Long time, no think.

Well, I had seven weeks off work to try and sort my stress levels out. I hate the term stressed. I think because it is so widely used now and I also feel I don't qualify to be stressed the term just grates on me. I returned to work about 6 weeks ago, although it obviously feels like I was never away. I asked to cut my hours by 5 which was agreed and still hasn't happened even though it was one of my terms for returning to work, In fairness I haven't really pushed the issue, one because the ward manager is a bit scary and two because I'm aware of how short staffed we are! I will eventually. Dexter is doing OK. I've been waiting in the wings really, preparing for something that hasn't come yet. He stopped taking his antipsychotic about 2 months ago. He didn't reduce them and wasn't advised to stop taking them by his psychiatrist (we've not seen her since last year as she's been off and the hospital have cancelled the appointment 4 times, so not had an opportunity to see her yet). This was Dexter's decision, he felt he wasn't benefiting from taking the medication and wanted to see if not taking it would be any different. He waited until he'd settled after the bad episodes he was having and just stopped taking them (against my advice of reducing them slowly, what do I know though, I'm just a nurse). He had a period of really bad nightmares initially after stopping the medication but in all honesty there has been no significant if any difference to what he has always been experiencing whilst on the medication. The noise is always there as it was before, he still has visual hallucinations and still continues to be spaced out on occasion. His sleep pattern is as it was, which is sleep one night, not the next. In terms of being completely delusional, this hasn't happened since coming off the medication......yet. I'm aware that this may happen again. His anxiety levels are the same (quite high) but he seems to be pushing the boundaries a little more with attempting to go out further a field (not just the shops at the end of the road) and he's had some great news that he may be entitled to a grant to start studying. If anything the main change I have seen is that he is doing more. This could be that the medication had a sedative effect and now he's not taking it he feels he can do more. It's still early days really but things feel a little more predictable. He continues to take his antidepressant and I think he will as when he misses one dose of this he gets a severe migraine and can't function at all for that day and his thoughts become very jumbled. I think it has probably been the antidepressant doing all the work all this time.

He continues to wait for therapy, the referral was sent in March. He is a little apprehensive about this and I understand why. It's a difficult one really. This feels like one of the only services available left that can help him. And in all honesty I don't really have any faith that it will (it feels like misguided faith anyway). I want it to and hope for it to but I just think Dexter will not respond to it. His main personality trait is thinking, he's thought about everything, analysed it, thought about it again, come up with his own conclusions and always wins an argument. If a question is presented to Dexter he responds instantly with an articulate well thought out question provoking response. He can also be extremely light hearted and like a child sometimes like all men. But when on form I feel he'll stump whoever is trying to give the therapy. We've talked about it a few times and he wants it to help him, like I say, It feels like the only service left that offers help without him having to try and work out how to do everything for himself as he has done for 2 years now. He wants advice and help to deal with his own mind. He is completely open minded about it now, so I just hope the therapist is with Dexter.

Well after not writing for a long time that will do for now.

My Musings for this week

OK, this week has been bizarre. A little bit of a roller coaster ride that has posed many questions along the way, which I've explored to find the answer for. This feeling has stemmed from a lack of routine and structure. But has been worth taking the time out for.

To explain............

Again, Dexter and I have not had much sleep this week. I'm not really sure exactly why, other than just not being tired. This could be accounted for by many people in many different ways. But to me, it appears it was needed. During our time awake we've searched the net, we've eaten, I went to the shops at 9.45pm to get milk and bread, we've smoked, fed the cats and done nothing.

The net time was interesting. I registered for second life, explored a few hours on that. I stumbled web pages and I looked at my usual check-in sites (gmail, bank, rss feeds, facebook). Second life, that was interesting as it's a world I haven't, until now, looked at and used. It needs the next technology to come along before it can fulfil it's potential, I think. But it is an interesting concept that raises many questions about future social interaction and technology, which is a huge part of our lives now and affects our daily living. My usual suspects of rss feeds also shone a light into the virtual world of real life issues (a contradiction in itself if you take the definitive meaning of that statement). Exploring the two worlds for answers to your daily questions can get messy for the brain, especially with sleep deprivation.

The other side to the exploration was, we weren't asleep, why.......? Then the guilt that I should be making sure Dexter and I have a routine, that the house is clean, the washing is done, the bills are being paid, that we need to go shopping to get some food in. But they're thoughts and feelings that I would get if I had paid 100% attention to those aspects of daily life. So stuff it, not being completely in touch with the reality we usually conform to needs to happen sometimes, even when you have responsibilities.

