The Ghost of Christmas Past

First published 23/12/06. Edited for 2007.

Christmas is an incredibly lonely time for many people. Unlike any other time of the year the world seems to stop spinning and everything comes to a halt. In this country at least, this includes mental health services. This is just too much to cope with for some people; just knowing that no one is there for them if they need someone can cause an increase in anxiety. (See this news article)

Traditionally, it is a time for family and friends to come together. But some people don’t have any family. Many will be remembering lost loved ones, and some will be grieving new losses. Elderly ones in particular may have lost their spouses, siblings, and friends. Sick ones may struggle to form lasting friendships. For all of these ones, knowing that others are enjoying the company of people they love and who love them can make them feel more isolated than ever.

"The Silent Night" by Philippa King

For some people, going to the shops each day provides the human contact that everyone needs. But the shops are closed. I know people with mental health difficulties who wander around town all day, preferring the company of strangers than no company at all. How will it be for those ones when the town centre is completely deserted? When there is no one on that bench to chat to; no playing children to laugh at; no struggling mothers to joke with?

This weekend people may be writing a list of all their final arrangements, or their last minute shopping needs. Why not write a list of people who you know live alone? Maybe they’re elderly ones; maybe they have an illness of one kind or another. Maybe give them a ring just to show that they’re not forgotten. Maybe pop round for a cuppa and take them a slice of cake. At the very least you may just make someones day. Or you could even save a life. Maybe.

Violence and Schizophrenia – Part Two

As previously discussed, and as confirmed by the comments received, Schizophrenia sufferers are often the victims of violent intrusive thoughts. But are people with Schizophrenia violent?

If your opinions are easily swayed by headline news then you would probably conclude that they are. I am aware that within the town I live in, stabbings and murder are far more common than I would like, but rarely – if ever – does it reach national news. The only type of killings that do reach national headlines are the ones that are particularly shocking in some way – a child perhaps; a whole family; or a murder committed by someone with mental health problems. Now there’s a headline.

With so much media coverage every time a person with mental health problems commits a murder, it’s no wonder that people think they are all mad, axe wielding murderers. In fact, as few as 50 murders a year in the UK are recorded as being committed by someone with mental health problems, compared to 1,300 suicides – when it is said that people with Schizophrenia are more likely to hurt themselves, it’s true.

95% of murders are committed by “sane” people. My guess is that of those 5% of murders which are recorded as being committed by people with mental health problems, many of them could have been prevented, and many of them would have been committed whether the person suffered from mental illness or not. Why do I say that?

It is a myth that people with Schizophrenia will suddenly “snap” and become violent. Uninformed (and even misinformed) individuals still believe that people with Schizophrenia have a split personality and will switch without warning between the two. Often people believe that whilst one of their personalities may appear “normal” the other is often psychopathic. The truth is that people with Schizophrenia only have a “split mind” in the sense that they are split from reality, with principle symptoms of Schizophrenia being delusions and hallucinations. If suffering from Schizophrenia was really the cause of a person committing murder it would be because of these delusions and hallucinations. The person would probably have a strong belief that he or she was acting in self defence, as many delusions include feelings of persecution.

It is thought that maybe only 1% of the 1% of people who suffer from Schizophrenia commit violent crime.

"True Figures" by Philippa King

Of course, with adequate mental health care this situation should be rare. Although symptoms can progress quickly in a person with Schizophrenia, we are talking about a matter of days or weeks rather than minutes or hours. Before a person ever deteriorates to the point of acting on their belief that they have to kill in order to protect themselves or their family, the deterioration should have been recognised and intervention should already have taken place.

But as I said earlier, many of those murders which are committed by people with mental health problems may have occurred anyway. A diagnosis of Schizophrenia, or any mental illness, does not define a person or their personality. Like any other illness, Schizophrenia is indiscriminate and can affect people from all walks of life, different upbringings, and different personalities. It stands to reason then, that with as many as 1 in every 100 people suffering from Schizophrenia, at least some of them will have a criminal mind. Add to the equation the fact that illegal drug usage can induce Schizophrenia, and it’s easy to see that many of those murderers could already have been on a criminal path even before the onset of their illness.

Obviously, the job of their solicitor, if the crime is undeniable, would be to negotiate the shortest prison sentence possible, and if that means playing on a persons mental health – whether relevant or not – they will do so.

So taking these things into account, I wonder what the true figure should be of those who commit murder because of their mental health. And how many more could be prevented? Also, are we really in more danger of being murdered by a person suffering from Schizophrenia – whose condition should be closely monitored by a Community Mental Health Team – rather than your average bad tempered driver, a group of drunken youths, or even that friendly and polite neighbour of yours who hides bodies under the floor boards?

Related Posts: Violence and Schizophrenia - Part One, Violence and Schizophrenia - Comments from Readers

Violence and Schizophrenia – Part One

I’ve only ever really skimmed over the symptoms of Schizophrenia in my blog. To be honest, there are so many websites that list the diagnostic criteria for Schizophrenia already, and probably far more accurately and eloquently than I ever could. When you are a sufferer of Schizophrenia though, or care for someone who is a sufferer, you realise that there are other common symptoms which are not listed as part of the diagnostic criteria, but are suffered none the less. One of these symptoms is intrusive thoughts. What do I mean by that?

I don’t mean the compulsive thoughts that Mr Man often struggles with. Compulsive thoughts are similar to what is experienced by a person suffering from Obsessive Compulsive Disorder – an obsessive compulsion to carry out often ritualistic behaviour accompanied by anxiety. For Mr Man these compulsive thoughts present themselves as obsessive counting in his head, and re-arranging things in order. When we had some children’s building bricks in the living room he had compulsive thoughts to build them into a symmetrical shape, dismantle them, and then rebuild them again. Trying to resist this compulsive thought caused him a lot of anxiety until eventually we decided to put the bricks away out of view.

The intrusive thoughts that Mr Man experiences cause him anxiety for very different reasons. These thoughts are very violent in nature, and he describes them as being inserted into his brain as if by an outside source. It is precisely because these thoughts do not reflect his own feelings that they cause him so much anxiety, rather than it being the strain of resisting such thoughts. These violent thoughts are not temporarily accompanied by a surge of anger which could tempt the sufferer into acting upon them; neither are these callous thoughts with no feeling for the victim; rather, they are unwanted thoughts that cause the sufferer a great deal of anxiety as they have no desire to act on them. They are as unwelcome as the frightening hallucinations a Schizophrenia sufferer experiences.

"Intrusive Thoughts" by Philippa King

When Mr Man was at his worst, he had intrusive thoughts of killing me and cutting me up into pieces. He said he also saw himself doing it on a sort of screen in front of him. Was I scared? Not at all. Should I have been? Should I have been afraid of a man who had never raised his voice to me let alone his hand, and who sobbed and shook with grief at the thought of carrying out such atrocities? I never feared that he would ever act on these thoughts. In reality these intrusive thoughts caused him far more anxiety than they ever caused me; my only concern was how traumatic the experience was for him.

As I said though, this is not a symptom I have ever read about. Maybe this is why when Mr Man explained what he was experiencing to the staff in the hospital they didn’t believe him – they actually thought it was an act and that he simply wanted to kill me. He was told that if he killed me he would be held responsible for his actions and he couldn’t “get away with it” by claiming mental illness. My goodness, they must have had some good actors on the ward if they thought this was an act, because I have never seen a man so distraught in my life. Their suggestion that these thoughts were his own desires only distressed him further.

I know another Schizophrenia sufferer who has also experienced very violent intrusive thoughts. She also finds them very distressing. Although describing them in exactly the same way as Mr Man – as being inserted into her brain by an outside source and feeling that they are not her own thoughts – she feared that she was actually a bad person and felt a lot of guilt over it. She never told anyone at the hospital about these thoughts, and no one ever asked her because, I suppose, it is not part of their diagnostic criteria. It would have been helpful for her to know that what she was experiencing was part of her illness though.

