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

Advertisements

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

Hypersexuality

This started out as a comment I made on the BP Hope website for an article about Hypersexuality. I liked what I’d written so much I thought I’d expand it and turn it into a post for Naked Nerves. It’s the kind of exploration I want to present in these pages. It’s an honest discussion of certain aspects of sexuality, so be prepared for some frank language about sex, tho nothing too outrageous given our current cultural standards.

First I think we need a bit of an introduction to the subject here. Not many people realize what hypersexuality is, so we’ll start there. Simply put, it’s a strongly heightened desire for sex, all kinds of sex, without concern for the consequences. It’s an overwhelming drive, thirst and urge for sexual experience, and it’s almost impossible to resist it. It’s a significant part of having Bipolar Disorder, which is why the discussion in BP Hope was written. People in general don’t talk about it much, and even folks with BP don’t often do it with our Psychiatrists and therapists, but we do amongst oursleves. People who have BP are usually willing, tho maybe uncomfortable, to be open and honest about it, but it seems to embarass the professionals, as most talk of sex does in our puritanical culture. It can be great fun to feel so incredibly sexual, but more often it can ruin lives and cause scandals and infidelities, failed marriages and relationships, and broken hearts all around, to say the least.

Hypersexuality can be at the heart of it all. People may screw around too much and with people they shouldn’t be with. Office/work romances, casual hook-ups with strangers, sex with people they previously thought of only as friends – which may destroy the friendship – every sort of sexual expression people can have with each other can be affected. It’s an almost impossible urge to ignore, it’s very persistent and it can totally overwhelm your good judgement with its intensity. You just Have to go have sex! Lots of it! All the time! Consequences don’t count. It doesn’t matter at the moment if it’s risky or may hurt someone else – that’s the farthest thing from your mind. All that counts is the urge to fuck, and to fuck a lot.

I’m not trying to write a treatise here, but more of a story about my own expriences with it. I suspect many of you with Bipolar will recognize yourselves in my stories. I hope you do, and that there are some useful insights to gain from what I have to say, whether you’re Bipolar or not. It affects other people too of course, not just folks with BP. Sometimes people call it sex addiction, but that’s not quite the same. It’s more of a sexual compulsion. It’s most common in people with BP while in a manic state, but it doesn’t have to be full blown mania. It can just be a very strong “push” you feel to be sexual at any time, and I do mean any time. Here’s what that’s been like for me:

I’m a 67 year old gay man and I’ve been hypersexual for as long as I can remember, even back in my childhood. I first started playing with myself sexually around age 4 or 5, maybe younger. I recall being on the couch with my mom around then and stroking myself and her getting upset, saying it was wrong and dirty. Great first lesson in sex, eh? But I kept it up, sometimes doing it so much I caused my dick to bleed. I was obsessed. I had my first orgasm in the shower at age 8. I had no idea what had happened but it felt so incredibly good. I told my friends at school about it and said it felt like going to the bathroom all over! They thought I was weird. Little did they know!!

I had my first real sex with a cousin my age at 11, with our parents in the living room and us in the bedroom. Even then I recognized the thrill and the danger of getting caught, but I didn’t care because it felt so good. We sucked each other and I came in his mouth – he didn’t and was very confused. But I reveled in the sensations. Wow!!! I guess I was mean, only into my own satisfaction, not that that excuses it. But I was just a horny kid and I wanted it so much I just didn’t care. As time went on I became involved in a compulsive sexual “relationship” with a boy my age for about 8 or 9 years thru my teens. I got all the sex I wanted, and I wanted a lot. We did it all the time. Then I read in the encyclopedia that sodomy and fellatio were “bad” and that scared me, but it didn’t stop me, so it was always a closely guarded, guilty secret. I finally lost my heterosexual virginity to a woman at age 19 and thru my 20’s was serially monogamous with several women. I had lots of sex, sometimes with men too, and I masturbated a lot as well. I was always horny. I’d have sex with anyone who’d want me, male or female.