There is another aspect to the days just gone bye, communication with friends and family whilst you're out of the routine. It's generally avoided by me. But I have had some good communications with people this week. I've been invited out to two separate events, my brothers girlfriend has checked in on me with a text, explaining my brothers lack of communication (he's shy and doesn't want to intrude, he's also got his own worries & concerns in life) which I know. And I had a couple of hours of trying to find out some information regarding high security institutions, for my benefit as knowledge is always good to have about these things and to hopefully find a way to help someone else. To my surprise it worked, I found some information passed it on and It felt great to find out I'd been able to provide support.

Support at the moment is something I've been trying to give to Dexter. I offer emotional support but then I'm not experiencing what he is, so it's difficult for it to have much meaning or relevance for him. So I try and look for practical support. The problem is I can't get rid of the voices, the nightmares and the anxiety that comes with this, I can't force him to sleep or to eat (thankfully his appetite is good) and I can't really find answers as to what I can do to help. This is frustrating and well, you feel extremely helpless. I have been looking into nutrition and ways I can help to balance his intake of whatever he needs, again, this is quite the task. What to believe? Is omega 3 and 6 the way to go? more fat less carbs? Vitamin D3? And what actually does Dexter need physically, are his levels too high or too low? I'm continuing my research in this area and will find some answers but in the mean time Dexter continues to battle with the voices and isn't able to sleep and feels pretty crap and I can't do anything other than reassure and try to provide some balance.

My week

4 days of not getting to sleep until 6am. Failed potato cakes. And an evening out with colleagues.

And it's mothers day tomorrow, this will be interesting. There's always the dilemma of which mother to go and visit first in our house. Our parents live very close to each other which is handy, but means if we're seeing one set of parents we always have to see the other set. So as a married couple with parents to see, who do you choose to see first, they'll both want to feed us too. I think we may have to settle on our Christmas strategy, each go to our own mothers, as to not offend, then meet up somewhere in the middle. That sorted then, gifts? I ordered some chocolate truffles with our online shop for the purpose of giving a box each to our respective mothers, we got the delivery today, having not been to sleep at all yet, I checked over the receipt and noticed I'd only marked that I wanted 1 box!! Damn it, a trip to the shops early doors me thinks.

Last night I attended a retirement party for a surgical consultant who I knew of but have never really spoken to. It was a free ticket a colleague gave me as she thought I needed some time out. My boss was going along too, which I was a little apprehensive about having been off "sick" for the last two weeks. But I later found out my boss had told my colleague to invite me. Very nice thought for someone who people often judge as extremely strict and often cold. I work in a relatively large hospital, which is expanding all the time, she's been there for her whole career and retires next year. Lot's of people comment to me about her strictness and cold attitude. Something which thankfully hasn't been directed towards me. But I have seen it towards others. She gave me a lift home too and was compassionate towards my current situation. The party was good, lots of faces that I knew, an Irish folk band and a chocolate fountain!

Dexter and I have been very much in our heads recently trying to form opinions on a mass of information. I hit a point where I started to get concerned about Dexter's perspective of his illness. I was worried he was starting to loose his way a little. This particular day he was writing a lot, we haven't had much sleep as mentioned. This is down to Dexter experiencing a lot of noise and confusion at the moment and I just haven't been tired until 6am. I realised my concerns about Dexter were because I didn't know what he was thinking or feeling. He could see I was consumed with thought and asked me what was wrong, so I told him that I was worried. He said he couldn't answer my questions just yet because he had been writing the answers down and wanted to finish whilst he was in the train of thought. Later that night he showed me what he had written, it all made perfect sense. He's essentially a born writer, added to that we're married, his writing made a lot of sense to me. I felt enormous relief reading his opinions. His main point was that when experiencing mental illness and all that comes with it researching and trying to find a path is valuable but to some extent pointless. This condition is something you can't cure, it's being human and what may work for someone else might not work for you. To take all opinions with a pinch of salt, especially when experiencing psychosis. Although this sounds obvious, when there's a fine line between madness and reality it's something I was extremely relieved to read. It also pulled me back again, regained some of my focus this week back to really understanding how hard this is for Dexter. I see his exterior, we always talk to each other but since this began it has been hard for him to tell me how he's feeling and what's going on in his head. Sometimes because the voices tell him not to, other times because he's scared he'll be inviting them to peck his head and also because it's hard to express something that no one else around you can see or hear. We still have a very close relationship and he goes beyond expectation with trying to communicate with me. It seems like his exterior is 3 times removed from his interior, there's confusion, disjointed thought patterns and tiredness on his exterior at the moment, take a step back in his head I think there's voices and visual hallucinations, another step back emotional turmoil with more voices, another step back Dexter trying to work it out whilst dealing with his other layers. It's heartbreaking to see because you just wish there was something you could say or do to help him but he can see it himself and he's already on it. But still suffering. I admire him for his resilience and strength.

