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

Is it Mania or Just Anger?

I’ve been struggling with some emotions that are too raw and close to the surface lately and I’m worried about my reactions to things. I seem to be on a hair thin trigger these days and my anger levels are right below the surface. I know that the current political landscape, in particular the race for president, is affecting me greatly. But it’s more that that, and I wonder whats going on? It seems worse since I got on this current regimen of Wellbutrin and I wonder if this is one of the subtle hints of fracturing that I’ve experienced before on it, but in more obvious degrees. It’s confusing.

I read an interesting article on mania and anger the other day. A leading psychiatrist here in Seattle said that it was wise to beware of labeling anger as mania in Bipolar disorder because it was more often caused by substance abuse. It’s an interesting theory. I’ve not been diagnosed with substance abuse, but I’ve smoked pot since I was in high school – some 50 years now- so obviously some would say that’s my issue. But I’ve always used it carefully and now it’s strictly medical and I smoke it sparingly. My psychiatrist doesn’t mind and my counselor and ND both suggested I use it. So I don’t put much stock into this notion myself. Denial? Maybe, but I think not…

I believe that it’s more than just that. It’s dreadfully close to wrecking me. It Feels like mania, not just anger. And it’s too sharp and too intense and takes me over so much that even little bits of angst can throw me into a fit of rage where I seriously want to hurt someone or myself or destroy the world. Typical, I guess, but it’s no fun at all. Not like the bright sparkly hypo-manias I’ve had so often in life that inspire me to do good work in the world. This is a destructive mania and I’m afraid of it.

I haven’t had a lot of florid manias in my life. Mostly they’ve been long term experiences where I entered into lands uncharted and tried new things that haven’t been done before. Like creating an innovative non-profit healing arts center with my credit cards, working myself to the bone and finally ending up in bankruptcy and disability. I had a Vision you see but I couldn’t see the whole picture and I ended up in disgrace and struggling with it’s futility. It hurt me badly. It was a 4 year manic episode. And no one even noticed, because I hadn’t been diagnosed yet.

Most of my manias haven’t been that obvious to other people. But they have still been filled with lots of anger and rage, thru my whole life. I can remember times when I was a kid that I would explode in rages that terrified my little brother and caused my parents to label me with ADD as an adult. They told me my anger was palpable and horrible when I was young and had those fits of rage. Sounds like the beginnings of Manic Depression to me, eh? I was a horrible little child I think, tho no one in my family is alive to tell me how bad it really was. I can’t remember much about it but I know I wasn’t a bad kid per se, just angry and unpredictable.

So back to my proposal here. Given my experiences in my life I can’t say what is causing me to be so angry these days. I know I can’t discount the situation in the world. It really does affect me. I’m super empathic and I feel the suffering of others deeply. It hurts me. It also makes me mad. This is a problem and I haven’t figured out what to do about it yet. I hope I can keep it under control but I dunno. I haven’t broken anything or slit my wrists, which I’ve wanted to do many times. I haven’t exploded at Louie or any of my friends. And I actually haven’t hurt myself, except with my thinking, which is bad enough.

I try to calm myself down when I feel this anger growing but it’s very hard to do. I often have to resort to drugs and take some Klonopin, or when it’s really bad, some Abilify, that will knock me on my ass and put me totally out of it. At least it’s better than the rage but it wastes me and I don’t  really like that. But it’s better than the anger for sure. If I don’t know where it comes from and what to do to stop it I can at least alleviate it some and that’s good for me. I also use CBT to tell myself to Stop It! But that doesn’t always work out too well. I’m often too far gone, unless I catch it early. Sometime I can, but not always.

I think this is a bit of a manic response to situations that I can’t control and that cause me distress to the point where I crack up and lose it. Or is it just anger? I’m still confused. It’s been there so long, but then maybe I’m just an angry person. I don’t think so tho. No one I know would ever call me that. But I would. I feel it so much. Sometimes I know that my anger is invigorating and it helps me come out of my depressions really well. But this stuff is out of bounds and isn’t connected to reality. It’s troubling. I’m at a loss as to what to do besides trying to just live with it and try my best to deal with it safely for myself and others. So far, so good. Maybe it doesn’t matter what it is, maybe what counts is dealing with it well. Sounds good to me…

How’s Your anger level?

