I have posted much of my story here but will add a "short" update here.-ron
10.2 Retirement and The Old Age Pension At 65:
10.2.1 In 18 months I will be 65 and will go off the Australian Disability Support Pension(ADSP) and onto the Australian Old Age Pension(AOAP). I have not worked in full-time employment for nine years for reasons associated with this illness. I have been on this ADSP since 2001--seven years. Although I have been treated for the worst side-affects of BPD, I have little energy, enthusiasm or capacity for full-time employment or demanding social and community activity that entails many hours of interaction and long periods of listening and talking. When I unavoidably take part in such social activities, it is usually because I want to please my wife to whom I have been married for 33 years, although sometimes I take part in some community activity out of a sense of duty and social responsibility, an important part of my religious ethos, as I have indicated above. But my preference is to avoid any interaction settings that involve more than a very few hours of engaged activity. I have said this before in this document but, I know from experience that this aspect of the current manifestation of this illness is little undertstood and needs repeating.
10.2.2 I write this statement for many reasons. Initially it was for an interview with a Centrelink Disability Officer in the Department of Health and Human Services back in 2001 in order to obtain the ADSP. Since 2001 I have written many further drafts of this statement: (a) for internet purposes at mental health, bipolar and depression sites and also (b) to update that original statement because my illness is an ongoing one whose story is far from over. I trust the above outline provides an adequate information base for others to evaluate and understand my situation and/or to draw on my experience in a form that may be of use to them.
10.2.3 I apologise for going on at such length. I know from my experience of 35 years as a teacher and from the many occasions when I have attempted to summarize my experience of BPD, that some readers and listeners tire, lose interest or feel that there is a loss of relevance in the account because of its length. Still others are simply not able to read such a lengthy statement or follow a long verbal explanation. When I post such a statement on the internet such an individual, such a reader, requires that I write in a simple style, write briefly and with simple words. I do not always KISS, Keep It Simple Stupid, as advised in much contemporary business English programs, programs I have myself taught.
10.2.4 When some readers are required to read such a statement like this one: (a) in a formal educational setting, (b) as a member of a government department involved in making an assessment of my condition, (c) in any one of a number of other settings where an assessment of my condition requires reading a lengthy piece/essay/statement like this or (d) simply as someone reading in their leisure-time, the exercise proves too onerous, too uninteresting or too tedious for them. I can understand this reaction for, I too, have my limitations and often am disinclined to read long statements on many a topic. Of course, many others appreciate this more longitudinal account and I have had a good deal of positive feedback on the internet thanking me for my analytical narrative.
10.2.5 This age has become a highly visual one and, I might add, a world with an auditory and sensory emphasis. Reading is only one of many ways people learn and, for many, reading is not their preferred learning mode. Then, too, we all have our constellation of personal interests and I certainly would not expect everyone I meet and who knows me to take any particular interest in this statement any more than I might take an interest in some of their passions and concerns, problems and activities. We can not all be interested in everything and take part in all of the activities we are encouraged to take part in--in today’s world, if we ever could in the past in other ages and centuries.
10.2.6 I felt it was essential to place my illness and my experience of it in context, so to speak. I know there are many, indeed millions, who have problems far worse than my own. But this is my story, my disability story, briefly or not-so-briefly stated. I could say much more and I do so in my autobiography/memoirs for anyone who is interested in reading my story. I would likenow to turn to “the road ahead.”
10.3 The Road Ahead: Responses to This 20,000 Word BPD Story:
10.3.1 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, many others who come across this account--for the most part on the internet--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 in the context of my day-to-day relationships. For the most part we fight our personal battles alone but sometimes, occasionally, we get with a little help from our friends.
10.3.2 When I do share some of my story, for sharing too is a more popular activity these days, I find others not inclined to be interested anyway or, if interested, they are not sure what to say and so they change the subject or I do to relieve their embarrassment. Sometimes, though not often, an engaging conversation ensues. As I say above, I am happy with whatever reaction comes my way, although some reactions require more thought and comment from me than others. Most of my ‘coming out’ takes place on the internet and in that medium I can take my time for a more considered response to whatever written reaction results from one of my postings. It’s a safer zone cyberspace, at least safer in some respects. The internet also has its pitfalls, its snares and its difficult people with whom to deal. 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 unless, as sometimes happens, I am simply not aware of a response that has been posted. Some people write to me, various participants at locations on the internet where I keep up a correspondence, as best I can, at some 75 mental health, bipolar and depression sites.