And yes my failed potato cakes. We had some mash left over, which I decided I'd have a go at making potato cakes with, hmmm. I've never made them before so looked up the basics and they were rubbish, so bad in fact I couldn't continue cooking them and had to throw them away, but I tried and will probably try again in the future. Cooking isn't a strong point of mine, I make an awesome roast chicken dinner though, good mash too. I could eat that now!

Blah...

My head and emotions are erratic at the moment and I can't seem to understand or know exactly how I'm feeling. I'm currently signed off sick from work for two weeks due to “stress related problems”. Unexpectedly, I don't feel guilty about it. But it does mean I'm forced to stop and take a look at our situation. I feel I should probably elaborate on the current situation. Approx 3 weeks ago I received a phone call whilst at work from a friend who was concerned about Dexter after she'd had a phone conversation with him. Her concerns were justified as he was disorientated and appeared to be dealing with a lot of voices as well as thought disorder. Our friend hasn't had to phone me before at work, so I knew she was worried. I went home and his sister and mother were at our house, they too were concerned after a phone conversation they'd had with him. He wanted to cut all his hair off and thankfully, after much persuasion, he decided to let his mum just cut some off, not all! (last time I tried to cut his hair, he ended up with a bowl cut!not a good look). Dexter continued hearing the voices, they never seems to go anyway, it appears to be some days are slightly easier to deal with than others.

A couple of days later I was, again, at work, when I received a call. This time from his CPN who then put Dexter on the phone. Dexter told me they were on their way to A&E for him to be voluntarily admitted. Dexter has never been admitted to hospital. I was at work so was already at the hospital, so didn't need to go far to meet them, so about 3 fags later some deep breaths and with some shakes I met a wild eyed, scared husband with a CPN who doesn't talk much. We booked into A&E, the whole time I'm still wondering why we were suddenly in this situation. We sat down in the main waiting area where a few kids were running about, a group of people in their late teens who'd just been in a minor car accident were loudly talking to each other, a few people were hobbling on crutches and a TV that's picture kept rolling. Not a particularly good environment for someone who can't really focus on reality. Whilst I was observing this, Dexter was grabbing my attention with his eyes, so the CPN couldn't see, and whispering to me “let's go, I can't do this”, getting more and more anxious. All I wanted to do was grab him and run, but he'd agreed to be here, he wanted help. That's all the information I had other than seeing the state Dexter was in. It started to sink in what help he was asking for and this now scared him, to the point of causing more harm than good. So Dexter directed questions at the CPN like “If we see the Dr can they section me?”, the CPN couldn't realistically give Dexter a yes or no answer, because he has to maintain Dexters trust and could also see the effect being in a hospital environment now had on Dexter. On the back of that and the CPN knowing I would be at home the following day, we left. And both breathed a sigh of relief when entering our house.

The following day the CPN contacted me with an appointment for Dexter to see the psychiatrist. At the appointment the psychiatrist, who is quite direct and straight with Dexter (something he responds well to), stated she thinks he is treatment resistant. And that the next option is Clozapine. She explained they can start home therapy initially, but feels he would probably need to be admitted for monitoring, due to his history of low blood pressure. She continued to explain the side effects. Armed with this information, Dexter had a decision to make by the following Friday. And I went back to work immediately after the appointment confused and tired. I decided to make an appointment with my GP, after 2 years my head was now done in, the pressure felt immense, I wanted to be with Dexter and I didn't feel it was safe for me to be working, mainly for my patients benefit! Dexter decided against Clozapine, which I and every person we consulted about it agreed with. But didn't tell him until after he'd made the decision. For our situation, the benefits just didn't outweigh the risks and Dexter is an extremely intelligent, articulate, rational and logical person, who thought about this carefully. Dexter and I decided that if it came to a point that he could no longer reason with not taking it then it would be a last resort. That was just over a week ago, we've now had a week to settle down after all that excitement but the voices and visions continue to be as strong as they were two weeks ago. If not a little more. I don't know how to help him. He continues to take the medication, which isn't giving him unmanageable side effects but to all intense and purposes doesn't work for him. We're researching at the moment, with a view of trying to work out a care plan of our own for Dexter. It's very difficult to ascertain a clear point of view on Schizophrenia, it's treatment options and how to live with it. Because it's different for everyone. So how do you know what will help for him. Alongside this I'm debating what to do about my current working status long term and what that means to us financially. In regards to Dexters plan with the mental health team the CPN is happy with his decision to not take Clozapine and has offered to refer Dexter to the psychological services, CBT doesn't work for Dexter, so maybe psycho analysis might. Blah.

