Is This What Recovery Looks Like?

I was diagnosed with bipolar disorder in November 1995, about a week before my 45th birthday. Since then I’ve been under the care of five or six different psychiatrists. I’ve had four stays in psychiatric units where I saw other psychiatrists. And I’ve had several counselors. They’ve all told me that I have bipolar disorder. Even the federal government agrees, giving me disability for it. So why am I feeling like I don’t really have bipolar anymore? It’s complicated.

I haven’t had a major episode in two or three years. But I have continued to cycle up-and-down from hypomanic moods to depressive moods. And it’s been mild compared to what it used to be like. I no longer believe that I have god like powers to affect reality, usually. And I don’t have those deathly suicidal depressions anymore either, at least not very often. Overall I would have to say that I’m doing pretty good. But I don’t know what to think about myself. If I’m not having severe mood episodes am I still really bipolar? I know it doesn’t make sense to question it, but I’m really struggling with this issue right now.

Okay, I know what you’re thinking. And you’re probably right. I take six or eight medications specifically designed to control my mood episodes. I am definitely medicated. It’s very common for people with bipolar disorder who are better because they’re medicated to the gills like I am to believe that they no longer have the disorder. Of course the reason we think that is because we are medicated to the gills, but we don’t see it that way. The usual next step is to believe we don’t need to take our medications anymore. That’s the trap we fall into. We get better and we think we’ve done it on our own and that we don’t need the help of the drugs anymore.

I have done a lot of work on my own it’s true. In fact I’ve worked like hell to try and get better, and I still do. So I will take credit for at least some of my success. But if I were not on this medication cocktail I’m on now I would not be writing these words to you. There is no doubt that these medications are powerful. They have definitely had the power to make me much worse than I would’ve been without them. I still suffer painful and debilitating side effects from them. But they have also had the ability to lessen my moods and my cycling. They’ve helped me to get better. So I’m not about to quit them.

Talk therapy has also been very helpful to keep me alive while I’ve had a tentative hold on consensual reality. A common understanding is that therapy doesn’t really work until you’re stable on your medications. I don’t think that’s totally true. I’ve had a lot of help to get to this place that I’m at now, from a lot of caring and compassionate people. And I’ve had it at times when the medications just hurt me. When they didn’t help me at all. In fact that’s pretty much been true until the last two or three years. So I’ll give talk therapy a lot of credit for where I’m at now.

It’s also true that the talk therapy has worked better in the last two or three years since I’ve been on this new medication regimen. It’s given me some breathing room to get a better handle on how to manage my moods on my own. I’ve learned a lot of tools and tricks over the years that I can use to help stave off impending episodes. I try to use these tools all the time. And I can use them more often and to better advantage now than I could before the medication took hold. But there are still times when I’ll take an extra Klonopin or some Abilify because I’m starting to ramp up too high. And the lamotrigine mood stabilizer I take helps to moderate my depression better than anything I’ve taken before. The medications are still very useful.

So I’ll ask the question again: Is this what recovery looks like? And if it is, how do I function in it? It’s been so many years since I was truly functional in society I don’t know how to do it anymore. And I am definitely not the same person I was 25 years ago. Of course none of us are, but that’s not what I mean. When I experienced the mixed state episode in ’95 that got me the diagnosis I changed. To me it felt as though I might’ve had a stroke. I didn’t, but that’s how dramatic it was. I can definitely break my life into two distinct pieces: Before and after that episode.

Before the episode I cycled a lot and I had some very serious depressions. But I spent a lot more time in a hypomanic reality. In between depressions I was normally hyper most of the time but then I would have times when I would have way more energy, creativity and confidence and would do great things. These were distinct episodes of hypomania, and they were generally followed by severe depressions. I also spent a lot of time in a mixed state where I had one foot in each reality. Looking back I can clearly see that I was living in a state of bipolar cycling. But mostly I was functional and I had a pretty good life. I got a lot done and I did some really good things for the world.

