Psychiatric medicine and the demands of an ordinary life

I take three psychiatric medicines. They all work really well and I am extremely grateful to the drug companies for making them, and my psychiatrist for prescribing them for me. Clozapine keeps the psychosis down, Lithium keeps my moods on an even keel and Citalopram keeps the anxiety at bay. I also take Temazepam now and then to help me sleep. It’s a lot, but it works, and between them, and with the help of my psychiatrist and my husband, I am able to live a productive life.
In fact though, the more productive my life is, the more difficult it is to keep taking the medicine. What I mean by that is the side effects which don’t matter much if you are mostly on the ward, or mostly at home during the days, become intolerable when you try to live a fuller life with paid work.
Part of what is hard is not the medicines, but the regular appointments: psychiatrist, psychologist, social worker, specialized nurse, regular blood tests that you need to have if you have Clozapine or Lithium. If you’re not working, it’s good to get the structure that comes with regular appointments, but if you are working, that represents a lot of time out of your work day. The irony being that you’re only able to work because of the very structures that are keeping you away from work.
I don’t have the type of job where you have to be there all the time, and I also only work 16 hours a week so the time factor is not so important. What is hard for me is the main side effect of the Clozapine: super sedation. I don’t much like the drooling either, but that’s a minor irritant. But the sedation is serious. Recently I attended a conference in a nearby country, for my work. At conferences you stay in a hotel, you have to be “on” from breakfast time all through the talks of the day, maybe have a half hour rest then “on” again for dinner, getting back to your hotel room late, only to have to repeat the whole performance the next day, and perhaps the next day. It’s tiring for everyone, although also very invigorating if the conference is on a topic you’re interested in, with colleagues who stimulate you. But, taking Clozapine in the normal way, at 200mg per day, is simply not compatible with this.
Well, now and then I have talked with my psychiatrist on this topic and we have come to a tacit agreement that I can drop the dose for those days, as long as I get back to the proper dose as soon as possible. If it’s only 2-3 days it’s fine but longer than that I start to get a bit jumpy. It’s really hard to find the sweet spot between being drugged off your scone and not being adequately protected.

Why won't I get my blood tests done?

When you take Lithium you need to get your levels checked with a blood test every 6 weeks to make sure they're at the right amount. This is important because the difference between a good amount of Lithium, that's doing its job, and too much Lithium, that's poisoning your body, is very small. Also, if you're taking Clozapine, you need to get a blood test every 4 weeks to make sure it's not destroying your white blood cells, which it has a nasty habit of doing. When I first started on these drugs I diligently went to all my lab appointments and never heard anything back but assumed that it was all worth while because I had been told how important it all was.
But, I complained about it once or twice, to my psychiatrist, saying I hated going to the psychiatric hospital to get the blood tests done, because I don't like being reminded of my own condition by the sight of all the crazies and no hopers. Not a very kind attitude, I know. My psychiatrist suggested I get the blood test done at my GP's office instead. I asked the GP and they said they wouldn't do it, but I could get it done at the general hospital a million miles away if I liked. I said thanks but no thanks. Rather the crazies than an epic bike ride to the general hospital.
But I still wasn't happy, and after a while I just stopped going to the lab.
That was last August. Now we're in June of the next year, and only now does my psychiatrist notice that I haven't been getting the blood tests done. Well, I find this really annoying, because I always suspected no-one was looking at the results, and now I find I am right. He says he looks at them, but it took him a hell of a long time to notice I wasn't doing them.
So we got to this awkward impasse. I said, feeling like a sullen teenager, that I wasn't going to do it. He said, that's my choice but it's dangerous. He said, can't you get the GP to do it, and I said I have asked and they said no. He said, then go to the general hospital, and I said I couldn't be bothered. He said, really bending over backwards by now, that maybe I could get them done every 3 months instead of 4 weeks. Finally I reluctantly agreed to go to the psychiatric hospital and get it done there as I used to.
But ... why am I being so difficult about all this? Why do I care? I take pills every day, I see my psychiatrist every month, what is it about the blood test that so riles me?
I think there are two parts to this. Firstly, I have always suspected that no-one looks at the test results. In other words, I'm wasting my time, doing something I find unpleasant for no good reason. Actually I have proved that is the case. But now my psychiatrist has been shamed into looking at the blood test results again, why am I not more keen to get them done?
The second part is, the uneasy question that if I am so sick, why can I be relied on to get these tests done in a regular fashion, as I must if they are so important? My husband says, it is a question of empowerment: They empower me by putting their trust in me to get the necessary tests done. If they didn't trust me, they wuld be robbing me of my ability to live an independent life, which is so crucial to a sense of self, and sense of purposefulness when you have a mental illness. This is it: they entrust me with the power to run my own life, and this is why I have to keep up my share of the bargain.

