Opiates!!!

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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…

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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

Physical Pain and Mental Health

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There is a strong link between physical pain and ones state of mind. I suffer from Chronic Intractable Pain, as well as Bipolar Disorder and the two are so often conjoined it’s difficult to tease them apart. In fact I usually can’t do it very well. When I hurt I feel depressed more often. And vice versa. It’s an ongoing cycle of misery.

I know this is obvious to anyone who deals with both of these things but maybe it’s not to other people, so I’m writing to educate as well as to empathize. Pain can shift your mood as quickly as a mood disorder can and when you have both going on it’s challenging.

I take medications for both these conditions every day to be alright. It doesn’t always work as I’d hoped tho and I’ve been trying to adjust things a bit lately to see if I can make a difference in how I feel. It’s being a mixed bag. I’m having to take a lot of extra drugs and I don’t like it. But I have to do something…

I’ve been trying to cut back on my morphine lately and it’s not going as well as I’d hoped. I take a large dose of extended release tablets so I can’t cut them in half and I have to go down a lot each dose. I went down a dose and I did OK, but I hurt a bit more. Then I went down another dose and did pretty well but I hurt even more. And my mood was getting bad.

When I went down the third dose I hurt too much and my mood started to go to hell. I was so depressed I was suicidal as I wrote in my last post. I couldn’t maintain well at all and was having a hard time holding onto my good feelings. So I decided that maybe it’s time to go back up on them again. I started out with one dose a few days ago and it’s already changed my moods. I hurt less.

Many of you may know that they used to give opiates for mood control back in the day. They did it because it works, tho the side effects are too dangerous to use it as a mood stabilizer and it kinda freaks me out that I’ve had this reaction to cutting back on my doses. I don’t want to be dependent on opiates for my moods as well as my pain control.

I haven’t spoken to my doctor about all this yet but I will next month when I see him. And if I can cut it back more slowly maybe I can do it and be OK. But it scares me to do it and have so much more pain and instability in my mood when I cut back. I take a large dose of opiates every day just to be alright and I see why I need that much when I stop them a bit now and then.

It’s good to check it out occasionally just to be sure I still need such a high dose. This experiment is telling me that maybe I can take a little bit less but not much. I need help to figure it out I think. I want to take less opiates for several reasons but it may not be possible for me. I may just have to live with it. Sigh….

But getting back to my story about the link between pain and mental health… In order to be OK with this kind of double whammy you really have to take good care of yourself. It’s so difficult to do when you know you need exercise, for instance, but you’re too tired to do it and you’re too depressed anyway, so why bother?

What a terrible attitude that can be. It’s not intentional it’s just the way it is. I have to work extra hard to do things that keep me limber and stretched out so I can feel looser when it gets so that I start to hurt. That requires a lot of exercise on my part and I don’t always do what I need to do. It’s not good.

So I try to stretch most every day and go for walks with my partner who also needs the exercise and it’s good we can do it together. We do the stretches that way too and work out on our weight machine in the garage when the weather allows us to. It’s been chilly here lately so it’s been hard to do that part of it.

Having both pain and a mental health condition requires you to always be on your best behavior. Even when you don’t feel like it you have to try. I know that sounds like a simple answer but it’s all we have. If we don’t take care of ourselves no one else will, and we live in pain and suffering and never gain our full potential. Pain holds us back as do our moods. When they conjoin it’s doubly hard.

Depression hurts all by itself they say, and I don’t know how much my pain is caused by that and how much is the back and body injuries that I have. Like I say it’s hard to tease them apart. Either one can precipitate a flare up – of depression or of pain. Either one can lead to the other in a loop effect that is always there. It feels like there’s no escape, and I guess there’s not. Triggers are everywhere.

But they say Living Well is the Best Revenge, and it’s true for suffering too. Living a good life and taking good care of yourself can go a long way towards alleviating both the pain and the depression when they take a hold of your life and turn it inside out.

It’s not the life I thought I’d be leading at this age but it’s what I’ve got and I’m so grateful for it. Now if I can just stay OK for a little while. I’d like to make it into the new year in one piece… 😉

Be as well as you can be,

Steve

Faith in Life

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This post may not be exactly what you might think it is. Most people when they speak of faith are using it in a religious context. That’s not what I’m doing here as my title might suggest. I’m not a religious person, tho I consider myself spiritual in many ways. But I’m not a Theist or a Deist. I don’t believe in a God or Goddess or a Creator of all we see. I don’t believe in Spirits. I believe in  Life.