After the episode I was much worse. I spent more and and more time in depression and less time in hypomania. My outlook on life became very bleak. In truth I felt completely hopeless. I had no belief that I would ever get better or would ever have any other reality than what I had then. And what I had then really sucked. My various psychiatrists tried me on drug after drug after drug. I’ve probably taken at least a couple of dozen different psychiatric medications. Few of them worked. All they did was make me sick and make me feel more helpless. My life was totally out of my control.

I should mention that concurrent with my mental health issues I also had some very severe pain issues. Horrible migraines and a damaged back plagued me. I had never had any luck with doctors helping me with pain. They never believed me. Pain is subjective and if you don’t feel it yourself you may not believe other people do. At least that’s the attitude I ran into time and time again with the medical profession. But about 15 years ago I finally met a compassionate doctor who was willing to take me seriously and prescribed large doses of opioids to help my pain. I’m not a big fan of opioids, but for the first time in decades I was able to live a physically functional life without constant debilitating pain.

Pain and depression are known to be linked. When you’re depressed you feel pain more. When you’re in pain you get depressed. It’s pretty clear. So a big source of my depression was suddenly improved. It wasn’t gone by any means but I was much better. An easing of my pain then allowed the easing of my depression, at least to some extent. Talk therapy and counseling helped me a lot during this time. I was probably getting better even then, but it was so slow I couldn’t tell I was. The positive attitude of my therapist really helped pull me through those hard times.

Then a couple of years ago after I was put on a new mood stabilizer I went through a period of several months when I wasn’t hardly depressed at all. I remember telling my therapist I didn’t know how to act. My default had been depression for so many years I didn’t know how to not be depressed. It was very weird and I felt totally uncertain about how to behave. Of course the depressions came back again. And I got better again. I was still cycling, but it was different. At this point I see this dynamic of cycling as a spiral. Each time I spiral through the cycle it’s a little different and I’m a little better. And so I’m back to my original question again.

Is this what recovery looks like? Because I still don’t know how to handle it. My cycling may have calmed down but my anxiety has gone through the roof. I have PTSD so I know that’s part of it. And I know anxiety is just a part of being bipolar. I’ve also been looking into social anxiety disorder lately and it’s pretty clear to me that I have all the signs. Add these altogether and I’m paralyzed. I feel crippled by anxiety. I’m so terrified that I’m going to be humiliated that I won’t even lean into trying something. I stop myself before I even get started. This could be a whole other post so I won’t belabor the anxiety angle right now. I’ll just say that the anxiety doesn’t help me feel stable.

So I started another new drug to help with that. It’s been less than a month so I can’t tell how well it’s working, but I have some hope, despite the fact that it sort of wipes me out. I assume that in time I’ll acclimate to it and that it’ll help me be less fearful of social interactions. Maybe this will be my final hurdle. Until I can move beyond it I’ll continue to try to accept myself and my diagnoses and function in the world as best I can. Yes, I’m still bipolar and always will be, but maybe this is recovery and I just don’t recognize it. I think that as I get more used to it I’ll feel like I really am better. Like I really am in recovery. And that’s the goal isn’t it? Maybe I’m already there. I hope so.

Seeing some light at the end of the tunnel,

Steve

Staying Stable in the Age of Trump

This is a strongly opinionated take on the current state of the nation, and my response to it as someone living with Naked Nerves. These are strictly my own opinions and I take full responsibility for my words. Whether you agree or disagree with me I hope that at least these words make you think. Please leave me a note to express your own feelings. Dialogue is so necessary. We all have a say in how our country works and we need to make our voices heard. This is my way of doing that. You’ve been warned.

I can’t say I’ve always loved my country. I came of age during the tumultuous 60’s and 70’s, amid the Civil Rights Struggle, the Vietnam War, the fight for Gay Liberation, Watergate and many other things that made me question the goodness of this country. These things made me angry, but they also made me terrribly sad.

As time has gone by I’ve grown up and mellowed out a bit and I have a different perspective on just how wonderful this country can be. Lots of hard work by so many good people has made it that way and continues to do so. I have an enduring optimism that things will work out for the best. I get depressed when it doesn’t, but I struggle thru it and try to come to terms with the bad parts. I love our democracy with my whole heart and I always will.