Steve

Rebirth

thumb_SCOC0004_1024

It’s been almost two years since I wrote a blog post here. It seems both shorter and longer than that. I just re-read some of my posts and comments from the past and saw that in one comment I said I was just about to start with a new Psychiatrist. I did that, and man, has it made a difference! I was with my old one for about 12 years and in that time she almost never actually started a conversation with me. She was OK mostly, but she was an old school therapist and had the attitude that her silence was helpful. I didn’t find it that way and I finally got tired of it and quit seeing her. I’m so glad I did.

My new Psychiatrist is also a woman but she’s much younger and more in touch with the current thinking on Bipolar and meds and what to do about it all. I’ve got new diagnoses – Bipolar Type I (I’d been Type II for years, supposedly), PTSD and Dysthymia. Of course the DSM says you can’t be dx’d with both BP and Dysthymia, but who cares? They both fit me, as does the PTSD, tho I’m no soldier and my traumas are of a different type and order than combat shock. But they still haunt me and cause me significant distress.

I don’t want to talk about distress today tho. I want to talk about the fact that I’m actually in much better shape than I was 2 years ago when I started this new regimen. It’s taken some time, and some of that was awful. I tried new meds that landed me on the floor with horrific reactions. I often get that when I try new drugs. They usually make me crazy because I get too high a dose. As happened some of time until I got thru to her that I needed to start Real slow. So we started me on 75 mgs of Wellbutrin along with my Abilify, Klonopin, Buspar and Ritalin. We “very” slowly took me up to 450 and things never got crazy at all. In fact they even got better.

Wellbutrin is often known as the “Happy, Horny, Skinny” pill. Well, none of that has been that true for me, unfortunately. I could stand to lose a couple of pounds and my libido could definitely use some tickling since my Prostate cancer several years ago. But what I really wanted was the Happy part. In a way I’ve gotten that, and I’m not so suicidal so much these days. It’s still a threat but not too often and I can usually get out of it in time. I talk to Louie and he tells me I’m OK, and that he loves me, and boy does that help. He’s my personal savior at those times and I rely on him a lot to help keep me OK.

But mostly I have to do it myself, as do we all. I’ve learned so much in the last 20 some years since I was first diagnosed. My life is so much simpler than it has ever been. I live a quiet life with Louie in our home and garden, with a few friends and family to keep me socialized, along with some volunteer work. I have my rituals, like walking in the garden every morning to say Hi to the plants and get some blood flowing in my limbs and brain. (See my blog “Gardening in Greenwood” for more on the Gardens…) I also do some exercises and keep a good book on hand for when I can’t stop the negative thinking and need to go into some other person’s head for awhile. It works, when I can get myself to do it…

I still beat myself up too much but I keep trying to quit that. I use Cognitive Behavioral Therapy a lot to stop those thoughts that get away from me and start to ruin my day. It can happen so damn fast it floors me. So not everything is all rosy and perfect. It never will be and I know that. It’s a circular journey with BP and it alway comes around again despite whatever you do it seems. But still it’s not so bad when it comes screaming down the line at me now. I have chemicals in my brain that help offset the noise and fury. I guess they actually help, tho it’s been so long in coming I half don’t believe it. I’ve tried Soooo many drugs…

I’ve also realized that being happy might not be the best goal I can have for myself after all. I find contentment and peace far superior these days. It’s not that I’m unhappy that much, tho I am sometimes. But I look at life a bit differently now and try my best to stay in the present with my feelings and emotions and I think my Emotional IQ has gone up a few points over this last bit of time. I’ve always done a lot of education with myself on my illnesses and that’s been a great help to me. But being less invested in being happy all the time has allowed me to rest a bit in simple calmness.

I’m not usually that calm – who is when they have BP? But I try to stay chill, and it’s working often enough that I feel like I may actually be in some sort of recovery. I kind of feel uncomfortable saying that because of that mostly constant feeling of impending doom I still have, but I’ll risk it here and see how it goes. I know I can pass most of the time despite my illnesses and that’s good, for the most part. Sometimes I wish people could see what’s going on with me, but that doesn’t happen unless I lose it, and I try not to do that so it’s still hidden. That’s why I called this blog Naked Nerves of course. I may be better, but my next post may say what hell life is, because those nerves are still naked…. even in Rebirth.