What I mean by this is that I have faith in the continued movement of the cosmos, in the turning of the stars and the suns and the planets. I have faith closer to home too. That the sun will rise tomorrow and the flowers will grow and bloom, that the mountains will stay strong and only fall to the ground when it is their time, just as all life does. I have faith in the Cycle of it All.

It’s not that I haven’t been exposed to other ways of thinking. I was raised in a benevolent Christian household and in church I learned the Golden Rule and to respect others. I learned about Heaven and Hell but they never seemed real to me. I played the piano in my Sunday school and the organ in church and I was the president of my Young Life group, an organization for Christian youth. But it didn’t take…

By around the age of 14 I started to question things. It was 1963 and the world was in upheaval. Everyone everywhere was questioning the satus quo and the current beliefs about the Nature of Reality. Politics were the big game of course but religion took a close second place as a strong contender for challenge. Many of us came to doubt the words we’d learned in church or from religious people.

We learned to rely on each other and on ourselves, which is what I still do. I trust my lover to love me, my friends to care for me and my community to sustain and nurture me. I have faith in the goodness of people as well as the badness in them too. I have faith that people will be who they say they are and when I see differently I adjust my thinking to mirror reality.

I’ve also followed many different spiritual paths, from Eastern thought to Western. I did Yoga at a young age, and read about Zen and Taoism and Buddhism as well as mystical Christianity and Rumi. I was initiated into the Way of Medicine by a Native American teacher in my 30’s and then into a form of witchcraft (don’t get scared…) that was mellow and focused on the  turning wheel of the seasons and of life. It nurtured my sense of being a gardener and the cycles of the seasons we constantly follow. But I never deified it.

Of course there were so many politics in the pagan community that I finally came to an ending with all of them. I just couldn’t take the pronouncements of people who said they communed with Spirit and told me things that seemed wrong to me and challenged my world view of loving kindness. Not bad people, but some bad intents were all a part of my experiences and I stay away from that crowd now, tho I still note the passing of the seasons with good cheer and my own simple rituals.

I still have faith in that cycle of the seasons and the turning wheel of life. It helps to keep me going when I lose it and can’t find my way. I Know that tomorrow the sun will rise and the trees will grow and provide solace for me and for those like me who have faith in Nature, and in their fellow humans and in themselves most of all. When you have Bipolar Disorder you need an anchor, and Faith in the cycles of Life is mine.

I believe in a current, if you will, that travels throughout all life and connects us with one another. It’s pretty obvious when you go into quantum mechanics and new wave physics that we’re all made of the same stuff. Stardust some say and I like that metaphor. Of course it’s also a truism. We Are stardust and are made of the same elements that make up the cosmos. We’re all One with it. The same Energy is in us all.

So it isn’t hard to have faith in the way I’ve described it. You don’t need some entity of whatever sort telling you what to do. I’ve had it with higher powers that use me to embody their words and then turn their backs on me when I need them. Yes I have voices in my head all the time and they tell me some strange things. But as time has gone on I’ve learned which ones are goofs and which are real and I only listen to the real ones now. I hope… 😉

I used to follow many of those voices in my head because I was taught that they were the source of my spirituality and my connection to Spirit. But I’ve found that many of them lead me into blind corners and just goof on me and treat me badly. Some are in direct contradiction with my “Elders”. So what do I do then? I’ve learned to keep my own counsel and my own brand of Faith.

I lose it so easily it seems and it’s hard to stay positive sometimes but faith is the thing that keeps me going when all else fails. Faith that it’ll wear off and I won’t be in a depression when I come out of it. It works. I have faith in a change. It always changes if you just wait it out, like a bad drug trip or something. It’s just chemicals in your brain so why sweat it? Keep faith in yourself and all will go well.

That’s what I believe in keeping faith in and so far I’ve done well with it. I try to love myself these days and I have others who love me too and that’s what counts to me at this point in my later life. I have faith in Love, along with Nature and people and all the rest of reality. It is what it is and I have faith in it’s continuance. It’s all I need.

