What you live by, what you die by, and who you go to for help…
What you live by, what you die by, and who you go to for help…
After reading a friend’s blog about her struggle with cancer, I’ve decided I can get a little more “real” with my own blog and bring it down to the emotional level, instead of just staying analytical.
About ten years ago I was struck with what I call “Late Onset Schizophrenia.” I say what “I call this” is more about being educated by and about my own disease. I’ve carried all of the diagnostic labels in the group, including bi-polar with psychosis and schizoaffective because the word “schizophrenic” is so so widely misunderstood, misappropriated, and misused that even doctors don’t want to use the word now. The term “psychosis” is equally misunderstood and misused. Most people, it seems, associate the latter with getting really angry and being hostile and antagonistic. For most of us experiencing psychosis, it is usually about feeling terrorized, scared, and full of uncertainty and anxiety.
Anyway, I said I would stay away from the stump speeches and hit home instead.
I’ve had another break recently. There have been more than I can count now. This blog documents them all in some form or another. Sometimes I am so afraid of my psychotic reality I won’t write about it, but when I do write about what I am experiencing, I can really bring the experience to life. At least I think I can, reading months or years later. Those epic, in-your-face posts, however, are few and far between.
I’m scared and my mom told me the other day she is scared for me when she dies. Mom is dying of Stage-four Lung Cancer and I’ve been her primary support. I will be her only caregiver. Hearing this from my mom really shocked me, and I had to leave her place because I was so upset. I was upset because no one I know has yet to express any real concern for me and my life and how I am doing. Mom must keep her fears tightly capped because she has never told me as much before, even though we had been living together for a number of years until recently and she has really, now, seen the worst of it.
I hate to show it myself, my fears. I don’t know where I will turn when my mom dies. She has been the only one to see me and support me and care for me. Although we’ve had our differences through the years, my mom has been my sole support in my illness. My brothers are present to some extent, but they aren’t around enough to really understand what I am like when I am sick, nor how to help me. And, really, there is no way to help me and this is exactly what doctors, nurses, and the sick already know. There is no cure, there is no panacea. There is hardly any research to that matter. They keep making new drugs, but they’re not much better than the old stuff. For the few who are really lucky, a shot of risperidol or some other drug may help, but for me, only time helps, and in the mean time, I sit and suffer through my symptoms — and it really is suffering. I hate psychosis so much.
But to the degree I hate psychosis, I also love my mom, so I am going to make a concerted effort to really be there for her, to show her who I am as an individual — something a parent may not see, something half my lovers have not seen, something I keep tightly regulated now. I only dole out my love now for, well, no one.
Maybe it is time for me to love again, and I’ll hedge my bets on mom being a good start.
After my harrowing adventures in Kansas (e.g., Three-fisted Punch) I spent the remainder of 2013 and most of 2014 experiencing psychotic break after psychotic break. I landed in the hospital in the Summer of 2014, when the cops were called because I was talking to myself on the street (well, I was really screaming to myself and the voices, making quite a scene). My break was complete this time, as I couldn’t stop talking to myself even in the presence of others. Hospital staff took note and I was oblivious. They started a Disability Application for me, and ushered me through the process as I sat unaware. I stayed for seven days, unconcerned. I’ve heard that the disability process here in the U.S. is quite long, where most of the time is simply spent waiting for your case to be heard by a judge, and I can verify this now through my own experience.
My case was finally heard in late March, with the Judge declaring in the hearing that she ruled my case, as they say, “Fully Favorable” since the date of onset – which was my November run-in with the Kansas State Troopers. It is from this date that the voices I had been hearing only during psychotic breaks has persisted even though the psychosis had ended. I have been trying a variety of meds thanks to my doctor, but none as of yet had impacted my auditory hallucinations. I’ve been out of work, also, since November 2013. It will take another two months before I am fully in the system, receiving payments.
Living with my mom now has helped more than I would have expected, and I enjoy the company after living so many years alone. Mom’s presence keeps me going to bed on time, eating three squares, and staying closer to home. I’m not sure why my writing has fallen away, but I suspect I’ll catch up here this summer with new tales of adventures and commentary on my condition and the Social Security system.
