All because the lady loves... flowers on her anniversary

Today is our anniversary. We’ve been married for 9 years. As I sit here typing this Mr Man is in town buying me a card and probably getting me a surprise bunch of flowers as well. I know it’s so hard for him to go into town, and so it means that much more to me. Usually, wild horses couldn’t drag him there, but just on this one day of the year he will make that special effort. Obviously he can’t cope with going alone, and last year his key worker Paul took him, but this year Paul is sick so my friend has taken him.

How can I not love a man who, despite his anxieties, voices, and paranoia, will go out to buy me flowers for the sake of romance? It’s the ultimate “because the lady loves Milk Tray”* moment.


*A British advert in the 1980’s for Cadbury’s Milk Tray (a box of chocolates), where a James Bond type character would risk life and limb to deliver a box of Milk Tray to the woman he loved, with a voice over at the end of the advert saying “All because the lady loves Milk Tray”.

Edit: Replace "bunch of flowers" with "large bouquet of flowers"!

Untitled

2004 and present day

Mr Man is feeling really anxious just lately. When he’s like that he tends to pace around the house constantly and get under my feet. In the early days I would stop him by giving him a big cuddle to calm his nerves, sitting him down, and encouraging him to express his thoughts and feelings. I had a deep desire to understand how he felt so that I would know how best to reassure him. These days I’m much less patient, which is good and bad for different reasons.

I suppose I still deal with it in a similar way, just a shorter version. I’ll give him a hug and ask him what’s wrong, and whereas in the past it took a lot of probing for him to open up, these days he’ll just tell me what’s on his mind more or less straight away. We used to spend a long time talking about how he felt; I suppose at that time there was a lot for me to learn with so much going on in his mind that I knew nothing about. These days I often know how he feels and what he’s thinking without him saying a word; just by the expression on his face. I’ve learnt over time that it doesn’t really do either of us any good to constantly talk about the negative emotions he feels. It was essential at the start – for him to be understood and for me to understand – but to cope with these feelings on along term basis requires more than just talk. Obviously communication about his symptoms and how he feels is still important, especially if there are changes, but the focus now is more on how to manage them.

He copes much better when his mind is occupied. Thankfully he has lots of hobbies, but he often needs encouragement to do them, and if the anxiety is very bad he may struggle to concentrate. Listening to music often helps to drown out the voices, which are usually the main cause of his anxiety, but music alone isn’t usually enough for him. I find myself becoming more and more bossy with questions such as “What are you going to do today to keep yourself occupied?” This afternoon he was looking particularly glum so in the end I just said “Come on, I’m taking you to the gym”. It sounds easy enough doesn’t it? But it’s taken a long time for us to get to this stage. He used to hide away for most of the day in bed, not wanting to be in sight of the “voices” who were constantly “watching him”, commenting on what he was doing and telling him what he should be doing. He would sleep his life away rather than face the fear of the horrors they would demand he carried out, or for fear of the consequences for not doing so. He was just so drowsy all the time as well from his medication, that when he was awake he couldn’t concentrate on anything to keep his mind off things. There was nothing on this earth that could have motivated him to get out of bed at that time. I know; I tried. Over the course of the day my heart would sink lower and lower as each attempt failed. I had such a mixture of emotions. I missed him so much, but why would I want to force him to face those awful fears by dragging him out of bed? I wanted to be with him, but I was finding it hard to cope with seeing him so depressed and anxious everyday. Once he was up it was impossible to motivate him to do anything. I was finding the challenge so disheartening, so draining; it was often easier to just leave him in bed. I felt like I was failing.

I became increasingly frustrated with the comments made by his psychiatrist during 2004, who we will call Dr Nancy. Mr Man had just come out of hospital after his third admission, and was now taking the “wonder drug” Clozapine. Dr Nancy insisted that I get Mr Man up each day, get him out of the house for a while, and keep him busy. Although I know now that this routine is essential in managing his symptoms, at that time it was impossible - impossible because his symptoms were not yet at a manageable level and impossible because he was too drugged to do anything. I felt that Dr Nancy was placing an unmanageable burden on my shoulders, one that should have been properly handled by someone with the appropriate training and who wasn’t emotionally involved. So many times I wanted to scream at him: “If it’s so bloomin’ easy you come and do it”.