Keeping the Faith,

Steve

Re-Framing the Past

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I seem to spend a lot of my time reliving my past. I try hard not to do this. I do exercises of non-engagement with my thoughts. I do cognitive therapy and change my thinking to something else.  I read and listen to music or watch movies or tv to distract myself. But it’s always there, underneath it  all. All the things I haven’t let go of yet that haunt me to this day.

It comes bubbling up when I least expect it. All the things in my past I wish I could forget. But of course forgetting isn’t really what’s called for. It’s remembering the lessons and then re-framing it to something bearable and acceptable, something that you can live with and feel OK about your life still.

I write a lot in my journals. It’s a mixed bag. I do good work there, in terms of working thru my issues and trying to see where I’ve blown it and where I could make changes. But so often I find that I ruminate, running around and around in my head. Instead of writing I get caught in many of the things  in my past that I’ve messed up on. Ways in which I’ve let my Bipolar disorder run rampant and done things that I feel ashamed of and need to desperately stop thinking about. So I’m working on re-framing them in my mind as to what actually happened.

You see I think that memory is a tricky thing and that no two people ever remember the same event the same way. Just as we can’t step in the exact same river twice. We know that we change and grow as we age. so it’s absolutely true that the person who did those things in my past is Not the same person that is siting here writing this piece. I can look back at what that person did and divorce myself from the attachment to the feelings I have about the event. It’s like unhooking yourself from a tether in a real way. It’s the first step.

Sounds simple doesn’t it? There are plenty of people out there who will do trainings with you to help you do this, and charge you a lot of money for it. That’s fine, but I think we can do this for ourselves, tho it’s hard to do and I can’t say I’m always successful at it. But I keep on trying to get it right and I’m getting better at it the more I do it, as is usual when you practice something. You just have to see yourself as a separate person from the one in your past. You are, if my theory of memory and not stepping in the same river twice is true anyway.

Letting go is hard for me and I seem to have a tendency to hold onto the bad things easier than the good ones. I wrote a bit ago that it’s wonderful how when you’re happy you tend to forget the bad times and when you’re depressed you can’t remember the good times. But it’s not always like that. Sometimes the bad times gain ascendency and take over the mind, and when that happens – look out. Things can become irrational very fast and it takes a lot to hold on and stay in the present and not back in those bad times in the past that just popped up into your mind.

I dunno why memories do it that way to me. I guess it’s just the nature of them. I can be fine and having a wonderful time and all of a sudden out of nowhere a memory will come into my mind of a time in the past when I messed up bad and my world shifts and I’m in Depression, bad. All it takes is a second but it takes me away from this reality. I have to stop it immediately or I lose it and go back to where I was and I hate that, ya know?

So I have to re-frame it when I get over being upset. I can’t do it when I’m in a bad place too well tho I need to learn how to someday. If I can re-frame something to a better scenario when I’m OK then it’s better the next time it gets me when I’m not OK. It’s not like I forget the past or it didn’t happen. It surely did and I need to remember the lessons I learned from that time. But I don’t need to beat myself up for them and feel like I was a monster like I do sometimes. It can be hard to remember that you’re really a nice guy…

I guess I’ve talked around this enough and I should say what it is I actually to do when I re-frame things. I go back to the time and I look at the context of where I was at and what was happening at the time and at who I was and the person I was pretending to be then and see how hard on me it was to try to pretend I was OK all the time. Usually that’s when I mess up. I saw that I often did/do things that were not nice in ways that I saw as simple self defense at the time but in reality may have been cruel and unkind to others. It’s way different to see yourself as a scared person trying to survive than it is to see a mean one that was bad to others.

I cut myself some slack is what I do then. I see myself differently, as a person in need of compassion, not judgement. I relieve myself of having to have been a perfect person then, whenever it was – 40 years ago or last week – it’s all the same. I absolve myself of wrongdoing and I empathize with myself for being tough enough to make it this far in life and not kill myself before I got here. It’s been close more than a few times….

I Don’t Forget the Lessons tho. That’s pretty key for me. If I don’t learn something in this difficult process then what good is it really? It’s necessary to remember what you’ve done in life, it’s just not necessary to look at yourself in a poor light because of it. I guess some people call this forgiveness. I just call it Acceptance of my whole Self.

