Monday, March 30, 2015
Random Thoughts on Bipolar and the Inevitable
This post has been in my mind for quite some time. I put it off and I put it off and I wrote several drafts that I ended up discarding but I think it's time to have a frank disclosure about this.
It's very hard - if not impossible - to have a mature discussion about this. Believe me, I've tried many times.
It's hard to discuss death at the best of times. It remains the greatest fear of most people.
I can't say I've ever understood this. I came to terms with my mortality years ago in my twenties (now three decades ago). I worked in an industry where death was common and where I always worked a fast pace on the edge. You had to come to terms with the possibility of death or you couldn't do your job.
It was liberating. Free from fear of death I could live my life freely. I've known no shortage of people whose fear of death or some disease or disaster kept them in a cage and stopped them from living (and I could never show them the irony in this).
I've lived all my life with the knowledge it could be my last day and squeezed whatever I could out of it. This does not mean I became a daredevil (though I sought my fair share of adrenaline highs and rode a motorcycle for years with minimal protection at great speeds dodging in and out of traffic with no fear) but it does mean that I pushed myself all the time to get as much out of life each day as possible.
I've also never feared death because it is unavoidable. We can avoid and dodge many things in life but death is not one of them. Death is the inevitable outcome of life. So why fear the inevitable?
I've had countless brushes with death over the years, where a second this way or that or an inch or two one way or the other would have resulted in my departure from the living and these never phased me a bit. I have no philosophy on this. I am either here or I'm not. If I'm still here after a brush with death, then carry on, that's all.
For reasons too difficult to relate and under circumstances few have experienced, I had my first brush with the self-inflicted variety of death in July of 2010 when a psychotic episode took control of me.
For the first time I was scared. I went to a hospital, checked myself in and started the psychiatric merry-go-round.
Nothing the psychiatrists threw at me made a difference and in fact only made it worse. Many more episodes of psychosis, many more black pits of suicidal hell. They pumped enough drugs into me to numb me completely, leaving me so spiritually, emotionally and creatively dead that I then really did want to die. It felt for all the world that I was dead already so I felt that killing my physical body would merely release me from that cage.
After my last and most horrendous episode of psychosis on December 28th of 2012, I said "enough!" and stopped all drug and psychiatric therapy and started the research that led to the formation of this blog. I made a huge commitment to simply get as healthy as possible and work on it on my own.
However, I was in the grips of the The Mother of All Manic-Depressive Episodes (an absolute textbook manic-depressive cycle) and many more crashes, rapid cycling and two more hospitalizations would come in 2013.
At some point in all my research I found that bipolar disorder came down to two things - stress response (an extremely poorly understood part of our selves, something that I endeavor to make clearer in coming posts) and energy; how our energy is created at the cellular level. Stress response creates great energy (manic cycle), energy in the body and brain is finite, it burns out and we crash (depressive cycle). There are, of course, many added layers of important detail, but that's the essence of it (a good deal of this blog will get into those details and further establish bipolar disorder as a disorder of energy) and these two areas became the focus of my efforts to get better.
Back to energy shortly.
After I got out of the hospital in July of 2010, I started gathering material and reading up on bipolar. The best book I found at that time was Taming Bipolar which to this day, after all of my own research, I still find the best overall guide to anyone first coming to grips with it. Among all the information I found was the long term prognosis for someone like me; over fifty, Type I, rapid cycler, many cycles, lifelong undiagnosed and untreated - dismal.
I looked into many case studies going back two hundred years and the prognosis was all the same - dismal.
For whatever reason, bipolar burned out more people and ended more lives than any other psychiatric disorder - twenty percent of cases in my category ended in death by suicide.
This news was depressing in itself and I think became part of my battle from that point through to the end of 2012 but when I committed to battling my disorder on my own, I just thought "fuck that. That's not going to be me".
And in the ensuing two years I can honestly say that I've battled it harder and on more fronts than any other person I'm aware of in my category. If I'm remembered for nothing else, I'd like it to be for that (space and time are not going to permit me to fully outline here my efforts over the past two years and counting). Let me give it a rough outline though.
At various points over the last five years I have met the criteria for and dealt with - on my own - the following:
- massive depressive episodes (if I weren't bipolar I would have hit at various times all criteria for Major Depressive Disorder).
- major anxiety disorder
- social anxiety disorder
- approximately three years where I rated "extreme risk" on standard suicidal danger scales
- severe borderline personality disorder (which itself led to violent mood swings and brushes with suicide)
- enormous anger and rage issues (which sort of go hand in hand with bipolar disorder, especially in men, and in suicides with men)
- hallucinations and hearing voices
- psychotic episodes
- great personal losses
Outside of four (quite useful) group therapy sessions in late winter of 2014, I slew every one of those virtually on my own (no drugs, no doctors) with minimal emotional support (anyone to talk to who understood any or all of these things) though with a great deal of financial support from family and friends (all sorts of material and cash donations that paid for the Bean-mobile and other needs that made surviving a Canadian winter outdoors possible - make no mistake, I would not have made it without that help and support).