And so it goes,

Steve

Robin Williams – Too Sad

MORK AND MINDY - 1970s - 1980s

I’m very sad again today. Yesterday I heard that Robin Williams had committed suicide. I’m having a hard time with this. He was my age and according to many observations he suffered from Bipolar Disorder like me, tho apparently he himself never said as much from what I’ve read. But he sure acted like it didn’t he? I was always amazed at his frenetic energy and classic manic behavior in his routines and films. He was a comic and dramatic genius as an actor and a kind and generous soul as a human being. I can’t even begin to say how much he gave to me and others throughout his life of such sorrow and joy. He did what so many of us do with this illness – he hid his struggles well, tho he was also very open about them, but he couldn’t hide it in the end. I already miss him so much.

This event is what is called a Trigger for many of us. It’s a situation that flips our emotions into a negative state that affects our ability to cope and stay OK. It pushes us towards whatever form of mental illness we carry with us and adds to our difficulties of staying well. Anytime I hear of someone who dies by their own hand due to the “push” of Bipolar it triggers me and affects me deeply, and this case is no different. In fact it’s a really hard one because of how he made me feel and how much I identified with him. Not that I’m a comic genius or anything. Far from it. But I related so well to his energy and compassion for the world. He did so much to make it a better place just by being himself. Like so many of us with Bipolar he used the impetus of the illness to fuel his comedy and dramatic turns on screen and TV. Like so many of us he also didn’t hide that energy from us, he reveled in it and I loved him for that.

Tho he never said he had Bipolar Disorder there are many who would look at his life and say it was obvious to us. I’m one of them I guess. Like his most famous mentor Johnathan Winters, who also suffered from Bipolar, he was a lightning rod for that incredible energy that made his work so real and so human. He embodied so many great character traits in his work and life and made the world so much better thru his presence. It’s being hard to write this as I keep crying, which I keep doing, and I can’t see thru the tears. It’s been like this ever since I heard about it. If I weren’t doing as well as I am right now myself this would push me into a depressive syndrome quite easily. Triggers do that. Just like what happened when my cousin’s wife died of Bipolar back in February. It really got me bad and I was so depressed for weeks after her death, tho she didn’t kill herself it turns out but mistakenly took the wrong meds and passed out and fell into a swimming pool and drowned. I feel the same way with hearing of Robin’s death. It’s triggering some bad emotions in me and I feel so sad and bereft.

You see I look at Robin’s life and how he was so very successful and how much money he had and the fame and acclaim that filled his life. And I wonder how if he lived with all that and more in his life and still couldn’t find a way to get thru it without killing himself, how will I ever do it myself? It scares the shit out of me. I look at him and see how easily it could be me there on the floor. I don’t have the resources he did, but I have good support, and tho he must have had it too, it wasn’t enough in the end. Will my support be enough for me? I wonder… Especially the fact that he and I are the same age and come from similar cultural backgrounds of coming up in the crazy 60’s and all affects me. It just feels too close to me and I fear for my well being. But as I said I’m doing well right now and am not prone to such depression at the moment so I think I’ll be OK. But it’s challenging and hard and I hate it. How will I be tomorrow? I really don’t know. Still sad I expect. Still filled with these difficult emotions.

I’m not going to write about all the films he was in or the things he did to help the world. You all know of most of those things and there are lots of articles out there now praising him and mourning his death. This is just a very personal response from me about his decision to end his life. I don’t blame him at all tho I’m so sorry he chose this path. But I’ve come too close to choosing it myself, in fact I have in the past and I still get close to it too often so it’s hard. What I have for him is compassion, and I’m tying to have it for myself too right now. I just wanted to say a few things about him and how he affected me and how triggers can come at us from out of nowhere at any moment and impair our ability to cope and live our lives. I hope this hasn’t triggered any of you because of my writing but if it has I hope you get thru it as I’m trying to do. Being grateful for Robin’s work in the world and his personality and his ways of being so real about his struggles is important for us to do.  He was a good model for us in how to live an amazing life with Bipolar dogging your steps, even tho he ended his own life in the end. I understand him I think. That’s why it’s so hard. I get it. I suspect many of you do too and I hope you do OK with this tragedy. I hope I do too. I guess only time will tell.

