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

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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

Bored With Bipolar

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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!

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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

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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

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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

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

Depression Abounds

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I’ve been reading a lot of posts on the Bipolar Blogroll this morning and it seems like a Lot of people are suffering right now with severe depression. Like the type where you just want to die or hide out from those in your life, or tell all your friends to go away and leave you alone. Bad stuff. It hurts to read all these posts because they’re so close to home for me right now.

I’ve been in a depression for weeks now I guess. It’s so hard to tell sometimes. I just feel bad and out of it. I wake up crying every day and not just for me, it’s for the world and all the suffering in it. I cry at the strangest things and at the most inopportune times. It’s gotten worse as I’ve gotten older. Too much pain and sorrow to have seen.

But I know I’m not alone in this. There are so many of us who suffer from this horrible disorder. Sometimes it feels like my whole being has been taken over by an alien life form and I don’t know who I am anymore. I used to be a happy person in my life, didn’t I? I think so. Or at least I could fake it well enough to get by.

But faking it is real hard right now. I try to write about it but I just get stuck and can’t say what I want to say. I’ve deleted my last two posts here because I just hated what I was writing so much. I wonder how many others do that, or do they just let it be and see what happens. I can’t risk that I guess.

I feel too vulnerable already. Like my world is falling apart. And the strange and awful thing is that my life is really pretty damn good. I have a lover and partner who loves me and a house to live in and food to eat and even have mental health care that’s pretty good. I have a lot of good things in my life, but I’m still suicidal. Why the Fuck do I feel this way?

Going up and down all the time gets so old. It’s so hard on you and takes away your sense of self and your ability to just feel OK. It’s a cruel disease and I’ve read that they’re now being able to image it on a MRI when someone is having a bipolar episode. Maybe it’ll be better if we can “Prove” we’re sick, but I dunno.

There’s so much stigma against mental illness. I’m pretty open about it to people who I feel safe with, but it’s a difficult call and I’ve been burned more than once by being honest. So I watch who I tell but I tell everyone I can. Does that make sense? See, I figure that only by telling our stories will we ever gain the respect of the world and let them see us as humans who are damaged and sick and need help instead of ridicule.

So I keep trying to stay OK and not kill myself. It’d be way too hard on my partner and my few friends. I’ve lost most of them over the years due to this disorder because it does have a chilling effect on relationships at times. Especially when they don’t see you as sick.

That’s why I wrote about this as an Invisible Illness. It’s not often that people see me as sick or ill in any way let alone in my head. I hide it really well and I function well enough to be able to pull it off. Hit in my weaker moments when I’m all alone and feeling bad about myself and none of that matters. All that counts is the way I feel at this exact moment.

My counselor tells me that I’m in a depression when I feel this way and that it’ll change. I know that. I guess that’s the one awareness that keeps me going. But I don’t believe it much when I feel this bad. It’s hard to stay positive tho that’s my usual attitude. But sometimes it’s just too hard as I’ve spent days being depressed every single day lately and it’s being way hard on me. I want to die so badly.

But I won’t do anything rash or kill myself. People care about me even if it’s not that many. I’d leave a big hole in my social circle if I wasted myself, so I won’t do it. I did try it once and failed, fortunately, but I could try again and I sort of made a pact with myself that I wouldn’t do it so this is all so much more anguish because I can never end it.

If I thought I’d stop it by dying I would, but I doubt it’d end the suffering , it’d just transfer it to someone else, and that’s not cool. Other people would be hurt and I can’t do that to them. They’ve cared too much for me to betray that confidence they have in me now.

I do love myself and I’m so grateful for all the good things in my life. But I sure wish the depression would give me a break. I want to stop my antipsychotics so I’ll get hypomanic but I know that’s a bad idea. I’ll just get irritable and angry if I do that, too manic. I would love to feel Good like I used to when I’d get hypomanic. I used to revel in it but these days it’s so rare and damaging it scares me. And it’s “just” hypomania not full blown stuff. It’s bad enough.

They say Bipolar II is “Bipolar Lite” sometimes because we don’t have full blown manias, tho I have had them but never got caught in one…. So I was diagnosed with BP II and it fits me cause I’m so depressed so much. I can’t imagine thinking this illness is anything like “Lite” tho. It’s so hard on me how can it be a light disease? It kills people damnit.  It’s not an easier way to be than BP I. It’s just different.

I have a lot of rapid cycling and mixed states, when I’m either going up and down all the time or I’m in both places at once. It’s not supposed to be possible with BP II but there it is. I do have mixed states a lot and they’re so dangerous. I have plenty of energy to kill myself and the desire too, so watching out is the way to proceed.