Whatever you call it it’s required for re-framing your past. You have to let go and get over it and go on with things. Oh, it sounds so simple, doesn’t it? But we know it’s not. Those of us with a mental illness that causes us to berate ourselves all the time for things we’ve done and not done and never giving up on it. We know that our minds can be our allies or our enemies. The trick, I think, is to try your best to befriend your mind. Maybe I’ll write about that sometime…

Remember to allow yourself to Let go….

Steve

Tranquility Through Music

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I’ve always loved music. My folks turned me on to it when I was a little kid with their albums from Reader’s Digest of the Great Classical Pieces and other such delights. Kinda corny stuff in a way but it got me listening to classical music at a very young age, and then piano lessons for several years in the same vein taught me to appreciate the sounds I was listening to. In fact I was so into classical that when rock and roll came to me I found it too simplistic for my tastes at first. Obviously that changed.

Now my tastes are very eclectic and I love all sorts of music, except that stuff they play on elevators or when you’re waiting for a phone call to pick up. I don’t really consider that stuff music myself. but then a lot of what I listen to would be considered off the wall by many people I’m sure. I like what might be termed space music, “new age”, electronica, or world music a lot, as well as folk, jazz, blues, alternative, eclectic, classical and definitely rock and roll. But I tend to gravitate towards music that feels healing to me.

My partner and I have been involved in a fun project for the last few weeks. He’s been taking all our CD’s and cassettes and putting them on a computer storage unit we have so that I can access them all from iTunes on my MAC and I’m now able to play most of my favorite albums online with only the click of a mouse button. I’m listening to all sorts of things I haven’t heard in years. Wow.

It’s amazing what it’s doing for me. I listen to old stuff I used to hear in high school or college, and it takes me back there, as does the music that takes me to other times and places. It’s a nostalgic journey as well as being in current time. Because of the set up of iTunes I can go thru all my albums, of which I have over 400 now, and just find things arbitrarily or in some sense of order depending on what I want. I browse. This way I hear things I might not generally listen to.

Right now I’m listening to Kitaro, a Japanese New Age/World Music performer whose music sets a tone of quiet energy in my mind. It helps me feel like I’m in a different reality while still being in my own world. I can listen and travel with the music as I write this piece and it gives me pleasure and peace of mind. Both of them are things I need in my daily life and since I’ve been putting all these albums on iTunes I’ve been listening to more and more music every day.

I’m particularly fond of music that takes me to other worlds and countries so I have an extensive collection of what I call World Music only mine’s not just the fusion of cultures you hear from white folks all the time, which I’m not knocking – I love it in fact. But I have a lot of actual music from around the world that I listen to. I call it folk music at its core since it’s often the folk music of the culture I’m listening to. It gives me insight into the rhythms of that culture and how they move and dance.

I used to dance a lot with my music but I don’t tend to do that so much as I’ve gotten older. I need to get back to it I guess. It’s good exercise and makes me feel good to do it. And anything that makes me feel good is a good thing I figure. But I don’t have much room to dance where my computer is set up tho I have some space I can gyrate around in and enjoy it. We recently figured out how to jack the computer into the stereo system so I can have the music playing all thru the house. Now I can dance!

I tend to spend a lot of time in my mind and music really helps me to tone that down and let my demons rest some of the time when I’m engaged in listening to it. It keeps the bad thoughts away so well in fact that I find I’m listening to music most of the time these days whenever I’m around the computer, which is a lot of the time. Keeping the thoughts in line is an important part of my ongoing health routine. I need to stop ruminating so much and focus on what’s good in my life , which I do mostly, and music helps me do that.

I suffer from a myriad array of symptoms that keep my mind occupied with thoughts of doom and gloom too much of the time. Having so many illnesses, from chronic pain,to Bipolar Disorder, to arthritis and fibromyalgia and more, I’ve found that I need to take a multi-pronged approach to my healing. As such music plays a vital and indispensable part of that. I’d let go of it for too long and finding it again has made a huge difference to my life. It’s a great gift.

I hope you have a place where you can go to listen to the music that you find to be the most helpful to you in keeping yourself in a good state of mind. It’s a gift to have it available to us at all sorts of times when we need to calm down or relax and let go of our worries and difficulties. It’s such an easy thing to do for so much enjoyment and benefit. I’m an inveterate music fan and I hope you are too.

