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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Rebirth

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

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

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

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

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

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

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

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

And so it goes,

Steve

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

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

Bipolar Takes Another Life

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

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

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

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

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

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

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

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

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

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

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

Grieving for the loss of a dear friend,

Steve

Inside a Hypo-Manic Episode

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“No I’m not just upset. I’m way beyond that. I’m truly enraged. I can’t stop my heart from racing and my pulse is pounding. I feel like I want to kill someone, anyone, but especially myself. I want to blow the whole world away. I feel way too much energy in me right now and I can’t sit still.

My brain is boiling and my eyes burn. My head feels like it’s about to explode and the energetic spasms in my body are thru the roof. I have to do something really quickly to stop this or I’ll do something I’ll regret later I’m sure and I don’t want to do that. But I feel so lost and disoriented and out of control. I Hate this shit.”

That was me yesterday when things were really bad. I couldn’t even write about it because I was too irrational. I wasn’t making any sense and I knew it and I had to take action, as I describe below, to keep myself from doing harm to myself or others, or just plain trash my belongings. And I still feel it today too, damnit. Why do I feel this way? It really doesn’t matter. What matters to me is How I feel.

If there are ever any times I doubt the manic part of my bipolar diagnosis it’s when I stay depressed for so long I think that part of me has gone away. It takes times like this to realign myself with my full nature to recognize that the manic part of me is still alive and well, unfortunately.

I usually stay well below the midline with my moods. I’m usually depressed or on the verge of it. It’s my default state of being. But now and then something happens to me that makes me so angry, irritable and enraged that I explode and lose it entirely. That’s when I recognize the mania that I embody as well as the depression.

Now is when I feel the Manic-depressive aspects of this damn illness. I can stop these feelings better than I can the depression because I have drugs to help me with mania and I don’t with depression. Still, I got so angry and enraged yesterday that I thought I was going to do something really bad to myself or something else. I really felt like destroying everything.

So I took a dose of my anti-psychotic and a dose of an anti-anxiety medicine and in time they calmed me down to the point of being almost comatose. I could barely move after awhile and had to lie down on the couch to decompress and just rest I was so wiped out from the drugs. But that’s a better place to be than destruction.

Technically I’m only supposed to feel Hypo-mania, not True mania, because I was originally diagnosed as Bipolar II, which doesn’t include getting truly manic, just a bit below that, which is called Hypo-mania. That’s mostly true for me in my life. But hypo-mania is just as dangerous as mania if you don’t control it. It can still kill you or make you do things you’d rather not do.

It may not last too long but it lasts long enough to totally degrade my thinking and make my life a living hell. And it’s not so easy on my partner either. He tries to help me but I get so shut down that I refuse all offers of help or suggestions of assistance. I get totally locked up in myself and I can’t move or act constructively.

This is very different from depression. When I’m depressed I feel like I deserve to just die and that’s it. I feel hopeless, discouraged, in despair, and all the rest of the stories any of you who suffer from depression know all too well. But I can see how I’m being and ask for help and receive it. I can change my moods.

Mania is very different for me. I generally lose most of my self awareness. I was barely able to hold on long enough to take drugs yesterday and if I hadn’t done that I’d have been lost for sure. I can see how when I have true mania I totally lose myself in it and can’t begin to act even as well as I did yesterday. You can’t tell you’re messed up is the thing. You think you’re normal. But you’re not…

I’d love to have a handle on these extreme mood swings I have. I guess I do have many of them if I look back at my earlier posts and see that I’ve talked about how to change your moods and thoughts many times. But right now it’s all bullshit to me and none of it is real. I’m just a mess and I feel like I’ll always be one so why bother living.

Shit, I guess I’m starting to slip back into depression even as I write this. Wow. How can I go from being so high to so low in just a few minutes?!! This is called Rapid Cycling and it’s common for a small percentage of those of us who have Bipolar disorder. It’s when we flip from one state to the other several times in a year, or in my case, in a month, a week or a day even. It happens Fast.

I also suffer from having Mixed States where I’m both too high and too low at the same time. I guess that’s what’s going on now because I feel both in my system. It’s like my whole body is flooded with chemicals that make me feel weird and out of it. Slow and draggy but hyper and antsy all at once. It’s not the drugs, it’s the Manic-Depression at work in me. It’s bio-chemical after all so why shouldn’t’ I feel it that way?

So now I’m totally screwed. I feel too hyper to sit and rest and too depressed to do anything about it. A classic state of mind for a mixed state and one I’m all too familiar with. But the fact that I’m shifting does mean that sometime soon I’ll be back to myself and be able to change this mood of mine. I’ve learned that when I feel too powerless with it all I just have to wait it out, like a bad drug trip, and it’ll change in time.

