Lived Experience Forum

[Rosie1961]

1. need non-combative behaviour from others. And calm and sleep don’t come easily when, for example, Mental Health those who should be helping you around you either don’t understand mental illness or don’t care about you.

1. I want to say too that in my case it was often the local police who ended up bearing the brunt of my manic need to talk to someone in the middle of the night. I would drive them mad by constantly telephoning, usually just looking for someone to talk to and I want to say that in my experience, they were, the vast majority of the time, incredibly kind and patient.  Obviously if I had ever been deemed a danger to myself or anyone else the situation might have been different (see below) but all I usually wanted to do was talk.  It is from the local police that I learnt an invaluable equation that I would have the likes of Mental Health take fully on board:  kindness calms you down, calm helps you sleep, sleep helps your health.  Kindness from those more fortunate than you is, in my view, a vital key to better mental health.  .

1. I should also just mention here how lucky I have been (or how strong my underlying moral fabric – that’s what I like to think) in that none of my psychotic thoughts or delusions have ever had a content that involved me hurting either myself or anyone else. On the contrary, my delusions usually involve people are looking after me which is very comforting.  (Functional delusions?)

1. Anyway, back to 1999 when I was home with the children, I tried so so hard to hang on to what I knew I had to do. Every morning, waking at the crack of dawn due to the mania, I would write out what I wanted to do that day to keep my children emotionally, physically and financially safe.  I really tried.  I was as mad as a hatter but I never lost sight of wanting to look after the children.

1. On the down side I should mention here that although I hardly drink at all when well, I drink like a fish when sick. I was doing red wine for breakfast but luckily didn’t have a car.

1. My husband got out of bed and came out to Australia and took me to Court. He had plenty of money, I had Legal Aid and, as I say, was as mad as a hatter.  The first time I had ever heard of “bipolar disorder” was in the court appointed psychiatrist’s office when he told me that was what I had.  I asked what it was and he said “manic depression”.  “Huh?” I said.

1. I lost the court case on the strength of the psychiatrist’s evidence that I was, in the short term at least, unable to look after the children. Furthermore, the children wanted to go back to Pakistan.  The eldest, whose wishes counted, initially wanted to stay but after time with her father she changed her mind.  I was out of my head with disbelief that I was losing my children – I just couldn’t contemplate returning to Pakistan – and they left with their father just after Australia Day 2000.  I was alone except for my parents and a few old friends.  I moved into the local pub and, as the stress of the court case subsided, so did my mania.  Slowly but surely I came down and then moved into the depths of depression – I had lost my children – the unthinkable, the impossible, had happened.  Grief and guilt over feeling unable to return to Pakistan overwhelmed me and I didn’t accept that I had the illness, this “bipolar disorder” – to me the depression was obviously caused by me losing my children and stress and overwork accounted for the rest.

1. I did however go to a psych – he told me that from what I told him (and I mentioned none of my weird and wonderful beliefs) that I could well have bipolar and that it was like a rubber band pulled out of shape – that initially it might have been stress that pulled it out of shape but that it might not go back to normal and I could have the disease for life. He gave me a small brochure and essentially wished me luck.  So much for psychiatric care in Australia.

1. I was still in denial about having the disease or at the very least I thought I would never get sick again because there could never be a repeat of what I had been through.

1. The depression lasted most of 2000 but I managed to start looking for jobs at the end of that year and found a job in early 2001.  I was barely functioning but I told the very empathetic people I worked with some of my story and they were very tolerant and very good to me.  Two years later, when I was coping better, I found a very good job and in early 2003 and moved to Canberra.

1. The (by now ex-) husband – he divorced me once he returned to Pakistan with the children - having decided that I could support him now I was so gainfully employed, brought the children out to Canberra. You can only imagine my joy.  I set a house up for them, arranged schools, did everything I possibly could but the illness re-surfaced – for various reasons which I won’t go into here – and within a month of them arriving I was very sick again. 

1. I lost my job and there followed another court case as he was trying to leave with the children but I was trying keep them here. I lost again – this time I was so sick even legal aid wouldn’t act for me and I had to appear for myself.  I was certifiably insane, convinced amongst other things that the outcome of the court case depended upon the water level in various people’s glasses (!) but had no legal representation.  So much for the Australian legal system.

