Sunday, July 22, 2007


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.

Sunday, July 15, 2007

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?