Me and My Beast

Random ramblings of frustration and a look toward my future

2011-02-26T18:11:00.000-05:00

I went to the walk-in clinic today to get my monthly Haldol (anti-psychotic) injection. This time, unlike other times, I actually told the doctor that I was having issues such as delusions and voices sometimes. As expected, the doc said that there wasn't much he could do from a walk-in clinic but he was willing to refer to me to a psychiatrist. He completed the paperwork for the referral and gave it to the nurse. When I asked if they had any idea as to how long it would take to get an appointment, she said that it would likely be two weeks before an appointment was scheduled and it could take at least six months to actually see the specialist. Surprise surprise. She elaborated and said that there were not a lot of psychiatrists in the area thus the reason it would take so long but offered for me to go to the hospital if necessary for admission.

It is frustrating as hell to be mentally ill. When one has a physical illness, generally the most one waits is a week or so to get an appointment and be diagnosed, unless it is a more complex illness, but regardless, attention is paid to the problem and it is addressed as quickly as possible. One would think that the provincial/federal governments would be taking initiatives to address the mental health system downfalls, especially given the burden mental health issues causes to people entitled to disability, be it through an insurance company or even closer to home for the government such as social disability. I was on Ontario Disability Support Program (ODSP) for about five years, something I never even considered until I was destitute and had no other choice. Fortunately for me as well as the provincial government (and taxpayers), I was able to run my own consulting business for most of that time resulting in only a small subsidy from ODSP but since I self-employed, I still heavily relied on the ODSP benefit system for prescriptions and dental. Programs such as ODSP must cost the government a fortune in total social benefits and could be relieved by having people with mental disabilities properly supported through psychiatry and proper, industry recognized counseling services designed to relieve symptoms and allow at least a significant portion of the mentally ill to return to work. I'm not saying that psychiatry and therefore medicine is the solution to all mental illness (sometimes medicine is not even required and can be addressed to psychosocial counseling) but if there was more of an incentive financially to become a psychiatrist then it would result in many more such specialists. From what I recall, the average time period a psychiatry resident must remain in residency is five years - a far cry from the two years for a GP. I just don't see the need to study beyond the four year medicine schooling for a whopping additional five years to become a psychiatrist over two years for a doctor that is responsible for diagnosing a great deal of illnesses such as a GP. Furthermore, it is also my understanding that a GP has much more earning potential than a psychiatrist especially when a psychiatrist chooses to work for an institution such as a hospital. There are VERY few private practice psychiatrists and those that are in private practice are overwhelmed with illnesses that a GP is generally more than qualified to deal with (i.e. minor depression or anxiety) so it takes months if not years to see a private practice psychiatrist and generally just about the same amount of time to see a psychiatrist that works out of an institution.

I have been in the mental health system for a long time now and have come to learn a lot about the field. I have had a gamut of psychiatrists over the years with all my moves and some were good and some not so good. I recall my first psychiatrist in the Brockville Mental Health Centre back in 2004 I believe. It was his solution to everything to heavily medicate each patient with a drug called Nozinan. Nozinan has many uses - it can be used as an anesthetic, anti-psychotic and for anxiety at low doses. I recall that he put me on 100mg at bedtime and 25mg PRN (taken as requested by the patient for such things as anxiety) and for about a month of being in the hospital, I was a complete zombie! I could barely talk or function because I was so drugged up with Nozinan. At this point in my illness, my diagnosis was major depression and a few anxiety disorders that follow me to this day - hardly an illness that required such heavy use of Nozinan. I changed doctors and she put me on a heavy dose of Seroquel (an atypical anti-psychotic) in addition to my anti-anxiety and anti-depression meds. This was much more tolerable and allowed me to sleep at night but be awake and "with it" during the day. It was at this time that my diagnosis was changed to bipolor disorder (aka manic-depressive). It was not until a year or so later, when I had several episodes of hallucinations, delusions, hearing voices and such that my diagnosis was changed to schizo-affective disorder which is very much like schizophrenia and a mood disorder combined. I now have been diagnosed with schizophrenia and a few anxiety disorders that have followed me all throughout my illness and finally feel that I have a proper diagnosis based on my symptoms over the years and the fact the treatment is working for the most part. Schizophrenia can and often includes episodes of depression and OCD-like symptoms which I've had since I was a little boy delivering newspapers. As well, it is not uncommon for a schizophrenic to have significant issues surrounding social settings and maintaining relationships, something I've struggled with all my life so really, my various diagnosis's can be summed up to one, being schizophrenia.

