Schizophrenia As I Live It (audio)

A Voyage to Wellness

• Diana Dirkby

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Schizophrenia is a condition often shrouded in misconception, and it can be challenging to take the winding road to finding the right treatment. In this podcast episode, I delve into the personal relationship one must foster with their psychiatrist and the crucial role of accurate diagnosis. My novel "The Overlife: A Tale of Schizophrenia" echoes, in its character Sarah who narrates the novel, my real-life encounters with misdiagnosis and the revelatory moment when proper treatment began to turn the tides. 

#mentalhealth #mentalhealthmatters #mentalhealthawareness #schizophrenia #paranoidschizophrenia #schizoaffective #mentalillness #psychosis #depressionsawareness #fictionwriting #family #relationships #nomorestigma #fightthestigmaofmentalillness #letstalk #lookafteryourself #schizophreniaawareness #mentalillnessrecovery #mentalillnesstreatment #motherdaughter #brainhealth 

Pastime With Good Company by King Henry VIII, played by The Chestnut Brass Company 

Pastime With Good Company, composed by King Henry VIII, played by The Chestnut Brass Company

Diana Dirkby:

Hello, my name is Diana Dirkby and I live with paranoid schizophrenia. You are listening to my podcast "Schizophrenia as I Live It. Today, I am going to talk about my experience with antipsychotic medication. Finding the correct antipsychotic medication and the correct dosage is, in my opinion, an extremely delicate matter that can only successfully be solved by working with a very good psychiatrist. This has been my experience and I have seen this approach work well with other people living with schizophrenia.

Diana Dirkby:

Just to get it out of the way, let me mention that I have a neurological condition completely independent of my schizophrenia, and that is sometimes called mild epilepsy or petit mal or absence epilepsy, and that was diagnosed well before I got the diagnosis of schizophrenia. I was lucky to find a neurologist almost straight away who found a good drug for it, and it's pretty stable. It does happen that I have a seizure, so I don't convulse, but I lose consciousness. The reason I lose consciousness is this epileptic condition. It usually happens when I'm under a lot of stress and, as I've said in several of my podcasts, stress is one of the main triggers for my schizophrenia. Turns out it's also one of the main triggers for this absence epilepsy but the epilepsy is a mild condition compared to the paranoid schizophrenia with which I live.

Diana Dirkby:

Unfortunately, in my case, I was the victim of misdiagnosis of my schizophrenia for some years. Also, initially I did not have enough self-judgment to realize that I needed to go to a psychiatrist. I was at that point living on my own, so I didn't have anybody to say, hey, it's time that you went to a psychiatrist. It's a decision I had to reach on my own. The initial diagnosis was some type of depression, and I moved around a fair bit at that stage, and so I had a number of psychiatrists and they all made the same mistake thinking I had some form of depression and giving me medication for depression which didn't make me feel any better in any way, and in the end I stopped taking this medication because it simply wasn't doing me any good. I had a horrible withdrawal, but I felt better off the medication than on it.

Diana Dirkby:

Now, in the novel I've written: "he Overlife, a Tale of Schizophrenia, the character Sarah, who narrates the novel, also undergoes this experience of not getting the correct diagnosis for many years, and her experience is built on mine. As I've said many times, Sarah and her experience with schizophrenia are very close to mine. When I finally got the diagnosis of paranoid schizophrenia it was simultaneously from a wonderful psychiatrist with whom I'm still working, and a family doctor here in Alaska, where I am right now, who was very brilliant and took the time to listen to me and to tell me no, I really believe that you're living with schizophrenia, in which case you must take medication. So by the time that came, I had had many years without medication and what I came to realize were a series of horrible relapses of my paranoid schizophrenia, where I manifested the symptoms of paranoid schizophrenia but no one had been able to diagnose it and I didn't have enough self-awareness, even though my mother lived with the condition, to diagnose myself. In the end, I became convinced I'm probably living with paranoid schizophrenia. And that was just before I found these doctors who confirmed my suspicions and started me on the path to find a medication that would work for me.

Diana Dirkby:

That long story was the beginning of another long story, which was to find the antipsychotic that helps me to manage my schizophrenia with few side effects. I went through a number and some of them didn't help me at all with my schizophrenia but had some rather unpleasant side effects and finally it was actually my family doctor, and not my psychiatrist, who suggested a relatively new drug. When I saw my psychiatrist she said, yes, it's relatively new but it might be a good fit for you, since these other drugs are not a good fit, and this is one of the happiest times of my life when I discovered there was an antipsychotic medication that was a good match for me. I don't seem to have any of the side effects, and the drug is a tremendous help with my schizophrenia symptoms. Now, just so you understand, even though I'm now in this very good situation, I still have relapses and I still suffer from symptoms of paranoid schizophrenia. And when I go through a bad period, the way I'm working with my psychiatrist, still the same one that was so helpful in the beginning, is to adjust the dosage, usually to put it up and to leave it there until I'm in a better place. Married with that, I have a great psychologist who I talk to every week, no matter what's going on, and she helps me a lot with the stress and the objectivity.

Diana Dirkby:

I wish I could say that the antipsychotic medication prevents psychosis, but in my case it doesn't. However, what it does when given at the correct dose for what I'm undergoing at the time, is it gives me objectivity. It gives me the ability to look at myself and say I'm doing certain things because of my schizophrenia, not because of what's really happening in the world, and I need to correct that. So another wonderful thing that I have is that I live with my spouse. There's just the two of us and he's incredibly understanding and always does everything he can to make the conditions at home the best they can be, to give me the best outcome. So that is briefly my story.