Musically yours,

Steve

Illness in a Relationship

Louie and Steve

It’s a challenging thing to do to be in a relationship when you’re so sick. When you just want to go hide in a hole so much of the time and close the world out. When you feel like you just can’t stand a cheerful face in the morning and wish to hell that you could just be alone and never see anyone ever again. But that’s not how it is when you’re in a relationship with someone. You have to learn to cope differently.

I’m a lucky guy. I have a man who loves me to death and would do most anything for me, and has. He’s really a great guy and I love him immensely and hope to be with him for the rest of my life. This is a different thing than I’ve known for most of my life. I’ve been in several relationships but none that were this intense or had the potential to last as long and be as much as this one. We might even get married but I’d lose my benefits so I can’t. But that’s how we feel about each other.

What I want to write about is the way that I try to cope with living with a basically healthy, cheerful, stable person when I’m so often none of those things. He greats me each morning with  “Yay, Steve is awake and up and about again! Hoorah!” Sounds goofy doesn’t it? And it is. It’s also so sweet it makes my heart clench when I feel so rotten and like I’m the last person in the world who should have someone say something nice about me. Why should I be showered with loving attention?

But I accept it because not to would just be churlish and tho I can be that way I’m choosing not to do that these days. I’ve grown up a lot in the last 5 years we’ve been together, first as friends and lovers and then as partners. We’ve come thru a lot in that time, more than many people might have done. We’ve traveled across the country a couple of times and down to CA twice. That’s a lot of one on one time and if you can travel well together you know you’ve at least got a chance. And we do travel well together.

And we went thru the death and loss of my only brother to AIDS during the time we’ve been together and he helped me thru that difficult time like we’d been best friends forever. He was totally there for me and didn’t ever complain about the difficulties, which there were, and all the problems we had to face with his passing. He earned my trust then and has kept it ever since thru many issues.

I have a hard time not resenting him sometimes tho and I really hate myself for that. It’s unwarranted and unkind, but perhaps understandable in the circumstances. He’s so healthy and really doesn’t understand what I live with tho he does try as hard as he can and he does a good job. But it’s impossible for someone to really understand someone who’s got as many health problems as I do and is in so much pain and distress when you’re Not. It’s OK, it’s just at odds with one another.

This is where communication comes in. Without it we’d be dead in the water. We talk. Not obsessively like I could do, but he’s not that way and so I’ve toned it down a bit and realized that maybe I talk too much sometimes about my problems. It’s good to give them a rest sometimes. But I do talk with him and just let myself be who I am, whatever that is, and he accepts me for that and doesn’t hassle me. Even when I just discovered that I’m totally impotent he just said “well you’ve had a good run and we still have a good sex life so don’t worry. I still love you.” I had a hard time with that one, but he’s right and I know it. He’s stable that way and I’m not so much so. So I adapt and change and grow.

And he’s changed a lot since we’ve been together too. He listens to me better than he used to and he’s more patient. He’s seen enough times of my losing it and at the end of my rope to really get it by now. He listens to me tell him when I feel like I want to just die and he reminds me of all I have that’s worth living for. He keeps me here as do some of my friends, and for that I am so grateful. He may use humor when I feel like crap but I’ve learned that underneath it is a deep caring for me and so I may not laugh at his stupid jokes but I appreciate where they’re coming from and it helps me. And he gives me hugs too. I like the hugs a lot…

Many times I’ve come to him in tears when things didn’t go my way or I hurt too much or I still feel like the world is crashing in on me and he’ll listen and offer some obvious statement about how things might be and it changes me. It forces me to live up to all my ideals about how I know I can be in the world with other people. I have to change my attitudes and expectations and not just to please him. I don’t mean that at all. I do it because he gives me another way to see things that is so different than mine that it helps me. And I need all the help I can get, believe me.

So tho it’s a hard way to live sometimes and I really hate it on certain days I let myself get up and face the day with him every day, open and alive to the myriad possibilities. It’s a great life and I wish everyone who wanted a partner could have one like I do and experience the joy I’ve found and the stability. I’ve been more stable since we’ve been together than I have been ever maybe. I dunno, it’s hard to tell. I’ve been such a mess so much of my life. And I still am sometimes.

But not nearly as often and I know this relationship has done this for me. That, and a hell of a lot of hard work on my part too. It’s work to be in relationship with someone as close as this. But it’s worth it every minute, even when we argue and disagree we’ll talk about the problem because we want to work things out and deal with our differences in good ways that are clean and honest. Honesty is paramount for me. I need to know I’m being dealt with fairly and I do the same for others. And I get that with him, even when it’s hard for us both.

