about a year. These creatinin levels were indicators that readers of this document can read about in the bipolar literature to see just how the kidney function can be affected by lithium treatment. I am not a doctor and I make no attempt to go into the finer aspects, the more detailed anatomical and physiological aspects of this medical problem, this mental health illness, that I live with beyond the level of analysis and sophistication that I do. Most of the people who ever read this document are not themselves au fait with little of the relevant literatures that relate to my problem, although many have a more than lingering interest in one or more of the hosts in alternative medicines. Indeed, one of the typical responses to ‘coming out’ as a person with BPD in recent years is the alternative milieux that one enters: in letter, over the phone, in dialogue and now in email form. This kidney difficulty could have led to serious health problems had I not gone on to the new medication. This milieux of alternatives to psychiatry is a different milieux-of-the alternative than the one I entered in the early 1960s when I first had significant manifestations of this problem; but this is a tangential problem or issue.
5.2 As I write this revision of my story I have been on the sodium valproate for three months. I am currently trying to get my sleeping pattern into a normal, a routine regime and, although it is not as difficult as the regime change in Iraq has been it affects me much more that the nightly stories do on the TV and radio about that distant country. I often have a short sleep in the afternoon or early evening but, at the moment the transition to my new *****tail of drugs is finally assuming some regularity, some normality, some of my former self. I hope this effort to regularize my sleeping patterns is successful, living as I do with my wife, in the same bed and occupying as I do the same space day after day. I like to maintain a regular sleeping pattern, not for the sake of sexual activity as some readers might be keen to read about and thus provide a sexual-spice in this account which for some I’m sure by now is lacking, given the overwhelming clinical and analytical nature of this statement.
5.3 Routines are important when living with others, in different ways than when living alone. Much must be done for the sake of a more harmonious and general interaction due to interdependence and interrelationship. My sleeping patterns have varied in the last three months from 2 to 4 hours at night with a making up for the loss at night in the daylight hours. My wife is helping me in this area and I should add, somewhat parenthetically but very importantly, that since the late 1970s when the first episodes of this disorder appeared during this my second marriage, my wife has been my main care-giver. I have been her main caregiver, but that is a separate story which I briefly refer to below. We have each been for each other the main care-givers over these many years. My preference and need for sleep seems to be 8 hours on average per day. This has been the case since the early onset of this disorder back in the 1960s, although in my teens and twenties, as in my childhood before, sleeping patterns have had great variations. The whole question of sleeping patterns is complex and I don’t want to go into too much detail on this theme here; indeed, concern for and obsession with sleep is a characteristic concern of those who suffer from MD or BPD.
6. The Years After April 2007: Enter Venlafaxine
6.1 I have only just begun my story, my experience, with venlafaxine or effexor as it is know commercially. I will, therefore, leave this part of my account for now and return at a later date after some experience of thus new medication has been acquired. After just five weeks on this new medication, combined as it is with sodium valproate, the future on this medication package looks promising. A new sense of normality, of my old self, in an ironic sort of way, has already returned in these first five weeks of my being on the final element of this new medication-*****tail, venlafaxine. The symptoms of my OCD have significantly dissipated; I can feel what I can only describe as its ‘healing effects’ or, as my wife terms it, ‘a sense of well-being and less frenetic activity.’ It looks again like I am going to win the battle with this disorder, although I had my doubts yet again, even as recently as April 2007. It looks again like I am going to win the battle, although in the past the battle has periodically looked like utter defeat--as far back as those October evenings in 1962.
6.2 The affects of this disorder on my day to day life seem to have been finally put into some niche, yet again, so that I can go on with the next chapter of my life. The negative affects may rear their ugly heads, yet again at some future time, but for now, I can put this account to bed. I have the skills of my psychiatrist and the medications and consultations that are part of modern psychopharmacology and psychiatry to thank for it—in the main.
7. Other Difficulties:
7.1 The Physical and Psychosocial:
7.1.1 Five years ago in 2002 I was diagnosed with chronic obstructive pulmonary disease(COPD) or emphysema which gives me a shortage of breath when I exert myself even mildly. Many millions of people have died from this illness in the last several decades; there are various statistics, but it is not my intention of discussing this medical problem in any detail, only insofar as it relates to my BPD. My form of COPD is not a serious one. It probably originated in my smoking on average of one package of cigarettes every day from the age of 20 to 50. I did suffer from a mild RSI and various other maladies, some of which I treated with exercise, thus lessening the effects. These several medical problems exacerbated the remaining bipolar symptoms. It became by degree from year to year, more difficult to engage: (a) in any physical activity for more than short periods of time in excess of about one hour; or (b) engage in social interaction for more than about four hours.