Mr Man was also feeling under pressure to “perform” – that is, to make the improvement that Dr Nancy expected, and to be doing all the activities that he suggested. He felt that Dr Nancy blamed him for not making the speedy recovery he seemed to exact from him, although I didn’t know he felt that way at the time. The pressure to recover made it more and more difficult for Mr Man to be open about how he was really feeling when he saw Dr Nancy, such as if the voices had become worse. He started to hold back from telling him things, but Dr Nancy took a very dim view of me trying to prompt him or filling in the blanks for him. He thought I was being overly negative about how Mr Man was progressing, and overly motherly, perhaps hindering his recovery. This wasn’t the case, but it wasn’t the first time I had been accused of these traits (more about that another time) and I started to question my own sanity as everyone seemed to be happy with Mr Mans progress except me.

Then one day we sat in Dr Nancy’s office and I couldn’t believe what I was witnessing. This man who was usually too depressed to engage in conversation or any other activity was actively participating in conversation and appeared mentally alert as he answered Dr Nancy’s questions. I was shocked, angry, upset, and confused. I was experiencing such a mixture of thoughts and feelings; it’s difficult for me to put it into words. I was so confused, I actually wondered if it was all in my mind, and that he really hadn’t been as ill as I had imagined. I know that sounds crazy, but for years I had had mental health staff telling me that I was overreacting and now I was really starting to doubt myself. Part of me knew it had to be an act, but I didn’t understand why he was doing it. I was angry and upset because it was making me look stupid and overprotective. I was struggling to cope with his illness at home but he was acting like everything was fine. I was worried that he wouldn’t receive the medical help he needed and I knew no-one would take my concerns seriously and that I would have to continue struggling on my own without any help.

Once we had left he returned to his usual behaviour and I questioned him over what had just happened. That’s when he admitted that he felt under pressure to recover. He thought he would get into trouble for still being ill, as if he could somehow make himself well again if he just made enough effort. At this point we decided it would be better if he had a change in psychiatrist. He obviously expected too much from both of us and there was no point in seeing someone who Mr Man was afraid to be honest with, that obviously wouldn’t help him to receive the care he needed. We asked his CPN if he could see Dr Hilary, whose care he had been under whilst in hospital the last time. She is completely different to all the other psychiatrists Mr Man has seen. She allows him to make progress at his own pace, and is so understanding of how he feels; he finds it easy to be open with her about his symptoms. She seems to know exactly how to draw him out, and with 20 years experience she seems to have seen it all, heard it all, so nothing surprises her. She accepts everything he tells her, without ridiculing, disapproving, or trivialising what he has said. I know these are things that should be expected from a mental health professional, but sadly it’s rarely the case. Mr Man is thankfully still under Dr Hilary's care now, and is slowly making great progress.


I actually set out to blog about anxiety tonight, and the problem we have in getting Mr Mans' current CPN to understand what the term means. Maybe next time.

The unpleasant term

Thank you to John Robertson for pointing out this article to me, regarding the use of the term Schizophrenia. It appears that some people are finding this word offensive to their delicate little ears, and want the name of the illness changed.

I would understand it if they felt that the term was misleading, as its literal translation means “split mind” – as in split from reality, but of course some people wrongly think that people with Schizophrenia have a split personality.

However, their reason for wanting to change the name of the illness is that it “falsely groups a wide range of symptoms” and also they feel that “the label stigmatised people as being violent, dangerous and untreatable”.

Of course I’m not a professor, but I have a few comments that I would like to make about this myself:

1. There is a specific criteria of symptoms for a diagnosis of Schizophrenia; the “label” is not handed out indiscriminately so I fail to see how it “falsely groups a wide range of symptoms”.
   
2. The “label” in itself does not stigmatise people as being violent, dangerous, or untreatable, but the media do. It seems obvious to me that people need to be educated about mental illnesses, rather than remove terms from our vocabulary that scare people.
   
3. It is a diagnosis, not a “label”.
   

Richard Bentall, who is a professor of experimental clinical psychology, has suggested that the label “has encouraged the widespread use of "drastic biomedical interventions" as the first-line of treatment, rather than psychological help” as if this was a bad thing. These “biomedical interventions” have been shown to work, and enable a great number of those “labelled” with Schizophrenia to live a normal life. I don’t think you will get many offers from people whose lives have changed drastically for the better through use of medication, for any of your experimental psychology. Psychological disorders which require therapy are hardly the same as psychiatric illnesses which need medication. Studies have shown that patients with Schizophrenia have chemical, and often physical, differences in the brain.