I think it’s important to note that although Mr Man has struggled with, and eventually acted on compulsive thoughts and command hallucinations, he has never acted on these unwanted intrusive thoughts.

Does the presence of compulsive and intrusive thoughts mean that people with Schizophrenia are more likely to be violent? Are they “on the edge”, ready to snap at any moment? This will be discussed in the following article.

Related Posts: Violence and Schizophrenia - Part Two, Violence and Schizophrenia - Comments from Readers

Appeal

Mera Peak Funding Appeal

Promoting Positive Schizophrenia

Schizophrenia is a very destructive condition. Often, recovery is thought as 'near' impossible. A very high percentage of those diagnosed with schizophrenia are unable to work or live life without torment due to the demoralising and destructive symptoms. The mistreatment and management of the symptoms and the stigma and discrimination towards those who are diagnosed can be just as destructive as the disease itself.

Stuart Baker-Brown, a campaigner and activist for greater understanding and treatment towards schizophrenia was diagnosed with the disease in 1996. For many years he has been promoting his own positive recovery to inspire and offer hope to all those who share his diagnosis.

Mera Peak Challenge

In October 2008, Stuart will visit Nepal and attempt to get to the summit of Mera Peak 6500m. Mera Peak is very achievable for 'strong trekkers' and the capabilities of summiting without experienced mountaineering skills are high. Stuart has visited Nepal before and has successfully completed a trek to Everest Base Camp. He has already tried to summit Mera Peak in march 2006 but weather conditions were severe and so the challenge had to be abandoned. His achievements and story of recovery has been covered in the media.

We need your support

In order for Stuart to get to Mera Peak he needs to raise £3000. Stuart hopes that his potential summit will help to inspire the 51 million people around the world who are diagnosed with schizophrenia on their own personal journey of recovery. Stuart's own achievements and recovery has already helped many. Please donate generously and support Stuart's attempt to reach even 'greater heights' and send a very positive message of 'hope' to all those diagnosed with schizophrenia.

Please donate generously. You can make a donation via the One Mans Mountain website or contact Stuart Baker-Brown directly at-15 Acreman Street, Cerne Abbas, Dorchester, Dorset, DT2 7JX.

With your valued support and kind donation, Stuart can continue to inspire those who need a 'ray of light' in the demoralising and misunderstood world of schizophrenia.

Please help us make this attempt possible and help many on their own journey of recovery! To promote positive schizophrenia.

With our greatest thanks to you all.

Stuart Baker-Brown and the One Mans Mountain Team.

www.onemansmountain.com

The Perfect Gift

It’s here. It has arrived. The new 2008 calendar by Philippa King is out NOW!




But hold your horses! There is no need to go rushing off to get your hat and coat! You can buy the calendar right here, online, in the comfort of your own home, from Lulu. (Preview available)

What’s more, you’ll be helping to raise money for Mind, the leading Mental Health charity in England and Wales, as £1 from every calendar sold will be donated to this charity.

What better way to raise awareness, raise money, and raise a smile, all at the same time?


For those who are unsure about ordering from Lulu, having received my calendar today, I can now confirm that the quality of the calendar is excellent. It is printed on to thick glossy paper, and it arrived undamaged and very well protected, packaged inside a box. Even my postman couldn’t harm it! (Although he always tries – he likes throwing our parcels over our 6 foot gate onto a concrete path) From the date of dispatch it has taken 2 weeks for it to arrive from the US to the UK.

If, like me, you are a fan of Philippa’s work, she now has an online gift shop with items ranging from T-shirts to greetings cards. Take a look here.

The Truth Revealed

Continued from "The First Three Weeks"
End of June 2002

It was a Thursday. A bed had become available for Mr Man on the Acute ward in the Psychiatric hospital. The decision was made to move him from one hospital to the other during the afternoon and a member of staff took him in a taxi. I wasn’t allowed to visit him until the evening during the usual visiting hours. I know this may seem reasonable to most, but for the first time I felt completely excluded from Mr Mans care.

It wasn’t just my own feelings I was concerned about though; Mr Man had relied on my support through every step – we had been inseparable for months leading up to his admission. I had been with Mr Man at every appointment; every team meeting; and I had been with him during the whole admission process when he was first admitted. Now suddenly he was being moved to an unfamiliar building, with different patients, different staff, and different rules, and he had no one for support. He was alone. I was angry about this; an emotion I became very familiar with over the following months. I felt like we were being kept apart like naughty school children.

At least because this was a psychiatric hospital with no need for fancy electrical equipment Mr Man and the other patients were allowed to carry mobile phones, so we were able to keep in regular contact. I felt more at ease knowing that at any time of the day or night Mr Man could ring me if he felt he needed to.

I went to the hospital that evening to visit him. “Visitors please report to the office” read the sign on the door. I didn’t have to do this at the other hospital as most of the time the entrance to the ward was locked and a member of staff had to let you in. Despite the inconvenience of this to the members of staff there they still managed to greet the visitors with a smile.

I walked in and knocked on the office door. A stony faced woman swung the door open and stood looking at me without a word, waiting for an explanation for my being there. I was a little taken aback by this cold greeting. Looking back I can see now that the staff were so disinterested in the patients that they hardly knew who was a patient and who was a visitor, and so treated everyone with the same level of contempt.

I was led to the garden where Mr Man was sitting on a bench, nervously rocking backwards and forwards. It was a beautiful sunny day. I cuddled up to him and we held hands, hardly knowing what to say to each other. This was a very stressful day for Mr Man; not only had he been moved from one hospital to another and denied the support of his wife, but also I was leaving that evening to go to the convention city for three nights. I would have felt guilty for leaving him at any time, but after such an unsettling day I felt worse. But it was “doctors orders” so to speak; after realising I had been on suicide watch for many months she insisted that I needed a break away. The hotel was booked, and my room mate was now depending on me for transport.

It was then that he told me.

“They’re watching me all the time. There are cameras’ everywhere”

In that moment I knew he was suffering from something more than severe depression, but I had no idea what; I just knew it was serious. He was so scared; he really believed what he was saying was true. I didn’t know what to say; I had never dealt with anything like this before in my life, but somehow I felt it was wrong to just dismiss his beliefs, brushing his feelings aside, and to tell him it was untrue. On the other hand I couldn’t confirm it either.

“How long have you felt like this for?” I eventually asked him.

He had felt that way for years but had felt unable to tell me. I left that evening feeling completely shell shocked. I didn’t know what I felt. I was numb. I was confused. Should I really be leaving him?

"There Are Cameras Everywhere" by Philippa King

I drove to Coventry city, chatting with my companion as I drove, but all the while with my conversation with Mr Man in the back of my mind. How we ever got there alive I’ll never know. I negotiated the ring road with only two months of qualified driving experience and my head still spinning from the bomb shell he had dropped on me before I left.

I had only taken my test because I knew that it was a possibility that Mr Man could be admitted into hospital at some point. I didn’t have time to mess about; I booked my test and then rang the driving instructor and told him I had 6 weeks until my test. He was brilliant and thankfully I passed first time. About 5 weeks after I had passed Mr Man was admitted into hospital. I don’t know how I could have supported him and visited him every day without being able to drive.

My companion and I met up with a couple of acquaintances once we had reached the hotel. The four of us ate together for the next three days but I had little to say. My conversation with Mr Man just went round and round in my mind. My companions were of an older generation and didn’t really understand mental health issues, but after losing three husbands to ill health my room mate was sympathetic to the strain of having a husband in hospital, especially at such a “young age” as she put it. It was difficult not having anyone to discuss my fears with and knowing that no one could really understand what Mr Man and I were going through though.

At the convention on the Saturday I bumped into an old friend who had previously suffered from a nervous breakdown after her husband had left, and had spent some time in a psychiatric ward herself. She asked me how Mr Man was doing and the truth poured out from me as I broke down in tears for the first time. At last – someone I could talk to who would really understand. She said to me “You must watch the film ‘A Beautiful Mind’. It’s all about a man with Schizophrenia”. I didn’t understand what she was trying to say to me, but I made a mental note of the film; her film choices were usually good.

