Lost on the road to God knows where. — Out Here in Paradise

Sculpted by Donald Wilson 1982

I’m lost on a road to “God knows where.” Feeling scared. Uncertain. It’s my story right now, and I’ve good reasons for my emotional state. It’s not the first time in my life I’ve been lost or overwhelmed by circumstance. There’s no doubt my situation is difficult, and solutions to my problems seem beyond my current […]

Lost on the road to God knows where. — Out Here in Paradise

Two years ago I wrote the above blog entry in my other blog “Out Here in Paradise” and re-examining some of the issues with which I was ensnared at that time have shown that progress is possible, even given serious and intractable problems.

Mine isn’t a new story.  My health is not good, and is deteriorating over time.  It is responding to my focus on trying to find a solution to my worst problems, and a way to cope with the things I won’t be able to control.  My financial situation is a disaster, brought about by a series of mistaken steps, all of which seemed to be the correct decisions at the time, but have left me in serious debt, absent an income on which I can rely, and quite uncertain as to the potential for even basic survival, under my current situation.

Lost on the road to God knows where. — Out Here in Paradise

Two years ago my health was a lot worse than now. At least it seemed so at the time. I had just got out of the hospital where I was extremely ill with pneumonia, with a new diagnosis of COPD, to go alone with my diabetes and chronic arthritic and neuropathic pain. I didn’t know it then but I also had the classic symptoms of fibromyalgia at work. I had a lot of good reasons to be depressed, just based on my health, not to mention a lifetime of fighting with bipolar depression even since my twenties, more than forty years.

So that was where I started to fight against continuing to fall down the Rabbit Hole, and started this blog, where I’ve largely focussed on discussing my attempts to improve my health and the quality of my life by taking intentional control of those things I can control.

If you follow this blog you will have read about my struggles with my medications, and coming to an understanding of how they interact with each other, and have many side effects, some of which still plague me.

You have seen my excitement of discovery when I read Dr. Jason Fung and realized that I can take control of my diabetes by making significant lifestyle changes, including intermittent fasting and radical reduction in the amount of carbohydrate in my daily diet. I came to realize that exercise every day is important, just not exactly for the reasons that I thought. I’ve lost a lot of weight on this journey, with the result being an increase in energy, a renewed sense of hope for the future, and a continued plan to improve matters further.

I’ve written about my challenges with my marriage and how we have evolved to a new set of understandings that allow for the possibility of staying intimate friends, while perhaps moving to a new description of our relationship. In our new relationship as Nesting Partners, rather than Husband and Wife, we talk far more openly about just about everything, than we even did in the past. Which is a good thing.

I’ve written about Polyamory, the state of being committed to being open to romantically or sexually loving more than one person at a time, within ethical boundaries and with full disclosure of the partners to each other and to every new person brought into relationship. We’re both struggling with our new definition but have continued to be loving to each other while figuring out how to move forward into the future.

Me as a kid.

In that Blog from two years ago I was feeling completely defeated financially as well. Things in this regard haven’t resolved themselves entirely, but I have made strides in dealing with my debts by filing bankruptcy. It wasn’t fun and it isn’t over yet, but it will be soon, and I will be able to move on into some meaningful employment or business. I’ve also learned the outcome of my problems with the Securities Commission, and while I’m far from sanguine about the Decision made, and the sanctions against me, I am in a place where I have begun to see how I can move forward from here. I have accepted entirely that I am accountable for my current financial situation, and if I am to rise again, it will be because I make it so.

Here are a few random thoughts about how I will get out of this mess.

Make a list, detail the issues including both those which seem unsolvable and those which appear to have potential solutions, no matter how unpalatable.

Take concrete steps to begin to address some of the issues.  Whether or not I can solve everything, or even most things, I can do something about most things.  I desperately need to break the hold that my emotional condition has on me.

Start listening better to the people in my life who care about me.  At the moment they seem to believe in me more than do I myself.

Creatively analyzing my situation with a view to possible improvements in it.  A little improvement is better than none.  Maybe everything isn’t quite as far gone as I currently believe,  maybe I can still pull myself back from the brink.  Of if not, figure out how to ride out the storm caused by going over the edge.