7.1.2 These two activities, the physical and the social, if taken in excess of the time limits I have indicated above and if necessity dictated, imposed a strain on either my physical or social capacities and sensibilities. I’m not sure how much of (a) and (b) is related to the BPD and how much is just the natural result of moving into the early years of late adulthood, the last three years 2005 to 2007; with forty years of a working life also behind me, 1961 to 2001; with PT and volunteer work also behind me; with no desire to take part in it any more; with decades of struggling with various forms of SAD, D, MD and BPD the occasional episode I have described briefly above, I feel as if the years from, say, 1951 to 2001, a half century, slowly and insensibly removed life’s juices from my being. They did not remove all my juices, though, thankfully. I enjoy reading and writing, eating, drinking, socialising to a minimum, watching a little TV-about two hours each day on average—I no longer suffer from the ravages of my disorder.
7.2 In Community:
For the most part in community life I rarely talk about my bipolar disorder and most people who know me have no idea of my medical history or the difficulties that I have lived under physically. I have for many years regarded these difficulties as part of the spiritual battles that I must face. They are now difficulties that have largely slipped into a low gear in the last several years and do not trouble me significantly. This seems especially the case with the new medication package I began in the last two months. I should mention that a certain spiritual attitude which has been part of my belief system since the 1950s has helped me more than I can myself really appreciate. This is especially true of the attitude to tests and difficulties in life which the Founder of my religion says are often “like fire and vengeance but inwardly light and mercy.” But even the wisest of advice, the finest of philosophy and the most practical of alternative and specialized treatments does not and will not remove all of our suffering, mine or humanity’s. Indeed, it is my view that suffering may just be part of the critical axis of our life. But however one views suffering, it comes to us all. This account does not deal, though, with the philosophical aspects of my struggle with BPD.
7.3 Application of the Recovery Model:
7.3.1 In the last decade or two, perhaps as far back as the 1970s, there has developed in psychiatry what has been variously termed a self-regulatory, self-diagnostic, illness-identity-and-monitoring model aimed at ongoing treatment, care and recovery. It is a program that involves the client, much more than a program of treatment ever did before, in developing and drawing on what are sometimes called the evidence-based skills of mental health consumers. These skills are applied to and in a manner consistent with, the particular disorder. The consumer, the client, becomes their own doctor but this, as one can appreciate is no easy achievement.
7.3.2 It is argued that this Recovery Model is based on: (a) the evidence-based skills of mental health consumers; and (b) the provision of an integrative framework combining both description and analysis of: (i) the evidence-based practice of these consumers and, in my case, the practice and skills of certain significant others in my life; (ii) manageable and modularized competencies relevant to case management and psychosocial rehabilitation contexts; and (iii) a greater recognition of the subjective experiences of consumers.
7.3.3 Now this summary of the Recovery Model is itself a mouthful of words, to say the least. There are many verbal/written mouthfuls in this field of mental illness and they keep the sufferers of this and other mental disorders as busy as little beavers trying to come to grips with them. There is a mystique involved in mental illness, a mystique in some ways not dissipated by all the new knowledge of this last half century or so. This model puts the onus on the person with the disorder to work out what is his or her best way to cope, to survive, in society given the conditions of their illness. Such an individual must work out the techniques and strategies for day-to-day living.
7.3.4 With each individual the disorder is idiosyncratic; individual consumers of mental health services must work out what is best for them in terms of these services and in terms of what activities are appropriate for them within their coping capacity in life’s day-to-day spectrum and with or without help from specialists as they think necessary. This, too, is a complex question but I don’t want to dwell on it unduly here. It is my hope that my story may help others work out their own particular regimen of treatment programs and daily coping tools. It is not my intent in this essay to document the history of mental illness treatment in the last half century.
8. My Wife’s Illness:
8.1 Physical:
8.1.1 My wife Christine, now 60 years of age, also has not been well for many years, since the year before we were married when she suffered from her first major episode of post-natal depression. But in 1982 we moved from Tasmania to towns north of Capricorn in Australia’s Northern Territory and Western Australia from 1982 to 1987, over 20 years ago. Although she, too, has a long history of different kinds of problems which I won’t go into here, it is the more recent ones(2001-2007) that I mention below and that affect our life-style in more ways than one. The doctors do not know what the cause or cause/s of her physical problems is/are, but they are problems that have made life difficult for her and our life together.