That got more extreme when I came out at 29 and into the gay scene in the late 70’s/early 80’s. I had lots of sex, both with boyfriends and cruising in the parks and bathrooms – highly risky, but who cared? Not me. Sex parties, groups, orgies, running naked thru the parks – I loved it all, and eventually figured out I’d had anonymous sex with hundreds of other guys over the years. I just thought it was a part of gay life and since everyone else was doing it too it didn’t seem abnormal. It was just a part of our lives – it was no big deal. Of course at first this was in the early days of AIDS, so I didn’t let anyone fuck me without a condom after 1984, until I met my life-partner. Tho very hypersexual, I was aware enough to be safe. Not everyone is so smart, or lucky. Even now at this “advanced” age I’m still horny all the time, sometimes even more so when depressed, and watching porn and masturbating and fucking as much as I can. I’m also a Scorpio, the sign that governs the genitals, and some would say that has a lot to do with how I am, but who knows for sure? I just know who and what I am now, and I believe being Bipolar has always been the most of it, even when I was a kid, given other behaviors I exhibited back then.

I’d always been depressed a lot in my life but I really “lived” in hypomania, with a few real manic experiences as well, but I didn’t know what it all meant. I was terrified of Psychiatry and I certainly didn’t know I was Bipolar. Even when I tried suicide at age 29 they said it was “just” depression. A familiar story for many of us, I know. Then at age 44 I crashed and burned really bad and was finally diagnosed with BPII, rapid cycling, mixed states. Later that was changed to BipolarI and PTSD, where it stands now. I had a few hospitalizations along the way, and after the last one I was so hyped up and so sexual I felt like it radiated it out my eyes. Walking down the street I was cruising everyone I met, and they cruised me back. I was so high on sex it almost hurt. That night I called a friend and asked him to come fuck me silly. He did. I couldn’t help myself. Not what the doctors had in mind when they released me I’m sure!

When I first explored Bipolar and read about hypersexuality I thought “this is me!” It fit me so well. I was so turned on so much of the time and masturbated so frequently, often many times a day if I could. I went for 20 years without a partner but I still “cruised” for sex a lot, even tho it was way risky, but I never got caught. I felt so invincible you see – grandiosity to the max! I felt “pushed” to spend hours seeking sexual encounters – always have felt that push, still do. Hypo/Mania anyone?? But I began to wonder if it was really OK to do it so much. I worried about myself and wondered if I’d ever find a real partner who was like I was. I wasn’t very stable at all with the BP during those 20 some years and tried tons of meds to try to get OK. It was a long, hard slog and most of the meds made me sick or crazy, and they didn’t work. Then things changed.

When I was 57 I met a man who was also my age who I fell deeply in love with. We met online on Gay.com and gradully got to know one another thru emails. Then when we finally met we were naked and in bed together in 5 minutes, I kid you not! I’d finally found my mate!! Nowadays we have sex a lot, and occasionally invite a third guy in to share our magic with us. We’re both highly sexed, but he’s not BP at all. Very stable in fact, and I wouldn’t call him hypersexual. He’s just into sex a lot, but appropriately, unlike some of my experiences. And for the last year I’ve finally found a good mix of meds and I’m pretty stable with my Bipolar Disorder too, mostly, with an episode here and there, now and then. And I’m still hypersexual.

I still jerk off a lot, as does he, and it doesn’t interfere with our sex lives at all. I like to watch porn sometimes too – it’s fun and it gets me off. I still have manic rushes of hypersexuality, much of the time in fact. I’m so used to it I mostly just revel in it, but sometimes my cock takes over my mind and I get way too sexual, obsessing about it all the time. I get caught up far too much in the search for more sex, even tho my partner and I have a great sex life. But the yearning is just a difficult thing for me sometimes, not a danger to myself or anyone else, like it has been in the past. I’m still HIV negative, and I intend to stay that way. We play safe.

I’m know I’m one of the lucky ones – I never really ruined my life with my sexual escapades, though I know I’ve hurt people, which I deeply regret. Mostly it’s been a fun journey which I’d never want to change. I’m more careful now, and have been for many years, since I was diagnosed and began the search to understand my condition. I still cycle thru depression and mania, and I often struggle with hypersexuality, but I’m pretty much OK with it all. That’s good enough for me…

I realize I’ve never really told this whole story to anyone. It feels good to talk about it so openly. Hope I didn’t freak anyone out too much. And remember – this is about my experiences – your mileage may vary… Thanks for reading.

Too Sexy Steve

I Think I’m Doing OK Now…

But I’m not totally convinced.  I seem to be on a much more level plane then I’ve been on for the last 20 some years, if not my whole life, I’m not sure.  My past before being diagnosed with Bipolar 23 years ago last week was so different.  (see “I Was A Different Person Then”).  I won’t go into all that because I did so already.  But things are different now, again, in a new way.  Earlier this year I was put on Lamictal  (Lamotrigine), a mood stabilizer, in addition to Abilify (Aripiprazole), Wellbutrin (Bupropion), Buspar  (Buspirone) and Klonopin (Clonazapam).  For the first time ever, a medication has actually changed my life.  I still spend some time in depression, but it’s mostly not that bad and I can usually overcome it with CBT  and smart thinking and action.  And I’m not too high either, tho I did try to get off 13 years of Abilify a few months ago (it makes me shake terribly and I hate it) and I had a really bad reaction, so bad I thought I was going to lose it completely.  It was the closest to real mania I’ve come in years.  So I went back on the drug and I’ve been OK since then.  (I had my Psychiatrist’s permission and support to quit, BTW).

I remember telling my counselor at the time that I was struggling with this new reality, because I didn’t know who I was anymore if I wasn’t depressed all the time.  I still feel that way, and it’s actually pushed me back into depression several times since then.  Weird.  You’d think I’d be totally at peace with this and be happy for myself.  But it’s not that easy to change a lifetime of such inbred patterns of thinking and behaving.  I Was depression in the past and it was my total life.  It was hard on me, and on the people I loved around me.  I could stop it occasionally, but not totally, and I suffered with it a lot.  It was my daily reality and it informed all my decisions and actions way too much.  I was scared all the time and afraid of being caught out as a loser.  Too much fear is paralyzing and I was often paralyzed.  I still am to some extent but not nearly so much.  I am better now.

I’m gradually learning to accept and revel in the “new” me.  I just had a counseling session with my new counselor and he asked me to do a narrative of my life – positive and negative.  I found myself listing tons of positive things about my life, but not that many negative ones.   A total surprise to me.  In the past it would have been much more tilted the other way towards extreme negativity.  When I’m depressed it’s all I can see, and it’s the same way with being OK I guess.  I Am my emotions way too much and if I’m doing well I think l’ve always done well, despite the memories of the failures and awfulness of depression. When I’m depressed it’s the opposite and it’s all I can see and feel.

Staying balanced is a real struggle for me even now.  But I can do it most of the time.  I’m amazed, but still frightened by the new me.  I still don’t know how to interact or be with people very well.  I still fall back into the old patterns of depression if I don’t keep up my guard all the time.  But I have real support in my partner Louie, and with my friends, my counselor and psychiatrist and other health care folks.  So I think maybe I can do this.  I sure do hope so, tho hope can be a trap too if you’re not careful.  Just ask a student of Buddhism.  Today is my 67th birthday and perhaps it’s the start of a new reality for me.  A truly new year of life.  I think it could be and I’m trying to believe so much that I can pull it off.  I have a lot of faith in myself these days, and it’s not based in my usual hypomania, but in reality for a change.  Plus I’m older and wiser now.  I understand myself, and life in general, much better.  Staying real and giving it time are my current mantras.  Maybe I really am doing OK now…  Time will tell.

peace,  Steve

Opiates!!!

thumb_IMG_7395_1024

I got home from the University of Washington Pain Management Clinic a little while ago. I’d been sent there by my new doctor who wanted a review of my condition so she could treat me appropriately. It was an interesting experience. We went thru the usual tests of range of motion, gait analysis, mobility of limbs, needle pricks to see if I felt the sharpness (I did) and so forth. Nothing new from this testing and no new information about what was going on with me. But I did gain some important new knowledge.