But today we’re in a different world: the age of “Post Truth” and “Alternative Facts”. It’s never felt so bleak to me. Chaos reigns supreme and lies are the norm. “Truth isn’t truth”. I recall when Donald Trump was running for president I wrote to friends that it was imperative not to vote for him because he’d gain the power to destroy not just our nation, but Western Civilization as we know it. As it turns out, I was right. He’s doing it right before our eyes and no-one is stopping him – least of all the gutless Republicans in Congress. Such cowardly wimps.

The standing of the U.S. in the world has never been worse. We’ve alienated our best allies and broken our word to the world in crucial ways like the Paris Climate Agreement, and so much more. The administration doesn’t even believe in climate change. Over 95% of the world’s best scientists say it’s real but the president and his toadies in congress and on Fox news won’t listen to them and cling to their fantasies that human caused change isn’t happening and we don’t need to do anything about it. I’m embarrassed by their willful ignorance and I fear their power to cause great harm by ignoring reality.

As I write this we’re in the 23rd day of a ridiculous government shutdown brought on by our president’s temper tantrums over his absurd promise of a racist and ineffective border wall. All the data show that it won’t work to curb illegal immigration, which we do need to address. What we need is better technology, more border guards and more immigration courts to process claims of amnesty. But that’s not what’s being proposed. Just a wall that won’t stop the problems. Most of the illegal immigrants actually come in thru Canada, not Mexico at all. Do we need a wall there too?

Our nation is being held hostage over this wall. Hundreds of thousands of our dedicated Federal workers are out of work and out of money. They’re either stuck working for free, or not allowed to work. It hurts far more than just them however. It’s felt in our entire economy and it’s debasing our way of life. It makes people angry and feel afraid for their futures. It’s mean and it’s cruel – the hallmarks of this administration. I’ve never seen a President act so callously towards his people. Are we really “his” people, or are we just pawns in his games of power? We have a “Kakistocracy” – a term meaning “rule by the worst elements of society”. This is our reality now.

So what does all of this have to do with Naked Nerves? I’d say it’s obvious, but I’ll go into it a bit. This kind of insecurity in society is felt most keenly by those of us who are sensitive, and are already on the edge of sanity and survival. Whether it’s mental or physical, those of us who are seriously struggling with our health have difficulties. Having the basic institutions of society destroyed like they are erodes our sense of stability terribly. It makes us more vulnerable to the tragedies we see happening all around us to people of color and immigrants, as well as religious, ethnic and sexual minorities, especially if we’re members of these groups. Racism and intolerance are rampant, and it hurts us all.

As a lover of nature and a gardener I particularly feel the insults to our natural world that this administration is perpetrating. The destruction of our National Monuments and the opening of the Arctic National Wildlife Refuge infuriate me with their injustice. These are lands that belong to all the people of the United States, not to some private mining companies or oil drilling rigs that steal our natural resources, leave a mess, and refuse to pay for any wrong-doing. They just want their millions of ill-gotten booty. It makes me cry, and it makes me very depressed. And it makes me angry as hell…

I tend to cycle often between depression/despair (mostly) and hypomania/anger (lately – too much). But these days it’s almost constant. Even tho I try to limit my news intake, don’t watch TV news and mostly get my news thru NPR and certain objective, non-partisan newspapers and websites, I still get way too much for my comfort. It upsets and destabilizes me and makes me fear for my own survival, even tho I’m not directly affected by the shutdown. But I am queer, mentally ill and living on Federal Disability insurance, and I don’t trust this government to take care of me in these circumstances. In a word – I’m Terrified – for myself, but mostly for our nation.

So what do I do to stay stable? It’s very hard, but I try to stay as calm as I can and not let myself get too outraged or depressed because it just hurts me and makes me less able to address the problems. This is just how our “leaders” want it. Keep the public ignorant and powerless and you can do what you want to them. Declaring the news media the “enemy of the people” is totalitarian talk. It’s the first step towards authoritarian rule and it freaks me out totally. White nationalism is on the rise and bigots rule the airwaves. It’s scary as hell. But when I remember there are so many people working so hard for positive change it gives me hope that we can find a way out of this mess.

