How not to be a patient anymore...

[Lindamomof7]

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[SweetSue]

How longs a bit of string ?

that was the answer I recieved from p/doc when I asked How much longer am I gonna be like this and need there help.

ever helpful

Thats a scarey thought, I truely cant handle being like this much longer, 10 years, no chance.

[malign]

Well, I personally like the "string" answer.

It says, essentially, "That's up to you."

I don't think you're a patient, now, Linda. You're Linda.

You have to decide for yourself when you're done with treatments.

The tricky thing with bipolar is that no one likes the downswing, but it's hard not to enjoy the upswing, at least from the inside, while it's happening. But I bet you know when it's happening. And if you don't like some of the results, like maybe wild spending or running roughshod over your loved ones, then you would take your own feelings with a grain of salt, knowing that they're affected by the mania.

I would suggest, if you're considering ending therapy, to give yourself at least two full periods of your normal cycle, to see how well you handle them, before making the decision. That's how you would know that it's not just one part of the cycle that's talking. And, of course, talk it over with your loved ones and your therapist. Their feedback would also be valuable, since they're not cycling with you.

[Lindamomof7]

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[malign]

How long would you want to keep on getting up and doing life, if you weren't "ill"? I'd say, do it the same number of times. :-)

You persist in describing yourself as "ill". It seems to me that you've just replaced "disorder" with "illness", and either way, you think that's you. "You" is Linda; you'll keep being Linda the rest of your life.

A "productive manic" sounds good, but is everything you produce in that state a good thing? Is it all as well thought-out as you would like, looking back on it? Those are important questions.

Um, at what point in railroad operations is it ever considered a good idea to derail the train? There are stations; you can get off if you want. Why does it have to be a destructive process?

I can hear that you're frustrated, especially at having to rely on others. The question is, if you ask yourself honestly, are you ready to rely solely on yourself yet?

[Lindamomof7]

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[malign]

I'm sorry, Linda; I can tell you feel like you've lost something.

If it's too flat for you, is there any way to get them to adjust the meds?

Or, maybe it's a matter of getting used to them, so that you can learn how to multitask again. Probably not at the level you used to, but I assume there's a reason that you're being treated at all. Has nothing changed for the better?

Okay, so the train is accelerating? You mean, the frequency of the cycles? Because the only way to stop them from becoming more frequent is to take your medicine and be flattened ... Perhaps neither choice seems that great, but the choice ought to be yours. And if derailment is inevitable, then I'd suggest there's already something wrong.

[David O]

Good morning Linda,

I sop wish I had some great wisdom to offer-- I did want to tell you though, that this thread is heartbreaking to read and my heart goes out to you. As I was reading through it my mind wandered towards Antoine de Saint-Exupéry's The Little Prince, an exceptionally beautiful and eye-opening children's story about a little blond boy who travels extensively and eventually lands on Earth only to discover the frailty of adult logic and reasoning, and massive but undeveloped and immature egos of human adults.

You can read the entire short tale here:

http://www.angelfire.com/hi/littleprince/frames.html

or read a good summary and analysis here:

http://www.sparknotes.com/lit/littleprince/summary.html

Rather than say why I thought of this, your readings may bring about a richer interpretation not constrained by mine.

With much compassion,

David

[Lindamomof7]

Thanks David...

[Lindamomof7]

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[Luna-]

Oh Linda - have a big hug! {{{Linda}}}

Don't start with the spark notes, just read the story. Summary and analysis is for further down the line, if you want to do that. (Sorry David, no offence meant!) It's a beautiful and restful story , I re-read it from time to time.

I have stuff to say on this topic, but must fetch my daughter now so will do it later.

[David O]

Linda, Luna is right.... go directly to the story... it's a beautiful tale, easy to read. Enjoy!

[Luna-]

Sorry this is long. I’m grateful for your thread because writing all this down has made me see my thinking much clearer and been very good for me. It’s been a lot of work (like hours!), but then isn’t that just how these things are?

How not to be a patient anymore. It is something I’ve pondered so often, whenever another cycle of illness comes around, which alas, is frequently these days. I’m greatly inspired by my 16 year old daughter who became Type 1 diabetic at age 8. Several finger pricks every day to test blood sugar and 4 insulin injections a day, just to stay alive, never mind anything else. She’s now taken over almost all the management that I used to do when she was a child.

