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.

Shedding a Light on Stigma

6ghZ86KLiving with the stigma of Schizophrenia is pretty daunting. Trying to date and talk openly is impossible. Sharing your condition with co-workers is unthinkable. Even talking to family and friends can lead to off-the cuff and insensitive remarks. I feel like I carry with me this huge secret, and I don’t like that feeling of living a double life – the life inside and the life I present to others. Having to constantly monitor my words in every facet of life is nerve wracking. I just smile and laugh, but in reality, the hidden truth weighs heavily on me.

Stuck in this feeling, I wrote the President asking he make a National Awareness Day for Schizophrenia – you see, in America, there is none. Schizophrenia is the second leading cause of disability here, but we don’t even acknowledge its existence. I thought perhaps shedding a light on this and related illnesses at the National level could help garner support for my own personal cause and the plight of many, many others who struggle with symptoms daily.

I took the time to write President Obama about this lack of National Awareness. While I was out and about, dating and enjoying the summer sun, I completely forgot I had sent the letter. Then comes in the mail, this huge package from the White House. In response, he sent me a printout of his recent proclamation declaring May National Mental Health Awareness Month. Though not exactly the win I was hoping for, he clearly heard me – one little voice among so many. I’ll keep trying!!

Obama

Cigarettes and Smoking Spells

They are teaching me how to smoke — not just light up and inhale like the neighbor kid taught me — but to use a cigarette as a magical tool. Smoking is a sacred act, a secret act. I am being taught how to smoke so that I can share the knowledge, not to become a smoker as an end in itself.

There aren’t just the smokers, there are categories: there’s the smoking smokers, those who smoke people with their magic cigarettes. There’s the non-smoking smokers, those who smoke people by other means. The non-smoking non-smokers are the most peaceful, or conversely, those who have smoked so many they are no longer allowed to smoke. I fall into the final category: the smoking non-smoker, for I am learning how to smoke, so my cigarette is nothing more than tobacco and filter. A benign habit.

The smoker will always smoke on the left side when smoking someone. I hold the cigarette away from the body to keep the effects as far away from me as possible. Every action while smoking can take on meaning, but there are some universals.

Throw it down, crush it, I want no part of this.

Toss it out the window and let the life burn to its natural conclusion.

One crush…

Two crush, three crush, four. Each has significance. Since I am learning still, I put out the ash instead. Poke. poke. poke. poke those cinders away. I am not ready to crush my opponents, my foes, my enemies. I’m not allowed to smoke them until I’ve matured, until I’ve become a magician myself.

 

Delusions Versus Voices: A Quick Distinction

I’ve had two delusional episodes since my initial break in 2008. Though I haven’t fallen into deep psychosis since my first break at the age of 37, these delusional episodes are completely disruptive of my life. These episodes are different and distinct from my “new” average daily life of hearing voices.

The voices themselves don’t bother me, whereas the story lines of delusion do. The voices I can disregard through diverting my attention, concentrating on anything from music to reading or surfing the internet. Conversely, delusions are invasive, pervasive. Listening to the voices alone is interesting and I think it is exactly because I can tune in and tune out. Like listening to an overheard conversation in a cafe, someone may be saying something funny or obnoxious, and not knowing what you will hear is a part of the interest.

Delusions are no more predictable than voices, but for each person there is often on on-going theme. For some it is religious, as in institutionalized religion. For others voices are spiritual in nature — ghosts or angels, spirits or demons talking. The altered senses may be  extraordinary perceptions for others. The story line of my delusions centers around magic, magical beings and disembodied persons who speak through me.

Delusions are separate and distinct from the hallucinated voices. Webster and the DSM would have us believe that delusions are “a belief in that which is not real”. I would say they are more akin to a personal experience so extraordinary and intimate it is doubtful anyone else could relate (except, perhaps, in fictionalized narrative story form). I’ve come to believe anyone would have my same reaction to what I hear and feel during my delusional cycles. It’s in the hearing 24/7 that makes you believe it is real. You simply cannot escape.