Let go of the past, embrace the future.  What is, is.  What has already happened is done, over and can’t be changed. But what has not yet happened, may never happen, or may result in outcomes totally different than anticipated by my fears.

Lost on the road to God knows where. — Out Here in Paradise
Self Portrait of me as a young man.

I haven’t entirely let go of the past, and I continue to work on those things from the past that still cause havoc in my life. What can say, two short years later, is that there is hope, and things have actually improved, through hard work, a renewed practice of personal discipline in following my new lifestyle, and a willingness to be open and transparent to my partner, which means a lot less anxiety of both our parts, and a better, if not a little more complicated, redefinition of our lives, both together and apart.

Pain Mastery – Evaluation

How has pain been a complex problem in your life? How has pain interacted with your movement, energy, sleep, social life, finances, identity, memory, and mood?

Mastering Pain Institute

After listening to and reading the materials in the 1st leasson of the Pain Mastery Class it asks the student to answer the above questions.

Movement

How has pain interacted with my movement? As pain from various causes has increased over the past few years I have observed that my ability and willingness to move has undergone an uncomfortable metamorphosis. Simple tasks like walking, bending over, picking up items, getting dressed, doing my toe nails, making the bed… etc. have all become much more difficult.

Neuropathic pain has combined with arthritis to make steering the car for long periods increasingly painful. I alternate from my left to my right hand constantly as I drive, because the pain builds up in each as it is used. Eventually the pain is too great in both hands and I have to take a break. The pain in my legs and feet make driving hard as well, and certainly limited my pleasure from doing so. Driving a car is one of my great pleasures, or, it used to be one of my great pleasures and it represented a kind of freedom that is now gradually disappearing from my life.

The same can be said for a lot of routine physical tasks, all the way from making the bed to cleaning the mirrors in my bathroom. I didn’t used to mind housework or gardening but it is now so painful to mow the lawn that I’d rather let it grow twice as long as I used to. These type of restrictions have inevitably reduced my freedom of movement, and my interest in and willingness to do routine, simple life tasks.

How has pain affected my energy? Anybody who suffers from chronic pain will attest to the fact that constant, unrelenting pain is exhausting. There is almost no time when I’m not tired and so sore I feel like I really just want to lay down and sleep for a while. Even a nap would seem like a relief, if I can sleep, that is.

The net available energy is a function of pain in my body. The more severe the pain becomes, the less energy I have. And not only to do life in general, but in having the interest and energy to participate in the things of life. A lack of energy is behind so many other deficits experience by people with chronic pain that it tends to blind us to how serious it actually is. Without sufficient energy to function properly nothing actually works the way it is supposed to work. How the hell am I supposed to do my job at work, when I hardly have enough energy to get there in the first place every day?

How does pain affect my sleep? To most of us with chronic pain sleep is seldom deep or really very restful. Not a single night of sleep goes by without being disrupted, again and again by waking fully or partially because of pain in the body. For me it is all sorts of different parts of the body and different types of pain, but it all hurts, and it all makes me awaken at some point during sleep. If I wonder why I’m so damned tired all the time, I simply have to remind myself that I really haven’t had a decent night’s sleep in years.

I’ve been diagnosed with sleep apnea, but sleep apnea really isn’t the reason I’m awake half the night. It’s the pain, the pain. Snoring is a part of it. Blocked airways aggravates it. But pain causes sleep interruption, over and over again, every single time I go to sleep.

How does pain affect my social life? What social life? Who really has the energy to maintain a social group or friendships when you’re in constant pain? It takes energy I don’t have and mobility that is a constant struggle, simply to get out and visit with people. I’m no longer the happy go lucky guy I used to be. I try not to spread my pain around, or make my kids and grandkids suffer from my experience of pain. But I wonder if my increasing isolation from them is at least partly because I do longer know how to overcome my pain for long enough to actually properly engage with people.