Missing his Manic Presence,

Steve

Note: photo as Mork by Everett Collection/REX

Bored With Bipolar

BKGRN021

 

You’d think that after almost 19 years of being diagnosed with Bipolar Disorder and 63 years of living with it, I’d have come to terms with it by now. And frankly I have, many times. But right now, and for the last few months, I’ve been at odds with my illness and it’s been anything but acceptance that I’m feeling. I’m feeling ripped apart by this disease that has so impaired my life that I have spent hours and days and weeks feeling like I should just kill myself. That I should just end it all and be done with it.

This where it gets Boring. I feel so totally boring in my depression. I’m not a fun guy these days. I don’t feel like laughing at funny things or enjoying the accomplishments I’ve had in my life. I feel like this is too much for me to handle and I just can’t keep doing it. I’ve talked with my psychiatrist and counselor about going into the hospital just for a change of venue for awhile to see if that would kick start me out of this state I’m in now. The Psych. even suggested things like ECT and Vagus Nerve stimulation, all of which scare the hell out of me.

But I need to do something. We also talked about anti-depressants. It’s been a few years since I tried one of them and maybe it’s time to try another one, tho so far I’ve failed on all of them and many have made me more ill than I was before I took them. So I don’t have much hope that they’ll fix things any but I have to keep trying. I’m working so hard on trying to change my attitude and perspective and focus on gratefulness and the abundance in my life. I have a good life and I know it, but it doesn’t seem to make any difference now. I just wanna be done with it all. This is so boring and is why I live a life that is just impossible. I so miss my hypomanias when I felt great and like I could take on the world. Sometimes I went too far with them but I’d take that any day over these crushing depressions I live with these days. A little up time would be nice…

But those times have ended pretty much due to taking an anti-psychotic for several years now. The Abilify cuts down on my hypomanias and keeps me on the low end of the spectrum. I don’t get to experience those times of intense creativity and joy and brilliance that accompany hypomanias. All I get to live with is the depression and how it eats away at my soul. I feel like I’m dying and that I’ve gotten into such a deep hole that I can’t even discern any way out of it. I wrote awhile ago about being stuck and that’s still how I feel.

I don’t have anything interesting to say here, which is why I titled it as I did. I’ll admit that being in touch with a depressed person is a boring thing to have to do. We’re just no fun and we’re a drag to be with. We had company over last night and it was all I could do to pretend that I was alright and could just seem to be OK even tho I’m not sure I was. I so wish I had a space in my life where it’s just OK to be depressed and alone and not impact others with my situation. But I’m in a relationship and that means I have to try to be OK for my partner at least as often as I can just to be fair. He has to put up with so much. I don’t understand why he bothers. I don’t think I’m worth it at all anymore.

I used to have a decent opinion of myself and felt like I had a handle on this Bipolar Disease. But I don’t feel that well at all anymore. If feels like I’ve got so much going on that it will be impossible to ever regain it. I feel so useless and like I have no reason to live anymore. I’m in deep despair and disillusionment. If it doesn’t break soon I really don’t know what I’ll do. I can’t kill myself because it just wouldn’t be fair to Louie and my few friends to do that to them. I do know better and that it’s a permanent solution to a temporary problem. But I don’t really care. I’m too far gone. I had a good friend tell me that any one who tried to commit suicide is just a coward and it really felt bad since I’ve tried to kill myself before many years ago and have never felt bad about that. But now I do. I feel like other people will judge me for it and wouldn’t understand why I did it if I did. It’s all boring tho, isn’t it?

