Enter 2011...happy new year!

So why am I nutting this out at 10.21pm on New Years Eve and not at a gathering with friends? I got invited to a good friend's house, but turned it down. Just felt like being alone, watching my box set of My Name is Earl DVD's, ripping into the Pepsi Max and fags, surfing the net. It's just another night for me, New Year's Eve. I started feeling this way about it around 5 or 6 years ago, the same time I stopped panicking about having no social engagements lined up for Friday and Saturday nights. The same time I started feeling content with being on my own and not lonely. My friend Liz said to me it's a sign of maturity. I hope that's it, and not a sign of losing touch with vitality and feeling alive.

I was watching a favourite DVD the other day: "Dracula" (the one made in the early 90's with Gary Oldman, Winona Ryder and Keanu Reeves; the latter 2 doing awful wooden performances and horrible english accents, but otherwise enjoyable). There's a scene in it where Winona comments about how she felt "so alive" when in the company of her Prince (Oldman as Dracula). It brought me back to how I felt when first watching this film in the cinema aged around 23: I felt a strong chord strike at me during the film about the wonder of sensations which I have rarely felt since age 25 when I was first diagnosed and thus medicated. I guess I'm referring to the elation that I used to feel with my unmedicated moods swirling about unfettered and how intoxicating this could feel. Looking back on these feelings, I really understand how some people with mood disorders remain non-compliant with taking medication: when you're dosed up with a mood stabiliser like Lithium or Epilim, what was once a kaliedoscopic world can suddenly become very grey and drab.

When I say grey, it's not automatically like a depression (which I describe as feeling like you view life through shit-covered filters while trying to wade out of emotional quicksand). It's just that...there's no Spark, no mojo. I saw some truly amazing ocurrances when going through undulating moods in my early 20's....I wish I could remember them all. I just had more charisma and was able to enter into conversations with strangers more confidently and fluently. An example being: I was at a friend's 21st and was going to leave early as I had a headache and was getting a bit peeved by some of her obnoxious Uni friends (they'd done a very "in-joke" speech which none of us old friends were impressed by). I talked briefly to one of these friends who invited me to a drinkies lunch they had mined up for the next day to keep the party humming at a trendy pub. I made an excuse not to go, saying I had a headache: the girl eyeballed me "Forget the headache" she spat "we'll see you at the pub tomorrow". I glared at her and said "see you there". I did turn up at the pub the next day; nobody else showed, they were all hungover. I ended up chatting to a lovely afro-american guy for a couple of hours. We went out to dinner a week later, but thereafter didn't see each other again.

My point is: I had the chutzpah to dress up, show up, not be daunted and feel ok talking to a stranger in a bar alone. I wouldn't probably do that sort of thing a few years later when medicated. Being diagnosed and medicated sort of 'extracted' my congeniality out of me. Sure, I can express things ok in a written sense, but to verbalise it is something totally different.

I'm aware that this written/verbal thing is not the exclusive domain of being medicated, and there surely must be people who do take meds who are certainly adept at conversation and many other social skills. I however, am not. I used to be.

Anyway....I've strayed from my initial line of thought: feeling 'alive'. As I type this I can hear the distant thudding bass of a party at a neighbour's house, along with erratic shrieks and shouts of those well on the way to imbibing their way into a jolly new year. I remember feeling pretty alive doing this sort of thing too in the past. These days my 'alive' moments tend to be fleeting, like the rush I get when I sit down and relax with a glass of water and a smoke having just walked for an hour. The blood is rushing around my body, my feet tingle and I feel really awake. Or the alive I get when I mix Clary Sage essential oil with massage oil and rub it into my neck and shoulders. Or if I'm watching a close and exciting football match which goes right to the wire.

It doesn't match the kaliedoscope world of unmedicated mood fluctuations, not by a longshot. I hope one day I can become less medicated, but until then I have to be content with the perceptions I have and also those I create for myself and for others.

Have a happy 2011. I certainly hope to.

Description of the onset of psychosis

Perhaps I'm wrong, but I get a feeling that many in the community fear being around people with schizophrenia or schizoaffective disorder due to a perception that such people can 'turn' psychotic in an instant and are inherently violent when in a psychosis. My experience of psychosis has been very different to this: I only develop full-blown psychosis after having a build-up of mania, which takes anything from several weeks to several days to gestate. 