And being socially isolated also increases my experience of pain, because lacking real human contact with others is not only uncomfortable, but it’s also actually harmful physically because it encourages inactivity and passiveness. Instead of getting out and doing things with the people I love, I stay at home, watching television, at least partly because it’s less painful than the alternatives of getting out of the house, and doing the things necessary to have a life.

How does being in pain affect my finances? This is one of the things that is most humiliating about being in pain. Instead of being vibrant and capable, I’m tentative and withdrawing from challenges. I used to love going to the office and taking on new challenges, meeting new people, creating new financial opportunities for myself, and for my staff. Now I have no staff, and I’ve been afraid for years of taking on jobs that I know I’m qualified to do because I’m afraid that I’m going to let them down, or worse, prove myself to be incapable of handling the physical and emotional demands of the work.

In addition, my increasing health problems cost a lot of money, which I am now having to pay with a lot less income, due to my reduced employment capabilities. I struggle to manage my prescription deductibles and copays. And that’s for the prescriptions, which doesn’t actually include any pain medications I can trust. Nothing the doctor has prescribed for pain has actually helped very much, if at all. I know that opioids would be more effective than OTC drugs but I also know that they are highly addictive, and have major other problems that I don’t need to add to my pain.

And being chronically short of money, as well as in pain, means that I can’t take advantage of one of the things I used to do a lot, which was going out to nice restaurants and have good meals with friends. Shortage of money means that I’m socially isolated by it, as well as by my resentment over finding myself in this situation. I never wanted to be dependant on anyone else but I find myself in a situation that make this every more a fact of life.

How does pain affect my sense of identity? Truthfully, I don’t really recognise myself any more. I no longer feel like the man I used to be, and I certainly don’t have the confidence I have always had. I’ve always thought of myself as a highly charged, somewhat hyperactive and oversexed Type A personality. If I had faults they were likely the faults of thinking that I could do anything, be anybody, accomplish anything. A little bit of humility probably wasn’t a bad thing for me to learn, but pain has driven me to distraction. The amount and persistence of pain has now reached proportions that are disabling my sense of self to a point of no return. I don’t actually know what it would look like for me to be me, the way I have always been. So damage to my sense of identity is a real cost of being a victim of chronic pain.

How does pain affect my memory? My partner says that I’ve become a lot more forgetful than previously. I’m not sharp anymore, and I don’t automatically pick up on things so quickly. I don’t think I’ve lost my marbles, but I get confused more easily and mix things up, despite my best efforts to not do so. It means I slow down, because I can no longer count on my memory for important information. I’m a lot more cautious than I used to be, if for no other reason than I hate being unable to remember even the simplest facts or common words.

I’ve always been a prodigious reader, at one point reading more than a book a day, not to mention newspaper and magazines. Now it takes me a week to read a novel, and a month to work through a non-fiction title, no matter how interested I am in the subject. I don’t remember names very well, I never did, but I’m also losing the ability to remember what books I’ve read or which ones I liked or didn’t like. I find myself half way through the first chapter of novels only to realize that I read the damned thing six month ago. So yes, memory is being affected negatively, if only because I’m so distracted by the constant pain interrupting the flow of my thoughts and feelings.

How does pain affect my mood? I was diagnosed as being bipolar when I was about thirty years old, after a major breakdown and depression. After being hospitalized for six months I came out of the hospital with somewhat better emotional management tools than I had previously. Relatively quickly I abandoned the prescriptions for bipolar I had been given, because they made me feel like I was living in a fog. And I reconciled myself to living with vivid emotional ups and downs. So depression and mania have long been a part of my nature, and my life. I’ve done well in managing to live a full life despite these problems, but now it feels like depression stalk me, without the accompanying manio to provide any balance to it.

There are two kinds of depression with which I struggle, one of which is a direct result of serious and chronic pain. It’s tough to get out of being depressed when you feel like you’re under a constant pressure cooker caused by physical and mental pain. This past weekend, in addition to chronic neuropathic pain in my hands and feet, arthritic pain in my shoulders, fingers, hands, I was also slayed by a serious migraine headache. I haven’t suffered from migraines on a regular basis for years, ever since I started practicing a form of self-hypnosis that seemed to be effective at shortening their duration, and eventually led me to being able to predict and prevent the worst of them.