I’m not saying we’re a perfect union. I don’t believe there are perfect unions I guess. But what we have is so amazing to me that it’s worth all the work I have to put into it all the time. I have to swallow my bile and get over myself and just let things be. And he has to do the same. It’s a mutual affair and we’re doing well at it despite our problems. So for me being in a relationship and being sick isn’t insurmountable, in fact it’s a good thing for me and I thrive in it.  I wish the same for others.

Peace,

Steve

Despair Takes a Holiday

Breaking Clouds

Well I knew it was bound to happen. I knew that if I just waited it out I’d feel better in awhile. Not that I’m not still depressed. I am. But I feel like I’m in a strange sort of bipolar mixed state, where I’m depressed but also a bit hypomanic and so I was able to do things like go for a walk with my partner earlier today in the brief Seattle winter sunshine, and to go to an appointment with my Oncologist later on.

He told me my PSA is way down and I still have no trace of the prostate cancer that attacked me a couple of years ago and caused me to undergo Brachytherapy surgery, the kind where they insert radioactive pellets inside your prostate. We used to joke that I glowed at night and it made certain things easier.. ahem…. Geez, if I can joke like that I Must be better eh?

Anyway, in looking at some things in my past, I’m clearly doing pretty OK now. I’m still dealing with some severe problems, and I’m still upset about them. I don’t like it when things get me down like this tho and I had to first just give in to them and let them drag me to the bottom of the Pit of Despair. Then I wallowed around down there for whatever length of time I seemed to need to and then I started to come back out again, like now, finally.

That began yesterday and I’ll credit my counselor for at least a good part of it. It helps to have someone who’s known you for years as a therapist and can tell you that you’re in a depression and not thinking clearly. I knew I wasn’t OK, but I couldn’t really grasp it and hold onto it till we talked and I got the objective observation that I was over magnifying my problems as I usually do when I’m in that state. So, thanks to him and to good counselors everywhere who help us out when we’re down.

I also talked to my partner about my troubles and the issue that has me most in despair – my sexual dysfunctioning. He can’t do anything about it and neither can I but it helps to have someone to voice things to when you’re struggling with an issue that affects you both, even if it’s a problem with my body. He doesn’t judge me for it and is simply there as I need him to be and it helps so much.

I’m lucky to have a lover in my life who is so unflappable even if it galls me sometimes when he doesn’t react the way I want him to, like I do in other words….<grin> He’s a blessing in my life and I’ll keep saying it as long as we’re alive and together, hopefully forever.

They say Life is Uncertain and that you should eat dessert first. Well I haven’t been eating much dessert but I have had a few holiday cookies. And I’m letting the spirit of the season infect me as much as I can. I’m just not up to writing holiday cards yet, but I will be in time. But I have worked at decorating the house and yard with lights for the Solstice, as you can see on my other blog in my most recent post called “A Garden Of Lights”. How can you stay depressed and write a post that glowing, literally?

I’m lucky to have 2 blogs going at once. I decided when I started them that I’d always be positive in my Gardening blog and I have been. I leave my troubles to this space where I purposefully use it as a place to talk about the hard things in my life. Kinda Bipolar I guess but it works for me.

This blog is so helpful to me, to be able to share my thoughts with the world, whether anyone reads it or not, tho I do so appreciate the readers and the feedback they give, believe me. Talking about my problems has always been one of the ways I do best when I’m in a stew and this blog allows me to do that. So thanks for reading it.

I’ve also done some conscious work on myself in the last few days, and I’ve allowed things to just shift of their own accord, in the Way of the Spirit of Life. Time does heal me when I allow it to. My motto of “Give it Time” is true for me and has been for years. I just need to remember it and not get all twisted up in my angst and anger at my problems.

Tho actually anger can be a good sign I think, compared to bleak despair and depression. Anger has energy to it and helps me shift out of things faster, as long as it’s appropriate and not directed at the wrong targets. I’m careful to not just vent, a lesson I learned from a boyfriend years ago who did that to me. I thank him for the lesson but I don’t allow people to vent at me anymore. It’s damaging and I don’t do it to others if I can help myself, and I usually can.