8.1.2 Her symptoms have included: dizziness and nausea, back-ear-and-eye ache, headache and some two dozen other symptoms that we have put down on paper to try and monitor on a daily basis and try and find some pattern. Sometimes, with the aid of steroids or some new drug, or some alternative medical treatment, she seems to recover for a time, but her symptoms eventually return, sometimes mildly and sometimes not-so-mildly. At present, in the last several months, she seems to be going through one of the best periods of symptom absence. I and she live in hope.
8.1.3 Perhaps the one advantage my wife’s ill-health, if there is any at all, is that it allows me to focus on her problems, to talk about her problems, when the subject of health and fitness comes up in our personal and community life as it so often does, has and will, I’m sure in the future as long as she continues to suffer from her illness. This keeps the focus off of my own disability and I can talk about my need for exercise and diet, sleep or one of many other needs, thus avoiding the reference to my own disability, its stigmatic aspect and generally people’s disinclination to discuss it when I bring it up if, indeed, I bring it up at all. My many years of experience tell me the reason for people’s disinclination is an inability to know what to say among other reasons.
8.1.4 Consequently, people have little idea of the physical problems I face and much more of an idea of my wife’s. I don’t mind this for I am not particularly interested in talking about my disability. After 60 years or perhaps 40, depending on how the aetiology of my illness is defined and described, it has become somewhat tedious in the telling and the thinking. It is well known that people with BPD are disinclined to talk about their problem in public. Such a situation has the disadvantage that people have little idea of the battles sufferers from BPD face. When all is said and done in life anyway, we all face our battles alone—hopefully with a little help from our friends as the inimitable Joe *****er used to sing over forty years ago.
8.1.5 This lack of public admission or opening-up can have and has, though, a number of disadvantages. I have a core of friends with whom I can share a broad range of intimacies. Mostly, though, these friends do not tend to inquire and I do not tend to expose these battles, not now nor in the past, except to a limited extent. I have little need to ‘dump’ on people, as we used to say, not after all these many years anyway. On occasion and with encouragement I do open- up. In the last three years I have been ‘coming out,’ as they say, but mostly on the internet at mental health sites.
8.2 Psycho-Social/Family:
8.2.1 My wife has a story here as long as your proverbial arm but to dwell on it, even to describe it briefly, would lead to one of the many possible tangents and their prolix labyrinths. I could go down many burrows as Alice did in Wonderland as I go about writing this statement, but I shall stay with the clinical, the descriptive, focus on my experience of BPD.
9. Creativity
9.1 Writing:
9.1.1 When I finally came to accept lithium without any mental reservations by the early 1990s; when I began, too, to see the end of my teaching career on the horizon by the late 1990s and what I hoped would be a coincidental reduction in various forms of frustration in marriage, career and community life that I had experienced in many and complex ways for decades, at least as far back as the 1960s insofar as my BPD is concerned---I began to write poetry a great deal. One could say I was obsessed; my wife certainly would use that word and I have come to accept that word as a realistic description of my behaviour, especially now that I am retired and devote all of my waking hours when possible to reading and writing. The drive to create never seems to leave me and other activities, domestic and social, serve to provide a useful backdrop, respite, diversion and alternative, coping tools and possibly crutches, to the constant demand that comes from my inner, my psychosocial world.
9.1.2 The demand to create is relentless, obsessive, compulsive and disinhibited, but, on the whole a paradoxically relaxed and energetic activity: “emotion recollected in tranquillity,” as the poet Wordsworth once put it. Since the early 1990s until this year, 2007, perhaps a total of some 15 years, the output has surprised me. Again, to go down this track and describe the process in even a cursory manner would take me into one of Alice’s borrows where I do not want to go and where I would take myself and readers away from the central theme here—this BPD.
9.1.3 Fame and fortune have not come my way, but the act of writing is enough of a motivator. The fluvoxamine, since 2001, has enabled me to work after 11 p.m. and into the early hours of the night, after 2 or 3 and sometimes as late as 4 or 5 o’clock, if I desire---without the black moods. If I wake up at 4, 5 or 6, say, after being asleep for whatever length of time, a low degree of emotional blackness/worry is present. The transition to sodium valproate has had its problems. Sometimes it looked like it would be a smooth process, but this has proved to be the case only after some several weeks of one medication and ten days of the other. As I write this my sleeping patters have become more regular than they were even two weeks ago. Just two weeks ago my sleeping patterns had become more chaotic than they had been since the 1960s; they have altered again and again over the years; the need for regularizing them has not gone away. This new medication, resulting as it did in quite an unsettled sleeping pattern for several weeks, is finally giving me some steadiness, some settling, some routinization of habit and it is my hope that an old normality will routine soon.