10.3.3 When I give this statement on rare occasions to friends, Baha’i institutions and others whom I think may benefit from what has become quite a long read at 20,000 words, there are a range of reactions as I have indicated above, but which I summarize here as: (a) no comment, (b) a feeling sorry for me and telling me so, (c) a set of questions in writing or in person, (d) giving me advice, and (e) some combination of these four reactions. I am generally not troubled by people’s reactions after all these years, although I often have been in the past. On rare occasions someone wants to argue, to criticise, strongly assert a point of view at variance with my own, suggest I try various remedies like: drinking lots of carrot juice, praying more or using positive thinking and I have not always maintained my emotional cool, so to speak; although here, too, I am improving in my patience and my self-restraint, partly because of the new medication package I have begun in the last nine months. We all have to deal with the reactions of others, of course, and these reactions are not always to our liking. Being calm, however much desired, is not always achievable or even desirable for most of us. Although I must add that this new medication package is certainly conducive to a more calm demeanour. As I often say, in trying to summarize the context for this new tranquillity, “it is harder for my wife to get a rise out of me than she used to.” In the wider social domain, when faced with what would formerly have caused my punitive rebuttals/reactions to some of the statements of others, I exhibit much more patience and self-control.
10.3.4 Who knows what lies ahead in my dealing with BPD? At the age of 63 I would like to put this story permanently to bed--forever, never to return to another, yet another, chapter in the long tale, the longue duree, to use a French expression. 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 per day in a series of small time periods most days even after all this experience of bipolar disability. I am still a functioning member of society, but only in certain quite defined and limited ways.
10.3.5 The new pattern of behaviour that has become apparent after nine months on this new medication package(4/07 to 1/0 contains the following details: (a) alternating periods of fatigue, shortage of breath and sleepiness on the one hand; and energy and enthusiasm on the other—often within a few minutes making any sustained work or activity difficult to maintain; (b) staying awake to very late hours, usually until 2 or 3 a.m.—and often later—and then sleeping until 10 or 11 in the morning with an hour of sleep in the evening after dinner all within a context, as I pointed out above, of short bursts of reading and writing each day adding up to an 8 hour total of literary work per 24 hour period—and short bursts of other activities(domestic, social and, personal) adding up to another 8 hours, (c) a certain excessiveness/speed in speech patterns, a lack of moderation, a lack of control and an overly, overtly emotional state and over-the-topness, so to speak, which is more problematic when I am in those social situations I describe above of more than four hours of interaction; (d) a speeding in situations that do not require speeding like: washing dishes, making a cup of coffee, and other domestic and daily activities just in normal everyday scenes; (e) 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(although my doctor does not see this as OCD behaviour); (f) urinating on average every 80 minutes(my doctor says this is normal for my medical condition); (g) a nightly dream pattern that is more extensive than ever before in my life leaving me with a dense-and-heavy, somewhat disoriented, feeling on waking(with or without the dreaming); and (h) perhaps most importantly, a feeling of emotional and psychological weariness as well as a tedium vitae from the long and many scars left from years of battling with this BPD.
10.3.6 As I reread the above statement in section 10.3.5 I feel it is a little ‘over-the-top’ as they say in Australia, but it is accurate. It seems a little over the top because I am not used to placing all of the symptoms in one paragraph. Some of the above traits and patterns, of course, are problems everyone has in different degrees individually and in groups and, therefore, hardly worth emphasizing here. But they are: (1) the present symptoms of my bipolar disorder and (2) a cause of concern in some ways more to my wife who has to live with me than they are to me, although being the battler that she is and my personal carer in more ways than one, the worse side-affect of my behaviour on her is that she grumbles and grouses more than usual as result of my eccentricities.
10.3.7 The significant others in one’s life are an important source of relevant feedback and since I have been on this new medication 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/passivity and (c) an eccentricity, an over-the-topness or inappropriateness of verbal responses in social situations. For these reasons I summarize my symptoms here. I will return to this theme, this description of my present and recent physical, mental and emotional states and symptoms on this new medication regime, a regime I began in the first week of April 2007 and settled into both medications in May 2007.
10.3.8 For the above reasons it is my view that holding down a full or part-time job would be unwise. My psychiatrist also holds 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. I should reiterate, though, that my psychiatrist does not regard the symptoms (c) to (h) in section 10.3.5 above as problems of a serious or even minor nature, insofar as the excesses of BPD are concerned.
10.3.9 During the three years 2005 to 2008 I brought most of my volunteer work/activity to an end 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 and I have no desire to take part in them any more. I always avoid, if at all possible, what would once have been my community and social commitments.