 It's pretty easy to spot me (or most people, if you know them) being manic: excessively chatty, irritable, spending money I can't afford, excess energy, delusions of brilliance - pretty typical symptoms. It's only after I've been manic (fully-blown) for a few days that the paranoia creeps in. I begin by reading significance into things that have no significance; a classic example being to hold the notion that the songs on the radio are 'telling' me something, or that the television is conveying a special message for me, usually sinister. I then start being convinced of conspiracy theories, especially that people close to me have evil intentions. Finally I get external auditory hallucinations (voices) which are terrifying, nasty and mocking. By the final stages I am well onto needing to be in hospital asap. I cope with becoming unwell pretty effectively these days; because I live alone I don't infringe on other peoples wellbeing. I am aware that "it's happening" even though my grip on sanity is slipping. 

 When I start to feel like my mania is escalating out of control I ring my regional Psych triage; they have me on their files having rung them in the past. They instruct me to make an emergency appointment with my Psychiatrist, which I do at the earliest opportunity. If there is a wait to see my Psych I keep in frequent touch with the Psych triage number (which I'm sure drives them batty). If need be they fax my Psych about how I'm presenting over the phone, this can speed up seeing my Psych and if needed, getting a bed in hospital (private - as a voluntary patient). If I didn't have private heath insurance I would have to solely rely on the Psych Triage service and seeing my Doctor until (a) I got better along with adjusted meds my doctor would prescribe me or (b) my condition worsened and I totally lost the plot and needed to go to Public Psych hospital as an involuntary patient, although not all people who go in the public system are involuntary. 

 One main difference that strikes me between public and private psych hospitals is that in the public system you get more violence; both verbal and physical. In the private one you have to sign a contract upon admission saying you won't physically or verbally assault anyone during your stay. I guess what I'm trying to say is that for me psychosis is a gradual culmination of unwellness; I'm not nor would I ever be likely to just "snap" into being psychotic. There is a lead up to getting unwell, as described above. I wish people in the community would bother to learn a bit more about it, not just to assume things about psychosis from what they read/hear in the media (eg: man shot by police after wielding samuri swords and lunging at them; he was known to have schizophrenia). 

 The other thing I wish people understood is how terrifying it is to be in a psychosis; it's like a sinister nightmare, with distortions of reality lasting for days or even weeks until the antipsychotic medication has a chance to work. Then you tend to get really tired (heavy dose of meds) and put on weight (most antipsychotics really increase your appetite). Several weeks afterwards, there's post-psychotic depression, a really black place to go. Sucks, hey? 

 I wish someone with political clout had the experience of psychosis (not that I'd really want to wish it upon somebody), so that the politicians could do more than pay lip service to improving mental health care. So many people with serious psych illnesses are disenfranchised, or they slip through the cracks of the public system, never receiving adequate care and assistance. I'm fortunate; when I got really sick in 2003 I did get appropriate care for a change; the rebuilding has be slow but steady. However I know I am in a minority. 

 Housing is a major issue; I couldn't have anywhere near my current peace of mind were I still in transitional housing. Other people aren't so lucky. So.....psychosis.....yes I've strayed from the topic. If you're in the company of someone with schizoaffective disorder it's highly unlikely they would become verbally or physically agressive unless they were unwell, and that would, in my opinion be pretty obvious. I guess the point I'm making is that people don't just 'snap'; I never have. It's a build up of behaviours as described. I guess the perception that all people who have been psychotic/have the potential to be psychotic are dangerous is a sad reality. A perception based on misrepresentation and ignorance.

Why would I love being schizoaffective 2010?

Why indeed. Life has certainly taken a different trajectory to the one it was heading in, when I was a teenager, when I had my first symptoms of being unwell. I don't know the exact age my magic genie popped out it's weird and wonderful psych symptoms (was flat aged 10 soon after my parents divorce; was flat again aged 14; was majorly flat aged 18; had a minor psychosis aged 20; mood swings thereafter culminating in 1st major psychotic episode aged 25). 

 One thing I know is that when I eventually thought I had my career path sorted (aged 22; market research) and despite my undiagnosed symptoms occuring I got my business degree (25 again). I was all lined up to start my graduate traineeship with a big market research company in the city when I had my 1st psychotic episode. It lasted months. I tried to start at the company (having lied and said I had glandular faver); I lasted a few months then got the sack. Had it not been the case that I had become sick I might have had a successful career in market research. Or not. Life can have funny turns for people who don't become unwell, psychiatric or any other illness. 

 There was never a guarantee that I would be a corporate success. But there would have been a reasonable chance. So where did I go from there, the breakdown and sacking, aged 25? Too long and personal a story to do justice to in a blog. To summarise; - 1996-1999 Worked in part time blue collar jobs and felt sad, angry and lost; - Felt bored and lonely frequently along with a disposition towards depression; - 1999-2000 Got lost in drinking daily to escape my less-than-happy existence.