I recently subscribed to a magazine published in Canada but distributed throughout Canada and the US called Schizophrenia Digest. As well, I also purchased a couple of DVDs that describe the schizophrenic experience and recovery of the person who founded the magazine. They consist of a speech and TV interview and I found them compellingly similar to my experiences over the years and overall was helpful to feel that I was not struggling with this illness alone. Bill MacPhee, the founder and a sufferer of schizophrenia gave me inspiration and hope that I too could live with schizophrenia while functioning in, for the most part, a normal environment. Bill has a wife and three children - a rarity for a schizophrenic and seems very in-tune with his illness, much as I am as well so it was great to hear and watch the DVDs.

Having seen the DVDs though makes me want to do something to help out other sufferers of this very debilitating disease but I just don't see myself leaving my prestigious, well-paying job to work as a peer support worker as that is about the only thing in mental health that I would qualify for. I'm going to instead try and join some associations, volunteering and I'd love to have the courage to provide public talks in a small setting to families of and sufferers of schizophrenia and other mental illnesses. Something to think about and work towards I guess.

Anti-psychotics and ACT teams, or the lack thereof

2011-02-19T15:11:00.002-05:00

My Mom will be advocating on my behalf to the boss of the ACT team in Brockville in an attempt to get me back on the team in the interim until I have been "approved" for the KW ACT team and placed on the waiting list. Yes, "approved" - apparently the KW team must qualify me first for their team by ensuring I'm "sick enough" to warrant being on an ACT team. I found this out about a week ago while speaking with the manager of the team in KW. Furthermore, the fact that the Brockville team discharged me does not help my case out with the KW team as they must assume that the Brockville team discharged me on the basis that I was doing well enough to no longer require the support of a team. This despite that I told them the only reason they discharged me was because I was relocating to KW and they (the Brockville team) assumed that I would get on the KW team immediately. Assumptions assumptions. I have learned both professionally and in my personal life that one should never assume anything - always ask and confirm before taking action. If only the Brockville team members had the same philosophy.

My Mom and I did some research on the Ontario Act Association (OAA) which is an organization that provides regulations in which all Ontario ACT teams follow and right in the discharge requirements section of their policies, it clearly states that should a team client relocate out of the geographical area of the team then that team will continue to follow the client until such time that they are receiving equivalent services in their new geographic region. Aha, so something we can work towards in our case to get me back on the Brockville team. When I mentioned to the Brockville team leader about our research on this and the fact that I was discharged when I should not have been, she just acted dumbfounded that I even knew about the OAA. Thanks Mom.

When I spoke with the Brockville team leader last week, all she could offer was to provide me with the KW crisis line which was, as suspected, completely useless. Crisis lines generally are to provide somebody in need to talk to somebody, typically a volunteer who has very little, if any, training in the mental health field and is generally used for lonely people that just need human interaction. This is not what I need - I need my meds to be reviewed and adjusted as necessary. More specifically, I feel that my haldol is not at an adequate dose and from reading some materials on schizophrenia that I recently purchased, I would like to try to replace risperidone with a different medication that is generally thought to be the best for ongoing psychotic symptoms such as what I've experienced for years now. I believe it's called Clorazil or some such.