So even tho I’m still unhappy and having to struggle to maintain a decent state of mind, I do seem to be taking a brief holiday from my despair and I’m grateful for that. It’s good to have breaks in the drudgery. Who knows where I’ll be at tomorrow after all? The one constant is Change and I know that one all too well. I’m glad I’ve changed a bit recently and just hope that it stays with me for awhile. I hope the same for those of you who are struggling with your own demons right now too. Hang in there and give it some time. It’ll change….

In a Holiday Spirit,

Steve

I’m Losing It

Losing It

I usually try to stay positive in these posts. I may complain a bit about the hard things but over all I try to offer useful suggestions from my own life that maybe can help out some and talk about ways I’ve learned to deal with my illnesses and troubles. But I find I can’t do that today. I’m at the bottom of the Pit and all I can see are the slimy walls of my dungeon. And the thing is, I know I’ve put myself here and I can eventually get out, but I just Can’t do it right now.

To be fair I’ve had some setbacks lately. I’ve had some things happen in my life that I needn’t go into because they’re just things after all and it’s not the things so much as my response to them that matters. And my response isn’t what I usually  can muster up. Usually I can look at the things and see where my thinking has gone astray and turn my mind to better things and thoughts. I can change my reality and be OK with it even if I’m not happy exactly.

But I’m really suffering right now and it’s bleak and all I want to do is die. I want to take a knife and slice up my wrists like I did one time when I was psychotic. I want to take all my morphine at once and never wake up. I want to drive my car into a freeway embankment and crash and burn like my soul feels it’s doing. I want to simply cease to exist.

Of course I’ll do none of those things. I just need to vent sometimes and now is one of them. I tried to give thanks for the good things in my life, and the thing is, it doesn’t help worth crap. None of my multitudinous bag of tricks is working for me right now and I feel powerless and hopeless and defeated and I hate feeling like this. I hate it when life gets the best of me and I can’t respond and can only react to it. It’s not how I think of myself and it’s awful.

But it’s not so uncommon. I feel like this a lot I’d say and I’m in a minor mixed state of Bipolar right now I think. In other words I’m enraged about my state but am too depressed and apathetic to do anything about it. I won’t kill myself be assured. I have too much to live for and I know that. But who cares? I don’t right now. So what if I die? Who’ll miss me? Well, a lot of people would and I know that and it keeps me from doing something stupid. But I still feel this way.

I know this is going to make me sorry when I post it. But I’m going to anyway. I know that there are a lot of other people out there who feel exactly the same way I do and can’t give voice to it because they’re in even worse shape than I am. Or maybe they’re just too reticent to speak bad vibes on here. I dunno. Maybe they’re just smarter than I am.

I just know that it helps me to talk about it and so I am. And I believe in keeping it Real so I talk when I need to. Sure I have a counselor and I’ll see him next week. And I’ll talk to my partner and friends and explain what I’m going thru. And it eventually will change I know.

That’s the one continuous thing in the universe. Change. It Always will change and sometimes it’s for the better and sometimes it’s for the worse. But it never stays the same for too long. Or maybe it is too long. It feels that way to me right now. But it’s what I hold onto and it gives me the courage to stick with it and just let go into the flow of things and let life work its magic on me. It can do wonders.

I’m reading a good book now called “Emotional Intelligence” by Daniel Goleman. I highly recommend it. It posits that our emotional IQ is far more important in how we are able to live a good life than our academic IQ. I’ve known this for years and it’s very validating to read a scientific discourse on it.

I score pretty high on it actually. I’m terrifically empathetic and I can  put myself in someone’s shoes without a thought. I understand my thinking and I can change my thoughts at will much of the time. I’m resilient and I reinvent myself frequently and with good results. But too often, as now, I’m also a  Slave to my Passions and that’s my downfall. My emotions become my reality and I Know they’re Not, but I can’t get out from under the whip.

I know it’s because of the Bipolar disorder and I could just blame it on that, but it seems too facile and easy to do that. It feels like it’s my fault still and I have to do something to overcome it nevertheless. Even tho it’s a debilitating illness and I can’t stop it anymore than I can stop hurting so much by some miracle. I’m still responsible for how I feel at the basest level. We all are I believe.