9.2 My Creativity in a Psycho-Social Context:
9.2.1 My creativity is part of an obsessive compulsive disorder(OCD). Whatever my OCD tendencies are, they have never been treated and they have become part of who I am; I accept them, as do member of my family, as a sort of eccentricity. When brought face-to-face with them in an extreme form, as they were in the recent medication shift, when I was only on sodium valproate within this new medication package, OCD can be an extremity that can be quite frustrating to others. Emptying the garbage many, many times a day, doing the dishes to keep the counter in a pristine state, squaring all the bits of paper around the house are good example of this OCD. These manifestations of an OCD have lessened to a significant extent and are now in the normal range of acceptable social behaviour—well—mostly. I will say no more about it here. Anyone who lives with me is often troubled more by my OCD than other aspects of my poor mental health. Again, this OCD is a tangent to my BPD so I shall leave further comment out at this stage.
9.2.2 The issues of career, various frustrations and anxieties, problems in relationships that we all have in one way or another, the difficulties involved in moving from place to place as I have done over the years, stresses and strains in marriage, dealing with the ill-health of my wife and others, while important to me and to my story in a wide variety of ways are somewhat tangential to the central theme here of my BPD. They are all tangents to the main story line. I do not want to underemphasize or overemphasize these other and important aspects of my life in this statement. They are important, but as I have often said above, they are tangents to the theme, however important they may be. They have all been, each in different, complex and mysterious ways, contributing factors to my outburst of creative writing in the last 15 years(1992-2007).
10. Concluding Comment: The Road Ahead
10.1 General:
10.1.1 This brief and general account, at least brief in contrast to a whole book that some people write on the subject of their bipolar experience, summarizes both the long history of this illness and where I am at present in what has been a life-long battle. I look forward to hearing from anyone in the weeks, months and years ahead should my experience be relevant to theirs and should they want to discuss these issues further. My friends, former colleagues and associations, the fellow members of the Baha’i community with whom I share this story from time to time and, indeed, others will each have their own individual reactions to this statement. This is only natural and to be expected. “Coming out” is a popular sport these days and, in spite of appearances to the contrary, I am not inclined to talk about my personal problems. When I do, I find others not inclined to be interested anyway, do not know what to say or change the subject. Sometimes, though not often, an engaging conversation ensures.
10.3.2 As I say above, I am happy with whatever reaction comes my way, although some reactions require more thought and comment than others on the internet where most of my ‘coming out’ takes place. It’s a safer zone cyberspace, at least safer in some respects. The internet also has its pitfalls, its snares and difficult people to deal with. I usually respond in writing to written reactions when readers do write to me and I tend to respond within a few days at most. Very few write to me, except a coterie now on the internet where I keep up, as best I can, correspondence at some 60 mental health sites.
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| davidt
Super Incredible Member (10000+ posts)
82944 Posts
Gratitude: 2519
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Posted - 03/29/2010 : 14:24:30
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How are you currently fairing Ron?
"The noblest pleasure is the joy of understanding." - Leonardo |
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| RonPrice
Starting Member
21 Posts
Gratitude: 6
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Posted - 03/29/2010 : 15:32:04
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quote:
Originally posted by davidt
How are you currently fairing Ron?
"The noblest pleasure is the joy of understanding." - Leonardo
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thanks for youyr expression of concern/interest, davidt. it has been 2 and 1/2 years since my first post here so let me add that:
10.3.7 Who knows what lies ahead in my dealing with BPD? At the age of 65 I would like to put this story permanently to bed--forever, never to return to another, yet another, chapter in the long tale, this sequence of events with a long duration or longue duree, to use a French expression in terms of my own life rather than the life of a civilization to which that term is usually applied. But I have my suspicions that the story is far from over. I am able to work at reading and writing for at least 8 hours in total most days in a series of small time periods even after all these decades of BPD. I am still a functioning member of society, but only in certain quite defined and limited ways.
10.3.8 The new pattern of behaviour that has become apparent after three years on this new medication package(5/07 to 5/10) contains the following details, details which have altered, of course, as the medication package itself changed in those 34 months:
(a) alternating periods of fatigue and sleepiness on the one hand; and energy and enthusiasm on the other, often within a few minutes making any sustained work/activity beyond one to two hours difficult to maintain;
(b) a sleeping pattern as follows:
A. (from 5/07 to 12/08): (i) staying awake to 1 to 3 a.m., (ii) sleeping for two hours and (iii) then getting up to urinate and returning to bed; then (iv) sleeping until, say, 5 or 6 a.m. or 9 or 10 a.m. and, finally, (v) sleeping for an hour or two in the day/evening. All of this takes place within a context, as I pointed out above, of short bursts of: (I) reading and writing each day adding up to an 8 hour total of literary work per 24 hour period—and (II) short bursts of other activities(domestic, social and, personal) adding up to another 8 hours; and a sleeping pattern:
B. (from 25/12/08 to 5/10): (i) staying awake until 1 to 3 a.m., (ii) sleeping until 9 to 11 a.m. and (iii) sleeping for 1 to 2 hours during the day and/or evening making a total daily average of 8 hours of sleep.