Risperidone, being an atypical (newer) anti-psychotic, has several possible side effects, the most prominent being loss of libido which I am experiencing and weight gain which I believe I have experienced slightly since being put back on it and most recently had my dosage increased. I have not looked up the side effects of the other medication that I want to try but if it will rid me of the delusions and voices then I'm definitely willing to try it. While all medications have side effects, haldol has given me very little and the most significant side effect that one can get from haldol can be subsided through the prescription of another medication called Cogentin. The only side effect I have experienced with haldol is the tics, medically known as tardive dyskenesia (sp?) which is involuntary movements of muscles primarily in the face. This is presently very minimal and basically consists of the corner of my mouth drooping at times, mainly at times of stress. One other interesting side effect well known with risperidone is the ability for one to excrete breast milk (even in men) due to the increase in prolactin that it causes - something I've been VERY fortunate to have never experienced even when I was on 6mg / day (presently on 2mg / day) before.

The voices have diminished recently and overall I am not as uneasy about the world in terms of being under the impression that I'm being watched although I do have this occasionally at work. I was in and out of training all of this week and have kept my personal calls to an absolute minimum while at my desk which is likely why I have not felt like the two spies at work that sit across and diagonally from me are so interested in what I'm doing anymore. As long as I maintain no or very few personal calls while at my desk then there is nothing they can report back to my boss. I still continue to only have a smoke approximately every hour and a half so even if the security guards do monitor my movements and smoke breaks, they are reasonably spread out so as to not warrant termination of my employment. However, having said that, my training is now over so it's back to my desk I go come next week so we'll see how I feel after this weekend in this regard.

This weekend I'm at my Mom's with my son for the long weekend - something I've really been looking forward to. It's been three weeks since I was down in the Brockville area and seen my son so it was a huge relief to see him when I arrived last night. He was up and waiting for me at 23:30 when I arrived. I was worried that he may have given up thinking that I wasn't coming down and just went to bed but he didn't.

Today I've felt very lethargic and have spent most of the day in bed drifting in and out of consciousness and generally have had the feeling that I really just wish to remain alone - away from everybody. The odd thing is that I never feel this way towards my son - just everybody else. I could be around my son 24x7 and it wouldn't bother me a bit. I do feel that having my son around helps me get through my illness as he's a very strong inspiration for me to try and block out the effects of the illness. While my paranoid delusions and voices do not generally subside anymore than usual when my son is around, I find that I can somewhat ignore them when he's around. I firmly believe that he is what has kept me as sane as possible over the years since becoming ill and without him, I'd likely be homeless or at the very least, living in a mental health group home and hospitalized far more times than I actually have been. I consider my son my best anti-psychotic medication although I must admit, there have been several times where his presence just hasn't been enough and I've gone loopy despite him being around, as my family can attest to.

Anyways, speaking of my son, I told him I would go downstairs and cuddle with him while he plays XBOX so I best get down there. Stay tuned for further updates on my state of mind, ACT teams and general update ramblings.

...J

Mind Games and Update - 02/10/2011

2011-02-10T07:15:00.000-05:00

First an update - I've been playing phone tag with the ACT manager for the Kitchener ACT team and so far the only thing I know is that there is a long waiting list for the ACT team so it does not appear that I'm going to be getting any psychiatric support in Kitchener anytime soon unless I have a hospitalization in the KW (Kitchener-Waterloo) area unfortunately. While my Mom and husband feel that I am still delusional (I beg to differ), it does not warrant going to the ER and being admitted. I have also been in touch with the ACT team in Brockville to see if I could get back on with them so I could at least see my former psychiatrist with no such luck. All they could offer was to call the crisis line in KW - something that I feel is pointless because generally crisis lines are there to "chat" only and cannot do much else as I confirmed yesterday when I called.

My Mom found an association called the Ontario Act Association (OAA) that provides guidelines and formal regulations in which all Ontario ACT teams shall follow. In reviewing their policies on their website, I found out and confirmed my suspicions that I should NOT have been discharged from the ACT team in Brockville just because I moved out of the area rather they are supposed to follow me until such time that I receive equivalent services in my new geographic region. I brought this to the attention of the team leader of the ACT team in Brockville and she seemed dumbfounded that a) I even knew about OAA and b) that I had taken the initiative to review the discharge regulations and was willing to fight for my rights. Although it did not make any difference with her and the pdoc (psychiatrist), my Mom is going to advocate on my behalf by escalating the issue to the person in Ottawa in which all members of the ACT team report to. Hopefully something comes of that.