I was exhausted when I returned to my home town on Sunday evening, but I couldn’t wait to see Mr Man again. I don’t remember much of my visit, only that the atmosphere on the ward didn’t ever feel “right”, but I couldn’t put my finger on the reason why. At the time I tried to put my uneasiness down to the people and surroundings being unfamiliar to me.

On the Monday my hairdresser friend came to my house to cut my hair. She also asked how Mr Man was and I told her what he had said about being watched all the time. “Do you think he has Schizophrenia?” she asked. She was the second person to mention this illness to me. I needed to find out what it was.

I did an internet search and found that there were four main symptoms* of Schizophrenia. They were (in their most simplistic form):

• Delusional thoughts. Commonly thoughts of being persecuted or being watched. This had been confirmed by Mr Man just four days earlier.
• A flattening effect. Lack of emotional expression, including facial expressions, tone of voice, and eye contact. This I had witnessed myself in the months leading up to his admission.
• Negative symptoms. Being withdrawn and lacking motivation to even care for ones own physical needs. Again, something I had witnessed during the previous months.
• Hallucinations. Most commonly, hearing voices. This was the only box I couldn’t tick; I didn’t know whether he was hearing voices or not.

I knew I had to ask him.

When I visited Mr Man that evening we sat in the “quiet room” together. He looked around the room nervously. The smoke detector was a camera; the plane flying overhead was watching too. I had never seen him looking so frightened and anxious.

“Do you hear voices?” I asked him softly as I held his hand. He nodded.

I tried not to ever confirm or deny their existence; I only asked questions to help me to understand what he was experiencing. Bit by bit the whole frightening truth came out. He didn’t tell me about the voices before because he was scared; they told him not to tell or they would hurt me. They used to help him write computer programs but now they were trying to steal his ideas from him. They were sending beams to steal his thoughts, and projecting holograms which spoke to him.

"Thought Theft" by Philippa King

I knew then. I knew. But the “educated ones” weren’t as easily convinced.


*Although this is what I had read at the time, Schizophrenia is a complex condition and should be properly diagnosed by a person qualified to do so. More information on symptoms can be found here.

Next post: Dark Days

Happy Anniversary Mr Man

Today we celebrate our 10th Wedding Anniversary.

We have been through so much together and yet the time has flown by. Our anniversaries have always been important to us, and actually we got married just two days after the anniversary of when we first started dating, so we’ve been together exactly 11 years and 2 days.

We received the loveliest compliment the other day, when someone asked how long we had been married. When we told her, her jaw fell open in shock and she said “I thought you were newly weds!”

Loving Mr Man is just so easy; I’m not sure if we’ve ever had to “work” on our marriage as such. It’s true that every relationship involves a certain amount of compromise, but having to compromise for someone you love so much is never a burden.

What do I love about Mr Man?

On the face of it we have little in common; I hate his taste in music and he hates mine; he likes sport and I don’t; I like dancing and he doesn’t; he likes meat and I like veg; he likes being alone and I like company; the list just goes on and on! But when it comes to important issues we think the same; he has a strong sense of justice and believes that all people are equal. He treats everyone with respect. He’s not impressed by education or social status, but rather good manners and sincerity.

He’s intelligent and creative, funny and good looking; and yet humble, modest, and unassuming. He’s sentimental and romantic, loyal and kind.

Probably the thing I love most about Mr Man is the fact that he loves me, despite all my flaws and weaknesses. I’m still amazed by that fact every day, as he knows my flaws more than anyone else. Ten years on and he still tells me that he loves me every day. He still tells me that I’m special, beautiful, and how lucky he is to have me. He proves that he means it by the way he treats me. How could I not feel drawn to a man like that?

Thank you Mr Man; I love you too. I consider myself the luckiest girl in the world to have someone as special as you. Thank you for marrying me.



Related posts: So Blessed, All Because The Lady Loves...
Read How our relationship began

Respite

Dictionary definitions of the word Respite:

• to relieve temporarily, esp. from anything distressing or trying; give an interval of relief from
• a usually short interval of rest or relief
• a (temporary) relief from harm or discomfort

Respite comes from Old French respit, from Latin respectus, “a refuge, a retreat”


Mr Man went into his respite home again recently. It’s one of those necessary evils that both of us hate. If I’m going away somewhere Mr Man can’t cope with either coming with me or staying at home, and so he needs to go into “respite” accommodation. I know I’ve complained earlier in the year that there are not enough respite beds, but that doesn’t mean that we like using them!

The day that Mr Man goes in is always a stressful one, and we tend to leave everything to the last minute; pointlessly trying to delay the inevitable. I feel so cruel dropping Mr Man off there when I know that he hates it there so much. He feels insecure being away from the familiar surroundings of our own home, but we both know he won’t cope being on his own. At least when he goes into the respite home he always stays in the same room, which helps to give him that sense of familiarity that he needs. Also, I worry about how he will cope while I’m away. I don’t trust the staff to notice if his symptoms worsen.

"Respite" by Philippa King

We both tend to avoid contact with the people who work there as much as possible. They’re pleasant but clueless, and so laid back that they’re almost levitating in a horizontal position. It’s frustrating to say the least. The presence of one member of staff in particular makes Mr Man feel extremely uncomfortable as he used to be his manager when he worked for Royal Mail, and they didn’t get along at all. Neither of them has brought up their past relationship, and they’re pleasant to each other, but it’s very awkward.

Mr Man tends to just stay in his own room most of the time. He takes his laptop with him and connects to the internet using his mobile phone as a modem, and he also has a little gadget that he takes with him that he can watch all his favourite films on.

He did spend some time in the living room this time though, comforting a woman who was also a “guest” there. Now bear in mind that there is only one respite bed and Mr Man was in it, so this lady has either just been discharged from hospital and her stay there is part of her rehabilitation into society, or she is staying there as a form of “crisis intervention” – in other words her mental health is deteriorating and she is not coping at home, so they move her to this home in the hope that they can stabilize her before she deteriorates further and needs a hospital admission - after all, prevention is better than cure, and rehabilitation homes with unqualified staff are cheaper to run than psychiatric wards which require proper nurses. Bearing that in mind, I’m not quite sure how this “crisis intervention” thing is supposed to work; the staff have no say over medication or any other form of treatment or therapy. In all honesty they appear to be nothing more than baby sitters.

When Mr Man first stayed in this home I was quite impressed with the relaxed atmosphere and the fact that the staff room door was always open. Rather than making themselves unapproachable by hiding away in the office for their gossip and tea, the staff have an open door policy whereby guests can just walk in to the office at any time of the day or night for a chat. This is so different from the hospital that Mr Man was in where patients were treated like naughty school children, left queuing outside the office door, and were not allowed out of their rooms after a certain time.

However, going back to the lady that Mr Man was comforting, what she needed was more pro-active care rather than re-active*. As she struggled to hold back tears she explained to Mr Man that she felt too shy to just walk into the office and announce “I need to talk to someone”. Once again I suppose it comes down to the age old problem of these staff members not being psychic; they can’t offer help unless they know it’s needed. But surely discernment would be a good quality to possess for a job like this?

To be honest I’m not sure what qualities or qualifications are looked for when these people are employed. I mentioned previously how Mr Mans Key worker, Jim, unhelpfully tried to offer me various dates for Mr Man to stay as a substitute for the actual dates I needed – not very helpful when you have a hospital appointment for an operation on a specific day. He has also rather tactlessly suggested to Mr Man that he should stay more often to give me a break at home, as if Mr Man is a burden to me. If it didn’t make me so angry it would be laughable considering the cutbacks in respite accommodation. How could he possibly stay more often?