2000-2002 Did the rehab merry-go-round circuit combined with emergency/relief accomodation due to being unemployed and unemployable; - Had 2nd major psychosis 2002-3 (much worse than before); involuntary patient then homeless; in boarding houses; - 2003-2007 Got back on my feet via effective case management; secured a community housing bedsit; started part time work again; stayed off alcohol.

Moved to stable accomodation; retained part time employment; started being able to pay bils properly and to save; - 2009 Had 3rd psychosis; private hospital, new psychiatrist; was able to retain work; had some medication trial and error; maintained sobriety; - 2010 Work going well; fell off the water wagon but didn't go off the rails; stabilising on medication; solidifying friendships. 

I give this summary to emphasise how different a turn my life took had I not become unwell. I've seen and done things a lot of people only wonder about: a lot of them not good things. I've learned to live on a budget and to appreciate money. As I enter my 40's I'm learning that physical health is just as valuable as mental health and that it can't be taken for granted. Ok ok....so I'm sounding sanctimonious and all that. It's just that....how can I make the title of my blog ring true??? Maybe the trick is to know that often, it's said tongue in cheek. ;)

Horror movies and psychosis

Lately I've been teasing my mind by watching DVD's which have mostly been horror movies; I have found a bargain bin at a local store which has them at $6.95 (not all horror, but I have picked them out). I've noticed that some movies from the 70's which garnered an "R" rating are fairly tame by today's more violent and gore-prone films, and would probably only get an "MA" rating today. Films like the Omen trilogy, The invasion of the body snatchers, Carrie and so on. In contrast I've watched a few post 2000 horror ones, like the remake of The amytiville horror, and boy are they scary! I can only watch them during daylight, and even then sometimes with the mute button on. Half the buildup happens through the use of sound, that's what I've found.

I've questioned myself about the wisdom of watching spooky films when prone to having paranoia at times; it's like I'm adding to my memory bank of frightening things which could come back to haunt me when psychotic. It's really only happened in a full-on way once, back in 2003 when I had to go to hospital. I was having florid dreams of Hannibal Lecter at the time; total nightmaes where I would sit bolt upright in bed and be sweating. I had watched the movie Red Dragon and the Hannibal character was torturing me in my dreams. I ended up as an involuntary patient for 6 weeks in hospital, having attacked my mother twice and the police arriving. I don't remember attacking my mum, my mind has blocked it out.

So the Hannibal series is one I choose not to revisit, no matter how well I feel. In contrast the spooky movies I watch these days tend to be a bit hammy and formulaic; after a while you tend to anticipate storylines.

The other thing I'm finding I'm loving are sci-fi movies; you know the typical thing where somehow from outer space a being comes to earth then gets inside a human and acts as a parasite, becoming destructive and seeking to colonise the earth. One of the best ones like this I've found was The Faculty, with an honourable mention to the 80's classic The Hidden. I'm kind of hoping the Alien quadrilogy will come up cheaply at the DVD store; I love the whole Ripley character, it's great for women.

So today, with rain softly falling outside in a typical winter's afternoon, I will curl up on the couch with the gas heater on and a horror movie going and have an enjoyable spooking. Strange maybe, but definitely fun.

Tiredness and paranoia

I woke early yesterday; earlier than normal. I got up at 7am, had breakfast and listened to the radio. At around 9am I started to feel fatigued, so I went back to bed and slept for an hour. I did my usual morning routine of watching a morning TV chat show and getting ready for work. I left for work at 12.45, getting there as usual at 1pm.

The shift was a litle more frantic than usual; we'd had a power blackout the previous day which meant no computers so we had done other tasks. However that meant yesterday (ironically Friday 13th) we had the work building up like a snowball. I was looking after faxes and emails of which there were hundreds. Normally I batch them up by halfway through the shift then work on registering them into the system, but come 4.30pm I was still sorting and batching, there were so many. It was around this time that my tiredness was at its peak, and a bizarre thing happened.

One of my co-workers got a dressing down for something from our co-ordinator. Shortly after another co-worker began whispering something to another worker, and they got the giggles. Soon it was just me and the other three workers on the floor; I was fixed on my terminal, but they were bunched up the back sniggering. I was convinced they said snatches of jokes aimed at me; at one stage I thought I heard them say "faxes and emails". 10 to 5 came, my knock-off time, and as I sorted my papers they were still giggling and I had to fight to stop myself from saying "I know what you're doing" or "You think you're so funny don't you?". I left hurriedly, saying a muted goodbye.

