Wednesday, October 31, 2007

Me and My Beast - 10/31/07

I wanted to talk a little about my symptoms and therapy. Perhaps you can relate or know a friend or loved one that is going through the same thing. My most predominant symptom these days is mild to severe depression followed by suicidal tendencies. While my medication has helped me significantly, I firmly believe that medication is not the end all be all. In my experience, medication should always be followed up with therapy, either individual or group. If you're extremely shy like I am, individual therapy is likely the best option. The problem is finding something affordable. To see a psychologist in Ontario is an out of pocket expense with the costs building up very quickly. If you have benefits at work, you're likely covered for some psychotherapy by a registered psychologist but in most cases, it only covers you for $500 per year. This really only scratches the surface with most psychologists billing at at least $75 per session and that's cheap.

For me, group therapy was absolute torture. As I mentioned in a previous post, I was able to get some useful information from it even though I didn't speak unless absolutely necessary. The anxiety though from just sitting in a group (around 15 people) was so great for me that I think it did me more bad than good in the end. While living at my parents when I first got sick, I used to see a psychologist through the local psychiatric hospital which fortunately for me, was covered as part of their services. Unfortunately, there wasn't a whole lot of structure to the therapy so although I saw the psychologist often, I never really benefited from it. Prior to me becoming really sick, I was diagnosed with depression and was seeing my family doctor for about an hour at a time for what he called therapy. I called it "shoving ideas down my throat". He wasn't compassionate to my problems at all and he trivialized everything I had to say. I then went to see a psychologist, expensing it through my work benefits but after my $500 was up, I couldn't afford to continue to see her. I did tend to "click" with her and gained a little bit out of the therapy. One other therapist I went to see was a former GP that had taken training in various therapy methods. She was in Toronto and I went to see her after I moved back to Toronto from my parents when I thought I had recovered. I didn't see her long because again, I didn't feel I was getting much out of it. We spent something like the first four sessions just talking about my history, family, etc. Because she was a medical doctor, these sessions were covered under OHIP which was good.

My most beneficial therapy has been through brief discussions with my favourite nurse on my ACT team that I'm currently associated with. She's very compassionate and full of good ideas. She's also a very good listener. You'd almost think she's been through it all before herself although I don't think this is the case. She's a parent herself so she can provide valuable parenting advice when I'm having difficulty with my son. I really enjoy talking to her.

Anyways, on with my symptoms of schizoaffective disorder and obsessive compulsive disorder. I'll start with OCD just because I think it's a little more interesting, to me anyways and my symptoms for OCD were a little less common than something like repetitive hand washing for example. Although I didn't realize it at the time, my OCD started way back as early as eight. I remember doing my paper route and always thinking I needed to do different things such as counting stairs, counting steps taken from one building to the next, skipping stairs, avoiding cracks in sidewalks, and other behaviour that may seem normal but it was a little different for me. I felt that if I didn't do those things, something bad would happen. I don't recall if it was anything specific, just that something bad would happen. I never associated this with OCD until years later when I was talking to my psychiatrist about my other, much more bizarre symptoms. For years, likely starting in my teens, I would have what I call vivid movies play in my head sometimes that always involved me carrying out a homicidal act. A very violent homicial act. These weren't targeted to enemies or people I didn't like rather they would occur towards people I loved very much, close friends, and just anybody that happened to be around. I wasn't upset with these people, didn't feel any resentment towards them or anything, it just happened. While they were very disturbing, they happened so infrequently in my younger years that I just tried to ignore them and shrug them off as what I don't know. As I grew older and especially after I got really sick, these "movies" would happen more frequently, so frequent that I just couldn't ignore them. Not only were they scary, they made me feel bad and think there's something seriously wrong with me. I couldn't help but wonder if one of these times, I would actually act out my movie in real life. Something I developed while in my first hospitalization was visual movies of me stabbing myself in the head repeatedly. I spoke of this to my psychiatrist at the time and I think they were dumbfounded because they really didn't know what to attribute it to. This eventually went away after being put on Zoloft so I'm assuming it was a symptom of OCD.