This time when I booked the dates for respite Jim booked Mr Man in for the Sunday night “just in case”, in addition to the Friday and Saturday I had asked for, despite the fact that I had already told him that Mr Man would be picked up by his sister on the Sunday morning. I couldn’t be bothered to argue with him. The less time spent in conversation with him the better. When I dropped Mr Man off I made sure that the staff were aware that Mr Man would not need the bed on Sunday night, but they left him booked in saying “It doesn’t matter”. Well, obviously not to them, but as someone who struggles to get the dates needed for Mr Man, especially now that there is only one respite bed for the whole of the north of the county, I feel it is a shocking waste of resources to book a bed for use when you know full well that it will remain empty. What happened in the summer is a classic example; I didn’t know until less than one week before I was due to go away whether the bed would be free on the Thursday night or not. Is this the kind of attitude that staff have at all of these kinds of homes?

To be honest I’m beginning to wonder whether it’s really worth all the stress just for a few days away. This last time that Mr Man stayed there I was incredibly worried about him as he began to feel very down on the Saturday. I couldn’t sleep that night because I was so worried about him and ended up phoning him at about 2am to make sure he was ok. Even after all this time I can’t shake the thought that he might seriously harm himself or even attempt suicide. I suppose after living with that very real fear for so long it will never leave me entirely. My only comfort is that when he is in the respite home he is not completely alone, so if I suspected that something was seriously wrong I could get the staff to check on him.

On Sunday evening I was so relieved to have him home again with me. Our true respite.



*In behavioral medicine, proactive often refers to a treatment approach where a therapist initiates contacts as opposed to reactive where the responsibility for contacts with the therapist is entirely on the client. - Wikipedia

Progression or Regression? Part Two

The situation with Mr Mans health continues to be confusing for me.

His Table Tennis nights had dwindled down to once a week towards the end of the summer, but now that the season has started again he’s back to playing four times a week. Despite playing more often, the anxiety he experiences before he goes out seems to be getting worse instead of better, even on practice nights. But once he gets there and starts playing he seems completely fine, unless he is just doing an amazingly good job of hiding it, like he did at the wedding the other week.

When I went to pick him up last night he was chatting away to other players, and you could almost forget there was anything wrong with him at all. But once we returned home he kept telling me how unwell he was feeling and he even reverted to banging his head repeatedly on the wall – something he hasn’t done since the last time he was admitted into hospital in 2003.

When I think about it, he hasn’t composed any music for a few days now, and he’s nearly set fire to the kitchen twice recently, so I suspect he is struggling with concentration at the moment. Until recently he was coping quite well with cooking – something he has been doing more of since the worsening of my own health this time last year.

I get it so wrong sometimes when I’m looking after Mr Man, even after all this time, probably because the level of what he can cope with keeps changing. It’s so confusing. Also, it’s hard not to react to a situation sometimes. After hearing him banging his head repeatedly, I went into the kitchen to give him a cuddle and some reassurance. However, when I walked into the room he was just sitting there in the chair whilst the chip pan oil was burning and filling the room with smoke. “What on earth are you doing?” I shrieked. “I’m just waiting for the oil to cool down” he replied. “But the gas is on underneath! It’s burning! Look at the smoke! Can’t you see it’s burning?”

I should have thought more rationally about the situation before I freaked out the way I did. My reaction only made him feel worse. It’s never a good idea to freak out at someone suffering from psychosis; it only adds to their anxiety and confusion. He has enough going on in his mind as it is. If I had thought about it calmly I would have quickly concluded that he obviously wasn’t feeling well and shouldn’t even have been attempting to cook food. He’s never done anything like this before; he usually knows which gas setting to use so he obviously wasn’t thinking clearly. I should have just switched the gas off and given him his cuddle. Why did I even think he would be well enough to cook food after he had told me he didn’t feel well?

The confusion psychosis causes can be frightening and disorienting, like thick plumes of smoke.

"She Shouts" by Philippa King

So the question “Progression or Regression?” should really be aimed at me. Am I progressing or regressing in my role as carer (or even wife)?

Progression or Regression?

Sometimes I just can’t tell.

Mr Man keeps a lot of how he feels to himself. Often I have to rely on visible “signs” of symptom fluctuation, such as pacing the floor and looking out of the window a lot, and then I ask him specific questions. Occasionally he makes the statement: “I don’t feel very well” without prompting, but he doesn’t elaborate on what that means without very specific questions. Simply asking “In what way?” produces the response “All ways”. I have to actually ask: “Are the voices worse?” and he’ll nod to confirm that they are.

Mr Man appears to be coping very well at the moment. He’s been keeping himself incredibly busy in his studio, either by composing music, writing computer programs or designing websites. This is obviously a good thing and shows that his level of concentration has improved dramatically.

Also, he actually came to a wedding with me at the weekend, and I was amazed at how well he coped. In the past he would have been throwing up, shaking, sweating, and looking extremely pale, but although I know he was feeling anxious he controlled it very well and showed no visible signs of it. We were both relieved to find that it was a relatively small occasion, but we didn’t stay for the whole evening; the ceremony, the meal, and the speeches were more than enough for Mr Man. Once we stood up to leave Mr Man couldn’t get out of the building quick enough and I found myself chasing after him!

But besides the expected worsening of symptoms since the wedding, there have been other little things that make me wonder if Mr Man is doing as well as it appears.

Recently he’s taken to sitting on the front doorstep. Initially I thought this was a step forwards as he’s usually anxious about being outside where “the voices can see him”. But then I realised this was merely an extension of looking out of the window, which he does because he believes people are watching the house. I asked him one day if he was getting some air, but he told me he was “just keeping an eye on things”.

"The Threshold" by Philippa King

Also, although I’m glad that he has been keeping himself busy and distracted in his studio, this also means that he is neglecting himself more than usual. After sleeping a lot myself the other day, I woke in the evening to find that he hadn’t had anything to eat or drink all day.

I was amazed to find that he had actually washed his own hair last week, and again, this would appear to indicate progress. He said it was because he didn’t want to wake me, but I suspect it was because he was trying to escape the anxiety of being forced to have a bath. He didn’t escape it though; I made him have a bath before the wedding. But there’s something about bathing that makes him revert back to something resembling the man I cared for before his first hospital admission. He suddenly becomes withdrawn and depressed, and he just sits there with his head hanging low, unwilling or unable to wash himself; I can’t tell which. He says he hates getting wet, and having a bath makes him feel “exposed”, but unfortunately it’s one of those necessary things that I have to make him do sometimes.

Generally though, I would still say he’s doing much better than previously. Although his symptoms worsened after the stress of the wedding, it wasn’t as bad as when he went to a committee meeting for his table tennis club a couple of months ago.

Mr Man seems reluctant to admit that he is improving though. I wonder if it is because subconsciously he worries that if others think he is improving then too much will be expected of him, or that he won’t be given the support that he still needs. That must be a very real fear for people recovering from mental illness, especially as so many people only seem to be able to understand “ill” or “well” and nothing in between. “In between” can be very confusing though.

M.A.D Art Installation

If you haven’t had the opportunity to go to the M.A.D (Making a Difference) Art Installation this week, unfortunately you have missed your chance, as the last day was today.

I managed to go on Friday with my Curly Haired Friend, and it was a very moving experience.

I was quite surprised when I first arrived as I wasn’t expecting the Gallery to be so small, but there was a lot of work crammed into a very small area, and our time there seemed to absolutely fly by as there were so many fascinating pieces to see, hear, and read. I only wish that the pieces had been properly labelled to give full credit to the artists.

One piece that I could hardly tear my eyes away from was this piece with the words “The One That Got Away” written in the bottom right hand corner.


Made of tubes, to me the people looked like they were tied up in straight jackets. It reminded me of how people with mental health problems are often restricted and held back from enjoying life due to heavy medication regimes inflicted on them. Also, how restrictive it must feel to have ones freedom taken away when hospitalised against ones will, and yet without the safety of those confines “the one that got away” didn’t fair any better. It seems to be a hopeless situation for some, and it struck me that mental illness is like a straight jacket in itself. How can one break free from that?