My anxiety level reaches top notches when I am delusional, based again on what I hear: the world of magic seemingly rests upon my shoulders, it is a fight between chaos and order (not good and evil, per se) and only my day-to-day actions and habits can help those disembodied souls and spirits who accompany me. Twice now I’ve had this experience since my diagnosis in 2008, with the same results: I become enveloped in an impenetrable, mysterious world and not much in this reality matters. Luckily I’ve managed to keep my job though these episodes.

This is not my personality — being some extraordinary savior — before psychosis set in. That’s delusion. I have to laugh because it all sounds so absurd when I far away from in, grounded in common reality. When “in flight” it is such a disparate reality, that I try to reconcile in my mind because it is at complete odds with my reality. “How can this be true?” See, it feels so real.

Are my extraordinary perceptions real? They sure feel that way when I am in the thick of it. Should I make changes in my life based on what I hear? What can I do to make a difference in my life, make a difference for these lost souls?  I think these are questions every schizophrenic must deal with, and since the delusions never stop for most, our behaviors become erratic and disconnected from any thread of consistency, making us seem, well, mad.

The voices I tend to believe the beings behind them are real, while I don’t take their words too seriously. For delusions, it is the opposite: I don’t take their personalities too seriously, but their stories are deadly real to me. At least until the meds kick in again. To me it seems there must be different mechanisms for delusion and auditory hallucinations and I can see why outside observers can’t distinguish between the two. It’s even too hard to describe from the inside out.

In essence, I can choose what I believe to think about the audibles, but for delusions, when I am in that space, there is no choice: I believe and I am encompassed.

Diagnosis, Anyone?

Option G, "Stella Starr"
Option G, “Stella Starr”

My illness is littered with what the doctors like to call uncommon traits, denoted intentionally as being “less than rare” but not unheard of for a diagnosis of schizophrenia, notably my age and the speed plus the severity of onset.

The age of onset for me was 37, which is not formally considered the “late onset” schizophrenia that occurs after the age of 40. Schizophrenia can occur at any age but there are two peaks for women: the late 20s and menopause in the late 40s. (Note, the age of onset is earlier for men and they don’t have a second peak.)

Signs and symptoms leading up to psychosis, referred to as the prodromal phase, can often be seen months or years in advance in most traditional cases. The symptoms I expressed prior to my psychotic break appeared approximately the week before and not previously in waves or in the traditional slow decline most commonly seen in schizophrenia.

Also, the severity in which psychosis struck me was notable. Now, some people get annoyed with the use of the word “struck,” claiming illnesses don’t actually “hit” people. I will tell you from personal experience, when the solidity of reality falls away overnight, it does feel as though you’ve been hit by an overwhelming and unimaginable force. I was instantly debilitated, unable even to read words.

Because of these two factors – my age and the severity of onset – I was given a positive prognosis for recovery. This seems counter-intuitive, but my recovery has been more than even I thought possible, though not less than I had hoped. I have returned to work and most of my faculties have returned to their near-previous states. What remains for me, the auditory hallucinations, seems insignificant to my psychiatrist now, who says what I experienced was not schizophrenia but a singular incidence of intense, long-term psychosis. Hence, I now have the diagnosis of Psychosis Not Otherwise Specified (NOS).

By the Numbers

Inspired by PurplePersuasion’s blog, I’ll post my own numbers from the time I became sick four years ago:

  • Age of onset–37
  • Day I became floridly psychotic–May 17th, 2008
  • Days elapsed between onset and admittance into the hospital–333 – seriously
  • Days spent floridly psychotic–425 (estimate)
  • Number of psychiatrists seen–seven
  • Number of hospitalizations since onset–two
  • Total number of medications prescribed–16 (four anti-psychotics, four anti-depressants, four anti-anxiety medications)
  • Current dose of medications–30 mg Aripiprazole, 1 mg Lorazapm (both pm)
  • Average cost of medications per month–$61.50
  • Cost of medications per month in the U.S. if I didn’t buy them from India–$967
  • Cost of doctor visit–$45
  • Number of daily vitamins–four (Omega 3, C, B complex, Multivitamin)
  • Average amount of sleep per night–nine hours
  • Average number of hours worked per week–35
  • Number of jobs (including volunteer) held since onset–five
  • Number of years until I felt myself again–pending

I pass the torch to NetGuru. Maybe he will share his numbers.