Being isolated is the worst part of it. I don’t have as many friends as I used to, and feeling alone with it all just exacerbates the issues for me. But I have Louie and some family and a few good friends to help me stay sane. I rely on their support very much and I think that people who have good social support networks will do the best as things get worse, as they surely will. Being connected with other like minded people can help us keep our centers. Just writing this blog helps me feel that way. I hope my writing does the same for others. We need one another to be reasonable and to work together for a better world.

There is so much fear in our society these days. Trump says creating fear is his modus operandi. This can’t help but affect us all. But when you have a mental illness it’s much worse. We magnify things out of proportion in our mood states, and we can’t always think clearly enough to see the way out of them. I can’t say I meditate as much as I should, or stay as mindful of my circumstances as I could, but I do try. I think that these things are good ways to help us maintain clear perspectives and survive this turmoil we live in. But probably the best way to feel more empowered and like you’re making a difference is to get involved in the struggle to make America safe and welcoming again. I know how hard this is when you’re depressed, but helping others is a proven way to help yourself.

If you’re struggling like I am to live a good life in the age of Trump I hope you have good people in your lives and positive things to do to help you stay stable. Just emoting can help us feel better. Getting it out of our minds by journaling helps. Allowing the negative energy to dissipate helps. Taking our meds helps. Keeping calm and remembering the good things that are happening helps. Appreciating the beauty of the natural world and all the wonders of existence helps. And working for change helps. These are some of the many ways to survive this mess we’re in, but they take conscious effort. We need to do them if we are to save our country, and our collective and individual sanity. Let’s hope we have the courage and the will to persevere.

Trying to stay strong…

Steve

A Chronically Discontent Manic Depressive

I was diagnosed with Bipolar Disorder in late 1994 and I’ve had 22 some years to study and learn about this illness. I’ve learned a lot. I read books and magazines all the time and I search the internet. I’ve learned how to dance with this disorder pretty well, especially since last year when I was put on a new mix of medications. I’m doing much better. In fact I feel pretty stable for the first time since my diagnosis. It’s still hard, but at least I have a clue as to what’s possibly coming down the line towards me. My brain is different than it used to be and it’s taken some getting used to, but I’m getting there.

Last year I was also given the diagnoses of PTSD and Dysthymia. I’ve been studying about how these disorders affect me since then, and again I’ve learned a lot. But it’s still new, and I don’t know as much as I need to. I recently read a book called “The Half Empty Heart”, by Alan Downs, PhD. It’s all about Dysthymia, or what he calls Chronic Discontent, and man I can relate all too well to this description. It’s also called low grade depression because it’s always there and never really goes away. You’re in a low state of depression basically all the time. It cycles some but mostly it’s just there, underlying all your actions and thoughts. I read this book a few years ago and it intrigued me, but I didn’t have the diagnosis yet so I just thought about the subject and how it affected me. But since I’ve been diagnosed with it and know more I can see that it’s affected me my whole life. I’ve learned a lot more reading it this time.

One of the main things that people with Chronic discontent deal with is a tendency to emotionally and physically withdraw from stressful or difficult situations. It’s a hallmark of the syndrome in fact. And it’s one of the hardest symptoms to handle. There are exercises in the book that are intended to help you overcome this, but I haven’t gotten too far in that. But I have read enough to know that withdrawal has been a constant theme in my life, since I was a young child in fact, right up to today. When things get too hard for me, instead of trying to work it out I often tend to just disappear and run away from the hard stuff. I can’t tell you how many people and situations I’ve abandoned in my life. Dozens at the least. I’m not happy about this, in fact I’m totally ashamed of myself. That’s a big part of the symptomology too. Experiencing shame is the way we live our lives, based on perspectives we developed when we were very young. We just don’t feel like we’re OK as human beings deep inside of ourselves.

A shame based life is filled with regret and unfulfilled promise. We respond to life as tho we feel we aren’t as good as the people we interact with, and so we self-sabotage many of our relationships. We often are left with no one to call friends any more. That’s my situation. I’ve left so many people that there are just a few left. As I get older this is a big problem. And I don’t have a clue how to overcome it. It’s buried so deep in my pysche and I’m so terrified of changing it that it informs most of my decisions. It might as well be who I am. But it’s not. I still refuse to be defined by my diagnoses, but it’s hard not to be. I’ve always been ashamed of who I am, despite all the good things I’ve done in my life. It’s like they don’t matter and all I can see are my failures and abandonments. This has been true for as long as I can remember, even as a small child. In fact that’s where it started I’m sure.