So, if the name is to change, what do we change it to? Some have suggested “integrated disorder” as used in Japan, although personally I feel that this "label" is very vague and will falsely group a wide range of symptoms together, which is the very thing these professors are trying to avoid.

I think this comment from Robin Murray, professor of psychiatry at the Institute of Psychiatry, London, just about sums up the real reason for this whole debate:

“My personal preference would be to replace the unpleasant term schizophrenia with dopamine dysregulation disorder”.

Italics my own.

Why are people so afraid?

I just spotted this news item on the BBC news website. Obviously people are scared because they continually hear in the news how mental health patients run around with axes chopping off other peoples heads. Once again the stupidity of the general public leaves me speechless.

Also on the same day I have found this report which clearly shows that the main problem of mental health patients escaping is that they are a danger to themselves. Of course the answer to this is not a higher fence, but staff who are actually willing to do their jobs and supervise the patients.

What's Wrong?

October 1999 - November 2001

The last time we went on holiday together was in October 1999, we were celebrating our 2nd anniversary, and we had such a lovely time I didn’t want to come home. I didn’t know then that once we had returned home Mr Mans health would rapidly deteriorate and he would never be the same again. He started suffering from the Epstein Barr virus, but due to pressures at work, and through fear of losing his job he forced himself to go into work each day. At that time he worked for Royal Mail, but he worked in the office dealing with holidays, overtime, figures, that sort of thing. He loved his job but he was under a lot of pressure as no one else in the office knew how to do it, and as if his health problems didn’t make things difficult enough for him, his manager would continually be adding to his already heavy work load. He worked six days a week and would often bring work home with him to do on a Sunday. He would come home from work and go straight to bed, too exhausted to eat, and not get up again until it was time to go back to work. I sometimes would get up at 2am to cook him a meal, just so that I knew he had had at least one meal that day. We hardly ever saw each other and it was a very lonely time full of worry about his deteriorating health.

He started suffering from persistent headaches and his GP prescribed him anti-depressants, which at the time I didn’t understand. His medication caused all kinds of side effects, including night terrors. He would call out fearfully in his sleep and then wake, sobbing. I felt angry at the GP for adding more problems to how Mr Man was already feeling, but I realise now that he was trying to lower his levels of anxiety and thus treat the head aches.

All of these problems continued and gradually worsened over the period of a year, and I would often beg him to take sick leave from work. By October/November 2000 he realised that he just couldn’t carry on anymore. He had had a week off work for holiday (after having to train someone to cover for him), and had started to feel a little better, but with just one day back at work he felt as if he had never had any time off. He finally decided to take some sick leave.

Mr Man is a very proud man. I don’t mean in an arrogant way, but it’s very important to him to be able to work, feel useful, and provide. He found it extremely difficult to stop working, and even more difficult to claim benefits. In the end his own GP had to convince him to claim, telling him that he was entitled to it as he was ill through no fault of his own, and had worked hard and paid tax for 13 years.

By September 2001 he was medically retired from his job, and by this time he had been referred to the Psychiatric Day Hospital and was under a psychiatric consultant for his depression. He was so ill, and sleeping so much still, that our 4th anniversary in the October seemed to just come and go without us hardly noticing, which was very unusual for us as it’s usually a very special occasion for both of us. Days later he was in hospital with Pneumonia and Septicaemia. Neither of us realised at the time just how serious his condition was; it was only a few weeks later when Mr Man was seeing his psychiatrist again, and I was explaining how anxious he had been about getting back to work, when she said to him “Do you realise how ill you’ve been? You could have died. It’s going to take a while to recover from that”. We were both a little shocked by this.

It was about that time (November 2001) when Mr Man was prescribed Lithium. He began sleeping even more – 18-20 hours a day, and wetting the bed every day due to this medication. Although I had missed him so much and was so worried about him while he had been working during his sickness, this was far worse than anything we had faced so far. He sunk into a depression so low that he became someone I didn’t recognise anymore. It was a very scary time with his psychiatrist mentioning hospital admissions and ECT, but nothing could have prepared me for the fear I felt when I realised just how suicidal he had become. Through all of this no one really knew what was wrong with him, it was just an accumulation of several things - Epstein Barr, headaches, recovering from Pneumonia and Septicaemia, and now severe depression.