(c) a certain excessiveness/speed in speech patterns and a tendency to dominate/speed verbally in social settings, a lack of moderation, a lack of control as well as an overly, overtly emotional state and over-the-topness, so to speak, which is more problematic when I am, as I say, in those social situations, especially social situations of more than two hours of interaction;
(d) a speeding in situations that do not require speeding like: washing dishes, making a cup of coffee as well as other domestic and daily activities just in normal everyday settings;
(e) quick alterations in energy levels, for example, hyperactivity to completely fatigued, and with that sudden fatigue and need for sleep;
(f) OCD, obsessive-compulsive behaviour: straightening & squaring bits of paper, magazines & newspapers on tables and desks and other forms of tidiness much more than in previous years. My psychiatrist does not see this as a serious problem on the spectrum of OCD behaviour;
(g) urinating on average every 80 minutes; again, my psychiatrist says this is normal for my medical condition after 27 years on lithium with creatinine levels that indicated a need to go off lithium;
(h) urination may be a side-effect of taking effexor. Other side effects which may be due to taking effexor and which I exhibit include: vertigo, impulsive behaviour, insomnia, dizziness, vivid/abnormal dreams, apathy and fatigue; side effects from taking NAVAL include: sedation, nausea and dizziness which I experience occasionally. Beginning in September 2009 I had benign vertigo and I got rid of it after 2 months with standardized exercises. This may not be due to the meds;
(i) defecating with a slight degree of diarrhoea on average once every 4 to 5 hours during the 16 hours I am awake which, with the frequent urination and the off-and-on sleepiness/fatigue has a soporific effect on my general energy levels. It feels as if I am either eliminating waste or getting sleepy/about to feel fatigued just about all the time. I don’t feel debilitated by this combination of bodily activities, just depleted of any sustained output of energy and, hence, not capable of any sustained physical or social activity; I have become content and comfortable with what might be called a social mediocrity. If I was still a classroom teacher I would not be able to cope with the necessary social theatricality and emotional demand. Back in the 1980s I felt the lithium I was taking was limiting my social and creative capacity and it took me a decade to come to a full acceptance of my medication because I felt it was preventing me from being ‘the real me.’ But I do not have this problem of acceptance now; indeed, I have not had a problem of acceptance from 1990 to 2010;
(j) a nightly dream pattern that is more vivid/abnormal/extensive than ever before in my life leaving me with a dense-and-heavy, somewhat disoriented, feeling on waking; I began taking a panadol pill on going to bed at night to help me feel calm and sleepy and ready to go to bed;
(k) perhaps the most important feeling on the negative scale is an emotional and psychological weariness as outlined in section (i) above as well as a tedium vitae, a Latin expression for a weariness of life, from the long years and many scars left from battling this BPD. But this feeling is only after midnight and after 8 hours of intellectual labours;
(l) Now that I am back on the effexor(26/1/09 to 5/10) this tedium vitae is even more pronounced especially after midnight and an 8 hour day of reading, writing, research, editing and publishing--at least as I write this third draft of the 10th edition of this account on 1 May 2010.
10.3.9 After I completed the above statement in section 10.3.8 I thought that these dozen symptoms taken in total were a little ‘over-the-top,’ as they say in Australia. The list, though, is accurate. The statement seems a little over-the-top because I am not used to placing all of the symptoms in one place on one page. Some of the above traits, patterns or symptoms, of course, are problems everyone has in different degrees. These symptoms are: (1) the present constellation of behaviours or negative features of my BPD and (2) a cause of concern in some ways more to my wife who has to live with me than they are to me. Being the battler that she is, and my personal carer in more ways than one, she grumbles and grouses more than usual as a result of my eccentricities and/or more often as a result of hers. This is one of the worse side-effects of my behaviour, its affect on my wife but, over time, she has come to understand my behaviour more and more and, with that understanding has come greater acceptance of my behaviours, especially my asocial tendencies.