Our Western model of illness/wellness is in some ways flawed, especially when it comes to chronic illness. I’m a huge fan of the model and the wonderful alleviation of suffering all the research has brought, and I went into it as a profession (without insulin and BP meds where would we be?) but there are times when it is hindering and one needs to look elsewhere. It’s based on ‘investigate, diagnose, treat, with the aim of cure’. When you can’t be cured, the pressure on you to "be fixable" according to this model, is constant and becomes a huge burden (as if we need more), because there’s a very subtle implication of ‘failure’ - because you can’t be ‘fixed’. Many medical professionals don’t cope well with that and unconsciously pass over their frustration at failure to the patient, who then feels bad about having failed the medical system by remaining ‘sick’. This all happens below most people’s awareness. (I think it’s part of the reason why some psych professionals become sarcastic, uncaring and harsh with us mental patients. In an ideal world, they would work in acute settings and the ones who have confronted and accepted ‘un-fix-ability’ and are comfortable with management instead of control, would work in chronic illness.)

But I digress. In this model, when one has illness, one deviates from the normal and the illness is, by definition, ‘pathology’ and one is designated the status of PATIENT, someone who has pathology. We then internalise the desire for diagnosis and hopefully curing treatment to move us out of the ‘patient’ status. When diagnosis is complicated or illness persists, we push on with more investigations, with the implication that when we find the ‘illness’ we can move to the ‘cure’. I’m not knocking this at all, after all, I’m also schooled in having this aim and seeing it as desirable, and when my own treatment fails you can bet I’m on the hunt for another which will work! I’m just pointing out the effect of the underlying model, which is that we must persist in striving not to be a patient any more. And therein lies the conflict we live with and are continuously frustrated by, when the illness won’t go away.

For me, the only real way to cope with this has been to try and take my attention off that whole way of thinking. It doesn’t mean I don’t keep trying, because I surely do, but I try to move that role over to the doctor and just take the meds I’m prescribed and pitch up for appointments etc. Meanwhile I try to focus on living my life regardless and give up that goal as my focus. I manage the illness as I must and as best as I can, but I am sick and tired of constantly being a patient and dammit, I want my life back!

This is where psychotherapy has been so key for me as it’s focused on patient (in the other sense) acceptance of where I am and how to manage living. Most therapists aren’t frustrated by the absence of the quick fix; they’re OK with illness just being there and focussing on living despite it.

The other major way that I’ve found to cope and confront this has been to seek meaning in suffering. Fortunately suffering in general is a part of the human condition and so there is no shortage of thinking and writing about this, the world is filled with the striving for meaning.

Here I’ve been very fortunate by my earliest therapists being schooled in a Jungian tradition and having been influenced by Victor Frankl, Scott Peck and the Buddhist philosophy. They encouraged me to seek meaning in my experience.

Scott Peck’s opening sentence in The Road Less Travelled is: Life is difficult. Buddhism’s first noble truth is “Life is suffering”. Hooray! My continued suffering doesn’t mean I’ve failed! It’s not a pathologised deviation from ‘normal’! In this respect I’m no different from any other person and I don’t have to try not to be a patient anymore, because that whole concept just isn’t there. Seeing meaning in what I’m going through has been and is, incredibly healing regardless of what my own meaning is.

In the Jungian philosophy, a life crisis is seen as meaningful, an opportunity to grow and develop, not as pathology, but something that is necessary for the soul. Many life crises cause a need for a permanent change in our thinking and living. A crisis is the soul’s attempt to heal itself.

I’m not trying to glorify mental illness. Hell, if I was offered a BP cure, I’d abandon looking for meaning in being ill and accept the sure in a heartbeat.

These coping strategies of mine aren’t a once-and-for-all end to suffering and don’t solve any problems. They don’t change anything that happens. The only thing they change (and that is when I remember them, which I don’t always) is my viewpoint, my perspective on my ‘Failure to Get Well’. ‘Failure to get well’ is just a construct and looking at it differently makes it much less of a problem.

Perhaps this ‘meaning’ thing has been so important for me because I’ve always had a deep hunger for meaning – why am I here and those kinds of questions.

So I guess the summary of all the above is that how not to be a patient anymore is to look at it from a different angle making it immaterial to your life whether or not you’re a patient. It’s hard, because we want to continue looking for treatment and each contact with the medical model puts us back in the patient role and we have to actively extract ourselves again each time.

Of course my answer may not be your answer. In these areas of life there are no absolute realities or meanings and things are fuzzy.

Dear Linda, I feel for you, because I know this thing hit you all of a sudden after things have been fine for so long, and you also have a bad case of it. That’s just plain HARD.

Hugs!

[Lindamomof7]

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[Lindamomof7]

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