Thanks so much for following along.
So, these past two months my domain was down (unbeknownst to me) and I was psychotic (again) but I’m getting better answers now about why I keep tossing ill. WordPress was exceptionally helpful in my getting the domain registered again, so thank you WordPress!
By boring account, I was admitted to the hospital in mid-August, where I stayed for a week. During that time I’ve been signed up on government health care for the impoverished (Medicaid) and had to switch doctors. My last psychiatrist started thinking I may be bipolar instead of schizophrenic because of the odd nature of my recurrent psychosis and periods of full-functioning in contrast and the lack of correlation between my med compliance and recovery, or lack there of.
Current theory (since I had to get yet another doctor under Medicaid) is that I have Bipolar I with psychotic features which is to say, instead of being HIGH or super-productive, I just flip severe psychotic, blowing right past all the touted “benefits” of being bipolar. My cycle seems to be of the slower-cycling nature and, if I recall, the doc said this is harder to manage long-term. I’m now on a numerous meds to try and keep the next cycle from occurring, or to slow it down enough to catch. Not sure why catching it will help when the meds I’m on are supposed to prevent it altogether – isn’t that like saying we’ll use the meds you’re on to try to do the same thing? (That is to say, if it is prevented by the meds I am on, I won’t need to use the medications to bring me back down, and if the meds don’t stop the onset, we’ll use the same meds to try and squelch it.) Not being smug, but I’ll have to ask the doctor some more poignant questions, none of which I can ever think of at the time.
Since Thanksgiving 2013, I’ve gone psychotic three times, and if I count correctly, there’s been a total of nine cycles of destruction since the big block buster, two-year long psychosis I experience at onset.
The most frustrating aspect of this all is the stigma and the FALSE assumption that I must not be on meds if I am sick. Wrong on so many levels. To start, lots and lots of meds don’t work for people the first try, or even the second try. Second, that ONE TIME I was off meds doesn’t mean it’s my current behavior (truth be told, I was running my own experiment). Second, it doesn’t sound like this could have been better diagnosed. A pattern has to emerge, and, furthermore, there needs to be continuity of care.
My own experiment, eh? What’s that about?
In all sincerity, I thought I had this licked while–at the same time–I intuitively knew the meds weren’t working the way they should. Maybe it is better to say I thought it was over, that I was done with being schizophrenic. All of this, of course, is not ignorance or obstinacy, but denial. I just can’t admit to myself that this *may* be happening for the rest of my life. How do you plan for that? How do you plan on being totally incapacitated five to six months out of the year? You start buying a lot of art supplies, that’s what you do.
The continuity of care in our medical system leaves much to be desired. Initially I was on state-funded insurance, when I first became ill. When I became better and was able to work and get my own insurance, I had to move to a private doctor under private insurance. Even while on state care, my doctor changed several times. I finally found a private clinic with an associate Behavioral Health Unit hoping that someone would catch my symptoms and hospitalize me before something really really bad happened. Lucky shot there, for what resulted is that finally one clinic had notes for different events and they were finally able to see the full spectrum of behavior, from capable business woman to babbling fright. Although I changed doctors three times at the new clinic, they each read the prior doctor’s notes.
What has been helping also (and I am more than a little ashamed to say this) is that I’ve had my mom go with me to my appointments under the theory (more experimenting here) that the doctor would put more weight on what she said than on what I said, being a more-frequent observer of my condition. So, it helped.
And, while I say that, I’m banking on the new diagnosis and the fact I won’t go psychotic again (I know, denial) or that it won’t be quite as bad as last time (more denial).
She sat dismayed, staring out the window, shadows cast from stars and steeples. Dismayed with November, and who was to say she would not remember gazing at the shades of Southern-facing slopes in the distance, dancing in the sky in the way only mountains sway, slopping and dipping, turning and finishing with a snap in the sky. The source of her dismay was not the dismal scent of stereophonic traffic, it was the stammering and stuttering laughter, a nervous twitter of excitement, her excitement at the candid expression.
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:
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.
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.
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.
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.
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.
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.