10.3.10 This tedium vitae on the one hand and my negative, strained and over-the-top behaviours after two hours of social interaction on the other are the major bases, raisons d’etre, of my asocial tendency. My residual death wish remains when my head hits the pillow each night and this contributes, I have little doubt, to this same asocial tendency. There is, though, accompanying this weariness, an alternating or coextensive quiet tranquillity, a tranquillity very useful for the act of writing. This tedium vitae and its accompanying death wish are most pronounced, indeed, they only exist together just before going to bed. I should also add that my writing life, my creativity, is strongly linked to my need for, and taking pleasure in, solitude. I can not divorce my asocial inclinations from my desire to write, from my creative activity.
10.3.11 I should mention, somewhat parenthetically, that I have had an increase in weight in the last 30 years(1980 to 2010), some 65 lbs. since beginning my lithium, anti-manic, mood-stabilizer, treatment in 1980. This weight gain may be due to my medications since a side effect of both lithium and effexor is sometimes weight gain. I have a body-mass index (BMI) of 30.5. A BMI of 27.5 and above results, some studies show, in a high risk of heart disease and other health problems. This is not always the case though; for example, one study showed that there was an unexpected better survival in overweight/mild obese patients. I am mildly obese.
My GP says that my excess gas may be due to my overweight(225 lbs on a 6 ft. frame results in a BMI—at the lowest edge of obese, that is mildly obese, using a standardized BMI(body-mass index chart). The change in the position of my stomach when I get up may be the main cause of my belching as well as a simple lack of self-control. Belching is due to swallowing large amounts of air and gulping food or drink too rapidly, anxiety and carbonated beverages. I am not aware that I am swallowing air, although I do eat and drink too fast and have done so all my life. Excessive air in the stomach is not the only cause of belching. For some people, and I may be one, belching becomes a habit and does not reflect the amount of air in their stomachs. This may be the case with me. During the three years on this new meds package I have been belching far more than in the past. Perhaps this is due, as I say, to a lack of self-control, an “I can’t be bothered” attitude, fatigue and lethargy. I also have a mild degree of flatulence. While all of this may have no relationship with BPD, this expulsion of gas does provide a backdrop to everyday life, may be due to my medications and may have some tangential effect on my mood. It certainly affects my wife since she is a more refined person than I am and she finds the belching a gross habit, even if she is now used to it. I could have left this subject to Appendix #4 and dealt with it under “other illnesses, problems and health problems in my life since 1999.”
10.3.12 The significant others in one’s life are an important source of relevant feedback and since I have been on this new medication—and its several stages from 5/07 to 5/10--my wife has informed me on many occasions of: (a) an increase in OCD behaviour, (b) an increase in speeding and an intensity of various types of what she calls frenetic activity or, more colloquially, fossicking-about and (c) an eccentricity, an over-the-topness or an inappropriateness of verbal responses in social situations. For these reasons, due to my wife’s sensitising me to my abnormalities and eccentricities, I summarise my symptoms here. I will return to this theme in the years ahead, if necessary/useful, and provide more of this ongoing story, this description of my future and the more recent physical, mental and emotional states as well as my symptoms on this new medication regime, a regime I began in the first week of April 2007, settled into with both medications in mid-May 2007 and have now been on the present level of effexor since 26/1/09.
10.3.13 For the above reasons it is my view that holding down a full or part-time job would be unwise. My psychiatrist supports me in this view as does my GP each of whom are happy to provide testimonials in support of my decision not to: (a) apply for jobs any more and (b) serve on any volunteer bodies requiring extensive/long periods of social interaction. Being on the Disability Services Pension does not require me to work and this has been the case since May 2001 when I was 57. I have been on two old age pensions for six months and this life-status-situation also does not require me to engage in employment. I should reiterate, though, that my psychiatrist does not regard the symptoms (c) to (i) in section 10.3.8 above as problems of a serious or even minor nature, insofar as the excesses of my BPD are concerned.
10.3.14 During the five years 2005 to 2010 I: (a) brought most of my volunteer work/activity to an end and (b) limited my taking-on any new work as much as possible due to the presence of the range of symptoms I have outlined above. Social and community responsibilities, situations and activities that go too long, as I indicated above, are emotionally exhausting. I had no desire to take part in them and eliminated them from my life as far as this was possible. I always avoid, if at all possible, what would once have been my community and social commitments. Being on the AOAP and the COAP, as I indicated above, makes the issue/the necessity of employment FT, PT or casual work non-existent from the standpoint of Centrelink and employment bodies. Volunteer groups, like the Bahá'í communities, various fund-raising groups and local organizations in the town in which I live, still seek my assistance. But I rarely say ‘yes.’ Saying “no” is sometimes a difficult task especially when: (a) expectations are placed on me by group/family members and (b) explanations are both difficult to give and difficult to be understood by those to whom they are given. I have already discussed this subject above and no more comment is required here.