I just need to keep it up. With the pain and the depressions I have a lot to deal with. But I have a lot of good help and support too. Without it I’d be dead for sure. So I’m grateful and thankful for my life despite all the traumas and dramas. It’s a good life and it’s mine. What else do I need?

Struggling with the rest of you,

Steve

Hoist On My Own Petard

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It figures. Last time I wrote on here I did a post on re-framing my past and how I tried to look at my life differently so I could unhook the bad stuff and be OK with it all. So what happens? I run into an old friend I haven’t seen in 10 or 15 years and all of a sudden I’m thrown back into the times I knew her and what all happened then. She was around for much of the dysfunction I went thru when I had my breakdown in ’95 and before and after that. So she knows my story, or thought she did….

I thought I could just relate some of what happened to me back then, but I found myself slipping into the emotions of the past as all the pain and hurt I experienced when I fell apart back then came flooding back. I couldn’t shut it out and I wrote her things I wish I hadn’t just to vent some and get it out of my system. I couldn’t stop myself and I made a fool of myself, tho she kindly didn’t think so, so maybe I’m being too hard on myself. She thought so.

I was caught right in the middle of the situation I’d just written about where I had to look at things differently. Over the course of a few emails we worked out the issues thru discussion and I came to a feeling of acceptance, which was my goal, but it sure was hard to do. I talked in my last post like it was something that I’m good at doing, and I guess I am, but man it’s hard. I had to re-frame in progress and that’s not easy.

I found myself defending my actions instead of just trashing myself tho I did plenty of that too. You see I feel responsible for losing it and letting the Non-Profit Educational Learning Center I created in ’91 fall apart when I fell apart in ’95. It was a great community resource and I lost it and couldn’t keep it going. I thought I’d be doing it for the rest of my life but life intrudes in strange ways and changes things.

My emotions got pretty whacked by the experience back then and it’s clear I’ve still got some residual anger and bitterness about it all, even tho I can say I did a great job of it and helped a lot of people. But that flies out the window when I go down the low road to depression, which I did in the time it took me to write a single email. Wow.

That resonates with my earlier post on Cycling. What I did was do an Ultra Rapid Cycle in a couple of minutes. It really did happen that fast. I’ve had this happen hundreds of times but I still can’t get used to it very well. It’s so powerful. I feel overwhelmed by it and I hate feeling disempowered. I’m used to being in control, tho that’s a joke when you have Bipolar Disorder with rapid cycling and mixed states so often, even tho I’m a model of recovery in many ways.

I see my lesson here as once again being myself and accepting my foibles and crashes and not beating myself up for them. I do the best I can and it’s pretty good. I’m in a bit of a shaky state right now in that I’m both trying to figure out which of my supplements is making me sick, so I’m doing a trial of quitting them all and then adding one back at a time to see if I can see which ones hurt me. And I’m also cutting back on my morphine and that’s causing some withdrawal I think.

I take a huge dose of the stuff for my pain and it comes as 30 mg extended release tablets so I can’t cut them in half. So when I decided to go down on them I had to do it 30 mgs at a time which is a big dose. I went off the first 30 and I did OK for 2 weeks so I went on down another 30 and it’s been a week and 1/2 and I’ve been feeling it some. My pain is coming back and I feel lousy. So I have those extra bits of emotional triggers to add to my distress in the emails I did.

It’s all part of my life and I have to just go with the flow and do the best I can. It’d be so nice to cut my opiates and not be so dependent on them for my survival. But that may not be possible. I may have to take a large dose of them for years, as I have already. And of course I still take my Bipolar meds too – an Anti-psychotic called Abilify and some Klonopin and Buspar for anxiety. I can’t take antidepressants like most people with BP, as they can make us manic. Not good…

So what is this rambling post all about anyway? I guess I’m just reflecting on my own attempts to live my life without so many regrets for my actions and behaviors of the past, and acknowledging that sometimes I’m a bit too facile in thinking that I can fix things easily. I can’t. I made a lot of mistakes but I did a lot of good work too, and I have to remember that part and not put so much emphasis on the bad stuff.

It’s that simple but it’s so difficult to do. I keep saying that and I don’t mean it to sound like I’m a victim. I don’t feel like one. But I do feel  out of control often and that’s a challenge for anyone, especially when your mind is playing games with you and you hurt all the time.

But life is grand anyway. I have so many good things to be grateful for and I give thanks for them every day. I’m grateful for the people who read my blogs here and on other sites I belong to. I don’t get out as much as I’d like to and I intend to change that soon, but the web has been a salvation for me in terms of airing my opinions and feelings about my life.