1. I lost the case of course and Woy Woy Police had me committed in late 2003, just after the children left. They kept me in hospital, against my will, for nearly 2 weeks.  I was traumatised – beyond words by the deprivation of rights involved in being committed against my will, but also of course from losing the kids again, by being carted off by the police and then by mental health and by the mental health hospital itself.  It was just after someone had been killed in there and I could see how that could happen.  From the health care “professionals” who invaded my home to take me away, to the heartless nurses, the dismissive doctors and the aggressive fellow patients, it was a nightmare.

1. The popular catchcry was understaffing but in my view they weren’t understaffed just staffed by badly trained people. With one exception, the nursing staff’s empathy for my situation was zero.  No explanation was given of the medication I was forced to take (and when I asked for one I was treated to a technical pharmacological speech that was wholly incomprehensible to me).  I hardly saw a doctor during the whole 2 weeks and got very little attention from the nursing staff – I think because I was regarded as too mad to worry about.  Their favourites were the voluntary admissions – we of the involuntary admission had no insight into our condition (which was true) and therefore did not deserve attention (which should not, in my view, follow).

1. No one wanted to talk to me about the second loss of my children. No one wanted to talk to me about anything.  If I protested they gave me more meds but when I couldn’t sleep through the night they wouldn’t give me anything extra.  Sleep is important when you are mentally ill – even I knew that – and I’d like to know which insane person was responsible for that and some of their other policies. 

1. Anyway, they eventually let me go and I clearly remember, as the mania was subsiding and depression was just starting to nibble at my brain in early 2004, thinking to myself “Uh oh, maybe I really do have this disease”. It became my dirty little secret.  I admitted it to myself but not to anyone else.

1. But then I got sick again in late 2005. I was working in a legal office in a not particularly stressful job and Spring came and I just got sick – for no good reason just bang – I was sick again.  The elastic band was well and truly out of shape and I finally accepted that this bipolar business was something I was going to have to live with.

1. So I went on medication (*) but it turned me into a vegetable and I spent nearly 2 years so affected by it that I couldn’t attempt to work. Finally I stopped the meds and managed to find a job in a cafe.  During this time, my eldest daughter came to Australia to visit me which was absolutely marvellous but I won’t go into that here.  .

1. I’m not sure exactly when but at some point I started taking * which I tolerated much better than the *. That was the beginning of me managing my illness but I had trouble remembering to take the * regularly and I got sick again in 2008/2009 and then again in 2012.  Thanks to the tolerance of “cafe world”, and the support I had around me, I managed to keep my job through my illness.  The cafe however came to an end in early 2013.

1. In 2011 my second daughter came out here to live which was wonderful - until I got sick in 2012 (soon after my third daughter arrived, also to live) and it was very hard on them both to see me ill. I won’t go into it here.

1. I remained mildly hypermanic throughout 2013 and then had another bad attack in late 2013. This meant that I had been sick, more or less, for nearly 3 years straight.  I ended up all but homeless and with nothing – the cafe gone, the children estranged all over again, etc. etc.  This being despite the fact that the attacks have not been as bad as the early ones because on top of the * I take * as required and this controls the paranoia and psychosis and it doesn’t turn me into a vegetable when I’m manic.  It just brings me down.

1. I should just mention here that (again I hope reflecting on my moral fabric) I usually have one or more primary projects every time I get sick. Keeping my kids was obviously it in 1999 and 2003 but my project last time I was sick was to have Reconciliation Day declared a public holiday.  I ran a grass roots campaign involving, in addition to me making 100s of phone calls, wherever I went talking people into calling Tony Abbott’s office to ask for the holiday in honour of our indigenous population.   Quite a few did – as the idea is a good one even if it was being pushed by a deranged person.  I didn’t succeed but it wasn’t for want of trying.

1. My other project was to get some financial help for myself as I was in a terrible monetary soup. I wanted Centrelink to be granted the power to make emergency payments on a discretionary basis to needy people and I wanted them to give me one.  I had no success at all with this and protested long and loud to Mr Abbott’s office about it.  I even threatened to go on a hunger strike and tried to get CNN interested - “Woman Starves to Death on Woy Woy Waterfront” was to be the headline. 

1. I was in fact not going hungry because I was eating at the local charity soup kitchen but Mr Abbott sent the Federal Police around to my mother’s house – not to see if I was alright but to find out if I was a threat to National Security.  Oh dear.  I don’t vote for the man but I had never contemplated doing anything worse than harassing his office.