I don’t have any morsels of wisdom to share today. I need help badly and I don’t know where to get it. I’ve slipped so much in my self esteem and self perception that it feels like I’m a totally different person than I used to be. I saw my MD the other day and when I told him I was stuck in depression and that I was stuck in feeling pain and stuck in the knowledge that I’d be in this state for the rest of my life that he just shut down on me and it’s like he didn’t even care anymore. This may be my perspective and he’s fine with me but I dunno. I think he, like me, was bored with me being still upset that I have to live with taking all these damn drugs for the rest of my life just to stay alive. Not to thrive but just to be alive. It hardly seems worth it. It doesn’t in fact.

Anyway I guess I should stop now. I know some people have been worried about me in that I haven’t posted here in such a long time, and I doubt that this post will ease their minds, but at least now the truth is out there still and the angst I feel is clear. At least it’s the true experience of someone who has Bipolar Disorder and can’t control it at all at the moment. Oh I can fake it pretty well for an hour or two but it’s hard to be upbeat for long. I just wanna hide out and not see anyone at all or interact with the world at all. And I have people coming to visit me soon and I don’t know what I’m going to do. I definitely can’t be present with them for too long but I’ll try.

So enough whining and complaining and pissing and moaning. I told you at the start it’d be boring and it sure is isn’t it? I long so much for a change and it feels like I just can’t pull it off by myself and the help I have isn’t doing it. I’m open for something new to try and see if it’ll work. So far nothing is effective and that makes me feel despondent and discouraged. Maybe someday they’ll find a cure for this illness, but until then I’ll keep trying to stop being so boring and be more positive. But I have no faith that I can do it. I guess we’ll just have to wait and see, eh?

Wishing you an interesting life,

Steve

Stuck!

Picture 158

I have a good life. I have a wonderful partner who loves me to death. I have a good home to live in and I’ve been able to improve it and add to its beauty, especially thru my love of gardening and what I’ve done there. But I’ve also added to the inside of the house and it feels more like mine instead of one I just moved into 4 years ago. I have good food to eat and a nice car and clothes and all I need to survive and be happy. But I’m not happy, and it’s driving me mad.

Or maybe I’m already there. I can’t seem to stop my brain from telling me that I’m a worthless piece of crap and I should just kill myself to make the world a safer place from idiots like me. It’s nonsense I know and I’m not a bad person. But this Bipolar Disorder really has taken hold of me right now and it won’t let me go no matter what I try to do.

I’ve been diagnosed with this dreadful illness for almost 18 years now and sometimes I really think I’m getting much better. I guess I am in many ways. My counselor and psychiatrist both think I’m doing well and treat me like I’m into recovery and on my way to feeling better. But it’s just not true. I’m still a mess most every day lately and it’s getting very challenging to live in my psyche.

I’m still in the Underworld despite the fact that I usually seem to come out of it around the Spring Equinox. I did some as I started to see the plants begin to bloom and grow. That helps me a lot to see Life arsing again and fulfilling it’s promise of beauty and continuation of existence. It’s so obvious to me that Life will find a way to continue and things happen as they do without our input or actions.

I have so much going for me I can’t understand why I’m so messed up and so full of suicidal ideation that I spend time every single day lately thinking about how to kill myself. I won’t of course. I couldn’t do that to Louie and my friends and family. I know this but I don’t know what to do. I’ve tried so many of my tricks to get my mind to shift out of this mess I’m in but I’m not having much luck. I’ve written a lot here on how I use certain ways of thinking to change my thoughts but right now it’s all bunk to me. Nothing is working.

You’d think I’d be on anti-depressants or something but I can’t take them because they make me crazier than I already am and have put me into the hospital more than once when I’ve had a bad reaction to them. They hurt me and I long for a pill or something that will change my negative self image to one that is more in line with reality and lets me enjoy my life again.

I know it’s terribly hard on Louie to see me go thru this. We talk about it often and he helps me so much just by listening to me and letting me know he cares. He saves my life more often than he knows. I’m so lucky to have him in my life and without him I’d probably give in and just off myself. I can’t seem to find my Joy button anymore and it hurts so much. Depression is a real physical disease and it Hurts to be depressed in your body as well as your mind. I’m already in pain from injuries I’ve sustained in my life and my dose of pain killers would kill most people.

So when you add in the depression it adds itself to the pain of my physical body it becomes an overload and I can’t seem to maintain. I fake it a lot. I think most people think of me as a positive person trying to make the best of a bad situation and that’s probably true. But it feels so phoney and fake to me to always have to pretend to be OK when I’m really not. It’s still too scary for me to come out about my Manic Depression in many venues and so I suffer in silence as so many of us do.

I don’t tell my neighbors, usually, what’s going on or my friends even. I don’t wanna bother them and have them turn away from me like so many have in the past because of this illness. It’s caused me to leave so many situations that just caused me distress and fear and led me to worse states so that I’m left with only a few friends now and I’m isolated too much of the time. I know I need to get out more but I feel too lousy and can’t seem to break out of the cycle.

I know this is a really lousy post and I apologize. This has been building up in me for so long I just had to vent a bit and explain how it feels for someone who is as together as I am to go thru such terrible disillusion. I can’t recognize myself anymore. I don’t know who I am or why I’m here and I’ve usually known that. I’ve had visions of my life since I was in high school and I’ve followed them, often to glory but often to falling apart.

In the past 18 years I’ve gone thru so many changes. From the initial recognition of the illness to learning the tricks of the trade in how to keep yourself well to falling apart again and again to being OK again now and then. But it’s been awhile and I’m feeling the loss of my usual bright self and energetic persona. I just feel like a wet lump of dough or noodles overcooked and it’s like moving thru oil or honey just to walk some days. It’s very physical as well as mental.

I’m hoping that things will shift soon and I’m still trying to be OK. I talk to my counselor and psych. and to Louie and other friends a bit but not too much. Maybe it’s time to go back to the Bipolar Support group I used to go to. I wonder. Sometimes others with the same illness can be good support for one another and it’s helped me in the past. I need help now. Badly. I really don’t want to implode and end my life. It’d be so stupid and I know it always changes, but it’s so hard to wait it out and feel so powerless about it all.

My diagnosis is that of Bipolar Disorder with rapid cycling and mixed states, which means I cycle back and forth from high to low too often and often will be in both places at once. It’s very confusing when I can look at my self and see how great it is and then in my inner experience it’s so terrible. It’s truly cognitive dissonance. I can’t seem to hold onto my brain and keep it running on the smooth track of self love but instead find myself on the hate train to hell. I’m so tired of it.

Is this going to be the way it is for the rest of my life or will they someday find a cure for this horrible illness that has so wrecked my lfe and made me into a different person than I used to be? I don’t like who I am right now at all… I have hope but not much. The same goes for the physical pain I live with. Together they overwhelm me too often, like today when I hurt so bad I’m at a 7 on a 10 point scale and it feels like it. I’ve had to take extra pain meds already and it’s only 11:30 in the morning.

I could use more pain killers it seems. But with the way things are going with the pain medication situation it’s so tricky just to get what I do. I can’t imagine what I’d be like if I lost the morphine. I wouldn’t be able to even function. I’d be in bed and in pain all the time and would eventually give in to it and just give up I suspect. Add in my occasional migraine and it’s a total picture of pain. It’s just too much.

OK I’ve talked enough here. I’m sorry this isn’t a more positive post. I am trying to get better. I really am.  But it seems so impossible that I feel the way I do when I have such a good life and it feels so unfair to me. Not just to me but to Louie and my other friends who have to deal with my moods and pain all the time. It’s hard on them and I’m grateful to them for staying with me and being my friends. I couldn’t do it without them.

I hope that my honesty and lack of inhibitions in talking about this will help others who suffer from this same illness feel more comfortable talking about it themselves. It’s OK, and even necessary, to air our hard stories about how difficult this illness is. I’m a big fan of education and if even one person reads this and understands more of what it’s like for us it’ll be fine with me. It’s Real and we’re Not faking it, despite the stigma we face… This is Life for way too many of us…

Wishing you a good day today,

Steve

At Peace at the Ocean

IMG_4878

My partner Louie and I just spent a week at the ocean about 3 hours west of Seattle and a bit north along the coast. We went to a little town called Moclips, right next to the Quinalt Indian Nation lands. We had a full week of sunny weather and no rain with just a bit of  breeze at times to keep the air moving, as it always does near the sea. It was a peaceful time.

I spend so much time writing about hard stuff in this blog that I thought maybe it was time I wrote about how well my life is going right now. I’m stable, for the most part, with my Bipolar Disorder and my back is in decent shape except for a twinge or two now and then lately. It went out on me a few weeks ago but it seems to be OK now, I hope.  It’s much easier when I’m not in such pain all the time.

It’s been very nice here in Seattle too lately, with sunshine and clear weather, tho it’s supposed to go back to rain again tomorrow. I hope I can get some w0rk done on the veggie garden today before that happens. Louie is out of town for a week at a funeral so I have the house to myself, a mixed blessing. I miss him a lot but I’m getting a lot done too so it’s a trade off I guess.

Spending time at the sea near the Rain Forest was an incredible experience. I never feel so close to a sense of divinity as when I’m at the forest or some other wild place on earth. It just feels like I’m in my Temple and it’s all the spirituality I need to stay solid in my sense of connections with all life on the planet and beyond it. It’s easy to feel connected in a rain forest.

It’s so truly primeval and primal in it’s lush growth and fullness of life. There are creatures growing everywhere you step or look and it’s OK because the Forest Service has built in some nice trails that let you be able to go into the forest because it’s so dense and not hurt things. It isn’t a place to just wander in the woods at all. You have to cut your way thru and that’s not something I like to do. I prefer to find old animal trails and follow them. If I do it at all.

Being with trees that are hundreds of years old is a remarkable experience. It really puts your own life in perspective. We matter so very little in the great scheme of things yet to ourselves we’re all we have and must make the best of our lives while we have the chance. I don’t believe in reincarnation or an afterlife, and believe we have to make the best of the time we have here on the planet to make a good life and be good people.

When I’m stable like this and not wandering all over the place in my mind I can truly appreciate the wonders of the natural world. I can slow myself down enough to listen to the woods and the sea. Really listen and hear what the voices of the land and ocean have to say to me. Mostly I get that I am a part of all this and that my presence would go unnoticed by those creatures of the forest and so I try to leave it as I found it so no one will know I’ve been there.

As they say – take nothing but photographs and leave nothing but footprints. That’s the way I do it. Of course along the beach the sea covers your tracks almost immediately after you leave them but in the rain forest they could last for awhile, til the next rain comes and washes them away. It makes one’s visit seem very transitory to these ancient beings who inhabit this land.

We saw the world’s largest Spruce tree and some of the other large trees of the rain forest area in this valley we went to. See: http://gardeningingreenwood.wordpress.com/2014/03/18/trees-of-the-rain-forest/ for more information on the specifics of these amazing trees and how many of them are in this valley. It’s an ancient land and largely untouched by human hands.

Being with these huge and ancient trees always makes me feel humble and insignificant. The stories these trees could tell if we only knew how to listen to them. I “hear” them talk to me all the time and always have, but I question whether or not it’s the trees or just my mind that is talking to me. I don’t really care. I get good information from them and they help me stay sane so it’s all good to me.

Whether or not it’s actually the voices of the land or sea or trees or birds or animals talking to me doesn’t really matter to me if they seem to be reasonable and tell me useful things. When they just goof on me and tell me stupid things I’ve had to learn that sometimes the voices in my head are just that – voices in my head.  I should ignore them. But the good ones I listen to and get good help on occasion. Why not?

This last week at the ocean gave me a much needed break from my usual reality of chores around the house and working in the garden, as much as I love to do that, and just from city life for a little while. It’s so beautiful there and I could hear my thoughts and those voices in my head were mostly kind to me and gave me solace instead of grief as they do so often. At the ocean it was all about the natural world and I am clearly a part of it.

This is so important to me when I tend to lose it so badly at times and feel so disconnected with life. It’s impossible not to feel connected with it when you’re in the midst of such riotous abundance of it like you find at the rain forest. Life is just so full and rich there and it’s easy to wonder how humans fit into this harsh environment.

But really it’s not that harsh as it seems. The Indian communities along this coast always had plenty of food to eat from the sea and had time to make beautiful works of art that they used to decorate their ceremonial places and their own bodies. They had give-aways where they shared the wealth among them and always took care of the lesser members of the tribe. It’s a bountiful area to live in til the white man came and took so much of it away.