This blog in particular is about my feeling Invisible in my Illnesses. That’s still my main theme here, and as you can see, all that I’ve just been thru was invisible to anyone else I didn’t let on to about it. I told my partner of course but he gets it pretty well and cuts me slack. I have to cut myself the slack tho. And I am. And here I feel like maybe I’m Visible for a change.

Do you see me?

Steve

Stable but Still Cycling

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I just turned 63 this week so I figured maybe it’s time to check in here again. I’ve been so busy trying to stay OK and working in my garden and on the house. Through it all I’ve been healing from my surgery last May that I discussed I was going to have in my last post. Finally I’m healed up enough to enjoy having sex again so that’s a huge relief and my mood has taken a giant turn for the better since then. Hooray for Bionic Sex! But I still cycle all the time and it’s sometimes getting to me bad.

I did a homework assignment for my counselor the other week. He asked me to write down the good things in my life. Instead I did an old exercise I’ve done for 30 or more years. At the top of the page I wrote down “Who Am I?” and then I wrote down whatever came into my head. You can’t censor it, you have to write it all. Positive or negative. It could be “a piece of crap” or a “sparkling bit of light”. I get all sorts of weird concepts but overall it gives me a snap shot of my feelings and thoughts at the moment, and I had a lot of good ones in there with the bad.

It’s a great exercise and gave me a different perspective on all the negative emotions I’ve been going thru lately. It was like a catalyst and it changed my thinking for the better. Even in the midst of working hard on the house and gardens and accomplishing good things, I’ve still had this recurring cycle of downward spiraling thoughts that make me feel like dying and like I’m a useless human being. This is old stuff to those of us with cycling Bipolar I know but I’ve been doing it recently so I’m writing about it. I’ve been worse many times and couldn’t have put this on the page before.

My mind feels like the picture I posted. All open to sensations and input from the outside world that I can’t keep out very well. I shift each day from one kind of feeling to another without much break sometimes and it’s hard to cope. But I’m a lucky guy in that I have a wonderful partner to help me thru it all. He keeps me grounded and we’re so in love that the it’s wonderful and makes me feel like I deserve to live perhaps, tho it’s still a hard call sometimes. I’m so lucky to have him…

Anyway the exercise that I did is one I’d really recommend to other people struggling with their self image right now. It’s really easy to do but you have to honestly write down all the things you hear in your head, whether they’re good or bad, that’s what counts. It’s all who we are and none of us are purely saints or devils. We all have a range of possibilities of acting and thinking, and if we focus on that and the positive aspects of our lives it’s a lot easier on us, tho it’s often hard to do it.

Today has been especially hard for me. I’m trying to cut back on my Morphine a bit and I did so last night and I didn’t sleep well and woke up in pain and in a terrible, awful mood. I was so angry listening to the news I had to quit and go take some meds to calm me down. I also decided to write this post. It all helps me when I get this way. I’m better than I was an hour ago but I still feel wonky and uncertain. I feel fragile and like I could break too easily. A common feeling and one I know how to deal with pretty well. Drugs aren’t my only answers. I  have some nice Ravi Shankar sitar music playing on the computer as a backdrop to aid in my mood restoration, and I’m actively Trying to feel better. It’s working…

I suppose most people would say that I’m a good model of Recovery in my Bipolar reality. I can interact with people well and mostly enjoy my life. But these cycles keep me reminded that I have a serious mental illness that I have to constantly monitor even in my best of moods. I can snap in an instant and become totally enraged or become so depressed I want to die right then. It’s the story of rapid cycling and many of us do it. It’s hard to stay OK when your mind keeps sabotaging you.

I have a hard time with the biochemical explanation of Bipolar Disorder, but I don’t know what else to say about it. I clearly can’t control my mind on occasion no matter what I do, and I’m good a rearranging my  mind. So I feel forced to accept this diagnosis as a biochemical disorder that is beyond my absolute control, even tho I have a lot of that control. But I don’t always have it and I have to recognize that and go with the flow. If only I could remember how good life can be when I’m depressed. It’s a curse to forget that while it’s a blessing to be able to forget how bad the depressions are when you’re not in them. What a paradox, eh?

So I’m trying my best to go with that flow and to stay stable in the midst of my mind telling me I’m not OK. I’m doing good with it all but I sure wish life was different sometimes. It gets so hard to stay sane in an insane world. I’m hoping to be able to write more about my journey in this blog this winter when I have some time. There are a lot of things I’d like to say if I can get the words out and make sense of them.

And if my words can help others at all I feel blessed and grateful beyond measure. I get so much from all of you on here that it’s only fair to try to give back when I can. I try to do that in sharing my story and hope that some one recognizes themselves in it and is comforted by the empathy and camaraderie. I do get it…

Be well, and cycle carefully,

Steve