Five Tips for the Newly Diagnosed

I’m no doctor, but I can tell you what I did that I think helped me through my recovery. Granted, I have a couple of contributing factors that – as I am told – made my prognosis more positive than the outlook may be for others. This includes:

  • Late onset, at the age of 37
  • Being female
  • Rapid onset

With the plasticity of the mind, I think my age helped, since my brain knew more about being in a common experience. Also, females tend to have a better prognosis, overall. Finally, I am told that those with rapid onset also tend to recover better (not necessarily more quickly). My psychotic break was “Severe” by the four-point scale my doctor used (Mild, Moderate, Severe, and Very Severe). It took me well over a year, however, to suppress the worst symptoms through the use of medications.

I think getting sick as an adult also has advantages, because I approached my illness and recovery with a bit of experience that simply comes with life. When I hear about others struggling to get their symptoms under control, my heart go out to them. It is such a harrowing experience.

I hope these five tips help someone find peace sooner, rather than later.

Address the worst symptoms with your doctor

Only you know what is debilitating to you. Talk to your doctor about all of your symptoms, yes, but try to be clear on what is the worst. Is it the voices? The delusions? The ability to concentrate? They may not be the most prominent symptoms, but what feels the worst or makes you feel most debilitated is what you’ll want to get under control as soon as you can.

Be patient and consistent with medications

Now this is purely anecdotal, but from my experience, the medicine I was most patient with was the medication that provided the slightest relief to my worst symptoms, as described above. At first I measured my progress day by day as I began to feel a tiny bit better. I stuck with the medicine that provided me relief from the worst of it. As always, however, follow your doctor’s advice.

Concentrate

While the meds were still working their magic, I found relief in deep concentration. What exactly does that mean, however? I focused on putting all of my attention on one thing for as long as could. What I chose to do was taxes as a volunteer for the IRS through the VITA program. I spent eight hours a day, three days a week doing nothing but number crunching. (Don’t tell anyone I don’t think I did a very good job, and I couldn’t manage more than the 1040EZ.) I think the trick, however, was really engaging my mind. While I realize not everyone is interested in this type of work, I can think of a few other things that are similar, like detailed drawing, mechanical work such as rebuilding a carburetor, learning to play the guitar, etc. Find something that interests you and really engages your attention.

Learn how to use your PRNs

With your doctor, discuss what medications you have and how best to use them should you be experiencing a surge of symptoms. A PRN is a medication you can take “as needed” like anti-anxiety pills and even an extra dose of your anti-psychotic. Had I known I could have taken my anti-anxiety pill when I was most anxious, for example, instead of in the regularly scheduled a.m. and p.m., I think I would have been more comfortable in the early days. A good conversation about how to use your meds to your advantage will go a long way in managing symptoms.

Exercise

I know we know it… exercise is good for the body. It’s also good for the soul and the mind. In addition to helping you avoid the most common side-effect of medications (weight gain), exercise will help you sleep, which is the next best thing to meds that do their job.

Unpacking Voices – The Long and Short of Hallucinating

For anyone who doesn’t know, I tweet my what I hear when I am hallucinating voices under the username @ClearlySZ. I get interesting questions often, and sometimes I get questions I can’t answer in 140 characters.

Have you always been aware that you hallucinate? Normally one symptoms of psychosis is lack of awareness.

Well, there is a lot to unpack here, far more than a tweet can handle, so I’ll dissect this is parts as well as I can with my lay-person’s understanding.

Hallucinations

No, I have not always been aware that I was hallucinating. When I had my first psychotic break it was a rapid (instead of a progressive) deterioration, which is to say the prodromal phase of my illness was very, very short: weeks, if not days. I eventually came to understand I was hearing things, but that was a few months into it.

Psychosis is often associated with agnosia (lack of insight) but my neurobehaviorlaist has corrected me in saying that my condition is accompanied by a form of this called  anosognosia. Agnosia proper is often correlated to brain injury whereas psychosis entails a varied form of this. Anosognosia is the inability to gain feedback about one’s own condition. So, while one might be aware in some regard that he or she is experiencing hallucinations, for example, at the same time he or she may have no insight into other aspects of his or her illness, like delusions.

While I became aware that I was hallucinating in the early stages on my illness, I was still incapable of recognizing I was not well, that something was wrong with me. I could recognize parts of my experience as being new or different, I could even say I was hallucinating, but I couldn’t recognize that I was incapable of functioning. I became aware something was “wrong” through a short deduction that, since I wasn’t working – something I had done my whole adult life – something must be wrong. It was then and only then I sought help. Indeed, this is extreme.

While anosognosia is indeed often a part of psychosis, it is impossible to predict what one person may or may not be privy to when their experience is altered. That is to say, each person is different with regard to how much “insight” he or she may have into their illness, or which symptoms they recognize as not being a part of the common human experience.

Psychosis vs. Psychotic Features

Auditory hallucinations in schizophrenia are considered “psychotic features” of the illness, or part and parcel of the whole illness when it manifests. Hearing voices in and of itself does not mean one is psychotic, nor even schizophrenic, according to current diagnostic criteria (correct me if I am wrong).

At the moment I am not psychotic or delusional. I am simply hearing voices. I hold down a full-time job as a project manager and technical writer and I am also enrolled in graduate school. Were I psychotic, I would be running the streets in fear. So, while I am tweeting, I’m sane, sitting there listening to my fridge (as insane as that sounds) in my normal consciousness that I experience like you experience, only with the addition of the audibles. I’m not loopy, bat shit crazy, or otherwise impaired. In fact, were you to talk to me on a normal day, you would never know I hear voices.

Medications

I recently blogged about my own experience with playing doctor and tinkering with my meds (A Balance Between Clarity and Calamity). I think it is something anyone does with a chronic or debilitating illness, not out of ignorance or stubbornness, but perhaps more out of denial. It’s hard to accept that if one pill makes you feel better, that a few pills won’t cure you and voila! you are done. That’s our common experience of illness, right? One dose of Tylenol® and you feel better. A course of antibiotics and the cough is gone. Schizophrenia doesn’t respond in that manner and for me, for example, it took months and months for my symptoms to come under control. Just under control, not disappear. For many, the medications don’t completely eradicate all of the symptoms, hence the high disability rate for people with schizophrenia. For me a lingering symptom is the hallucinations, but I function well enough to work otherwise, for I have the ability to tune out my auditory hallucinations when I concentrate. This is not possible for many people.

What do medications do, if not cure me?

Medications keep me from being psychotic, or breaking from reality (a very insufferable condition), and they help me return to what I’ve known all my life as my natural ability to focus, concentrate, and think clearly.

Now, do I know they are not real? These Voices?

Well, I know they don’t have carbon bodies attached to them.  I don’t follow what they say as if they were commanding me. I do hear a real sonorous quality that I think any person would associate with a person’s voice. I do hear real words, which I tweet. Now then, are they real? Technically, I am told it’s all misfiring of the brain, or perhaps in the more recent literature, pathways in my brain that are normally dormant become active and brain imaging would show that my mind is responding as if I were hearing real-life people talking. In any event, how it is I come to hear what I hear in addition to what’s common to all of us, I’ll have to the leave the explanation to a PhD.

Do I know there are no beings behind the voices?

That’s probably the better question. I would lying if I said I hadn’t entertained what these voices mean. It’s a weird experience, quite like talking and listening in real life. When I think and feel, the voices respond appropriately. Their message is almost always contextually based, which makes me wonder about the nature of the mind, the brain, and experience. If this is some errant process that has gone haywire in my brain, it’s quite interesting to experiment with, indeed. But, I have to admit, their message has me wondering if somehow in whatever happened to me was that a veil between the life I know and some reality I don’t know was drawn aside, leaving me aware of a new reality altogether.

Perhaps this is where people often confuse delusion with simple conclusions drawn from experience, the difference being I can choose to play with the audibles – my experience – I can choose to think about them in any way I like. With delusions, for me, the beliefs are fixed until the meds kick in. That’s another blog post topic, for certain.

A Balance Between Clarity and Calamity

Well, this summer is blowing by. With all the social activities I’ve been involved in, you would think nothing at all is wrong with me. I’ve been feeling well, clear headed, and energetic. This is indeed a bonus not only for my personal life, but my work life as well. The solution, for me it seems, has been reducing my meds to 15 mg of Abilify – down from the prescribed 30 mg. I feel like I am playing with fire, however. The dose is not enough to suppress the audibles, but enough to keep me cognitively clear enough to focus at work and then come home and have energy for the basic tasks of life.

30 mg, even 20 mg, drags on me so that I sleep when I get home from work and I don’t have the energy for anything more. Nothing gets done. Bills go unpaid, dishes pile up, clothing is strewn about. Now, on 15mg none off this is true. My little pad is tidy, maybe not spotless, but at least I have the wherewithal to start projects and slowly finish them over the course of a few weeks.

My neuro-behavioralist told me that anti-psychotics are powerful sedatives. I don’t think most people realize this. I know I didn’t, but boy do they pack a whollup. I don’t mind hearing things at all, so long as I am not delusional. Finding that balance between clarity and symptoms has not been an easy solution to happen upon. I admit I’ve played doctor with my meds – sometimes going off, sometimes running out – in an effort to find this optimum spot that reminds me how I used to feel, how I used to perform before adult-onset schizophrenia.

Sometimes it feels like I am chasing ghosts, and ironically, other times it seems like I am amidst ghosts, listening in on ethereal conversations. I am happy, though, all in all, and I am quite content with how I am feeling. Now if I could just get my closets organized.