Saturday, May 26, 2007

And On a More Positive Note…

My last post left me trying, unsuccessfully, to chase the Black Dog away for the rest of the day. Cinnamon Swirls didn’t fix it, and neither did driving up and down the dual carriageway at 70mph with Craig David damaging my eardrums. But when I picked Mr Man up from his table tennis practice tonight, all my sadness seemed to melt away as I listened to him enthusiastically detail his evening.

Mr Mans table tennis season came to an end last month with his team finishing in second place in division two and with him just narrowly missing third place for the average number of games won. Considering he had two relapses during this time (one caused by stress and the other due to a medication change) I think he did amazingly well. Next season he will go up into the first division.

Last summer he didn’t cope so well once the season had finished as he had nothing to focus his mind on, but I’m pleased to say that now his club have their own dedicated premises so they will be able to stay open for the whole summer. A summer league has been organised, which Mr Man is taking part in, and the premises can be hired throughout the summer for practice.

I am amazed at how well Mr Man is doing at the moment. When I think back to the beginning of the season, he didn’t want to mix with players outside game nights, and he often didn’t want to go to practice nights either. When he did go he only stayed for about 45 minutes. He started going more regularly when he started losing games on game nights! After a while he increased his time at practice nights to an hour and a half, mainly for my benefit, so that I would have time to see a friend for an hour in between dropping him off and picking him up. He started chatting more with other players, and at the summer league earlier this week he even exchanged numbers with one of them! His new friend text him today, and they arranged to go to practice earlier than usual, so he was there for two hours this evening. His friend can’t make it next Friday though, so they’ve decided to practice together on the Saturday!

I know this probably sounds like nothing unusual to other people, but to me it is a real breakthrough. Mr Man hasn’t interacted with others as well as this since about 2001.

He played really well tonight. Now that he is taking Citalopram he seems to be coping much better with his anxiety, and no longer needs to use Diazepam, so his reactions are much quicker. Tonight he outplayed a premier division player who won 85% of his games last season! Not surprisingly then, Mr Man has been asked to help out with coaching, which he has agreed to (and seems to be looking forward to), even though the summer league is on the same night of the week, so it will mean being out of the house for about 5 hours on that night! I asked him if he thought he would be ok, but he didn’t seem worried, he just said “Well if I don’t cope very well I’ll just tell the bloke who organises it that I’m not very well, he’ll understand”. This surprised me as Mr Man doesn’t usually like to admit that he is unwell, in case people ask what is wrong.

He has also decided that he is ready to play in two leagues next season, which will mean more nights out of the house, and he has volunteered to redesign the club website, and to update it weekly, so he has lots of things planned to keep himself busy and his mind occupied.

I am so proud of him. He has shown amazing strength and courage.

Friday, May 25, 2007

Coup de grâce


We lay in bed talking last night. Mr Man told me that the last time he met with his Dad he had asked him about his illness.
“What did you say?” I asked.
“I told him about the numbers thing. He asked me if the voices ever give me the lottery numbers!”
I laughed.
“I’m not really sure how much he knows about my illness” he continued.
“You could always direct him towards my blog, although I’m not sure how he will feel when he reads that I wanted to kill you!” I joked.
Then the conversation turned serious.

I never wanted to be without Mr Man, I just couldn’t bear to watch him suffer any more. He had already been in hospital for 6 months, and had come home no better than when he went in.

Recalling how I felt I started to cry.

I didn’t know how I could help him. I had let him go into hospital in good faith, thinking that the staff would care for him and make him well. In reality he had suffered more in their hands than at home. They called him a liar, mocked him, humiliated him, criticised him, cornered him and argued with him, obviously aggravating his already debilitating symptoms. The consultant was sadistic, and deliberately caused him physical suffering by keeping him on medication that caused him pain, but offered no relief of the actual symptoms. He was visibly amused when I tried to challenge him.