Next: "One Flesh" covering November 2001 - May 2002

Friday

Friday was a very stressful day really. Mr Man had an appointment with his psychiatrist in the morning, who thankfully is a very caring and experienced doctor. This hasn’t always been the case though with the various consultants that he has seen over the years, and unfortunately I think the bad experiences we have had, particularly when he was an in-patient, has left him in such a state that he always suffers high levels of anxiety whenever he has to see a mental health “professional”.

Presently the medication he has been taking is Clozapine and Risperdal, and as previously mentioned he still struggles a lot with the negative symptoms of his Schizophrenia. Also, although the positive symptoms have been reduced dramatically, they are still there. For this reason his psychiatrist, who we will call Dr Hilary, has decided to wean Mr Man off the Risperdal (Risperidone) and introduce Abilify (Aripiprazole). Apparently there have been good results with patients taking Abilify with Clozapine, and Mr Man has spoken to patients himself who have had good results with Abilify alone. That being said, we are obviously still worried about not only the transitional period between the medications, but also whether this other drug will really work for him. All we can do is wait and see.

As the day went on, anxiety levels were increasing for both of us, as he was booked to go into his respite home that night for a couple of nights. I was going away on Saturday, leaving early in the morning and staying over for one night, so I needed him to be able to stay somewhere where he would be safe. Neither of us really like him having to go into respite, but we use it out of necessity, and neither of us have really recovered from him having stayed at home on his own in August when there were no beds. He obviously can’t cope at home on his own, and he wouldn’t cope with the activities that I get involved in while I’m away, so the only thing we can do is book him in somewhere where he will be supervised so that he will come to no harm. He hates being away from home though, so this causes him a lot of anxiety, and it’s really his anxiety that causes me to feel anxious, as I feel so bad for “making” him go there. I dread the moment when I actually have to drop him off and say goodbye; it’s like leaving him at the hospital all over again, and I always cry once I’ve left.

When I dropped Mr Man off at about 10pm the staff were in a “change over” meeting, where one lot of staff finish a shift and another lot start. We were asked to wait in the lounge until they had finished, and were offered tea and coffee which I thought was very nice. However, when the meeting had finished we were confronted by a staff member who was a right grouchy old bag, who complained about my being there, as visitors don't usually stay that late. I pointed out to her that we had been asked to wait there, to which she replied “I know” so I don’t really understand what her problem was. She then said we were expected at 7pm. I have no idea why as we didn’t specify what time we would be arriving, and no one has ever suggested that it should be by a certain time. I had explained to the other member of staff though, that with all good intentions unfortunately “life” happens and that was the soonest we could get there. Being greeted with that didn’t make me feel any better about leaving Mr Man there and it didn’t help to settle his anxiety either. When I spoke to him later on the phone though, he said that she was ok with him in the end. Unfortunately past experiences make me ready for a fight at the first hint of unpleasantness.

After assessing the level of his illness, they will only take him for three nights in a row maximum, although he usually only stays for one or two nights, and all of their “guests” are only entitled to stay three times a year. I wish it was more often, say six times a year, as I’m sure that if he stayed there more often he would become more relaxed about going. It doesn’t really give me many opportunities to get away either, and the last time I had a real holiday (which was only four days anyway) was in 2003 while Mr Man was in hospital.

Unfortunately though even this limited service could soon come to an end, as closure of this facility is on the cards due to NHS cut backs. What we will do then I have no idea, and to be honest I’ve tried not to think about it, although I know I should. I think I may have missed the deadline for writing a letter of appeal, although I shall do it anyway. It’s just sometimes so difficult to put into words how I feel about issues like this, so I suppose that’s why I have put it off for so long.

It's not that I need a break* from Mr Man - why would I? We love each other and we love being together. But I do need a break from the house and the usual routine of things, I think most people do, but I can't go on a holiday with Mr Man like most "normal" couples would. I miss that so much.

*I’ve mentioned Jim before, Mr Mans key worker at the respite home, and how stupid he is. Recently he said to Mr Man that he should think about going in for respite more often, to give me “a break”, and not just when I’m going away.

1. He can’t go in more often; he only gets three respite breaks a year.
   
2. I don’t need “a break” from my own husband, and thanks to that careless comment I had to spend a great deal of time reassuring Mr Man of that fact.
   
3. If we wasted respite breaks with me staying at home, we wouldn’t have anywhere for him to go to be safe when I go away.

Where do they find these people?