10.3.10 I have now been on this new medication package for nine months (4/07-1/0. On 30 November 2007 I had the last half-hour consultation with my psychiatrist and an option to my 150 mg of effexor/day was outlined, one 75 mg tab +one 37.5 mg tab for two weeks and then one 75 mg until such time as I felt another visit to my psychiatrist was useful/necessary at which time we would review the case. We decided this reduction in the effexor levels was an option due to my excessive sleepiness. The other symptoms I outlined above were not considered problems to deal with insofar as medication alterations were concerned. Three weeks after that consultation I decided to reduce the effexor levels. I am currently going through an adjustment phase to this new level of effexor. When I have collected examples that illustrate aspects of my ongoing problems, explain and/or amplify the concerns I have expressed above; or when I simply have more to say about my ongoing BPD in this first year on this new medication package, I will extend, alter, add or delete some of this document. For now, though, I shall leave this account at this juncture in time with the following comment.
10.3.11 Altering the brain and its chemistry through medication, alters so many things about one’s life that in some basic ways one becomes a different person much more so since the brain is the central data processing unit in the body. This ongoing story is and will be partly about that different person I have and will become as a result of my BPD. I hope the above account is as much use to others as it has been to me in writing it over these several editions and their many drafts in the last few years. 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 a story as possible; and, finally (d) to bring those to whom I write this account up-to-date on this story.
10.3.12 There are now 100s of people at some 75 BPD, D, mental health and general health sites for whom and to whom I write this account. There are, as well, a very small handful of personal friends and relations to whom I have sent this story for a range or personal purposes. Some in this latter group want to know this story and others I feel it necessary, for various reasons, to let them know so that they have a better understanding of my present situation and past condition. But whatever the reason for my utilizing/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. I look forward to receiving any feedback that those who read this and feel moved to write words either of encomium or opprobrium!
STATEMENT RESULTING FROM THE LAST CONSULTATION WITH MY PSYCHIATRIST ON 30 NOVEMBER 2007
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 and venlafaxine(effexor) in April/May of 2007 and as these symptoms were exhibited as of 30 November 2007, the date of the last consultation with my psychiatrist. I have now had six years(2001-2007) of very helpful consultations with my psychiatrist in Launceston Tasmania. He is a specialist in treating bipolar disorder(BPD), although I know from my long experience in having my BPD treated, that both professionals and non-professionals all have their own 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. I had done this since 2001, but in a more cursory fashion and have kept my notes. 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.
This statement will also serve to outline the process and the results of this consultation and future ones for use by myself and relevant others: (a) with whom I correspond, especially on the internet at mental health, bipolar and depression sites; and (b) whom I feel would benefit from knowing about my most recent experience with BPD.
I mailed a first draft of this statement to my doctor(name withheld for reasons of privacy and confidentiality), so that he would have it on hand 10 days before our next consultation on 30 November 2007. It was my intention that this would help him in his assessment of my case and to facilitate our discussion. After our consultation I redrafted that initial statement in a second draft. This statement here/below is that 2nd draft. It is written to include the points raised and not raised during our consultation as well as the decisions and suggested directions we reached. -Ron Price 3 December 2007.
Discussion and Decisions at Consultation on 30/11/07:
1. CONCERNS ABOUT SLEEPING:
From my wife’s point of view I am “falling asleep all the time.” My behaviour was not frenetic and overactive, as it had been before I had gone on this new package of meds and as it was the main reason for going on these meds. My behaviour was somnolent, far too sleepy for a normal person. It was this concern of both my wife and I which led us to feel that a visit to my psychiatrist on 30/11/07 would be useful. The new pattern of sleeping behaviour that has become apparent after eight months on this new medication package(4/07 to 11/07) contains the following details:
Alternating periods of fatigue, a slight shortage of breath and sleepiness on the one hand; and energy and enthusiasm for my academic/literary work on the other—often within a few minutes. To put this sleeping pattern in a more precise way, there are several aspects of sleep, sleepiness and wakefulness that I would now like to outline:
(i) when I stop working(i.e. stop reading and writing), I fall asleep: (a) in front of the TV, (b) when I am just gazing out the window or (c) when my mind is not engaged to its full extent, as it is in my mental/writing work;
(ii) often when I am reading and writing I get so sleepy I have to: (a) go for a walk, (b) take a break and/or (c) have a sleep;
(iii) I sleep for: (a) 1 to 2 hours in the afternoon or evening and then go to bed between 1 a.m. and 5 a.m.; or (b) 1 to 2 hours on going to bed at 11 p.m. with my wife and then wake. About 1 a.m. in this pattern, I get out of bed and stay up for 2 to 4 hours. I then go back to bed for 4 to 6 hours-getting out of bed finally at 10 to 12 noon; and
(iv) (a) I am awake until the very late hours of the night, as I indicated in (iii) above, usually until 2 or 5 a.m. Then I sleep until 10 to noon with an hour or two of sleep in the late afternoon or after dinner; (b) My reading and writing tends to be in short bursts adding up to an 8 hour total of literary work per 24 hour period; and (c) I have short bursts of other activities: domestic, social and, personal--adding up to another 8 hours.