10.3.15 I will describe below some of the details of my medications in the last three years largely for my own interest and memory since, unless I write these details down, I can not remember them. I have now been on variations of this new medication package now for nearly three years, 5/07 to 5/10. The last two half-hour consultations with my psychiatrist were on 13/11/07 and 13/11/’08 and the results of these consultations are outlined below in Appendix #1. The stages in the reduction of my anti-depressant, effexor, levels were advised by my psychiatrist and I have described them above and below as those changes continued.
10.3.16 The other symptoms I outlined at the last visits to my psychiatrist were not considered problems to deal with insofar as medication alterations were concerned. Three weeks after my 30/11/07 consultation, I decided to reduce the effexor levels from 150 mgr. to 112 and ½ mgr. I remained on this reduced effexor level for five months, that is from 24/12/07 to 12/5/08. Since: (a) I was still sleepy/ing too much of the time and (b) I felt the need to regularize/routinize my nighttime sleeping patterns, on 12 May 2008--I reduced the effexor level to 75 mg. per day. I have reported the results of this medication change as alterations in my behaviour patterns and life-routines became apparent. After seven months(12/5/08 to 13/11/08), though, I was: (a) getting five to eight hours of sleep per 24 hour period and (b) my wife saw my demeanour as “clearer—in my eyes,” as she put it, by which she meant there was greater clarity and less sleepiness in my physical/facial expression.
10.3.17 In November 2008, as discussed in the 13/11/’08 consultation with my psychiatrist, I reduced my effexor level to 37 and ½ mg. and on 10 December went right off the effexor. I had originally gone on the anti-depressant, luvox, in 2001 to reduce the nighttime blacknesses and I decided that if they returned I would increase the effexor level to 75 mg./day. After six weeks on no effexor(10/12/08-24/1/’09), the dark side of BPD returned. The above symptoms have continued, although I: (a) am sleeping more soundly with a solid 8 hour per day average, (b) am disinclined to get up once I have gone to bed and (c) have a heavier feeling in my head once I wake up which dissipates if I lay in bed half asleep for an hour or more on waking. As I noted above, though, on 25/1/09 I went back on 37 & ½ mg. of effexor daily for the reasons outlined above and after one year, to 1/10, my intention is to stay on this present regimen for as far as the eye can see.
10.3.18 Altering the brain and its chemistry through medication, alters so many things about one’s life. One becomes a different person since the brain is the central data processing unit in the body and this processing takes places differently due to different chemistry in the brain. This ongoing story has been, is and will be partly about that different person I have and will become as a result of my BPD and the medication changes. I hope the above account is as much use to others as it has been to me in writing it over these ten editions and, perhaps, as many as five drafts for each edition, in the last decade. Much of the personal use, though, is: (a) to help overcome the deficiencies of memory, (b) to provide a base for changes I might want to make and (c) to give me a sense of security that comes from writing things down.
10.3.18.1 It will be necessary, of course, to make alterations to the above document in the months and years ahead to: (a) include new information and new perspectives on my past experience, (b) add to the document as changes to my life occur that are related to my BPD, (c) maintain as comprehensive and succinct a story as possible; and, finally (d) to bring those to whom I write this account up-to-date on this story. Research shows that anti-depressants can cause the cycling of the bipolar condition to increase even in the presence of mood stabilizers. I would not characterize my behaviour on these new meds in the last three years and especially the last 12 months ‘rapid-cycling’ but there is a large gap between my usual calmness and my inappropriate behaviours I have described above. Most people have a broad range of positive to negative behaviour and so it hardly seems something about which to make an issue. Who knows what is in store for me in the months and years ahead. Psychosocial treatments can be very useful, but without the mood stabilizers these treatments will/often have no real impact on the disorder.
10.3.19 There are now 100s of people at more than 100 BPD, D, mental health, general health and other internet sites for whom and to whom I write this account or part of it. Most of the correspondence that has ensued from this posting takes place, as I said above, at the internet sites. There are, as well, a very small handful of personal friends and relations to whom I have sent this story for a range of personal purposes. Some in this latter group want to know this story. I feel it necessary, for various reasons, to inform others so that they have a better understanding of my present situation and past condition. But whatever the reason for my utilising/writing this account, its contents have become of value to many others who suffer from this disorder, similar disorders or, indeed, have other problems of the human condition that possess a traumatic or quasi-traumatic quality, particularly in the areas of depression and men’s issues which have become more topical and discussed more frequently in recent years.