I’d really like to end this on a positive note but I don’t know how to do that right now. I’ll just say that I know things will be better in time and I’ll get thru this. I’ll wait it out and if nothing else maybe I’ll watch a movie about war in ancient China 2000 years ago which is so far out of my realm of consciousness that it will definitely change my reality, at least for a couple of hours. Maybe that’s copping out but so what? It works.

And I’ll thank my partner for making me lunch and give thanks for the food I eat. I’ll do the work. And hope that in time it’ll net me results of feeling better. But right now… right now I think I’m losing it and I can’t stop myself from falling.

Peace to you,

Steve

Why I’m Thankful for My Mind

My Amazing Mind

It’s kinda hard to be thankful for something that so very often won’t stay where I put it. My mind that is. I try to put it in good places and think good and positive thoughts. But it won’t stay there. It seems my default settings are set to feel apathy, despair, hopelessness and out right suicidal ideation. It’s hard to be thankful when you feel like you’d rather be dead much of the time. When you feel so awful and crazy it’s work just to breathe. When you have Depression or Bipolar disorder, or any number of other similar conditions. You really have to work at it.

There have been a lot of posts written about thankfulness on here in the last few weeks and I’m sure there will be many more. But I think there’s a great challenge to be overcome to be grateful and thankful when you suffer from illness, especially mental illness, when the tool you use for that thinking is so deranged and out of commission so much of the time. When your primary decision making mechanism is faulty and broken. When it betrays you and you’d really rather just shut down and shut out the world. You have to find the things that work to help you do it. And for me it’s my mind that does it for me.

I use my mind to trick myself with little things. Sometimes it’s just being able to get out of bed in the mornings and get over the pain of moving. Yay! I made it out of bed! There’s something to be said for this. Or when I make it outside my house when I’m so agoraphobic that I fear that the world will come crashing in on me the moment I step outside my sanctuary that it takes all my courage just to do it. That’s something to be thankful for. It may seem petty and small but it’s a Huge big deal to me. And it’s cumulative. One trick leads to another and together they add up to a grateful life. Thanks to my mind.

I’ve developed these tricks to help me do this practice of thankfulness every day to try to keep the despair away and stay in a mode of gratitude for all the good things in my life. And there are so many good things. First of all I remind myself that I have a home to live in. And I have good food to eat and clothes to wear. These are things most people take for granted, but I give thanks every time I eat food, or get dressed, for the beings that have contributed with their lives that I might live. Little things maybe, but they make a difference in my mind. And they keep me connected with the web of life around me. This will help me.

I give thanks for my partner, even when he bugs me, because without him I’d be alone and I’ve been alone for too much of my life and it sucks. So I trick myself into letting him joke me out of my state of mind. It’s work. Sometimes I wanna tell him to just shut up and leave me alone. But I never do that. I may not be able to take it all in, but I try to. I try to let it shift my consciousness and it will when I can do that. Not everyone has someone to help them like I do. I’m so grateful for him. Love from another person is such a gift it overwhelms me sometimes with its power. I give thanks for all those people who love me in my life whenever I can I think of them, and it’s my mind that does this for me.

I also keep a picture of my parents’ wedding up on my bookshelf where I can see it every day and I remember that I was brought up in a home where I was loved and cared for. Where I was Wanted. I lost them both several years ago but I still remember them and what they gave me and how they taught me to respect all people and ways of being, to be grateful always for what I had in my life. I’m lucky to have known them and had them to raise me this way. Too many people don’t have that. My mind knew to put that picture where I could see it like this and remember them.

So even if I use these little tricks to help me, it works. And it works because of my amazing mind, that has taught itself to do these things and to recognize what I have and how lucky I am to have them. It reminds me of them. I’ve got a whole toolbox of these tricks I use to stay thankful and it’s my crazy mind that actually does it for me. So even tho it often betrays me with its doubts and delusions, I give thanks the most for my mind and how it allows me to live in gratitude and be thankful as much of the time as I can. It’s enough.

With thanks for all our minds that can do such amazing things when we allow them to,

Steve

Note: This post was inspired in part by one on Gratitude in tiemthief’s blog “This Time- This Space”. I’m sorry but I don’t know how to link to it but if you go to my last post and click on her profile and then look at it you’ll see the link to her site. Cumbersome I know but I really wanted her to be found. It’s really worthwhile and I thank her sincerely. Credit where credit’s due…