One example of a very disturbing time was when I was helping my close friend put together a wooden play structure for his boys. We were in the garage, beside each other. He was getting screws or something and I was standing there with a hammer in my hand when out of nowhere, I was watching myself beat him over the head with the hammer killing him. It was very vivid, so vivid that I can still see the images of holes in his skull and blood pouring out everywhere. While it seemed to last for an eternity, in reality I think it may have lasted for five seconds or so. I just wanted to go home at that point but what was I going to say "uh, I just killed you with this hammer in my imagination and now I'm really upset and need to leave". He'd think I was absolutely off my rocker which I think he already thought because he knew about my illness and never really understood it.

I haven't told many people about this aspect of my OCD out of fear that they would be afraid to be around me. It's terrifying enough for me so I can just imagine what somebody else would think that's not a professional in the mental health care field. Anyways, so I told my psychiatrist about all of these events that were happening because I thought, am I a psychotic killer in the making, have I gone crazy, what. That's when I found out they were obsessions, symptoms of OCD albeit rare symptoms. I was put on Zoloft as my anti-depressant then as it was also very good with OCD. This was when I also started on Respiradol tablets. After a few weeks of being on these medications, I never experienced such dreadful "movies" again. I still have some very mild OCD symptoms in that I think if I don't do something, it could be as simple as placing something a certain way, then bad will come or something good will not come. I'm able to, for the most part, ignore these and move on with my life. But sometimes, it still plays on my head.

With respect to the "schizo" part of schizoaffective disorder, I experienced hallucinations, both visual and audible, delusions, and paranoia. These symptoms appeared gradually and didn't appear at all until approximately a year after becoming sick. Initially I was diagnosed with bipolar with psychotic symptoms after having visual hallucinations. These consisted of seeing people that weren't there, bizarre things like my driveway spinning like a tornado, flowers dancing and I mean dancing to a beat not just blowing in the wind (it was not windy at all that day), and some other things. As my husband was working part-time during this, he was around for many of these hallucinations and would confirm that I was in fact just seeing these things and they weren't real.

At the time we were living in a townhouse and from our unit, we could see the front of the townhouse complex. In the front there was a big brick sign containing the street number that would light up at night. We often sat out front to smoke and talk because we didn't smoke in the house. On a few occasions I would see people, children and adults, peeking their heads up from behind the sign. At first I thought it was just people playing a joke but when I mentioned it to my husband, he would look at me and say "uh, Jay, there's nobody there" but I could see them as clear as day. On other occasions I would see people hiding their bodies behind rocks in remote areas of the 401, a large Ontario highway. It felt like they were following us as I would continue to see them for awhile. My husband was driving and I told him this and once again, he would insist that he didn't see these people I was referring to. At the time, I was on the Respiradol tablets but at a fairly low dose (I think 2 or 3 mg). I would also see mice run in front of me while walking to the hospital to see my psychiatrist. Upon discussing this with my psychiatrist, along with the delusions I was having (more on that later), my Respiradol was increased to 5 mg, a suitable and average dose for schizophrenia from what I researched. My visual hallucinations went away.

Prior to my Respiradol being increased, I also experienced delusions like that animals were going to get me and demon(s) were inside my head. One day while in the shower, I had this overwhelming fear that a snake was going to crawl up the drain and wrap around my leg and bite me. In my head, this was so real that I jumped through the shower curtain and ran downstairs. I called my sister, again, a great source of support and talked to her until my husband came home. For about an hour afterwards I felt very scared just to be in my own house out of fear that something was going to get me. I also had overwhelming fears at times while walking through a field on my way to my group sessions/psychiatrist appointments that mice were going to run up and get me, bite me I suppose. For quite a while I was also convinced, and I mentioned this in a previous post, that I had demon(s) inside of me making me think this way and causing my entire illness. My psychiatrist was very understanding of this however one time while in the hospital, I had a real asshole of a psychiatrist temporarily while mine was away at a conference and he discharged me although I didn't feel ready to leave on the basis that he didn't believe me about the demon(s) inside of me. You see, and this is the sad reality of at least the mental health system in some areas, all beds were full at the time and I'm assuming there were more people to come so they had to clear out as many beds as possible. I'm completely convinced to this day that that is why I was discharged early. In fact, the psychiatrist had the nerve to tell me that he spoke with my psychiatrist over the phone and he said it was ok to discharge me. I later confirmed that this was in fact not true and that there was no telephone discussion at all. Then again, this was the same hospital where I was able to get a razor from my roommates table that had been there for days. The policy was that all razors must be returned within a specified period of time after being given to a patient and that under no circumstances was one patient to allow another to use their razor. I don't blame my roommate for this - he likely just forgot to take it back but the nurse that gave it to him should have been on his case when he didn't return it in time.