I did it with my Positive Difference Making Fundamentals, literally hundreds of hours of Music Therapy, my brain training games and massive, massive amounts of Mindfulness Meditation CBT that I self-administered (for months I did virtually nothing else all day every day but examine my thoughts - every one of them. Yes. Every. One. Try it some time. It's son of a bitching hard work, the hardest you'll ever do. But that's what I did for close to three months and still do to this day).
All of that and yet here I am. Again.
For the one thing I cannot slay is the issue of energy.
My body's collective cells and neurons have lost the ability to create energy in the normal way. Technically this is known as mitochondrial dysfunction.
If you want to an easy way to get an idea of how this works, take a leafy plant and paint the leaves with a light blocking material so that it cannot perform photosynthesis. You'll notice it begin to shrivel and shrink and die.
Mitochondrial dysfunction is not quite so dramatic - nor so readily observable. But make no mistake in how it sucks the life out of you. Energy IS life, life IS energy. No energy, no life.
I've understood this in great detail for about a year now (I wrote a highly regarded three part series on mitochondrial dysfunction, links at the bottom of the post).
There is no known effective treatment for it (despite some claims by charlatans selling their wares). What I discovered is that all you can do is a) not burn out the mitochondria any more than you have to, b) drastically reduce stress, c) rest as much as possible and d) eat as nutritiously as possible and get as much oxygen into your system as possible through exercise and fresh air.
Which is what I've dedicated the past year of my life to doing.
I cannot tell you how badly I just want to get better and get on with my life. I have no shortage of plans and goals and ambitions (number one being to get my blog completed and into book form).
But my never ending fatigue is like a vacuum I cannot escape.
There are days I'm so exhausted I feel I can hardly draw a breath. I feel so exhausted - and so fed up with being so exhausted and unable to do anything - that I do not want to draw another breath.
It's not so much that you want to die, it's just that you don't have the energy to live.
It's extremely difficult for one of great ambition.
And that's part of a bipolar person's problem - we cannot turn off the ambition, the desires, the dreams. It's the manic side of us.
I learned a year and a half ago how important it was to scale back any manic like thoughts, for even ambition burns out your energy.
But then I was left with nothing - and that led to a suicidal darkness in itself.
So I try to balance my ambitions, scale them back, reduce them, keep them as doable and as manageable as possible. This is very, very, very hard for me - my mind never stops producing ideas nor the drive to pursue them. A powerful aspect of bipolar - and this is part of where the manic drive and energy comes from - is the dopamine pathways and the nearly unstoppable drives these create. But I have learned to dampen these as well (deep meditation practices that "hack" the dopamine system at its wellspring in the ventral tegmantal area of the limbic system).
So I stick with my fundamentals, live one day at a time. Grind through each day as well as I can.
I am not unhappy (I am generally in a better mood and probably experience more happiness than most people). I am not depressed. I am not full of anxiety about the future. Every now and again I get hammered by pain of the past but even that I can mostly handle now (through massive letting go exercises).
But I cannot live without energy. NO ONE can.
And the worst part? No one has a clue what's wrong with you. To the outside I look for all the world as healthy as anyone on the planet. I look happy. I AM happy (for the most part, despite living in poverty and having no official home). So not only do you have to suffer this, there is absolutely no one you can talk to about it who understands.
I cannot live without energy.
So what to do? This has been going on and not improving for five years (though I am somewhat better than the absolute low I went through for three or four months to begin 2014).
I just try to keep committing to little time periods, get through this day, get through this week.
But five years. Regular readers of this blog should know that I go by the evidence, nothing else. And there is just no evidence that this getting better despite my doing everything possible.
And it's now that I finally understand those dismal prognosis and suicide statistics for long term type I bipolar sufferers over fifty - we simply burn out.
Anyway, this is where I am. I do not let it dominate my thoughts but at the same time it is impossible to ignore.
And so I think about it. When? How?
I've committed to try get through this year.
I remind myself that I went through the mother of all manic episodes two years ago and that the general rule of thumb for a manic episode that long and that intense is about three months of depressive cycle (which I now know is mitochondrial dysfunction at its core) for each month of mania. That makes for about a two year long depressive cycle.
So I tell myself that I'm not at the end of the cycle, to give it more time, that I'm doing everything right.
But then I get those days - for no good reason, I did nothing strenuous - where I can barely breath, where I can barely get around.
Where I can barely live.
Fought through another year for various goals and reasons. Getting worse - BGE, March 30th, 2016
Mitochondria and Fatigue Explained: