Last night my wife and I had a discussion similar to many we’ve had in the past. I told her of my last Sharepost, how I wrote of my fear that long term use of my psych medications will render me disabled at some point in my lifetime.
"Why are you so negative?"
"I wasn’t being negative, I was being realistic. And I did say I felt medication was the right decision for me."
"You need to give people hope!"
"What I write mirrors my mood. It will be down at times, up at times, rambling, manic, caustic, informative – it illustrates what I’m feeling and experiencing at the time I write it."
"I understand that, but people need to know this isn’t the end of the world! That it can be a gift!"
"There we go with the ‘gift’ stuff again. That’s almost as offensive as being told to ‘snap out of it’."
This was a friendly discussion, with both of us taking light-hearted swipes at the other, but the topics were serious. She’s right, there is a lot of negativity out there. People struggling with bipolar disorder need to know life can be good. Very good. But I’ve always taken the approach that I’m not a cheerleader, and I strive to give an accurate view of my thoughts, feelings, wins, losses, highs and lows. What I write is what I feel and believe, be it right, wrong, good, bad, bright or ugly. I can’t do it any other way.
But the more I think about it, the more I know she’s right. When I look deep inside, there is an underlying current of optimism. A confidence that ebbs and flows, but is always there. It’s harder to find when I’m depressed, but when I see the sun shining, and know a depression has lifted, that river of optimism runs a mile wide. And that’s where I am today – my depression of the last 2 months has lifted, at least for now, and things are looking good. I am once again able to look at the bright side, and I am hopeful about the future.
So it's time to revisit my last sharepost from a much different frame of mind.
In a comment on my last post, Just Me said:
"...essentially this decision is a way I've said I'd prefer to die younger from something theoretically preventable than to have my bipolar get worse in a way that could be medication controlled."
This statement is simple and straightforward, but profound in its implications. It's a "live for today" philosophy that many of us have, often out of necessity. This philosophy is echoed by QueenB who says:
"I think for anyone with a mental illness has to live for today. What works for us today. If not, then we will die an even earlier age by self-destructive behaviors or suicide. We really don't have much of a choice now do we?"
This is something we must keep in mind. Of our peers, it's said up to 25% will take their own lives at some point. This is horrifying, and completely beyond the comprehension of somebody outside the community. Whether it's depression or mania, we've all experienced those feelings. It's scary as hell when we climb out and look back. But when we're there, it's a matter-of-fact part of our lives.
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Long-Term Concerns Revisited
11/ 1/07 2:16am
I'm just wondering if all this is part of the mourning that we all have to do sometimes? I know that I am optomistic most of the time, but when things make me remember what my life would have been like (per my imagination) then I need to grieve, yet again. I think it's part of the rollercoaster effect of living with this (or any chronic) disease.
11/ 1/07 7:00am
What an interesting thought, to mourn who we were. But I'll take that a step further, when we are having good days let's also celebrate who we have become. Look back to those really bad times and remember why we began treatment to begin with.
Thanks as always, Just Me, for your thought provoking comments.
11/ 1/07 10:41am
We're not the only ones that must 'live for today'. There are many people whose family members have died young of cancer & heart disease... my husband's father died of a heart attack at age 35, and as Nick approaches 35 himself, you can bet it's in the back of his mind, especially since he's had genetic tests done, which match his father's and sure enough, is already needing medication for elevated cholesterol and triglycerides - his levels are better now, but we still have to keep a watchful eye.
Some people in Nick's family still ache from the loss of his father (especially Nick's grandma), and it was indeed difficult for Nick's mom, being left with 3 young kids... however, they have all prevailed over the years, and have truly mastered the 'live for today' way of thinking. It has taught me to also be that way, with my own illness, and it truly has been a gift, learning how to live more in the moment & appreciating what we have today.
With both heart disease and mental illness (and many other illnesses) I think it is important to recognize that there ARE better treatments and new ones coming out all the time. I feel lucky not to be diagnosed 50 yrs ago, surely to be hospitalized as opposed to being able to be treated while living a semi-normal life at home. So there's lots to be grateful for.
11/ 3/07 8:14am
Su1 - Thanks for that reminder. You are so right about living for today.
I don't think any medication will work forever, I really hope there is something else out there for me when Lamictal stops working for me. It seems like the pharma companies are concentrating on variations of current drugs currently, rather than new treatment options. But hopefully we have new options in the near future.
Thanks as always for your comment!
11/ 3/07 2:30am
Hi G. J. I'm glad to here you're feeling better. I think if my husband wasn't medicated he'd be self medicating with no telling what, he did in the past. At certain times he would drink bad, of course I didn't understand it at the time, but I do now. So what's worse taking the medication, or staying drink to kill the pain? I don't like what the meds do to him, but at least we found out what was wrong with him, and I didn't have to go to jail for killing him(kidding). I think about all the people that are in jail or dead because they were never diagonised and medicated. I also think about kids in school that are budding bipolars that are more than likely considered bad or not right. I think teachers should be taught more on bipolar, and I know their not at my daughters school. Even the guidance counselors in our high school are not educated enough on mental illness, at least they weren't when my oldest daughter was in school. They just considered them bad kids. The so called bad kids usually manage to find each other too. By the way,you don't have to be a cheerleader, just be honest, more people can identify with you. If you're depressed tell us, that's what I log on for mainly is to see how you are. I appreciate your honesty and your willing to share it. Hey, I look over my shoulder all the time to see if sombody is coming after me with a big net to haul me off. Remember I am crazy from the outside in. I hope you stay up for a while, enjoy it and don"t think about it so much. Emma
11/ 3/07 8:26am
Emma - I love your comments. I could tell many personal stories just from what you brought up in this comment.