As I left and walked to my car, a snippet from the horror movie Carrie came into my head: "They're all gonna laugh at you!!!" (as said by Carrie's fervently religious mother before Carrie goes to the prom). I looked at the youths at the skate park a couple of hundred mentres away, and thought they were calling and crowing about me.
I got into my my car and focused on driving safely home, despite feelings of wanting to get alcohol and wipe out the paranoia I was feeling. Once home I quickly took my nightly dose of Zyprexa and sat down with a non-alcoholic drink, then rang a friend and then, only then, did the feeling and thoughts subside.

I learned a lesson; when I am overtired I can interpret things in a paranoid way. There was every chance that the gigglefest from my co-workers was aimed at the co-ordinator who is not well respected. Even if it was aimed at me, my friend was quick to point out "they're a bunch of dickheads", and not to worry myself over them. Today, the morning after I am not worried anymore. Just glad my schizoaffective has raised it's ugly head then gone again; a reminder to look after my sleep a bit better.

When a website becomes a drug company's Get Out of Jail card

I discovered a new health website on the weekend; mindbodylife.com.au. It gives a fairly comprehensive view for mental health patients as how to improve their living habits to being healthier. I also discovered that it is sponsored by pharmeceautical company Lily, which gave me food for thought. Why would a drug company give two hoots about caring about the physical health of mental health patients? Then I considered the possible legal aspects and/or cases of people on psych drugs which cause weight gain and any possible court cases which may have been lodged by people who may have developed life-threatening illness like heart disease and type 2 diabetes.

So is Lily covering their arse by creating a caring and sharing website for people like me with schizoaffective or some other illness? I get a fairly constant message from my doctor about needing to lose weight and do more exercise; even when I tell him I walk for 50mins 4 times a week he counters with: It should be an hour every day. Pretty tough love. I see a dietician and haven't had much success; I crave fatty carbs, which I've read can be caused by Zyprexa, which simultaneously then makes it difficult (the zyprexa) for my body to process the said carbs and burn them off. It's tough to lose weight on some drugs, really tough, as many people who take them could attest to.

I wonder how many legal cases or precedents have been set by anyone rich enough to take the drug companies on. You hear about other medications like Vioxx and how that was withdrawn. I just wonder whether its because most mentally ill people tend to be disenfranchised that they can be ordered to take meds which can endanger their physical health to the extent that they develop physical conditions which can be life-threatening. It sucks. I know, I know, the alternative in not taking medication can result in hospitalisation. I just look at my cousin; she's a fair bit older than me, she's 60 and has schizoaffective like me. She was on Lithium for donkey's years and now has to go on dialysis regularly for her kidneys which are shot. It brings it a bit closer to home for me, but she's pretty stoic and cops it on the chin.

I just hope the damned drug giants can refine the crap we currently ingest to the extent that side-effects are a thing of the past. To be honest though, I can't see it happening in my lifetime; I'm 40 and am grateful enough to have tried many different new types of medication in the hope of getting the 'right' balance. So far type 2 diabetes and heart disease haven't raised their head yet, but they are on the cards unless I can lose weight and give up smoking. I'm sure there are some people out there who have managed far better than I have done with far more challenging illnesses; I don't mean to whine. Sometimes medication is frustrating, that's all.

Tattslotto thinking......

I am trying to wrestle away from Tattslotto thinking. It's a state of mind when I buy more lotto tickets per week than I can afford (around $70 worth) in the vain bid that I will win the top prize of however many million dollars and will never have to work and be able to spend on things like a holiday (my last holiday was a package trip to Tasmania in 1996. It cost me around $700.) I'd also love to help out family and friends financilly too. And to donate to worthy causes, like housing for the homeless and food vouchers and essential stuff.

I know what it's like to be homeless; I've been there. Not literally out on the street, but living in a boarding house littered with ex-crims and junkies and alcoholics. I've shared emergency accomodation with prostitues and con artists where you had a lock on your bedroom out of neccessity. I've rationed my cigarettes to 10 per day due to the high cost of boarding houses, and saved up for cheap and filling food, like peanuts and bananas because the meals were stingy.

I'm lucky I've found secure affordable housing now, but I think to a degree I've earned it.

Anyway, back to the lotto. I know this is dangerous territory for me because it's a form of escapism which can lead to me wanting to have a booze binge. It'd probably be a one-nighter, but doesn't assist me long term. What I need is relief from healthier things, like walking daily (this hasn't happened for weeks, the weather's turned cold), socialising (ditto), looking after my health and diet, pursuing leisure activities. Basically living life and enjoying it. Accepting reality, not living for some unlikely fantasy (like winning the lotto).

I also want to address something I didn't explain fully last post: the value of working. When I drive home from work I have a modicum of self-esteem in knowing I did an honest day's work. I was useful. I was needed. I belonged somewhere. That's how work can make me feel.