I won’t go into that now because it’s too painful for me. I feel a deep resonance with Native cultures and always have. I learned many of their ways studying with a Native medicine person for many years and learning the ancient ways of his people. It helped me a lot but I had to leave in time and I stayed as long as I should have and needed to find my own path again.

I’ve done that now, tho I tend to fall off of it now and then, as I write about here so often. But as I said this post is about how well I’m doing and I want to end with that part of it. It’s not often that I can write such a positive piece as this one so it’s kind of a big deal to me. I go up and down so often with the bipolar and the pain and all the rest of it, that to find a moment of peace is worth a great deal to me. I’m grateful I had this time.

Thank you Mother Ocean,

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

Bipolar Takes Another Life

CLOUD050

I’m totally devastated right now. I just got a call from my favorite cousin telling me that his wife had just taken her own life this morning. She was 67 and had suffered with Bipolar Disorder for many many years and tried to kill herself several times before. Always they were able to save her before, but not this time.

I couldn’t stop the tears as he described the circumstances of finding her face down in their swimming pool when he got up today. He’s been in very bad shape himself from the weight of caring for her for all these years and getting sicker himself as it went along. He couldn’t talk much but he knew how much I loved her and how it would affect me so he called me.

This is so sad to me I can barely write about it but I feel it might help me if I do so I’m going to. I loved this woman so much. She was so funny and articulate and bright. She was the best school administrator in her district for many years before she retired because of the bipolar disorder. She was a dynamo and a jokester par excellence. She was the light of his world and a good friend to me too.

We were born on the exact same day only she was 4 years older than I am. 11/11 for us both. We used to spend a lot of time together when I lived in CA but I haven’t seen them as much since then. They were here for a short visit a couple three years ago but she got sick when they were here and had to cancel the trip. We saw them two years ago when we went to CA to see relatives of mine.

I was shocked to see how she had deteriorated even then. She always had a hard time figuring out which meds were the right ones for her to take. It’s a cruel irony to learn that the antipsychotic that has pretty much saved me from mania was the one that eventually killed her. It scares me so much. Not just for the drug but for what I might do to myself someday.

See I spend a lot of time wishing I was dead. I wish I didn’t have to say that but it’s just true. I have suicidal ideation frequently and it makes life hard and difficult. I Know I can’t kill myself because of what it would do to my partner Louie and to my remaining family and friends. I’ve decided not to do it ever. But I don’t trust my mind and so I’m scared.

This could so easily be me we’re talking about, or maybe it could be you too if you suffer from depression or Bipolar disorder. It’s a cruel disease and we tend to forget that 15% or more of people with it end up killing themselves. It’s a life threatening illness tho it’s still considered a stigma to talk about it and try to heal those of us who have it. I hate it right now with a vengeance…

It could too easily be Louie making calls to my family to tell them that I couldn’t stand the pain any longer, as my cousin couldn’t do, and that I’ve ended it. My own experience when I did try to kill myself was instructive to me. It showed me that when you reach the end of your resources to endure the pain you believe you have no choice but to end your life. That’s what happened to me. I couldn’t bear it any longer.

I’m  lucky I did pills then and the docs pumped my stomach and gave saline and got rid of the drugs. I thought I’d been clever, even calling the Poison control center in my town so to make sure that the pills I took would  kill me.( I said it was about my roommate…. sick..) But it didn’t work and I’m so glad at this point. I didn’t think of others at all  but I don’t blame myself. I was doing my best. It just wasn’t good enough.

So it must have been for her. She reached the point where she’d tried to kill herself several times before this and was in so much distress and confusion from the wrong antipsychotic that she wasn’t thinking right anymore. I haven’t been able to talk to her in some time because she couldn’t handle the phone, so I don’t know where she was at at the end, tho I can guess. I know it too well myself.

I don’t know what else to say. I’m drained of energy and feel like a wet dish rag from the crying and sadness I feel. It’s hard to imagine I’ll never see her again. She always made me laugh and was one of the closest people in my family to me even tho we weren’t really related except for marriage. She was Family to me and my family is one short today. We’ll all miss her dearly and mourn her forever.

Grieving for the loss of a dear friend,

Steve