If we ever win the lottery, my wife and I decided years ago that we'd devote our lives to helping people with bipolar disorder or other mental disorders find the help they need. We'd help those on the street and in jail, and their families. There is SO much confusion and SO much red tape for those who really need help.
Thanks as always for your kind words and for taking the time to read and leave a comment.
11/ 5/07 11:14am
I posted this on the last post before I read this one. I realize most people are probably not looking at the last post anymore. Sorry for the "spamming" of sorts.
Glad you feel better too!
Here is what I commented:
As you know I've decided that not only do the drugs give me awful life-threatening, life diminishing side effects, they have never controlled my life. I will not call my life "symptoms" because I no longer believe we can't address them psychologically. This is a radical idea. Someone in this comment thread said we don't talk enough about the drugs being damaging...well it depends what circles you run in. In my corner of the blogosphere that is all we talk about and many of us are off or in the process of getting off our drugs. We all make different decisions but we all agree psychiatry is deeply flawed even if some of us choose to remain involved.
I do want to live a life past 50 or 60---you know people on these drugs live 25 years less on average. Google it...I swear it's the truth.
And I want my cognitive functioning back and I haven't given up yet. And I've been on a shitload more meds than you so you can imagine the cognitive damage I've suffered from. I've talked to enough people who have withdrawn from similar cocktails as mine to know that their cognition has greatly improved, though they have not completely cleared up. Lamictal is only one of the posions I've been on. The neuroleptics and benzos, I believe are much harder on cognition.
Anyway I know how you feel. And I've taken action. (I'm not implying you need to) I've just had enough of my body slowly falling apart.
If anyone is interested in my drug withdrawal journey visit my blog. I warn you I'm not feeling so hot right now---but that is really hormonal. I have a serious hormonal problem that acts like a mood disorder (I know this as it only happens when I'm premenstrual) I'm sure many of you will simply think I'm kidding myself but I have all sorts of alternatives that I'm working with and in time I do believe I can heal. It's a process and not an easy one. I have a lot of role models at this point. We just don't generally get heard.
http://bipolarblast.wordpress.com/
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My sister is a nurse. She was working in a clinic once and was the intake nurse. The intake nurse took the patient's vital signs, wrote the patient's history, and wrote down the meds the patient may be on at the time.
One day a woman came in with her husband. She had over 20 different bottles of pills and liquids. Most of the meds were psychiatric. Some of them were for blood pressure, a few for diabetes, but most for psychiatric.
The patient didn't work and barely could get off the couch each day. Her husband cooked, cleaned, and reminded her to take her multitudes of medication. She was unable to care for herself because she was so "doped" up (patient's words).
She had meds to help her sleep, meds to wake her up, meds for anxiety, meds for mood, meds for psychosis, meds for neurosis, meds to counter act the adverse effects of other meds. Her life revolved around taking her meds and watching TV for she was parked in front of it normally.
My sister told me about this patient because she was absolutely aghast at the fact that the woman had to take a med for just about anything she did and didn't do and because of such she was disabled and totally dependent on her husband. The meds caused liver damage, kidney damage, diabetes, and a heart arrythmia. She had been on them for several years. She literally couldn't live without taking the pills.
Her husband's story was that his wife, at one time, was a promising up and coming attorney with a brilliant mind but over a short period of time became more and more psychotic and neurotic. He told my sister that now she just gets up, he takes her to the couch and turns on the TV, he fixes her meals, gives her the meds, and at night he puts her to bed.
Made me stop and think about meds.
A lot of folks with Bipolar due end up disabled and on disability because they are unable to work and/or function. They are on many meds which cause life living issues and over a period of time physical illnesses and issues. This isn't to say that the meds aren't needed. I've taken whokus of them over the years - I just wonder though truly what a lot of us are exchanging our lives for - a peach colored pill or momma's little helpers just to live in this world.
I think maybe there's another question to ask there: if it is the meds causing you to give up your life, then what can be done to fix the meds? Being medicated to the point that quality of life is diminished possibly more than untreated BP would do makes no sense.
To me, it didn't sound like this was a question of whether any tx was too much to handle, or whether what she was on was excessive.
I have many thoughts about this, but will express just a couple.
First, this illustrates why it's so crucial to have a doctor we can trust, and one that will listen to us and work with the objectives we have, and limits we place on our treatment.
I was at a support group meeting the other night, and one man was going through a benzodiazapene (sp?) withdrawal program. It looked and sounded like the guy was going through hell. It was a process that would take several years to accomplish. He knew what he was experiencing would be a part of his daily life for the next few years. He was handling it much better than most of us would handle it. I bring this up as we all have an obligation to ask our docs hard questions about our prescriptions, and take an active role in our treatments.
Thanks tabby for sharing that story. As heartbreaking as it is, I think we can all learn a lesson from that.