I also found the sculptures interesting to look at and I couldn’t help but notice that all except two of them were people bowed down low, obviously indicating the crippling depression that accompanies mental illness. The only two that were looking up seemed to me to be writhing in pain.

My Curly Haired Friend, who like me, has suffered from depression, was drawn to this ladder made with barbed wire. It reminded her how impossible it feels to pull yourself up again once you have reached the bottom, as every step is full of pain.


Although the art was very good, the experience was painful. It wasn’t a celebration of art, or a celebration of those surviving mental illness, but mental illness expressed through art. I just saw and heard pain everywhere. For me, the most distressing part was one of the audio pieces; the constant mumbling and whispering was unbearable. I wanted to scream for it to stop, and I realised that this is something that Mr Man has to cope with every day.

Although upsetting, it was an experience I would recommend as it fulfilled its purpose of giving insight into the torture of mental illness.


My apologies for not being able to give credit to the relevant artists.


Other exhibitions

The “Frame of Mind” Art Exhibition will be displaying artwork of people managing a serious mental illness or brain disorder. It will be held on Monday 22nd October - Sunday 4th November 2007 at Wycombe Swan, High Wycombe, Buckinghamshire. Wycombe Swan Art Gallery is situated in the Circle Foyer. Click here for directions.

“Mental Image” is an international open art exhibition exploring mental health hosted by Project Ability. Selected work will be exhibited in Project Ability’s two galleries, located in the centre of Glasgow, from Monday 8th October – Friday 23rd November 2007. Click here for location and more information.

News Flash!

It is the first anniversary of this blog at the end of the month, and with that in mind I have a new and exciting development to announce.

I am very pleased to announce that this blog now has an official illustrator – Philippa King.

Philippa is an extremely gifted individual who writes and paints about her experiences with Schizoaffective Disorder. Having suffered from mental illness for 19 years of her life, Philippa has found solace in her art explaining “I live to paint and paint to live. Time spent not painting is time spent not breathing”.

Philippa’s art is a very powerful tool in portraying how it feels to suffer mental illness, which is precisely the reason why I contacted her to ask if I could use some of her art on my blog. What happened next can only be described as having a whirlwind romance with her art, as I quickly went from falling in love to owning a piece of my own within days.

I was blown away when Philippa agreed to actually illustrate my blog, and her first piece “Because I Love You” (for this post), sold within two days, really demonstrating just how moving her art is.

I don’t recall ever being affected by art in this way before. Philippa’s paintings really provoke an emotional response in me, and it is a privilege to have her illustrate my experiences with Mr Man.

Thank you Philippa.


When I looked at this beautiful piece close up it provoked a very strong emotional response in me. If you look closely you can see a girl standing behind the glass wall.

"Behind a Glass Wall" by Philippa King

Philippa displays her art in her blog Loaded Brush. Not all of her art relates to mental health, and some of her pieces are playful and funny. For a person who is knowledgeable about art it is easy to see who her influences are, including Van Gogh, Lucian Freud, and Francis Bacon. There really is something for everyone.

Genius or Madness? The Connection between Psychosis and Creativity

Part Three – To Treat or Not To Treat

We’ve already seen how psychosis can often be a positive experience for some people, and can contribute to creativity in various ways. We’ve also seen the enormous sense of loss that one feels when it has gone. Bearing this in mind, is it necessary to treat it?

For Mr Man it seems that it was; those friendly voices had long been replaced by the threats and demands of the unfriendly, which is what led to the discovery of his illness. Instead of telling him the next best possible move in a Chess game, or the solution to a programming dilemma, they would tell him he was stupid and worthless. Instead of helping him to be creative, he believed they were stealing his ideas. The voices demanded he continued to “work” for them, or they would kill his wife. Mr Man became more and more paranoid, depressed, and suicidal, and his illness became unmanageable.

So why is psychosis a pleasant experience for some, and an unpleasant experience for others? Why does that pleasant experience sometimes change, as it did for Mr Man?

I have no idea if there is currently any research into this area, but in my opinion there should be. It would seem that some people are predisposed to certain mental illnesses. This could be for a variety of reasons, including genetics or problems during pregnancy which effect the development of the brain. However, some people will not develop mental illness until a second trigger comes into play. That second trigger could be stress, trauma, or drugs.*

My theory is that some people who are predisposed to mental illness will go on to develop a “happy” kind of psychosis, but those who do not develop psychosis until a second trigger comes into play will develop a more “depressive” kind of psychosis. For those people who previously experienced “happy” psychosis; stress, trauma, or drugs could also cause them to develop a more “depressive” psychosis later on. Of course this is only a theory, and like all theories, needs adequate research to prove or disprove its accuracy.

“Taunting voices they are, never kind any more. When did that change?” - Catherine

Mr Man experienced “happy” psychosis since his teens, and thus was able to keep it to himself for over 10 years. In his late twenties he experienced the physical stress of suffering from Epstein Barr, and the emotional stress of trying to hold down a job while he was suffering from this virus, as well as extra burdens placed on him by his manager. It would seem that it was at this time that the nature of his psychosis changed and the voices became more threatening.

Hearing voices is often a traumatic experience for the sufferer

"The Words of my Voices" by Philippa King

There is evidence** to suggest that the longer psychosis is left untreated, the harder it is to treat. Bearing this in mind, and also the changeable nature of psychosis, should all those who experience psychosis be treated, even if it is a positive experience for them? I really feel that this is a moral question which I have no answer to.

Finally...

Earlier this year I received the following comment by Doctor Goober Modesty:

“There is a fine line between genius and psychosis. It is never spoken about in a clinical setting, seems like only on the Internet. From my view point, the Mental Health System does not know how to handle the genius in us persons with Schizophrenia. Here in Canada, namely Montreal, the Hospital started to invest in my genius slant through the arts... times do slowly change for the better!” – Doctor Goober Modesty

I have to agree that mental health staff often do not know how to handle genius. I suspect part of the problem is their inability to recognise it due to their own limitations, but if what is produced is linked to the psychosis then they may wonder if it is a good thing to encourage it.

Mr Man was often treated with little or no respect whilst on the ward, and yet he was undoubtedly more intelligent than the staff treating him that way. If they had looked into his little note book that he carried around with him, they would have seen a long list of zero’s and one’s and no doubt would have concluded that it was part of his “madness”, and yet a math professor would have instantly recognised that he was forming a code with the use of binary.

On the other hand, even if they had recognised the complexity of the code and understood the mathematical side of it, would it be right for them to encourage Mr Man to develop it, knowing that he was writing a code so that we could communicate without the “company” understanding us? Surely that would reinforce his delusional thoughts? Yet, isn’t art therapy encouraged in psychiatric hospitals? Isn’t that also reinforcing delusional thoughts for those who feel that they are “instructed” to paint or draw through psychosis?

It seems that the topic of creativity and psychosis is a complicated one with many more questions than answers.

Finally we arrive back at the original question: Genius or Madness?

You decide.



Special thanks to Seaneen, Doctor Goober Modesty, Philippa King, and Catherine


The mental health charity, MIND, is celebrating 60 years with the “Art - Making a Difference” or M.A.D Art Installation. It is a collection of work by mental health users and survivors and will be open to the public from Saturday 1st - Sunday 9th September 2007 at Draywalk Gallery, Truman Brewery, Draywalk off Brick Lane, London, from 11.30am - 7.30pm. Entry is free, and the nearest tube station is Liverpool Street. Click here for more information.

The “Frame of Mind” Art Exhibition will be displaying artwork of people managing a serious mental illness or brain disorder. It will be held on Monday 22nd October - Sunday 4th November 2007 at Wycombe Swan, High Wycombe, Buckinghamshire.

Philippa King will have pieces of art on display at both of these exhibitions.



*The Causes of Schizophrenia

**Wyatt RJ. Neuroleptics and the natural course of Schizophrenia. Schizophr Bull 1991; 17:325-351.

Genius or Madness? The Connection between Psychosis and Creativity

Part Two – Just Where Do You Come From?