I learned that the brilliant legislators in Washington State have decreed that no one shall be allowed more than 120 mgs. of opiates a day. Period. No discussion, no rebuttal, no recourse. This is a bit of a problem for me, you see, because for the last dozen years or more I’ve  been taking close to 300 mgs of Morphine as well as 15-20mgs of Dilaudid (Hydromorphone) a day. Imagine my surprise when they told me this. I was not shocked, because I know what the climate of the country is like these days around opiates. I was expecting something, but nothing this extreme. I mean they wanted to cut me back over 1/2 of what I’ve been taking for Years! Fuck!!!

Part of me wants to go down to Olympia and break the legs of every (probably Republican) legislator who voted for this draconian measure and leave them in pain forever while they beg for some relief. After all, that’s what I’ll be doing pretty soon – begging for relief – as soon as they drop me down to the 120 mgs. I’m now allowed. Sigh. I have what’s called Chronic Intractable Pain, so called because it’s constant, severe, disabling, and causes detectable changes in your heart rate, blood pressure, etc, and if it’s not treated it ends in death. Yep, a fun diagnosis for sure. I’m lovin’ it myself… I can function, but I’m always in pain and if I do much of anything it spikes so that I have to take some dilaudid for breakthrough pain. It helps a lot but it doesn’t make it go away completely.

I’d changed docs from the one I’d been seeing for 13 years because he stopped prescribing opiates. He never asked me to pee in a cup during that whole time because he trusted me not to mess with my meds, and I never have. Why would I? It’s Stupid! But the new doc at the UW clinic requires me to do that so that they can see if I’m honest. I am, and soon they’ll learn that, if they can keep treating me that is. I dunno if they will or not. Most doctors won’t touch me with the proverbial 10 foot pole. I sure hope the UW helps me or else I’ll be so sick I’ll be in the hospital for withdrawal symptoms. I mean 300 mgs a day is a Lot of morphine, let alone the dilaudid.

I understand that people are freaked out by the rising epidemic of opiate deaths due to mis-used pain medication. I feel badly about this. After all, addiction is a disease, and maybe they can’t help themselves. But a part of me is furious at them and at the politicians who seek to make headlines with new laws to keep people like me from getting the medicine they need to live a good life. Before I got the opiates I was a mess – I fit the portrait of Chronic Intractable Pain I described above. I spent a lot of time resting and I didn’t do a lot because I hurt too much. I still hurt, even with the meds. What will I do without my usual dose? I’m freaking out here!

No, I’m not – yet. I’m trying to stay calm. After all it’s only been a few months that I’ve felt relatively stable with my Bipolar Disorder. I’m not out of the woods yet and I still get suicidal and all, but I’m doing better than I have in ages. So imagine what this will do to my mood. Pain and mood are inextricably intertwined and if I hurt I often get depressed, and vice versa. It’s a vicious circle and I’m trapped in it for life. I’m not playing victim here – it’s just my reality. I do my best to live with it and I do pretty well, now – but what about 6 months from now? Where will I be then?

I hate that because some people overdose on opiates and die that the country is overreacting so severely as to limit what pain patients truly need to be OK. Obviously none of these politicians lives with severe chronic pain. If they did maybe they’d have some compassion for us. I’m angry at them and at the ones who abuse the opiates I need for survival, thus keeping them from me. The old rotten apple syndrome for sure. I never get”high” from these meds. I’m just in less pain is all. So for them to take my medicine away because some people do get high is totally unjust and wrong. Just because a few people screw it up for the rest of us is no excuse for this travesty. I’ll be writing my  congressperson soon, you can bet on it. Not that it’ll  do any good, but maybe I’ll feel like I’m doing something to change things that are so wrong. It’s an overwhelming feeling to be in this position.