Even that ability seems to be beyond my control these days, because it’s pretty hard to meditate when I’m in so much pain that I can hardly sit still.

I don’t know if this exercise in counting the ways that pain affects me is supposed to make me feel better, but it hasn’t yet. I also suppose that to defeat an enemy I first have to understand the enemy and all the territory it has staked out in my life. This is the exercise from Chapter 1 in my program to begin to manage my pain. I hope the next exercises don’t leave me here.

bipolar living

with or without medications

Manic episodes occur with amazing regularity in my life, so I surround myself with folk you care enough to support me in avoiding the worst consequences of mania. https://www.self.com/story/bipolar-manic-episodes

I’ve been bipolar all of my adult life. I equate being bipolar, in some ways, with being out in the weather. Some days it is sunny and bright, all things are possible, nothing can get me down. Some days are stormy, threatening lightning and thunder, and I’m afraid to get out of bed. So in addition to having to deal with diabetes, I also have to manage my emotional state. One of the best things about Intermittent Fasting is that it is another way I gain positive emotional feedback, by taking control of my health, as well as my emotional life.

Years ago, after several years of psychiatric medications, I decided that I couldn’t live with the “deadness” I felt while medicated. I felt like I was living in a fog, without any connection at all to the real me inside. I’d given up everything that made me “me” and was stuck inside a pseudo human being, without flavour, without emotions, without any reason to live at all. I don’t want to live that way, and so I’d rather live with my extreme emotional roller coaster than depend on meds to keep life in balance.

Before you decide to abandon your medications, and go it alone, consult with your doctor and make sure that you have a professional to provide you with ongoing care, just in case things don’t go the way you think they should.

Building mastery gives you a sense of accomplishment, Van Dijk said. What activity you choose “will just depend on where [you are in your] life and what will create that feeling of being productive.”

For instance, she said, this might mean volunteering, getting out of bed at 9 a.m. instead of noon or going to the gym three times a week. Or it might mean checking “the mail if that’s something you’ve been avoiding, … gardening or going for a 5-minute walk.”

Bipolar disorder is a serious illness. The illness itself along with treating it can feel overwhelming. But by taking small steps every day, you can effectively manage and minimize symptoms and lead a healthy, fulfilling life. If you’re not involved in treatment, contact a doctor or mental health practitioner. The strongest and healthiest step you can take is to seek professional support.

https://psychcentral.com/lib/10-small-steps-you-can-take-today-to-improve-bipolar-disorder/

Self Determination applies to all human beings, and ultimately we are all responsible for our own physical and mental health.

So, what then? I can’t rely on emotions to be an accurate guide, either for behaviour, or commitments. I can’t maintain relationships as an on-again, off-again basketcase. So I decided that my behaviour would be governed by my personal values instead of my feelings at any given moment. Whether I’m happy as a kite, manic and unstoppable, or in deep depression, I choose to respond to external input based on what I really want in the long run. This means that I’m always willing to be supportive and listen to others, whether I feel like it or not. It’s not about me, it’s about them and the kind of a man I really want to be. My actions are governed by my intentions, not my feelings.

That’s not to say that I don’t completely “fuck-up” everything sometimes, either in my personal or professional life. It’s especially true when I forget what’s really important to me, and don’t live up to my higher purposes.

But the other part of living is that I have to be completely accountable for my actions. That’s easier said than done, but I own my mistakes and forgive myself, rather than going over things again and again and again. Instead of being proud of myself only when manic and ashamed of myself the rest of the time, I accept myself, good and bad.

Neither be a God, (as I sometimes thought of myself when in a manic phase), no nobody, (

which is how I often saw myself during a serious bouts of depression. Instead, I’m just a human being striving to live my highest and best life. I no longer live in judgment, either of myself or others.

I feel for your pain, I really do. But live with it, and have a life worth living, regardless of temporary emotional states that come and go without any useful purpose. Ironically, over time you’ll come to be a lot happier with who you’ve become. Self respect and personal accountability trumps bipolar, at least, for me.