The mental health system in Ontario and everywhere really, is very sporadic in terms of services available in different regions. I didn't have any waiting period when I first went on the Kingston ACT team when I lived there and same with Brockville but Kitchener has a wait list a mile long and that's even for people that are transferring from an existing ACT team never mind the poor folks in the community that are not currently linked to any ACT team but need the support of such a team.

Now on to the first part of the title of this post, my mind has been playing tricks on me lately as I've come to find out. One such example is a few days ago, my husband was watching something on Youtube with his headphones while I was watching Golden Girls on the tube and for some reason, I was convinced that because he was listening to his headphones, the actors on the show I was watching could not hear each other. It was just a sudden thought and feeling that overwhelmed me and I had to have my husband take his headphones off and just watch TV with me. This occurred a few times over the past few days so now my husband no longer listens to his headphones while I watch TV. In hindsight, looking back now, I realize how ridiculous this was and how agitated I was with my husband at the time about the fact that he was challenging my thought process by saying things like "You are watching a TV show - something that was filmed upwards of 25 years ago - of course they can hear each other". This did not make any sense at the time and I just dismissed what he said as though he was crazy. Me, I was convinced that they could not hear each other and that he must turn off his headphones so they could continue the show and I could continue to watch it. Very bizarre me thinks now.

Speaking of TV, I'm finding that there are only a select few shows I can actually watch (Golden Girls being one of them) and focus on. All other shows piss me off and are nothing but a distraction for me. The same goes with the radio - I cannot enjoy music like I used to be able to. I find myself turning the radio off while in the car and prefer that the TV stay off unless it is a show in which my mind approves of. I don't know why this is - it's not like the shows are competing with voices as I don't generally hear voices any more and when I do it is typically when there is silence (such as when I'm lying awake at night waiting to fall asleep) and they are generally brief and consist of two or more men or women (unfamiliar voices usually) having a conversation in a different language - one in which I cannot interpret. In the past, I used to hear voices commanding me to do things (sometimes they were quite vicious and mean) or they would be saying exactly what I was thinking as if somebody was sitting beside me reading my thoughts and then telling me what I was thinking. These types of "conversations" are now gone as a result of the meds I'm on (thank goodness). They were very disturbing at times but now I can deal with the voices and just ignore them to the best of my ability and eventually they just go away.

Well, must get off to work but I will continue to post updates WRT the ACT teams along with other random ramblings. I'm planning on going to Brockville this weekend at which point, I will restore my previous blog posts to provide a historical perspective.

....J

Update - 02/06/2011

2011-02-06T09:23:00.001-05:00

For those that may have followed my blog in the past, I have removed all posts but intend on putting everything back next time I'm in Brockville and on my home computer (where I conveniently backed up all my posts to Wordpress prior to deleting them all).

I had another hospitalization in Brockville Mental Health Centre (Elmgrove) a few weeks ago. This was one relatively brief at only a week. My mom came to get me in Kitchener (where I'm presently working full time and living through the week), rescuing me from what I now know as a very intense psychotic episode consisting of a very bad paranoid delusion - one in which I've had before.

My psychotic episode started over the weekend while I was alone in my apartmeint in Kitchener having not been back home to Brockville for almost three weeks (due to weather conditions). I became very aware of my surroundings and felt as though I was being watched like the instinctive feeling you get when somebody is staring at you only nobody was there with me. I felt very lost that weekend and did not know what to do with myself. I could not leave the apartment - even if it was to just go down the hall and do my laundry for fear of running into people in which I felt were all spies although at the time I did not know why they were spying on me and what they were reporting back and to whom.

By the following Monday morning, I felt very intimated and fearful about the notion of leaving my apartment to go to work but I went anyways. I arrived at work early (as usual) at around 6:30 AM and by 9:00 AM I was so overwhelmed with fear and the idea that everybody around me was watching me that I left work and went home. On my entrance back into the apartment building, one of the superintendents let me in and said "Hey, I know you, I'll let you in". My paranoia heightened at her comment and immediately my eyes fixated on her husband who was setting up the computer in the new office they built in the front lobby. It was open for business and all I could think was that the computer he was hooking up and the comment made to me by the super was messages about something but I didn't know what at the time.

I quickly made my way back into my apartment, closed and locked the door and fell to the floor. I continued to have this overwhelming fear that I was being watched and I tied two-and-two together and came to the conclusion that I was being watched and now I knew by who. My landlords were watching me through invisible cameras (think nanny cams) that were all throughout my apartment on their newly setup computer that was in the front office. Panic struck that I was being watched by these people that I was intimidated by normally, I was suddenly very aware of every action that I took while in my apartment.

I quickly and instinctively did the only thing I could think of to escape the cameras and retreated into my bedroom closet, closing the door behind me. It was dark - far too dark for any cameras to be able to see me. I was safe and free from being monitored! I left the closet and in quick pace, grabbed my cigarettes, the ash tray and telephone then went back into the closet not knowing what I was going to do but knowing that I was safe in there. My mind was racing and I felt very confused. Why would they be watching me? What was of such interest about my life and daily living that would prompt them to install hidden cameras and monitor me remotely from their office? I didn't have any answers but was certain of one thing - I had to get the hell out of my apartment but I was at a loss as to where to go because of the spies outside. It seemed logical that the only place I was truly safe now was in my tiny, long and narrow closet. I don't recall exactly what I did in there in the beginning but at some point, I called my Mom and told her what was happening. I was totally disappointed and further confused when she didn't believe me and tried to talk me out of what I was obviously experiencing. At some point she let me go to call my husband at our house in Brockville but he wasn't answering the phone. My Mom and I had several conversations that morning from the closet and eventually I was able to get in touch with my husband and yet again was disappointed when he tried over and over to convince me that there were no cameras in my apartment and also that there was no front office based on his knowledge of his last visit. I blatantly told him he was wrong and hung up after which I called my Mom back and she said that she was going to drive the 4 1/2 hour drive to Kitchener to come and get me. What a relief!

I was further burdened at the same time by messages from God that I had been receiving over the past few days and while the messages began as God being nice to me and sending positive messages, they quickly turned to vicious messages indicating that I was a bad parent, I needed to die and I should take all of my pills and overdose.

Without going into too much detail, by 16:30 or thereabouts, I was reunited with my Mom and brother and out of my apartment. It felt good to be out of my apartment and out of the watch of my landlords however I was still receiving messages from God pressing on the notion that I must die - it was my time to surrender and submit to his messages. Fortunately, I did not succumb to these messages and was reassured by my Mom and husband over and over that it was not my time to die. There was clearly something amiss!

I stayed over at my Mom's house Monday night and was taken to the the general hospital in Brockville by my husband the following morning - a standard process in which to be evaluated and the first step in getting into the local acute care ward of the psychiatric hospital - the same hospital in which I had been several times in the past, sometimes for months at a time. I wasn't sure I needed to go to the hospital but the disbelief by everybody that I spoke to about my fears and what was going on told me that perhaps it wouldn't be a bad idea and maybe I did need help.

After the standard Q & A process by the nurses, doctor and crisis team, they all concurred that in fact it would be in my best interest to go to the psych. When I arrived at the psych, a psychiatrist that was on call met with my husband and I along with a couple of nurses and I explained what was going on and before I knew it, I was admitted and going through the intake process with my assigned nurse. I was somewhat familiar with the psychiatrist that admitted me (Dr. Jackson) as he had given me ECT treatments in the past. He was a handsome man with what I've always thought was a soothing voice.

The following day, I met with my assigned psychiatrist (Dr. Mallone) whom I had dealt with several times in the past during my previous admissions. He was quite familiar with my illness and the meeting also included a social worker, a resident and a nurse. He asked if I felt that perhaps what I was thinking could be related to my illness. I said I didn't know. I've known for years, since being diagnosed, that I'm schizophrenic but I did not believe that what I was feeling and thinking was related as the thoughts and feelings were so close to me and real. Yet another disbeliever I thought. Nonetheless, I agreed to have him increase one of my oral medications, an anti-psychotic called Risperidone. I'm also on Haldol injections that I receive once every four weeks but my ACT team psychiatrist a few months prior to this event added oral Risperidone as I continued to hear voices calling me, commanding that I follow certain instructions and saying a running commentary of my thoughts. This was Wednesday.

By Friday, although I still had the same thoughts and feelings albeit they were more subtle, I was feeling well enough to go to my Mom's for the weekend and requested and was granted a weekend pass. I had not received a message from God since Tuesday morning which was a relief if nothing else. I enjoyed my weekend with my Mom and son (he's was staying at my Mom's) and returned to the hospital Sunday night. By this time, I was seriously questioning the notion that my landlords were watching me and decided that a discharge was in order and upon meeting my Dr. Mallone on Monday morning, I asked that I be discharged which he agreed with. It was also my understanding that in parallel to my discharge, he was going to be in touch with the ACT team in Brockville and find out what was going on with my referral to the Kitchener ACT team - something I had been frustrated over since I came to Kitchener back in November 2010 to start my new job. I left with a prescription for the additional oral meds and returned to my Mom's for the remainder of the week. Since I had my work computer with me, I worked for a couple of days that week from my Mom's and returned to Kitchener the following Saturday with my husband as it was generally felt that I was still somewhat unstable and should not be left alone to pace around my apartment without any outside support.

I have been back in Kitchener for a week as I write this and am doing fairly well. My husband is staying here for the upcoming week as well to ensure that I'll be alright by myself. The ACT team in Kitchener is meeting tomorrow (Monday) and I've been assured by the manager that my case will be brought up and they will decide what they are going to do for me. Just prior to me moving up here, there were long-term mental health bed closures in London that somehow affected the ACT team in Kitchener requiring them to take on several new cases. Although I was guaranteed a spot on the ACT team in Kitchener given that I came from another ACT team (from Brockville), it was unknown when I moved up here as to when that would take place given their new case load. IMO, it's been three months and I should be on the ACT team by now.

On the job front, it is going very well except that I have this overwhelming fear that I'm going to be fired. I was honest and upfront with my boss and told him that I was diagnosed several years ago with schizophrenia, bipolar and a few anxiety disorders in which he was very supportive and at the time said the important thing was for me to get better. I'm not sure though that I believe him and feel that he is building up ammunition to terminate my employment to avoid any future headaches should I go loopy again. Furthermore, I have come to find out that two colleagues in neighbouring cubicles are spying on me and listening to my phone conversations and recording when I make personal calls and what I say during such calls. They are then reporting this back to my boss which I think he's logging, again as ammunition. Due to this, I worked from home last week as much as possible and when I did go into the office, I tried to limit my personal calls and whisper during those calls so my neighbours couldn't hear me - irrelevant since they record all my telephone conversations and call log at work - something I'm very displeased about needless to say!

On Friday, I went into the office for 5AM so I could have time to work alone and have smoke breaks whenever I felt like one as opposed to only going out for a smoke when my colleague smoker goes out. He has a good reputation so I figure as long as I only go out for a smoke when he goes out then I'm safe on that front and my boss can't later say that I'm taking too many smoke breaks. During my time alone, I afford myself one smoke per hour in case the cameras are watching me and the guards monitoring the cameras report back to my boss. I'm covered as far as smoke breaks go.

I suppose this is just something I have to live with until I feel at some point in the future that my boss has confidence in me again that I'm not going to abandon ship and leave him and my infosec colleague out of the Toronto office high and dry while on sick leave.

I will post tomorrow or Tuesday once I speak with the ACT team in Kitchener.

...J