Just say it

On the phone today my mum told me the story of a young man, Peter, the son of a friend, who had just spent 6 weeks in a psychiatric institution. I asked her, what's wrong with him, what's the diagnosis. My mother immediately became cagey. I said, is it schizophrenia? She said, she doesn't know. I said, probably a bit aggressively, haven't you asked him? She said, his mother (i.e. her friend) wouldn't want her to discuss it. I said, definitely aggressively now, how could this be helpful to Peter, to turn a blind eye to the thing that was almost certainly uppermost in his mind. I said, this time very aggressively, my own daughter has just had pneumonia, how is it that we are freely able to talk about that, whereas we are not able to talk about this young man's predicament – or, indeed, I didn't add, my own. I have schizophrenia, the illness that my mother cannot bear to name.
Of course , this conversation with my mother is more about me than about Peter. But Peter is still there, in the hell of a psychiatric ward, and there but for the grace (in fact, there even for the grace) of God go I.
What I really would like is my mum to be able to say the name of my illness, to be able to admit what has happened to me, to be able to say sorry for her share in all of this, and sorry for all this that was nothing to do with her. There is a lot to be sorry for. But until she is able to say out loud the name of my illness this is not going to happen.

What do you think of this?

Look what they've got on Facebook.
It's a quiz, entitled "What mental disorder do you suffer from?" The friend who did the quiz got the result Schizophrenia:
“Schizophrenia is a serious illness marked by psychotic phases of hallucinations and gross disorganization of thoughts. You're not just a disorder - you're a DISEASE! Your peers fear and hate you, and they also think you're a freak. You're severely ill and should go check yourself into the nearest mental hospital as soon as possible.”
I don't even know where to begin with how awful this is. I am completely revolted. Is that what people really think about schizophrenia? Really?

What do you tell your child about what's wrong with you?

What do you tell your child about what's wrong with you? Schizoaffective disorder can be thought of as a combination of schizophrenia and bipolar disorder, meaning that the main symptoms are psychosis (the schizophrenia part) and mood swings between depression and mania (the bipolar part).
For me, for the most part the Lithium does its work and I don't suffer much from either depression or mania any more. What I mostly struggle with is psychosis. So, if I'm having a psychotic attack, what should I (or anyone else) tell my daughter? She is 6 years old. I have had psychiatric problems since she was 2. She has grown up with my illness, so, in a way, she doesn't need to be told anything. On the other hand, I would rather we talked too much rather than too little about it. The worst case scenario in my mind would be that my illness could become a huge untouched unmentionable open secret within the family. A previous post discussed what to tell to a friend or acquaintance about your psychiatric illness. The issues there are rejection (they might be scared of my illness) or estrangement (not being able to be close to people who can't/wont accept the illness), or (what I forgot to talk about) labelling (people seeing me as ONLY my illness, not as a normal person with a problem that comes and goes). The issues for children are different. Children tend to take things on themselves, so I have always been careful to say to my daughter that it's not her fault, my illness is not because of anything that she has done wrong. I also tell her that when I go to hospital I will definitely always come back again. When I get admitted I always have her come to the ward so she can see where I am sleeping (not if it's a locked ward - I wouldn't want images of one of those places in anyone's head let alone a child's). So that's the physical aspects. But what about what exactly is wrong with me? So far, I have tried to explain that I have scary thoughts in my head that I can't get rid of, and that makes me cry a lot. The doctors give me medicine to help me get rid of the scary thoughts.
I have never known what or how much of this my daughter takes in – like lots of children, she is listening the hardest when she appears to be doing something else, like watching tv. But I had indirect evidence after the last hospital admission that she had been taking in and thinking about what I had said: I heard that she told her best friend and her best friend's mother that I was in hospital because I was having nightmares. I was really impressed with that. I thought that put it quite well.