So many times I wanted to take him away from that place, but where to? What did I have to offer him that would make him well?

After everything he had been through I was relieved to have him home again, even though it meant 24 hour care. My friends tried to tell me that it was too much for me, but I wanted to do it. I showered him in love more than ever before, trying to make up for the suffering he had endured at the hands of the hospital staff. I felt I had failed him by not being able to protect him from them. My complaint went nowhere; the people at the top don’t listen to us little people.

Mr Man had harmed himself more often on the ward than at home. The only time he harmed himself at home was when I listened to their advice, and allowed him to go to the toilet on his own. I seemed to understand his illness better than they did, and yet I had no idea how to relieve his suffering; I only knew how to show him love and keep him safe. But that wasn't enough.

He continued to suffer, and at that time I believed that he would never be well ever again. I felt selfish; I knew he wanted to be dead, but I was forcing him to face his waking nightmare with no prospect of relief. I wanted to end it for him.

I could never have imagined that I would now be lying in his arms and laughing about his symptoms with him. I’m so glad that I didn’t follow through.

Related posts: Questions from Readers

Friday, May 11, 2007

What are you trying to say?

Today I was checking MyBlogLog, which lists the number of views this blog has had in the last 24 hours, what readers have clicked on, and how they found my blog.

One person got here by doing the following search in Google:

“Schizophrenia long winded letters”

Thursday, May 03, 2007

Medication Update

It’s been a while since I have written a full update on how Mr Man is doing and recent appointments and such. At the beginning of October I wrote how Mr Mans Risperdal (Risperidone) had been changed to Abilify (Aripiprazole) which he now takes in addition to the Clozaril that he has been taking since 2003. The change over period was a bit shaky, with Mr Man becoming quite paranoid and delusional, believing that our visitors were spies and questioning whether he was really ill or not. I had to keep a closer eye on him than usual for a little while, especially at medication times, as once he starts down that slippery slope of paranoia and delusion he is likely to start skipping medication secretly, which then of course leads to all kinds of problems.

It’s quite hard to gauge how much the Abilify has helped with Mr Mans positive symptoms as the changes have been gradual over a period of 7 months now. Also, for the two months before the switch these symptoms had worsened due to being on his own for two nights when there were no beds at the respite home, so to compare fairly with the Risperdal I would have to think back to over 9 months ago, which is quite difficult. It’s very obvious that the negative symptoms have improved now though and he has fewer side effects than before; he is usually more alert and less drowsy now, and his concentration is much better. In fact over the last 6 months or so he has accomplished a great deal and generally seems more motivated to engage in his hobbies. He has even talked about working again, and is keen to start his own web design business, although only if he can work from home and never leave the house!

I would also say that he is starting to interact better with more people now. Although he still can’t really cope with too many people all at once, he is definitely more willing to have company now and the list of individuals that he feels comfortable with is slowly growing.

One thing that the medication change hasn’t helped with is Mr Mans growing levels of anxiety. It’s difficult to say whether or not this problem still would have continued to worsen if he had stayed on the Risperdal, but the anxiety in itself isn’t a new problem. As I mentioned previously, Mr Mans CPN is taking this problem much more seriously now and last time he visited we talked about it at length. If only we had known more about anxiety when Mr Mans problems first started to escalate. We were using gradual exposure when we first started to tackle this issue, probably back in 2004, but Mr Mans anxiety suddenly and dramatically increased while he was out of the house on his own one day, and since then he hasn’t had the confidence to try it again. What we didn’t realise at the time though is that this experience is common and is known as the “anxiety burst”. Apparently, what we should have done is continue with the exposure, but at the time I didn’t know this and I was worried about pushing Mr Man too much and causing a relapse of his symptoms.