10.3.20 Given the complexity, subtlety and difficulty in comprehending BPD and its many manifestations, written descriptions of this disorder and/or people’s experience of it do not necessarily and/or immediately produce any significant degree of understanding on the part of others. In addition, the very length of this written account, to reiterate an important point in the communication process, puts many off. This is due to a host of reasons associated with people’s disinclination to read long passages on the internet, a medium which for many is used to focus on short and pithy messages and quips, what one might call a kind of “internet-speak.” Even long passages anywhere else for that matter can be too onerous for many people, this making the transmission of content like that contained herein difficult for the communicator, namely me.
Even my own personal understanding of the labyrinth, the twists and turns, of BPD keeps me busy. Understanding does not come easily here for the lay person. And I am a lay person. My story, like so many stories in life, is a work in progress. I look forward to receiving feedback from anyone who feels moved to write words either of encomium or opprobrium, praise or criticism, to make suggestions and/or to outline their reactions to this long essay/report.
As I have indicated above in this statement, this 1010h edition, I have included a record of information that I keep as a result of visits to my GP. This BPD does not exist in a vacuum and, for some readers of this account, this largely peripheral information may be of value. I have included this record of issues raised with my GP here, as I say, in Appendix 4. My epic 2600 page memoir or autobiography is also relevant for keen readers as a base for the context of this BPD, a context that is my life. Readers wanting to examine this life-narrative can go to: (a) eBookMall, (b) Baha’i Library Online or even (c) google the phrase Pioneering Over Four Epochs for great slabs of my story. And, finally, I have included a personal email and comment in Appendix 6 from Garret LoPorto, author of The DaVinci Method, to provide a personal context from one of the popular authorities in the field of the study of BPD.
Ron Price
10th Edition
Draft Number 4
1 May 2010
130 Pages(font 14)....No of Words: 50,000
ronprice9@gmail.com
Tel:03-63824790(from mainland Australia)
Tell: dial the international access code #
and then: 613-63824790(from overseas)
6 Reece Street Pipe Clay Bay South George Town
George Town Tasmania Australia 7253
INTRODUCTION TO THE FOLLOWING FOUR APPENDICES
The following four appendices embellish this account for the special interest of some readers and in order to give this account some degree of comprehensiveness. For a more fully comprehensive statement, of course, readers need to see this statement in the context of my five volume, 2600 page, autobiography.
APPENDIX 1:
STATEMENT RESULTING FROM THE LAST 2 CONSULTATIONS
WITH MY PSYCHIATRIST:
30 NOVEMBER 2007 AND 13 NOVEMBER 2008
Preamble:
My aim here is to state as succinctly as possible the new set of symptoms as they had developed since I began the new medication package of sodium valproate(NAVAL) and venlafaxine(effexor) in April/May of 2007 and as these symptoms were exhibited; firstly, as of 30 November 2007, the date of the first consultation summarised below with my psychiatrist; and secondly, as of 13 November 2008, the date of my last consultation. I have now had seven years(2001-2008) of very helpful consultations with my psychiatrist in Launceston Tasmania. He is a specialist in treating BPD, although I know from my long experience in having my BPD treated, that both professionals and non-professionals all have their own inevitably subjective evaluations and estimations of the expertise or non-expertise of the quality of such professional service.
A second aim here is to write the account of the experience and the results of each of my consultations , beginning with this one on 30/11/07 and ending with the last on 13/11/’08. I have been keeping such summaries since 2001, but in a more cursory note-taking fashion. These are, as I say, my thoughts and experiences relevant to the new medication package and in more detail than my notes had been from 2001 to 2007. In this way I am able to state before, during and after the consultation, the latest symptoms that concern me in a more reflective and summary fashion than in the somewhat spontaneous and less-thought-out manner than is usually the case when I meet in each session with my psychiatrist.
-----------------MORE TO COME IF DESIRED-------------------
married for 37 years, a teacher for 35 years and a Baha'i for 47 years |
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| RonPrice
Starting Member
21 Posts
Gratitude: 6
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Posted - 05/28/2010 : 06:45:27
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I have posted very long posts for the few to whom they are useful. Most posts at mental health forums are short and they serve their purpose---but so too do long posts. Readers are advised to just stop reading when they have had enough---or skim and scan.-Ron
married for 37 years, a teacher for 35 years and a Baha'i for 47 years |
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| warblaster
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| warblaster
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| warblaster
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Posted - 12/02/2021 : 03:13:15
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| warblaster
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MY BIPOLAR DISORDER: A 63 YEAR STORY IN CONTEXT