I don’t mean to blame anyone for this, but it seems clear to me that this began in my childhood, and of course that means that my parents were at the root of the situation. I had wonderful parents and they loved me so much. They were happy to have me, but I was so sickly that they severely overprotected me and I grew up believing that I was too much an invalid to do too many things. This despite the fact that they also told me I could succeed at anything I tried, and I so often did. But the shame I developed over that time lives on today. Back then it was an undefined feeling that I was inferior to other people. I still feel that way. I know that both my parents suffered from low self esteem and I’m sure that it translated into my psyche at a young age. How could it not? Again I don’t blame them. They were just living their lives the best they could after all. But I never talked to them about this before they both died. Now I can’t ever deal with it with them and it’s up to me to overcome it alone. It hurts my heart because I love them so much and yet they left me with such a painful legacy.

The title of this book – the Half Empty Heart – is very powerful to me. It’s a hard thing to face but it’s the way it seems to be. We tend to look at life as a glass half empty instead of half full. And in that we fail to take care of our hearts. It’s very painful when the reckoning comes around and you see all that you’ve lost thru your lack of action, or actions you’ve taken to escape. It seems like every time I begin to have a good life and accomplish something, I sabotage it somehow and end up with nothing left. This is a common experience for people with chronic discontent. We stop ourselves before we’ve even given ourselves a chance to succeed. I’ve so often declined to even begin something because I was sure it was doomed to failure. It’s not that I lack courage. I just don’t have the faith in myself.

But here’s where the mix of diagnoses comes into play. Having Bipolar disorder means that you may cycle constantly and can be up or down depending on your current mood. When you’re “Up” you feel on top of the world and I think that because I’ve lived so much of my life in hypo/mania – the good stuff feelings – that it overcame a lot of my chronic discontent and allowed me to do more than I might have otherwise done. I couldn’t help but feel good about myself, even if it was based in mania and not reality, it still felt good and I believed it was real, so it was. In a strange way I feel lucky to have both of these illnesses together. I think that life would have been much worse for me if I’d just been chronically discontent, or just manic. I probably wouldn’t be here by now I suspect. I think that having those up times of bipolar mania allowed me to distance myself from the bad feelings and I had the courage to do all kinds of outrageous things that nurtured me and kept me happy despite the low grade depression I still felt deep inside. It was a strange mix, and it still is.

The other side of it is that the dysthymia often kept me from displaying florid manias to other people because I was too ashamed to “act out” and embarrass myself. I so often hid my horrible feelings of distress deep inside so that no one could tell that I was experiencing such difficult emotions. In some way I feel that this saved me a lot of heart ache because I never got “caught out” with my Bipolar until I was old enough to make better sense of it than I would have in my younger days. If I’d been diagnosed with it in my teens, as most people with BP are, I would never have accomplished half of what I did do. So the two diagnoses have worked in tandem to help form my life as it is now. Not great perhaps, but I’m not in a hospital (tho I have been) and I’m not dead (tho I’ve tried to be). But I haven’t been that successful in my life either. Depends on how you gauge it. I’ve done good things but I never made much money, and that’s how we judge success in our culture. So I feel like a failure even while I revel in my good works. It’s a weird way to live I guess but it’s what I know and have done. And I suspect there are others who have similar experiences.

I hope I don’t seem to be complaining about any of this. I assure you I’m not. I get it that I’m the one responsible for my actions and ways of being in the world. I’m not making excuses. I’m the one who bailed on my friends and communities in my chronic discontent, and I’m the one who was manic and did great things while I was too. I find it fascinating to try to embrace these two different illnesses. And I haven’t even touched on the PTSD. I could write a whole post just on that. All these diagnoses work together for me, sometimes in helpful ways, as I’ve described, sometimes in terrible ways too. I’m still working on the challenges of having these disorders and sometimes I think I’m even making progress. I hope I am anyway. Life is too hard for me too often, but it’s also so beautiful. I’m a lucky guy actually. I have a wonderful man who loves me to death and I have a home and good food to eat, and so much more. I even have good health, despite these disorders. So take all this as a discussion of how one can manage to live with these challenges and how I personally have dealt with them. At least it makes some sense to me…

If any of this resonates for you too – there is help. Go find it!

