Cindy

So they just were refusing to engage with the lived reality of your physical symptoms?

Yeah, yeah. And they tried me on all sorts of medicines, all different doctors, like cortisone which is very drastic because it wrecks your bones. I was on some medication I wasn't allowed to go in the sun with and another one I wasn't allowed to drink alcohol; ones that caused drowsiness. I don't know what they're called because tablets and that just mix me up but pretty shocking. And now I've ended up on tablets for the schizophrenia and all that instead.

So it's a very bizarre for me because I don't believe the symptoms ever come to me in schizophrenia. I don't know where that came from and then the delusional thing was because when I was getting help for my hands the doctor - the psych didn't believe me either. So he just said 'You're delusional" and then it got put on my record forever. So it's very hard to get help when you've got that on your record as well yeah.

You're labelled that and then the doctors don't believe you when you're really trying to tell the truth and they should look at your record and see you don't come in often for anything so you're actually telling the truth. And because I went in so often to so many doctors for these you'd think that someone would have believed me. Only the local doctor, a specialist. He's the only one that sort of helped me as much as he could but he gave up in the end. I cried when that happened.

And how did he try to help you?

He tried to give me UV treatment which is very harsh as well and that helped for a little while. Lots of things have helped for a little while but I've even been desperate enough to try Deep Heat and that on open wounds - you can imagine. I tried to kill it because I think it's a parasite.

And you still experience pain from it?

Yeah, I'm sort of used to this pain but it comes and goes as well, so you can never really get used to it but it's not as bad as the first say ten years. So I don't know what's going on with it but it just keeps flaring up and I cover it with bandages and stuff so that it sort of heals it a bit better and keeps it kind of moister. It needs to be because it doesn't get pus and you've got to get it out or else it keeps growing or it turns into a hard shell ready to rear up maybe one day. I don't know. Scary.

And when I tried to refuse to have this horrible medication they had me on they slapped a community order on me. So legally I had to take this medicine or I could go to jail or whatever the threat was. So I didn't have a choice in what was happening to me at that time.

And how did that make you feel?

Oh that was awful, because I didn't want to even be on medication. I was still in denial that I even needed it - still am. But because, you know, I'm trying to do what they need me to do so if I need help ever they'll know I take them seriously and some people who should be on medicine deny it but they actually should so maybe I'm one of those people too. I don't know, but I don't think I have schizophrenia anyway and I don't think I'm delusional but someone professional thinks I am.

And so back then when they put you on the Community Treatment Order, and you say the drugs were terrible, what were the side effects?

Side effects, well one of them I really remember hard because it was making me rock from side to side when I was standing up, dribbling. I was just a physical mess. I looked awful. I couldn't go out.

And was this the one where they were...

Yeah they were injecting me yeah. Risperidone, horrible drug, yeah it's very harsh.

I've been forced on so many things and it's all trial and error too with these antipsychotics and all these different types of meds that they put you on when you've got mental illness. And the other thing was when I had depression I ended up getting on a good medicine. It took a while but I tried some and the symptoms were mainly putting on weight which is awful. Can't get out of the couch and you've got to get a new wardrobe.

And how did you get on to one that was good? Were you in dialogue with a GP saying, "This isn't working, can I try something else?"

Yeah and a GP actually tried me on one called EFFEXOR (venlafaxine) and everybody else that's tried that said that's probably the better one because you don't get all the symptoms as bad. It still gives you some, but they're nowhere near as bad as the others and don't ask me about the others. The only one I can remember is VALIUM (diazepam). Was no good for me at all, awful.

So it sounds like you've been kind of on an ongoing rotation of different drugs with different effects?

Yeah but I've been on these ones for a few years now so they're going well.

Well it makes me empowered again because I've got some responsibility. I find the office work to be rather hard though because concentrating and you've really got to concentrate especially doing your timesheet. Oh, so many times I got it wrong because they've changed the system on how you do it and no one told me. So I was filling them in wrong and getting them in late but still somehow being paid on time.

But yeah, no the job, it keeps me very busy because I've got to work split shifts. Like this morning, I finished at nine and tonight I'm starting at eight at night and I'm working right through until the morning, 9:30. And then I've got another shift after that so I'm actually working until 12:30 straight through but it's an eight hour sleep, I'm not active which is good for me.

I can't do active. I told them, and they said, 'Yes we want you well so we understand' and they're really good like that see, bosses and everything. They're really nice so I'm lucky, very lucky. I count my lucky stars. I don't think I could have been this well without it, which is weird because like I said other jobs have made me sick before especially their attitude towards you. So I'm really lucky now.

They had me taking people out for movies at first, running a community kitchen which I was already doing anyway and taking people out to dinner and I was getting paid to do this. So they sort of got me into it a little bit at a time and built me up to being able to do what I do now. So the company really know how to treat people with mental illness, I think. They know how to treat people in general but you know they're very understanding towards what we need as people to do a good job and be productive.

I think when I went in the second time I was pretty frustrated as well but it's kind of having a break from the world sometimes if you are that way because you're reacting badly to everything and I was homeless around then. It was awful because you've got to get along with people and sort of couch surf and it's really hard because you feel like a beggar.

I had to leave work really because of it. It was causing too many problems for my job. And going to someone's house and sharing and then them not liking it and kicking you out on the street again. And you having to find more accommodation and you've got kids, you know what I mean, dragging around my daughter anyway. I did end up with depression. I couldn't concentrate. I had like bouts of times when I couldn't cope mentally with the situation that was happening more because it was a downward spiral from the depression too, you know. I kept getting worse and worse and the spirals were bigger and bigger. And with people maybe they reacted badly to the way I was being. But I thought I was doing the right thing buying shopping, keeping out of the way, making my stuff really neat because I was in their lounge room, packing up my bed every day so that they could use the couch because I was sleeping on the couch cushions. It was ridiculous. They stole stuff off me too, because I had to leave with what I could take and they kept the rest, even a photo of me and my daughter.

But yeah I was just not being supported by the system. I had nobody out there that I felt supported by and I was homeless and alone in the end. So I even had trouble trying to find people to stay on their couch, especially dragging around my daughter, it was two people. I ended up here so that was alright. I got something that I could sort of be permanent with because I know the landlord personally. He's a friend of mine since I was 16 so I've always been friends with him and I help him pay his mortgage because he's not really in a bad position.

If you don't know the system, that's the biggest problem. You don't know what to ask for or what is the correct treatment. So I went into it very blindly, so maybe if people research more and then go ahead. Sometimes you're not in the right frame of mind to do that though. You could even get someone else to help you. I think because then you can get more information about each service and what choices there are out there because that's the hardest part, knowing what you can choose from.