Diana Dirkby:

I know there are people who manage to do without medication. They may still suffer some of the symptoms, but they prefer to manage them by staring them down, by saying, yes, I'm undergoing psychosis, but I know that and I'll do what I think is best to combat that symptom, but I'm not going to take medication. That may be because they've had a bad experience with the side effects. It may just be that they don't want to take medication. Still, other people will self-medicate in rather unorthodox ways drinking alcohol, smoking weed, eating special types of mushroom, something like that which is really kind of out there. Or they may simply say well, you know, I believe more in Eastern medicine than Western medicine and I'm going to meditate, I'm going to go to acupuncture and I'm going to do things that don't involve these antipsychotics, which, among a lot of people, have a bad reputation because of the side effects and because of the stigma associated with psychosis. Now, the only advice I will give in this podcast is that, well, it's not really advice, it's just something about myself. Let's think of it that way that the antipsychotics of Western medicine have saved my situation.

Diana Dirkby:

I was many, many years without medication and I know what it's like. many years without medication and I know what it's like, and I tried medicating myself to alleviate how I was feeling in a number of ways I'm not particularly proud of, and nothing worked for any length of time. So that's the only advice I would give is to really give antipsychotic medication a try. Bear in mind that the drugs are improving all the time. This is a very active area of research and there are new antipsychotic drugs coming out all the time and new research, and just because you have had a bad experience doesn't mean that you will always have a bad experience with medication. One thing that I did and it also helped a lot is over this whole period where I was having difficulties, when I was kind of on my own with it, without a doctor who could see what was going on, and without the began active treatment of my schizophrenia. I did a lot of research on my own.

Diana Dirkby:

Now these days doing research is a jungle out there because you know there's so much online and you don't know where to go to find the correct information. But there are websites like psychiatry. org. Again, just as I don't want to advise medication, I don't want to advise you where to go to get your information. The best thing to do is to ask your doctor what they would advise as good websites to go on to learn about your medication and learn about your schizophrenia, and I'm sure they'll be able to help you. The other way is to buy books. I mean, I've mentioned several times E. Fuller Torrey's wonderful book on schizophrenia. That's one source, but there are other books that you can get from amazon. com or from any bookstore that will be very informative about schizophrenia and what it is and the role of medication.

Diana Dirkby:

Now the reason that I don't want to talk about the names of my medication is it's not like having a headache. I can say, well, you know, if I have a headache, Aleve works definitely better for me than Tylenol, which is true, by the way. Just because drug X works very, very well for me doesn't mean it will work well for someone else. I learned that going to the support groups organized by NAMI, and there are a number of people always at each weekly support group living with schizophrenia who absolutely couldn't stand the drug I'm taking. They said it made them overweight, they had dry mouth and they couldn't sleep properly. And none of these are conditions which I've had, except dry mouth. I'm the same shape as when I began the drug and it actually helps me to sleep. I do suffer a little bit from dry mouth and I handle that with my dentist.

Diana Dirkby:

So if you're wavering, if you're either living with schizophrenia or you're living with someone who's living with schizophrenia, or you care for someone who is and you just don't know where to start. Then start to do a little bit of research. I myself prefer books to going online, but ask your family doctor, for example, what he or she would recommend as a place to go online to find information about schizophrenia. And buy yourself a few good books on the topic, for example, the book of . E Fuller Torrey Follettori So The the other thing that's very important is that medication can be fantastic for you, but if your living conditions are not good, then the medication may not be enough to help you. Now I've done several podcasts on stress being a trigger for schizophrenia symptoms and given a little bit of advice how to cope with that.

Diana Dirkby:

It's absolutely essential that you work on how well you feel where you live. You know, is it a stress-free environment? Are you appreciated? Are you given time to just rest when that's all you can do? And if you're living on your own, as I was for a long time, then it's easy to do your own thing, right, because there's nobody to tell you no, you can't do that today. I'm still much better off living with a supportive spouse than I was living alone, because he is an external set of eyes and ears able to see what state I'm in. I was getting all upset about something the other day and my spouse said you know, this will make you sick if you keep worrying at it. You know, just let it drop, for today it's really not a big deal and you know, comments like that can be really really helpful.

Diana Dirkby:

And so, whatever situation you're in, try to find a way for you to feel relaxed and appreciated and don't waste time on people who are eroding. If you have some friends or even some relatives who always make you feel bad, then just don't go and see them. Or, if you feel that's too extreme, maybe you can have contact with them in another way, over the phone. Or if you do have to see them, maybe you can cut the length of the visits down or talk to the rest of the family about how you feel and see if people can come up with a solution. But it's just a sad fact that there are some people who are very toxic. When you're battling schizophrenia, I mean it's unfortunate, but that's just the case. It took me a long time to learn to minimize my contact with people like that and not go running after them trying to explain oh no, I live with schizophrenia, but I'm this really great person, you know. You shouldn't have to beg anybody to like you.

Diana Dirkby:

So back to the medication. I hope, if you're listening to this, that you have had some good experience with finding correct medication. If you haven't, please go to your family doctor and a psychiatrist and work on this. I think it's really worth it. If you're not prepared to take antipsychotic medication. I still wish you all the best and hope that you find a way to manage your symptoms and to be objective, but don't put up with just feeling absolutely awful and snowed under by your schizophrenia. There are ways to alleviate the symptoms of schizophrenia, as horrific as they are, and please take advantage of them. Okay so, thank you for listening and I'll talk to you in about a week. Bye-bye.