Steve

Cycling While Stable

I wrote a blog post last November on my 67th birthday about how I thought I was doing much better since I’ve been on a mood stabilzer that actually works. It’s been about a year now that I’ve felt this relative stability, but lately I’ve been looking back at my behavior over the last few months and I realize that I’ve actually been cycling thru hypomania and depression quite a bit more than I realized at the time. Impulsivity is the biggest and most problematic issue for me. But obsessive thinking is a close second. The two go together for me too often and I make a fool of myself in situations where I should know better.

Over spending is another one that’s gotten me lately. Impulsive again, and obsessive. These are all symptoms of Bipolar illness and apparently I’ve been experiencing them frequently. I didn’t really see what I was doing at the time but at some point I realized it and I stopped it, or tried to. But I still act too impulsively and without proper forethought. It drives me crazy and embarrasses the hell out of me. I say things or write things in emails that are out of line with my sense of self, and I portray myself in ways I’d rather not. I can’t seem to stop blurting things out that make me look and feel stupid, both in print and in interactions in real life. I attribute this mostly to the hypomania but I see there’s a clear element of depression in there too.

I guess I’m in a mild mixed state, where I experience both the highs and the lows that are the hallmarks of manic depression. I go there when I see the effects of my hypomania and it upsets me, so I get depressed. Then I feel better and act out stupidly again. Then I get depressed. Then…. You get it… It’s a vicious cycle. I have a diagnosis of Dysthymia as well as Bipolar type 1 and PTSD. Dysthymia is a constant state of low grade depression, and I can see that it’s an appropriate diagnosis for me because I feel a bit “down” almost all of the time. I’m not really sick but I’m sad and feeling the loss of the vitality that the hypomania brings.

I’m a bit disconcerted by all this. It makes me realize once again that I’ll always cycle thru these emotions, maybe more easily at times than others, but they’ll always be there, up and down, again and again, even when I’m “stable”. It sometimes feels like a bleak future for me, but I refuse to accept that it’s going to define my life as I get older. At times it feels like I don’t have enough time left to get it right, but then I see that I really have all the time I need and I can do it if I just keep trying. I’m still pretty young after all, and people do amazing things in their 60’s and 70’s and well beyond that.

I have a lifetime of experience that tells me that, tho I’ll still cycle much of the time, I’ll also have relatively calm periods when I just feel OK. During these times I can assess my actions and behaviors and make decisions to act less impulsively and obsessively. I can learn to think things thru more thoroughly before I act or speak. Seeing these aspects of my personality lately has given me an impetus to renew my commitment to taking better care of myself, more consciously. I already think of myself as a conscious person, but obviously I don’t always live up to these expectations of myself.

I’m continually learning to cut myself some slack for my failures. It’s a big part of healing for me. I still hate myself for the slightest misstep, and beat myself up mercilessly. Suicidal ideation is not that far away at times, tho thankfully it’s not the problem it used to be. It’s a hard thing to experience as frequently as I have in the past. It’s too often been the default setting for my negative emotions when I screw up and it’s very hard to uproot it from my consciousness. Now I’ll still feel bad about myself, but usually not so much that I want to die.

In fact I want to live, and live well. So I’ll keep trying to moderate my moods and be more aware of them as they cycle back and forth thru my consciousness. It can be a blurry line between accepting responsibility for my actions and recognizing that the manic depression has “pushed’ me in certain directions that are not in my best interests. I think I’m getting better at seeing these differences all the time. After all I just caught myself for the ways I’ve been blowing it recently. This gives me hope that I can actually keep doing it. All I have to do is stay aware of my thinking, and treat myself with gentle loving care, the way I try to treat other people. It’ll be a big challenge, but I think I can do it.

Cycling consciously,

Steve