As mentioned previously, psychosis and mania are not always bad experiences for people. Many people actually welcome these experiences, feeling that they are a source of inspiration.

Of course, feeling inspired by psychosis can mean different things to different people. For some it will literally mean that they feel that their hallucinations are informative in some way; for example, they may feel that their hallucinations are a form of apparition or vision; a religious experience. They may feel that they are being instructed on how to carry out a certain task. Others feel that their psychosis merely provides a “subject” for their creativity.

Hallucination or Vision?

"The Vision of Time" by Doctor Goober Modesty

Where does this creativity really come from?

Since hallucinations are a product of the persons own mind, the knowledge and the abilities must be their own. Mr Man believed that the voices instructed him on how to play Chess, compose music and how to solve programming dilemmas, but a hallucination can’t tell a person how to do something they don’t already know how to do, because it doesn’t really exist. To suggest otherwise would be to suggest that the voice is from a real outside source and not a hallucination after all. Although auditory hallucinations appear to the hearer to be from an outside source, it is merely a symptom of psychosis.

Some artists use their experiences of psychosis as a subject for creativity, and this can be a beneficial form of therapy

"Medication" by Philippa King

So what role, if any, does psychosis play in creativity?

Psychosis can aid creativity in two ways. As previously mentioned, psychosis can often provide a subject for creativity. The subject is compelling, and as Philippa explains regarding her own art “I could be creative without psychosis but it would not have the same edge to it”. Conversely, creativity itself can be an important outlet for those suffering from psychosis, and can be a beneficial form of therapy.

Also, delusional thinking often gives people confidence. The person could genuinely be a genius, and their delusional thinking could give them the confidence that they would usually lack to believe in themselves; or they could be lacking in talent, and suffering from delusions of grandeur which gives them false confidence. Either way, whether the ability in itself is real or imagined the delusional aspect of phychosis can aid self belief.

“I don’t know if my writing is any good at all and in normal circumstances I don’t believe it is, but I miss that manic self-belief.” - Seaneen

As mentioned previously, Mr Man also gained confidence through his psychosis, and felt that the voices were helping him with various tasks. It’s been a slow process, but Mr Man is starting to believe in himself now, and to find his own identity. I’ve already mentioned how he is becoming more involved in Table Tennis, and that he will be redesigning the website for his club. Having access to the internet means that he can share the computer programs he has written with others, and he has quite a little “fan club” of users who regularly ask him for the latest updates, so he is learning that his abilities are appreciated by real people. His music is something that has taken him a little longer to get back to, but recently he has started experimenting with that also.

But is it necessary to challenge the delusions of an individual? Is it necessary to treat someone experiencing psychosis? Why do some people have a pleasant experience with psychosis while others do not? These questions will be discussed in part three.

Next: Part Three

Genius or Madness? The Connection between Psychosis and Creativity

Introduction

For some people, psychosis or mania isn’t actually an unpleasant experience at all, and many people feel that it is a positive source of inspiration for creativity. I first came across this thought when I was emailed by an administrator for the 1 in 4 Forum about the website Intervoice. On the website reads the statement: “Many voices can be unthreatening and even positive” and Professor Marius Romme is quoted as saying “It’s wrong to turn this into a shameful problem that people either feel they have to deny or to take medication to suppress.”

The connection between psychosis and creativity is something I have been meaning to write about for quite some time. Here follows a series of three articles, covering topics relating to psychosis and creativity, such as the loss one feels when recovering from psychosis, identifying the true source of creativity, and covering questions such as: is treatment really necessary? And why do people experience psychosis in different ways?


Part One – When the Madness has Gone

Even for one whom psychosis has been a bad experience, the fact is that the process of recovery is a difficult one with many losses. The recovering person may experience feelings similar to those of grieving, and it can leave them feeling confused about their identity and their role in society. This is an important point to acknowledge when helping someone through this recovery process. For a creative person, the process of recovery can strip them of their confidence and leave them feeling insecure about their abilities.

Consider for example this interesting article written by Seaneen on “Pole to Polar – The Secret Life of a Manic Depressive”

As a creative individual recovering from mental health problems, Seaneen asks some very poignant questions: “Who am I now?” and “How much of my creativity is me, and how much is the illness?”

For Mr Man, the question “Who am I?” has also been a poignant one during his recovery.

Like Seaneen, Mr Man was more intelligent than his peers at school. His mother was told that he was “university material” when he was about 5 years old. Also, like Seaneen, he is a very creative individual; over the years he has composed hundreds of pieces of music. Amazingly though, he suffers from low self esteem.

“I love writing, but I have no idea if I am talented or if I am only any good when I’ve got that manic energy” - Seaneen

Just as manic episodes gave Seaneen the confidence to believe in her own abilities, psychosis gave Mr Man the confidence to believe in his abilities also. Through the whole of his adult life Mr Man has believed that he was specially selected to work for a “company” because of his level of intellect, and yet he believed that much of his knowledge and creativity actually came from this same company through the voices. He believed that he and they were working in partnership with each other, composing music and writing computer programs. He believed that there were others like him, and that his identification number was 4064. This belief has given him a sense of belonging, given him a purpose, and made him feel valued and appreciated. He has felt supported, almost nurtured, and felt that the “company” recognised his potential without him having to sell himself, which isn’t in his nature. It gave him confidence in his abilities, as he received confirmation that he was doing things the right way.

It’s been difficult for him to accept that there is no “company” after all. In accepting that the company isn’t real, he has also had to accept that what he believed to be the very reason for his existence isn’t real either. If there is no company, no special selection, then who is he? What is his worth? Does this mean that his creative work has no value?

This realisation has left him feeling confused and alone; how could he achieve all those things that he once did without the “company” to help him? Just as a creative person with Bipolar Disorder may wonder if they can be creative without mania, Mr Man was left wondering if he had the intellect and creativity to continue with his music and programming without the voices. Just how much was due to his own abilities, and how much was due to the “illness”?


Mr Man has suffered many losses during his recovery, but was it really necessary for him to be treated for psychosis and to suffer those losses? Just how much of his creativity could be attributed to his voices? These are questions that will be discussed in the following articles.

Next: Part Two

The First Three Weeks

Continued from “First Hospital Admission”
May 2002 – June 2002

There was nothing major to report during the first three weeks of Mr Mans first hospital stay. No one had any idea what Mr Man was experiencing and it was thought that he was suffering from severe depression. Mr Man did everything that he was asked to do; behaving as the model patient and joining in with all of the ward activities, but during the limited time that I spent with him I could see that really nothing had changed. My husband still wasn’t there, and it seemed that everything he did in the company of others was an act.

"Not as it Seems"

I cannot bear the silence
or the poorly held disguise
or all of this pretending
or the distance in your eyes

by Philippa King

Visiting times produced extremely mixed emotions for me; I missed Mr Man so much and I couldn’t wait to see him, but at the same time I hated seeing him so down and withdrawn. While I was there I couldn’t wait to leave, and yet every time I left it tore me apart to leave him behind. I just wanted everything to be back to normal again.

The stress of the whole situation was starting to take its toll on me; I had started taking antidepressants in the April, and my anxiety levels were constantly high. I was becoming increasingly forgetful; leaving shopping bags in shops, leaving my handbag in café’s, and leaving the car or house doors unlocked. I started going through a verbal ritual every time I left the house: “I have my purse, keys and phone. The windows are shut, I’ve locked the door. I have my purse, keys and phone. The windows are shut, I’ve locked the door” and I would repeat this to myself again and again as I drove away. Often I would doubt myself and I would have to turn around to make sure I had shut the house windows, or I would panic that I didn’t have my keys and then I would realise that if I didn’t have them I wouldn’t be able to drive the car! I was always able to produce a smile though, and not many people really knew what I was going through.