We saw Mr Mans Psychiatrist recently and discussed this ongoing anxiety problem. She decided to introduce an antidepressant called Citalopram, which is an idea that has been on the cards for a long time for various reasons but she felt that Mr Man needed to be more stable on his other medications first. Citalopram is the antidepressant that I take myself, and is well known for helping to control anxiety. Also, his Psychiatrist mentioned that it can help with “compulsive tendencies” as she called them, which is another problem that Mr Man has been suffering from. The most intrusive compulsive thought that he has, which is compounded by the voices, is that he feels he needs to continually add numbers together, such as 1 and 1 is 2, 2 and 2 is 4, 4 and 4 is 8, and so on, until he reaches 65,536. He always stops at that number and then starts all over again. When I asked him why, he said that there are 65,536 numbers that can be represented by 16 bits in binary. Now, binary is a concept way over my delicate little brain cells, but apparently it begins at 0 (zero) and the highest number in 16 bit binary is 65,535, which is 65,536 numbers in total including zero. I still don’t really see the connection myself, but it all makes perfect sense to him, and the more I said I didn’t understand the more detail he went into which confused me even more.

I can see why people say there is a fine line between genius and madness.

Tuesday, May 01, 2007

About This Blog

Today I have received the following comment from an Anonymous reader. I’m aware that other readers may feel the same way, and so I have decided to respond in a blog post.

It's really horrible how you people act as if being a schizo is such a terrible thing. I'm schizo and if I'd ever saw my wife writing in a blog like this because of my "condition" I would ask for a divorce.

I’m really sorry if the content of my blog has offended you in any way. Mr Man is well aware of this blog, and in fact encourages me to write it. Let me assure you that I have the utmost respect for Mr Man and I love him unconditionally. I am often amazed by his strength and courage, and I don’t view his “condition” as a weakness in any way at all.

I don’t know what your personal experiences are with Schizophrenia, but I know that some people view the condition as a positive experience, feeling that the psychosis inspires them to be creative. Unfortunately in Mr Mans case “being a Schizo” really has been “such a terrible thing” for him, which is something that I haven’t yet fully covered in my blog.

There are many reasons why I decided to put our experiences down in writing. One of those reasons is to make people aware of how badly mental health patients are treated sometimes, both by so called health care professionals and by the general public. Also, by reading this blog I hope other carers of people with Schizophrenia are strengthened by knowing that they are not alone and that things do get better.

I’m sorry if that statement offends you. I use the term “carer” not because Mr Man is a burden, but because there is no denying that he needs full time support. And I say “I hope carers are strengthened” because when the person you love is ill beyond recognition the pain is unimaginable. And I say “things do get better” as if things were terrible at one time, because they were.

This blog isn’t all about my own suffering though; I want people to understand what it is like for the person suffering from Schizophrenia as well. Whatever emotional pain I have experienced watching Mr Man suffer is nothing compared to the pain and fear that Mr Man has endured whilst suffering from these delusions and hallucinations. I think Schizophrenia is greatly misunderstood, and I hope that by writing this blog I can dispel some of the misconceptions that the public have. I want to raise awareness about the condition.

I also should add that although Mr Mans illness has been very hard for both of us to cope with at times, it has also brought us closer together, and in that respect it has had a positive effect on our marriage. I am aware that many marriages end in divorce when either the husband or wife suffers from a mental illness of some kind. I hope that my blog gives out the message that marriages can survive mental illness and that something destructive can be turned into something constructive.

Despite the title of my blog, I view Mr Man as a man (an amazing one at that) fighting Schizophrenia, not simply as “a Schizophrenic” with no other identity of his own. The reason why I titled my blog that way is partly because it rolls off the tongue easier than “The Wife of a Man with Schizophrenia” which seems a bit long winded. Also, although many of my readers are either sufferers, carers, or mental health workers, I hoped that the title would be punchy enough to attract “clueless” people who may learn something by reading this blog, and I’m glad to say that I have previously received comments which confirm that this is the case.

Once again, I sincerely apologise if my blog has caused you offence. I hope I have explained myself adequately. Thanks again for your valued comment.