1. So here I am now, 2017 (21 years since I first got sick in Pakistan) and arguably due for an episode any minute as its now 3 years since I last headed for mania. But it’s different this time (I hope) because I have made it my mission to avoid another attack.  Or, if one is inevitable, to minimise the damage it does.

1. I certainly hope I can do one or the other.  If you add them up, I have lost so many lives.  I loved my life with my children and my pre-school in Pakistan (and I had been happy before that in the Gulf – we only moved to Pakistan because my husband lost his job), I loved my job in Canberra, I was perfectly happy with my legal job, I loved the cafe etc. etc. – all lost.  I have suffered from intractable depression for the last 3 years and one of the things I wonder is whether it might be the cumulative weight of the losses finally getting to me.

1. As indicated above, I’ve never been that good at taking medication regularly so I have arranged to have a monthly shot of my main drug, *. There are therefore more drugs in my system this time than ever before when I have been approaching a time when I was “due” for an episode.  Also, I am actively seeking whatever advice I can find on how to avoid another attack.

1. One thing that should help me know I am getting sick is my sleep pattern. If I start waking up early, the time has come for more * (which I now tolerate better than I used to).  That’s a long term warning sign and there is a short term one too - I clearly recall on the last 2 occasions I have become sick that I have a sensation like engine coolant running through my head and I know this is a sign I am getting sick.  Unfortunately, by the next day, I am sick and I no longer think there is anything wrong with me.

1. This being said, when I was sick in 2012 a workmate was aware of my illness and would call me by my my middle name when he thought I needed more medication. I trusted him so this worked.

1. That’s about all. I remain well and am living in hope that somehow, miraculously, I will somehow just never get sick again.  There is just one more thing I wish to say and that is this:  mental illness is all about shame and regret and sometimes I think I will just die of it.  But I haven’t died, I have survived and I think I can be proud of this.  Despite the awful damage it has caused to so many lives I can be proud to have survived it and of having become a much nicer person because of it.   And I hope that my dear, dear parents and my three beloved children, all of whom have suffered so much because of my disorder, can share this pride with me.

[Kurra]

Dear @Rosie1961
This is a very brief response as I need to get some mire sleep before I have to get up in an hour and a half to get to work on time.

Your story and mine are similar in essence but not in the detail. I am now completely stable and believe I may be able to give you some pointers to help you ward off future episodes. In many ways you are already closer to achieving this than you might realise.

The kindness of the police is amazing. They have been there for me when no one else cared enough to be bothered.

I'll say Goodnight now otherwise my 12 hoir shift today will be more challenging than necessary.

Hugzzz 💕🎶💕

[Rosie1961]

Thank you so much for your kind words.  I look forward to hearing from you again.

[Kurra]

Strange isn't it @Rosie1961. I've had 3 hours sleep tonight after none on Monday night. I'm now perilously close to the point where it will be wiser to get up rather than taking the risk of blissfully sleeping through my alarm.

You've already discovered how critical sleep can be for the likes of us. Less than one hour's sleep for 3 nights in a row is danger zone for me.

I suspect I'm 11 years older than you if your user name is anything to go by. Please do guard your sleep. It helps heaps.

Now I need to make a decision. Do I get up now and be at work on time ir ....... Methinks I'll be getting up very shortly.

Take care. 💕🎶💕

[Rosie1961]

I hope you get some sleep.  All the best.  Feel free to write to me if you can't sleep though.

[Kurra]

I'm not too fussed about getting back to sleep now as I've already had 3 hours sleep tonight.

A nice strong coffee, scrambled eggs on toast, a hot shower and reading my book for almost an hour is sounding enticing.

[Rosie1961]

What are you reading?  I'm watching The Handmaids Tale on SBS on demand its terrific.  I read the book years ago.  

[Kurra]

I recently discovered the Reacher series by Lee Child. Thriller type reading but he manages to maintain the tension from the first page to the last. My job is very intense work - I can't mention the type of job I have - so reading is a wonderful source of escape to another world.

Whi wrote the Handmaid's Tale?

[Rosie1961]

Yes, I;ve always loved reading and go thru stages with what I like  I think Ive been through a Lee Child stage his name certainly rings a bell.

[Kurra]

Books are wonderful friends.