During this time the use of Monoamine Oxidase Inhibitors (MAOI’s) was introduced to Mr Mans treatment, which meant having to avoid certain foods such as cheese and other foods which contained Tyramine*. Mr Man wasn’t very happy about this; his diet was already restricted as it was believed that he was suffering from Coeliac disease at the time. Cheese is one of his favourite foods, and also he was unable to eat his favourite crisps because they contained cheese flavouring. The hospital was very good at catering for his dietary requirements though, and we were told that four weeks would be long enough to know whether it would be worth continuing this treatment or not.

Before his admission into hospital, I had always accompanied Mr Man on his appointments to see his Psychiatrist, and being in hospital proved to be no different. I was told by a nurse what day and time Mr Mans appointment would be, and was asked in the presence of Mr Man if I would be attending. We both agreed that I would.

They were very different to Mr Mans usual appointments, which were held in a small “office” type room at the local Community Mental Health Centre, and included only the Psychiatrist, Mr Man and myself. On the ward the “team meetings” as they were called, were held in a larger room, with armchairs and sofa’s, albeit scruffy ones. Several members of the ward “team” would be present, including nurses and Occupational Therapists. The atmosphere was an informal one with a strong sense of team work between the staff members present. In fact that sense of team work was so strong that to begin with I had no idea which one was the consultant. They would openly discuss treatment options between themselves, including various types of therapies, in front of Mr Man and I. They always asked how we felt about the treatments that were selected, and they made sure that we fully understood what each treatment entailed, providing information leaflets and often even suggesting that I do my own research on the internet, particularly when the MAOI’s were introduced and when the possibility of ECT** was discussed.

I have to say, the first 3 weeks of Mr Mans first admission was a very positive experience. The staff showed respect for the patients, and treated them the same as anyone else. Mr Man bonded with a couple of staff members there, and I really felt that if he could be “mended” it would be there.

Of course, this was a Psychiatric ward in a General Hospital, meant for short term stays. After a few weeks patients were usually sent home or moved on to the Psychiatric Hospital. The night before the team meetings we were approached by a nurse and told the “good news” that Mr Man would be discharged in the morning. Mr Man was obviously relieved, but I was very concerned; I knew nothing had changed.

That night as I drove out of the hospital grounds, distracted by my thoughts, I crashed into a plastic bollard. I had no idea what to do, but obviously I had to move it out of the road before it caused an accident. After moving it to the side of the road I parked my car again and then I went back for the bollard and carried it to the Hospital entrance. Just as I approached the main entrance one of the nurses from the Psychiatric ward was on his way out. As he smiled, curious to know what I was carrying, I burst into tears. I’m guessing he must have been used to emotional relatives as first admissions must be a traumatic time for any family, and he gently probed for the full explanation of my distress.

I explained to him how suicidal Mr Man had been and that I knew that nothing had changed. I explained how his involvement in ward activities was all an act, and that it was no indication of recovery. We must have talked in the car park for at least an hour, and by this time it was getting dark. He listened intently, asked questions, and took my concerns seriously.

The next day was the team meeting. The team actually asked to speak to me separately before Mr Man joined us, due to the report given by the nurse I had spoken to the night before. The Psychiatrist explained that she didn’t realise I had been on “suicide watch” for so long. It was obvious by what I had told them that Mr Man still had a long way to go in his recovery, but since the ward was for short stays only it had been decided that he would be moved on to the Psychiatric Hospital. I explained that I was supposed to be going away in a couple of days to one of our religious conventions, and I was strongly advised to still go. The Psychiatrist felt that I needed the break and the encouragement. Reluctantly I agreed.



*The combination of MAOI’s and food containing Tyramine can be dangerous as it can cause the persons blood pressure to rise suddenly.

**Electroconvulsive Therapy.

Next: "The Truth Revealed"

Untitled

I have shed a few tears tonight.

I have such a long way to go in explaining our experiences of when Mr Man was first admitted into hospital. After sharing just a few scant details on Mental Nurse of what Mr Man went through my memories came flooding back to me, and I have to ask myself if I will ever be ready to share our full story or if it will always be too painful for me to revisit.

As the tears rolled down my face I held on to Mr Man and whispered “I’m sorry”.

I’m sorry that I wasn’t strong enough to care for him at home. I’m sorry that I didn’t understand the system enough to know how to stop what was happening. I’m sorry that I didn’t take him away from there. I’m sorry that I didn’t demand that he be treated somewhere else. I’m sorry that I was too exhausted emotionally to take my complaint further after it had been swept under the carpet.

I am so sorry.

If I could give just one piece of advice it would be this: if you have any doubts at all about how your loved one is being treated, seek the support of an advocacy service and ask for a second opinion immediately.

I left it so damn late before seeking a second opinion.

The reason why I recommend contacting an advocacy service is because once I finally requested a second opinion, the consultant made no effort to arrange it for 4 weeks although another consultant only worked next door. This man continually played games with me; I felt so powerless against him and had no idea what to do. The next time I saw the consultant a lady from an advocacy service came with me and she asked about the second opinion. I don’t know what “special powers” these advocates hold, but she got results. An appointment was made for Mr Man to see the other consultant that same afternoon. He was prescribed anti-psychotic medication and it was the beginning of his recovery.

As Time Goes By

Thank you to Mslmgarner, who recently posted a couple of questions for me in the comments section. I apologise in advance if my answers cover things that you already know, but your questions are similar to those I have been asked in emails and thought a more in depth blog response might answer a few questions for other readers as well.

Mslmgarner asks:

“How long have you and Mr. Man been dealing with Schizophrenia?”

Mr Man has been dealing with Schizophrenia for a lot longer than I have. He has been hearing voices since his teens, but I didn’t become aware of it until June 2002 – a little over 5 years ago – even though we had already been married for nearly 5 years.

Mr Man wasn’t deliberately secretive about his symptoms. As is common with all sufferers of Schizophrenia, he didn’t realise that what he was experiencing was part of an illness. I know that sounds strange to most people; “hearing voices” isn’t usually considered “normal”, so surely if you started experiencing this you would question it… wouldn’t you? But when hearing voices is combined with delusional thinking, you get a person who has no need to question their own mental health; in their own mind they “know” where the voices are coming from, be that from aliens, a supernatural being, or another source. For this reason a person with Schizophrenia won’t consider it unusual that no one else can hear the voices; they simply believe that they have been “chosen” and you haven’t.

It’s not unusual for people with Schizophrenia to keep their experiences to themselves or for them to go unnoticed by others. They may even deny that they are hearing voices, believing that they have a special, secret arrangement with the voices. This was the case with Mr Man; he believed that he had been selected to work for a company. It was only when his symptoms seemed to take a more sinister turn that the burden became unbearable for him and he confided in me what was happening. By this time he was nearly 30.


Mslmgarner asks:

“How do you deal with his episodes in private and in public?”

Mr Man doesn’t suffer “episodes” as such, as his symptoms are always there. There are two areas of his illness that we have had to learn to deal with: the negative symptoms and the positive symptoms.

It seems that he first started suffering from the negative symptoms soon after November 1999. He was suffering from the Epstein Barr virus, so excessive sleep was expected, but as time went on he began to neglect himself more and more and everyone assumed he was suffering from severe depression. At one time Mr Mans negative symptoms were so bad that I had to wash and dress him, and he wouldn’t eat or drink unless the food or drink was placed in front of him. He stayed in bed for most of the time and became very withdrawn. Obviously being so withdrawn these weren’t symptoms that we had to deal with in public.

As he improved he began to dress himself although I still needed to lay his clothes out for him. These days he just needs prompting or reminding occasionally to change his clothes, but he still hates having a bath. I know it sounds strange but when he was younger he had no trouble with these things at all, but now he seems too preoccupied to think about such “trivial” matters. On top of that there’s the “security” of keeping the same clothes on, and the “insecurity” of having to sit naked in a bath.

As I said, these aren’t really things that require “dealing” with in public, but now that he goes out more these can obviously have an impact on his social life. I try not to stress him too much by demanding that he has a bath every day or two, but if he starts to smell I obviously need to do something about it. Thankfully for both of us, he’s really not a smelly person. I think he appreciates the reminders to change his clothes, as obviously he doesn’t want to draw attention to himself in public, but it’s just not something he gives much thought to.