Waiting lists

I have heard from lots of patients that they have been on a waiting list for a bed in a psychiatric ward, sometimes for weeks. I have never had to wait. If I have needed to go in I have always gone in straight away, often to a crisis bed. Why am I so lucky and others not? One time a friend of mine got very angry when she heard that I had got straight into the ward when her housemate, who had been making death threats to my friend and was obviously completely bonkers, was on a waiting list for a bed in the same ward I had just walked straight into. Why did I get the bed and not her? Well, thinking about it, lots of reasons. That girl, the one making death threats, was living in a protected house, with on-call psychiatric help, with a psychiatric nurse visiting at least once a day, and other forms of help readily available. I on the other hand was living at home with a very young impressionable child who could be badly damaged by having an overtly psychotic mother. I think my daughter is often the reason why I get the bed and the single guy living by himself, or the woman in the protected housing, has to wait. I think they are looking after the children. Or maybe I have just been lucky. Who knows.

What do you tell people about what's wrong with you?

This is really hard. Some time ago I decided on an open policy, where I just tell it like it is. If I've been in hospital I say so. If I'm on sick leave I say so. Most people don't ask what's wrong with me, but if they do, I tell them. For most people, acquaintances, I tend to say something like “I have psychiatric problems”. People either accept that and move on, or, occasionally, they ask more, which I am always glad to tell. I would rather people asked, and found out the truth, rather than used their imaginations on this topic.
But there are dilemmas. If you say, I have schizophrenia (or, to be precise, schizoaffective disorder), it is possible that people will think I have violent tendencies and may try to kill them or their children. If they are my employer they may find a way to sack me, or, as actually happened to me, to not hire me in the first place. But, if I don't say what I have wrong, none of my friends or acquaintances will ever understand why I come and go between home, hospital and work. Also importantly, they will never have a chance to learn what life is like for someone with schizophrenia, and they will never lose any false impressions they may have, and they will never actually learn something about serious mental illness.
I am not a crusader, I don't want to change the world, I just want to find my own place in the world and have as transparent and honest relations with those around me as I can. So – what do I tell people?
At a party last week, a friend of mine, a woman I have known for about 6 months, and become quite friendly with, asked me how I have been since she saw me last. I said, I have been in hospital for 2 weeks. She looked very surprised. I said, by way of explanation, I have schizophrenia. Her face said it all. Shock and dismay. She didn't say anything. Absolutely nothing. Her husband works at the same place as my husband, where I used to work, and where many of my friends work, plus she knows I have been in hospital before and have been on sick leave the whole time I have known her, so I assumed she must either already know or guess something of the sort. But no. She was truly shocked. Later during the party, I found myself next to her again, and I said I was sorry for having shocked her. (Why was I apologising?). She said no, she was sorry she had such a transparent face. That was all she said. Confused and hurt, I moved on.
So. What should I have said? If I hadn't said I had been in hospital, with schizophrenia, our friendship would never progress. We could never become close with this huge part of my life not to be spoken about. But when I told her, she was shocked and looked like she wanted no part of it. What should I do now?
The dilemma is this then: tell people, and risk this awful reaction, or not tell people, and never be able to share a huge important part of my life. I just don't know.