I’m 65 now, and I’ve been living with chronic pain since I was 25. That’s a long time to live in pain. I hate it. But I have a good life because of the opiates that keep me functional and not in so much pain. I can live my life as I choose to. Maybe I don’t deserve to, I dunno. But that’s my depression talking. I do deserve to be OK and not suffer so much. We All deserve that. But the politicians who want to control our every breath don’t give a shit, and they make the laws so I have obey them. I’ll go along, because I HAVE NO CHOICE!! Such is life, eh?

Pissed off royally,

Steve

I Was A Different Person Then…

thumb_photo022_1024

I used to think of myself as a competent person. I started my first business in my early 20’s and created several more over the years, ending with a non-profit Healing Arts Center I founded in 1991. I thought I’d found my place in the world and would be working at it for the rest of my life. But it didn’t work out that way. I finally got “caught out” and had the worst breakdown in my life at 44. I was diagnosed with Bipolar and was forced to take a hard look at my life. What I found was that I hadn’t really  been as competent all my life as I’d thought. I was just Hypo/manic.

I don’t mean to say I never accomplished anything good. I did some good community service work and created some beautiful landscapes and gardens. But it was my headspace that messed me up. I’d thought I was good at what I did, and I guess I sorta was. I got by anyway, mostly by being a good bullshitter. I was good at projecting competence, even when it wasn’t real, as so often happened. People accepted me for who I said I was and who I pretended to be. I was good at it.

Now I look back at the work I did and see how much of it was fueled by mania or sometimes just hypomania. I doubt I ever had any real competence at all, tho I knew enough to get by, as I said. I was a con man, tho I never would have said I was or thought it at all. I always thought I was doing good work and helping to make the world a better place. And I did. But the cost was enormous. And not just to me. I cringe when I think of some of the gardens I planted that weren’t as good as they should have been. People live with my mistakes even now. It drives me nuts.

I know that hiding ourselves is a big part of being Bipolar. (Having bipolar?? – whatever…) A lot of us hide who we really are because we somehow know we’re not quite “right”, even tho we don’t know what’s wrong at the time. I always thought I was just a high energy, hyper person who was very creative and able to do amazing things that other people couldn’t do. I was a bright sparkly light in the darkness at times and I relished it so much. But there was a darker energy lurking just under the surface.

It didn’t stop me tho. I did a lot of good stuff and created some amazing entities. I did so much that was wonderful and I thought I was a pretty neat guy for doing it. I transformed the places I worked at. And the ones I started myself were unique and treasured. I got lots of compliments and good strokes on what a good role model I was for striking out on my own and creating good things for my community. It made me high I’ll admit. Too high sometimes… And we know where that can go don’t we?? Whoa!

I’ve always been a rapid cycler, tho I didn’t know that’s what it was of course. I’d do a big job and then I’d crash and burn for awhile and then I’d get it back together and try again. And the damn same thing again, and again, and again. What a mess! Those down times were awful, often going clear down to suicidal ideation and one time going even farther when I tried to off myself. A bit extreme but it fit my life at the time. Luckily I got caught – but not diagnosed correctly of course – not for years…

I have a diagnosis now – several of them fact. BP I, PTSD, Dysthymia, Chronic Intractable Pain, and more I won’t go into. It’s been 20 plus years since I got that initial Dx of BP and in that time I’ve been mostly a mess so that I really couldn’t function too well. I lived in public housing for over a decade until I met Louie and moved into his home. I’m lucky now but I wasn’t always so lucky. I’ve had to accept that who I am now is Not who I used to be. I just can’t pull it off anymore, and maybe that’s a good thing.