I just hope that I make it thru that time and don’t do something really stupid in the interim. I can tell I’m still on the edge with it all. I’ve even thought of deleting this whole blog because I feel so isolated in it so often. Why do I bother I wonder? No one cares… sigh. Wait! This is depressive thinking I can tell and I have to stop it. Now!

It’s amazing to me how much writing out this stuff can help me. It may not be interesting to you but it’s Real and it’s a glimpse of what I go thru on a daily or weekly basis. I do this dance a lot and it’s a hard one for all of us who have this Disorder. If you have it I suspect you’ll recognize my journey here. If not maybe you’ll understand more about what it’s like to go thru it.

In any event I hope it’s useful to someone out there. It’s been good for me to talk about it and I’m grateful for this forum to speak the things that we live with and how we are in the world. I’m Bipolar and I accept that. It’s an OK way to be much of the time, even tho it’s hell other times. In fact sometimes it really rocks so remember that too. I’ll write about that part when I’m really OK sometime, maybe. We’ll see, eh?

No longer enraged but still Hypo-manic…

Steve

“Being” or “Having” Bipolar

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There is much wisdom in saying that we Have a Mental Illness when we speak of our Bipolar Disorder. People say it gives us more Control. But there’s one aspect that is often forgotten. This illness by it’s very nature is cyclical, and our minds don’t always stay where we put them.

What I mean is that it’s fine and dandy to say you Have a mental illness and you Control it when you’re stable and doing OK and you can actually mean it. But when you go either too high or too low then you are Not in Control of your illness, By Definition!, and it’s silly to pretend you are, just because you use certain words to describe it.

I feel too much cognitive dissonance to think that I simply have an illness in the bad times. I’m Bipolar personified then. My emotions change and take me over and all I can see is where I’m at at the time. I can’t see out of my dilemma, even tho I Know differently.

It’s important to acknowledge where you’re at in life. If you’re in the pit or flying too high then you are Not in control of your illness. Why else take all those pills and go to therapy and do all the mind tricks we do to take care of  ourselves to be OK? If we weren’t messed up by the illness we wouldn’t need to do all that would we?  Of course not. We’d be fine like the rest of humanity… (some sarcasm here…)

Personally I use the terms interchangeably. I find them both empowering. I found it empowering the first time I was diagnosed 18 years ago at age 45 and I have ever since. I’ve had Bipolar my whole life and I’m considered a model of recovery by my Psychiatrist and counselor both. I do well mostly, and have a lot of insight into my illness. But I still lack that control much of the time.

Now and then I have some control, but I am Not in Control when push comes to shove. Then the bipolar takes over and I’m lost. That’s when I feel like I Am bipolar, deep in my bones. And you know what? I don’t mind calling myself Bipolar when I feel like that. It seems to fit me better than just saying I Have it. It’s more visceral.

I don’t mean this to be a downer for anyone. In fact I mean it to be empowering. I believe that You control your life in the long run. But being in control of your own life means accepting all the parts of it, even the Bipolar disorder that takes away that control.

In the end what matters most is how you relate to your illness and your strength to endure it. And I do mean endure because it’s hard as hell. Making peace with all parts of ourselves is crucial to this struggle. Accepting the dark parts of ourselves is a part of the Dance of Life, especially for those of us with Bipolar, and it’ll always be this way.

So think whatever you want. Call it by any name you choose. Relate to it however it gets you thru the night. It’s all good, but don’t think you have it under Control. Don’t make that mistake when you say you “just Have” this illness. It’s all too easy to think you have it all under control if you say you just have it. Be careful not to let it mean more than it can.

Words have power and the words you use will define things for you it’s true. But saying you Are Bipolar doesn’t hurt you. It means you know yourself. You know who you are in your worst moods. You know yourself deeply and fully and you accept responsibility for that knowing by claiming your identity. It’s OK to do this. It’s even wise I think.

And it’s also fine to think that you Have this illness. I don’t mean to imply differently. But I’ve written all of this just to point out that it’s not any one way all the time. It Changes! It’s cyclical and when it changes and you lose control, you have to accept where you’re at with whatever grace you can.

If that means saying you Have bipolar that’s cool. If it means you say you Are bipolar that’s cool too. Yes words have power, but only the power we give to them. We don’t have to lose what power we do have by always being “psychiatrically correct” in the words we use to describe our illness. We have free will in the definitions we use to talk about our lives, even if not completely in what our lives may have become.

Wishing you stability in the coming year,

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

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