2. CONCERNS ABOUT OBSESSIVE-COMPULSIVE DISORDER:
I seem to exhibit more OCD, obsessive-compulsive disorder, behaviour: straightening & squaring bits of paper, magazines & newspapers on tables and desks and other forms of tidiness much more than in previous years on lithium—again this is of more concern to my wife. After my description of what I felt to be OCD behaviour, my doctor felt my behaviour in this area was not OCD, only a behavioural abnormality associated with my activity base and style of life.
3. CONCERNS ABOUT URINATION:
I am urinating on average every 80 minutes. I calculated this statistical average in September and the psychiatrist said this was normal/average.
4. CONCERNS ABOUT DREAMING:
I have a nightly dream pattern that is more extensive than ever before in my life. This leaves me with a dense-and-heavy, somewhat disoriented, feeling on waking, a feeling which goes away quickly. Often it takes me an hour or so to get to sleep; I often sleep lightly. On waking I often: (a) stay in bed and go back to sleep, (b) get up and go back to bed and sleep or (c) get up anyway and get a rested feeling after a shower, etc. The doctor said this extensive dreaming was also a normal reaction to effexor.
5. CONCERNS ABOUT WEARINESS & SIGNIFICANT OTHERS:
5.1 I get a feeling of emotional and psychological weariness, what used to be popularly called tedium vitae, late at night after 8 hours of literary work in the previous 24 hour period. In some ways this a somewhat natural feeling given the extent of my literary and academic work. A quiet and low-key death wish usually accompanies this feeling. The psychiatrist was not concerned about this theme/topic since we had talked about it on several occasions in the last six years, since 2001, and neither he nor I felt the need to discuss it during this consultation.
5.2 The significant others in my life are an important source of: (a) concern to me and (b) relevant feedback. Since I have been on this new medication my wife has come to accept my sleeping eccentricities, although both she and I wonder what would result from a reduction in the levels of effexor. She has noted that I am given to: (a) inappropriateness of verbal responses in some social situations, although this is not a major concern; (b) more OCD behaviour whether it is actuall y OCD or not it is still an annoyance and (c) speeding in unnecessary activities. The psychiatrist and I did not discuss these aspects of my behaviour.
6. CONCLUSIONS AND WHERE TO FROM HERE:
The above served as a basis for discussion and was altered after our consultation so that this statement, draft #2, would include the decisions we arrived at and the items discussed and not discussed, for my record. During our consultation on 30 November 2007(4:30-5:00 p.m.), we decided that the best course of action to take in relation to the above behaviour/symptoms was:
A. stay on the present levels of effexor(150 mgs/day) or (b) reduce the effexor by 37 ½ mgs for 2 weeks; then reduce it again by another 37 ½ mgs until a review with him at my next visit.
B. I went on effexor in April 2007 because I was not sleeping much and life was far too frenetic/active. This is not the case now. I am sleeping from 6 to 8 hours every day, but my sleeping patterns are abnormal/erratic/unconventional and might be normalized by reducing the levels of effexor as suggested in section A above.
C. There may be no change in my sleeping patters, even if I reduce the effexor. If I seem to be okay, that is, sleeping well and not too active, as I am at present, or too sleepy as I was at first, then, perhaps, I can go off the effexor entirely in the 2 stages suggested in section A above.
D. I received 4 prescriptions: 3 for effexor(150, 37.5 and 75 mgs tabs) and one for sodium valproate. I will get the prescriptions filled when and if it is appropriate and apply them as I decide in the weeks ahead. When additional medication(37 !/2 mg effexor) is required I will get a script from my GP not my psychiatrist.
Three weeks after writing the above draft #2 of this most recent consultation, on 24 December 2007, I decided I would reduce the level of effexor(from one 150 mg tab/day to one 37& ½ mg tab plus one 75 mg tab). My wife and I will assess the new medication regime and especially the effects on my sleeping patters and, when and if it seems appropriate, I will reduce the effexor level again from the 112 and ½ mg tab level to the 75 mg tab level as suggested by the doctor. The results of this medication shift will be reported on this document in the weeks and months ahead.
Ron Price 3 December 2007