I think I’m more real now than I’ve ever been. More true to who I really am. But those hypo/manias are a thing of the past for the most part. I still get too high/angry sometimes and have to down myself with drugs, but mostly I’m more depressed than manic and stay at a low level of energy and interaction. I’m doing some volunteer work for the city right now and I try to keep something of a social life, tho I lost most of my friends when I had the breakdown and afterwards. But that’s mostly OK. I miss having more friends, but the ones I have are good ones.

I’m still a decent guy I think. I try to live a good life and not mess the world up too much. In fact I try to help it when I can. I garden a lot and teach people about trees and the like. But I’m so much more cautious now. I’m so scared that I’ll screw up again like I did so often in the past. I’m afraid most of the time in fact. That old Impending Doom thing so many of us have. It’s so debilitating at times I can’t even function. I walk carefully through the world these days.

It really does make life more difficult and I look forward to the day I heal from this attitude I have now that nothing I ever did was really real or that I was real myself. I know that can’t be true but it sure feels like it. Those damn feelings again. Not rational at all, but so overwhelming that you can’t ignore them and it feels like they’re all there is to life. I get caught in this so much. I’m afraid to even act much of the time for fear I’ll blow it. I’m not like I used to be at all really, when I had so much courage and self confidence to do such incredible things. I miss that.

That guy is gone and good riddance. He was a braggart and a poseur and a con artist and I’m none of those things in my heart. I’m not who I used to be tho I still have a core of Self that will always be inviolate and that will keep me OK forever, I hope. It’s real now, not some false mania or hyper action that I jump into without thinking of the consequences. I may still do that and I sure still make mistakes, but I feel like they’re really my own now and not some unreal thing I manufactured to get by and get ahead without knowing the results completely. I understand more now.

Yes, I was a different person then. A good one but not always solid and real and true to myself. I was so confident and I miss that confidence a lot. But was it real confidence or just mental illness? I guess it was a little of both, but I think it was tilted toward the illness. Now that I know what I’m dealing with I can do it better. I can’t always control my life, but I try hard and I try to be as real as possible. It seems to be working to some extent and I’m in better shape than I have been in a long time now. So I’m glad I’m different, but I miss the highs and the bravado and most of all the self confidence.

I’ll just have to get used to it, eh?

Steve

Aging with Invisible Illness

Steve7 dsc_029

I’ve always enjoyed getting older. I’ve found that I discover new ways to live my life every day and that as I age I’m developing a greater sense of who I am and how to live a good life. I have a good home to live in and a partner who loves me dearly. I have good food to eat and medical care and many other good things in my life. I’m glad to be where I am at this point in my life.

But I worry about getting older as well. Especially with all the illnesses I suffer from. I worry about what’s going to happen to me as time goes on. I’ve heard conflicting stories about people aging with Bipolar Disorder. Some seem to say that you can get better as you get older as long as you take good care of yourself. That seems to be the way to me.

I’ve seen what happens when people with Bipolar don’t take care of themselves, either because they are too sick to do it or are in denial about having the illness and won’t seek treatment or get help. I have a difficult time with the latter folks who suffer so much and cause the ones around them to suffer too because they are too scared to want to know the truth of their situation.

But I don’t blame them either. I understand not wanting to know I guess, tho it’s not my way of being. Maybe it’d be easier if I pretended that I just don’t have these illnesses and try to live a normal life and see if I could get by OK without the drugs and the therapy and all the help I receive from my partner and friends. Maybe it’d be easier to be in denial, especially as I get older. Lots of people do it.

It’d be so much simpler to not have to deal with all these things I deal with on a daily basis. It’s truly overwhelming sometimes and I crash and burn just trying to keep myself from doing just that. It’s a vicious circle and as I age the circle seems to get tighter around me. The options seem to be fewer and I have to make better choices.