More on the demon(s) inside me, I once was at my sister's with my son and it was just the two of us. I felt if I cut myself, it might release the demon(s). I obviously wasn't thinking clearly and like the subsequent time I cut myself, I felt sort of an out-of-body experience like I wasn't really there. It's difficult to explain. Anyways, after trying different knives that just weren't cutting well, I ripped apart a razor of my sister's and used that to carve around my wrist the word "WON". At the time I felt that I had "won" against these demon(s) and I was free. This didn't work because I continued to think that I had demon(s) in me.

With respect to my audible hallucinations, they were fairly limited and began to occur while in the transition of going from the tablet form of Respiradol to the injection form. I was taking both but both at low doses as my psychiatrist wanted to remove the tablets altogether and gradually bump up my injection strength. I began at 22.5 mg I believe of the injection, then 37.5 mg and this is when I experienced the audible hallucinations and paranoia. My psychiatrist then prescribed me 2 mg dissolvable tablets as a PRN to help with these new experiences while my 50 mg injection was on order and ready to be administered. With Respiradol Consta, 50 mg is the maximum injectable dose so if that didn't work, I would have to continue to take some dissolvable tablets which really doesn't help with the weight gain (more on that later). Fortunately, it worked. Anyways, on with my audible hallucinations. I only ever experienced intense voices, by intense I mean it were as if somebody were talking in my ear practically, a few times. Once was when I was at my friend's place in Toronto and I was there alone as it was during the day. I was lying on the bed when I heard a very distinct voice coming from the ceiling. It was a woman's voice, very soft, and it said "Hello Jason, come here". The voice was so soothing that it didn't really even frighten me. I was scared a little but soothed in a way at the same time. I called my Mom and asked her what Grandma's voice sounded like and she described it as fairly soft but that was all. The reason I asked is because I was, and still partially am, convinced that it was my deceased grandmother talking to me. Although I don't believe it now, I interpreted this to mean she wanted me to come to heaven - the ironic thing is, I don't believe in heaven or hell. That was it - no further voices of this type at all. The other times I heard voices was that of my son - when he was at school. I was again, in bed (noticing a pattern?), and one of the times I heard my son yelling out "Daddy" from a distance. It wasn't a frightened call out, just a call to get my attention. I also heard my son call out my husband's name in the same manner, just his name, and only to get his attention. Again, both of these times he was in school and only one of the times was my husband home. These experiences again weren't all that scary, likely because it was a familiar voice and although they seemed very real, I was coherent enough to know that they weren't - it simply wasn't possible. To this day, the odd time, I would say once a month or so, I'll be lying in bed and hear an unfamiliar voice but it's usually just a few words but it sounds just like somebody is talking in my ear. It almost always happens when I'm alone. I'm not too worried about this though as I know they're not real now so I just let them pass.

My paranoia is a common circumstance and again, began during the transition from tablet to injection. I would often (typically every day) experience a terrible feeling that I was being watched by cameras that were secretly hidden within the walls of my place. Sometimes I would have ideas in my head as to who was watching, other times not - just random people. I continue to have some paranoia of the same nature but I'm now coherent enough to know that it's all in my head but it's still very difficult to just dismiss. I don't have fear of this anymore, just thoughts that I'm being watched. I no longer believe that there are cameras in my place.

It was about a year ago, after the visual hallucinations but before the audible and paranoia that my diagnosis was switched to schizoaffective rather than bipolar with psychotic symptoms. I think, if I'm not mistaken, the key reason it was changed was because a lot of my psychotic symptoms occurred during a normal mood, not depressed, not hypo-manic.

As my depressive and hypo-manic symptoms and experiences are rather intense, I'll save them for another post. But before I go, I wanted to add in one other symptom which I don't know if it's necessarily related to my illness (I believe it is) and I don't know just how common it is. I've, for as long as I can remember, had feelings of disconnection with the world. Sometimes more intense than others but I continue to feel this way today. I have thoughts sometimes that nothing is real, you, me, anything around us, rather that it's all part of a movie that's being watched by someone/something. I feel that we're all characters in this movie and we're ultimately controlled by this someone/something that is watching. I don't always think this way, just sometimes. But when the thoughts come into my head, they're real and I truly believe them.

Ugh, and that concludes this post - FINALLY!

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