My Intentions

Since September 2007 the treatment for Dexter has been given on the understanding that he has Schizophrenia. The medications he has tried have been atypical antipsychotics such as Quetiapine (Seroquel), Risperidone (Risperdal) and Aripiprazole, together with an antidepressant Escitalopram (Cipralex). 4 months ago he was prescribed a typical antipsychotic (one of the old ones) Zuclopenthixol 10mg with a view to increase the dose to 30mg over a period of approx 2 months. He continues to take Zuclopenthixol 10mg 3 times a day and Escitalopram 20mg once a day.

The treatment for Schizophrenia isn't as simple as medications and I'm sure anyone who has loved someone with this or any mental health condition can appreciate this.

And it's no easy feat trying to understand the complexities involved.

As a nurse working in the “general” sector of health care I have always been taught to holistically treat every patient I care for. Something that I believe in, unfortunately the systems and protocols in place often hinder the holistic approach being achieved to it's fullest potential. I believe the mental health sector tries to treat their “service users” holistically, but as a service users wife, it feels much more theoretical than practical.

Where to start?

Here I suppose.

So, Dexter and I are in our third year of marriage. We started going out about 4 1/2 years ago, neither of us are really sure. It was unexpected and amazing. We knew the same people and lived in the same area and knew of each other but never really spoke. I had been in a long term relationship, I ended it, had a few flings, got another boyfriend and decided to meet up with a girl I hadn't seen for a couple of years. Whilst we were arranging to meet up she got a call from Dexter who decided he'd come and join us too. That day I split up with my then boyfriend (it was never going to work) and went to meet my friend at the bus stop. There was Dexter, he'd just split up with his then girlfriend that day too. And that as they say is history.

We got engaged in the February of 2006 on pancake day and married in June 2006. Nearly giving our parents heart attacks. But we were good and the wedding cost about £500 all in. It was the hottest day we'd seen in a long time, 28 degrees! A lot of our friends helped, my best friends did the food, my brothers friend had a Subaru Impreza (wedding car), a friend did the photos (which were very professional) my Mum and I made the cake. We didn't have time to send invitations (word of mouth). Amazing day!

We then put the wheels in motion to move to New Zealand, a place Dexter had visited before and we both wanted to try out for size. We went in March 2007, I got a job as a nurse in quite a prestigious private hospital on a surgical ward. Dexter got a job in a wine shop, he also taught himself how to edit films whilst we were there and did some freelance editing. After about 2 weeks Dexter started hallucinating, visual and auditory. This got worse as time went on, his behaviour became erratic, he wasn't sleeping, he couldn't concentrate, his thoughts became jumbled, he had to give up work.

We plodded on, hoping it would subside and tried to live a normal life on the other side of the world with no support. September 2007, 6 months in, I phoned my parents and told them what had happened, we had no money, Dexter was a mess, I was still working full time, I had run out of options. They told me to speak to my boss, I did, she was amazing and had no idea what had been going on. She told me to quit work that day and go back to the UK and get some help, she said I'd always have a job there too. So I went home, Dexter couldn't help me work out how we were going to get back to the UK, so again, I phoned parents, they used their credit card and we had a flight booked for the next day (it wasn't easy to sort, as the credit card was in the UK, and we were booking in NZ).

We only had 2 rucksacks of belongings, nowhere to live, no jobs, no money! We finally arrived home 40hrs later, exhausted. I booked a Dr's appt for the next day and we stayed at our parents. Dexter saw the Dr and he referred him to a psychiatrist and the crisis team immediately. I was relieved to have people I love around me but scared for Dexter.

The crisis team psychiatrist after 2 hours of questioning Dexter and I came to a conclusion of not knowing what was wrong with him but gave him some Risperidone. We then saw Dexters Consultant Psychiatrist who diagnosed Schizophrenia. There was debate between the Psychiatrist and the Community Psychiatric Nurses (CPN) about Bi-polar or manic depression too.

So that's the back story, I will post again shortly, after cleaning and general duties.