I first became aware of Mr Mans positive symptoms in 2002 while he was an inpatient in a Psychiatric hospital. His symptoms were obviously very acute at that time and I had a need to understand what he was experiencing, so the emphasis was on talking, understanding, reassuring, and comforting. We spent a lot of time just holding each other and this was obviously in private and in public, as there was little privacy on the ward.

As time went on I learnt that I needed to challenge his beliefs and help him to be able to distinguish between delusion and reality. This wasn’t easy. How do you convince someone that what they believe as fact doesn’t even exist? And let me tell you, a person in the grip of delusional thinking can give you some very convincing arguments. After a while the word “coincidence” starts to wear a little thin.

These days it’s a case of providing a distraction. The reassuring and the challenging are still needed at times but mostly he needs activity to keep his mind occupied. Medication has enabled him to gain “insight” into his illness – in other words he knows that he is ill now and that what he is suffering are symptoms of that illness – but the voices persist and they feed the delusions, so it’s important to keep him distracted from what they say.

In public it’s more a case of support and reassurance, as the voices and delusions cause a lot of anxiety, particularly when with strangers. When Mr Man was very poorly he shouted verbal abuse at people out of the car window a couple of times, but my reaction was more one of shock rather than “dealing” with it! I just try to be a calming influence as best I can; getting frustrated or shouting at a person suffering from psychosis only makes matters worse.

So as you can see, the way we deal with his symptoms has changed over time, due to experience and also due to a change in the severity of his symptoms. I dare say things will continue to change for us as time goes by.

Under Pressure

My brother and his family live in Norway, and for the past four or more years he’s been asking me the same question: “When are you coming to visit us?”

As I’ve told him time and time again, I would love to visit him in Norway but Mr Man wouldn’t be well enough for the journey, and he couldn’t cope with being away from the home for more than a few nights, either in Norway or in a respite home.

Everyone keeps telling me how it would do Mr Man so much good if he would go - the fresh mountain air and picnics by the sea; it’s so tranquil – as if one trip to Norway will cure him forever. Now wouldn’t that be great? But back to planet Earth...

Until recently, getting to the part of Norway where my brother lives meant a long drive to Newcastle, followed by a ferry, followed by another long car drive, followed by 3 more ferry trips and car drives – about two days of travelling in all. Now that there is a more direct flight, we would “only” have to drive to Stansted airport which is maybe a couple of hours away, and fly for a couple of hours as well. That’s great. But Mr Man can’t stand being in the car for a couple of minutes, so how exactly am I supposed to get him there?

My brother recently sent me this beautiful picture of the scenery where he lives, and asked me the same question yet again, as if somehow seeing the view will miraculously make Mr Man well enough to go.


When will people understand that their “gentle encouragement” doesn’t help me to find a solution, it just depresses me? I’ve learnt to accept my situation the way it is, so why can’t other people just accept it as well? Why do they have to keep reminding me of what I can’t have instead of encouraging me to be grateful for what I’ve got?


I have the same problem with my family when it comes to babies. As I’ve explained before, when Mr Man and I married it was actually me who was the sick one. From the moment we married my family asked me nearly every week when we were going to start a family, especially my Mum. I would try to explain to her that I didn’t think we would be able to cope because of my health problems, but every week she would ask again and we would go through the same conversation every time. In the end I had to explain to her how painful it was for me to discuss it. I didn’t need persuading; I wanted a baby desperately, but I just wouldn’t be able to cope. She finally let it go.

Then of course Mr Man became ill too. We always said we would review the baby situation when we had been married for 5 years, but on our 5th anniversary Mr Man was an inpatient on a Psychiatric ward. He had been there for 5 long months and had attempted suicide 3 weeks earlier, and at that time I couldn’t imagine him being well ever again.

Strangely, I remember sitting with him at the hospital and out of the window I could see two metal brackets attached either side of a post for hanging flower baskets, and I thought how much it looked like a womb and ovaries. Empty ones. Barren. I would sit there every evening looking at the same sight. A constant reminder of my situation.

Of course, Mr Mans health has improved dramatically since then, and I have gone through various stages of remission and relapse. For a while we seriously considered having a baby, but for some reason we didn’t hear about this “well known fact” that Anti-Psychotic medication causes fertility problems until Mr Man had already been taking them for a few years. Despite being childless and of child bearing age, no one considered it important to tell us. We started going to a fertility clinic for investigations, but since I relapsed again we cancelled our other appointments.

It’s probably because we seriously considered parenthood for a while that I now have problems with my family going on about children again.
“You’re not getting any younger, it might be too late soon”
“Thank you Mum, I’m aware of that”
What exactly am I supposed to do about it? I don’t have a magic wand. I can’t make Mr Man well. I can’t make myself well. I can’t make us fertile.

So, as I said earlier:
When will people understand that their “gentle encouragement” doesn’t help me to find a solution, it just depresses me? I’ve learnt to accept my situation the way it is, so why can’t other people just accept it as well? Why do they have to keep reminding me of what I can’t have instead of encouraging me to be grateful for what I’ve got?

“Mad” or “Bad”?

In my new (and so far neglected) blog “Do I Look Like I Care?” I received a comment from a reader who calls herself Kim. Kim said, in part:

“Ann* is very unwell; she is a paranoid schizophrenic, and has not had her depot injection for 8 weeks. She is a real danger to herself and others, and is getting rather aggressive. She assaulted 2 nurses up at the local unit last week, they called the police, and the unit said they couldn’t have her as she was being violent and the police wouldn’t have her as she was mentally unstable, so sent her home. Now we (her friends) take turns looking after her, it’s one crisis after another, and we are all starting to fear for our own safety. We have contacted all the relevant people and no one will take any notice of us as we are patients under the same team. We are at our wits end, and getting unwell ourselves.

They won’t do anything until she puts an axe in someone else’s head or her own, by which time it’s too late. They will spend millions on a public enquiry, where if they had done their job properly no one would get hurt and would save lots of money.”

*Not her real name.

I feel this experience highlights two major problems which I have written about previously: the difficulty in accessing services for people with mental health problems - even for those who are familiar with how the system works; and also the fact that the responsibility for caring for such ones often falls on those who are neither equipped nor qualified to do so. But also, I can’t help but wonder if Ann will end up in a similar situation to Justin.

Justin is a young man suffering from mental health problems. He set fire to his flat and as a result was given a discretionary life sentence.

Slurry tells us regarding Justin:

“It was his mental illness which led up to the event. He was not being looked after by the CMHT very well at all. We (his friends) knew something big was going to happen so we rang the CPN many times in the week leading up to it. Never did they come and visit Justin or speak to him like they promised, then it was too late.

He does not do well in the prison system, as it’s the wrong place for a mentally ill person, and I am so bitter at the system which failed him and so many others.”

Now don’t get me wrong; I’m sure that there are people with mental health problems who are just as capable of breaking the law as someone without these problems, and being ill isn’t necessarily the cause of someone breaking the law. But in both of these cases, and many like them, the deterioration of the person’s symptoms were obvious to others, to the extent that friends feared that at some point the individual would take extreme action which would usually be completely out of character for them.

This point is important for two reasons:

Firstly, the general public wrongly presume that people with mental health problems are unpredictable and could go off on a murdering spree at any moment. The two cases above clearly show that if people bother to take notice, the warning signs are there.

Secondly, the CMHT were obviously unable or unwilling to act on the concerns of others. This is either because their resources are desperately lacking or because they don’t take the concerns of others seriously. My guess is that it is a combination of both.

So the question is: how many people are in prison because they have been failed by the Mental Health System? I know we often hear in the news about people on trial who have had a psychiatric assessment, and I’m sure that this is often an attempt to avoid the full penalty for their actions. But what about those who are genuinely ill, and who were well known to their local CMHT before the incident? And even neglected by their CMHT before the incident?

“Service users” are often seen as faceless objects.

"Faceless Care" by Philippa King