I have to be very careful in how I live with my aging body now having all the same things that happen to anyone who is 63 years old. A lot of my problems are just because I’m getting older and it’s part of human nature to age and deteriorate, at least to some extent. But doing it with illness just makes it seem impossible to handle. It makes it much harder if you’re sick.

I take something like 50 odd pills every day, most of which are allopathic medicines tho many are also supplements I take from my Naturopath. I think complimentary medicine is a good way to go and I see various MDs, a Psychiatrist, a counselor, a naturopath and an acupuncturist, at least for now. We’ll see how that all goes but it’s helping me now at least.

I’ve talked about most of the problems I face on here already but for those new to my blog I’ll update a few things with a link to a previous post I did early on that describes my conditions well. Read this to get a good take on things you probably don’t know about me and my illnesses here: https://nakednerves.wordpress.com/2012/11/23/30-things-about-my-invisible-illnes-you-may-not-know/. It’s grown a bit since I wrote it but it’s still true.

I live with Bipolar Disorder Type II and it’s probably my most serious illness, tho the chronic intractable pain I live with is a close second and at times it’s number one. Both are too challenging to really be able to cope with well or easily. But I do it and I’m so grateful for the help I get to do so. Without the help I’d be dead I’m sure. Such is life.

I wonder what will happen to me in the same way most people do – will my partner outlive me or will he pass first is probably my biggest concern. I really don’t know what I’d do if I lost him. I don’t know if I could go on without him in my life. He brings me so much joy and caring. I guess it’s the way for anyone in love isn’t it? But being sick adds an extra poignancy to it. I not only love him, I need him and his help. A lot…

I have good health care – having both Medicare and Medicaid because of my split disability. It’s good coverage and I’m lucky to have it because it pays for all my medical bills except for some co -pays. But I don’t trust the way things are going in the Congress as far as people on disability and pubic assistance. There are too many mean people who’d like to take it away from me and I wouldn’t have a way to live then.

This is a huge fear – that of losing my medical care for some obscure reason the government comes up with to save money by taking it from the poorest among us. And I have been poor. I lived in public housing for 12 or 13 years before I met Louie and moved in with him so I know I can do that if I have to but I sure don’t want to.

Public housing is awful and tho it’s a good roof over your head and I’m grateful for that it really curtails your freedoms and it’s difficult a lot of the time. At least it was for me. Plus there’s a lot of stigma attached to being on disability and living in public housing. It just adds to the burden of being sick. People can be so cruel…

But really the biggest fear I have is that they cut my medications down to below my threshold for pain and I’ll have to live with the pain I experience on a daily basis without enough medication. I take a whole lot of morphine every day and have to get a special permit to get that much. Each time they renew it I come unglued till it’s approved. Someday they might not approve it, and what do I do then?

I’ve tried to cut back on the morphine but it only showed me that I need this much to stay OK and not be in super bad pain all the time. I need it and I’m dependent on it too. It’s all a hateful situation to be stuck on opiates and listen to all the hoopla about people dying of it and how it’s misused so they want to take it away from all of us. It’s terribly scary and frightening. I don’t know what I’d do without it. Stay in bed all day I guess. Sigh…

And my mind is slowly slipping too. Of course some of that is aging naturally, but some of it is because of the depression and manias I go thru. The pain makes me nuts too so it’s all a vicious circle and as I age it’s getting worse to handle it. I don’t have as much mulch as I used to have to deal with it all. It’s getting to be too much.

I suppose the take away from all this is that when you’re really sick you already have to live your life very carefully so you can survive and thrive. But when you get older and you’re sick it doubles the responsibility you have to yourself and your family to really do a good job of being good to yourself and being smart about what you do with your time and energy.

You only have so much of it as you age and it’s really important that you put it to good use. It’s imperative to live honestly and openly and to ask for help as you need it, which you will, and to accept the good will that there is in the world around you. There are helpers everywhere if you allow them into your life. Don’t shut down as you age. Stay active and awake and you’ll be able to live a good life as you get older, even with Invisible Illness.

Consciously Aging,

Steve