How Long will I be Ill.

[paul m]

Hello All. This thread is just what the title sez. It's a general topic. I am going to start out by talking about bipolar, because I have bipolar, but anyone can feel free to jump in with any information about illness duration and mental illness.

In several threads Jennisk has brought forward that bipolar is a degenerative illness and that without treatment it can really get worse. She has pointed out that the more damage done to our brains by each episode the harder it is to correct. I couldn't agree more.

There are really only two hard and fast rules for bipolar. 1) The sooner a person gets quality treatment the better the chances for complete recovery and 2) If something is fueling the bipolar episodes than no amount of medication will make you better.

FUEL? What the heck? By fuel I mean outside things that we may control. A toxic marriage, an uncontrolled substance abuse problem, an uncontrolled addiction(gambling etc), a lousy job, rotten living conditions, unrealistic expectations, even friends and relatives can be toxic to our illness if they hinder rather than help.

Example. I have a friend who had several hospitalizations, took a ton of meds and never seemed to get better. Unknown to me, every time he got out of the hospital his spouse would berate him for mths on end and never let him forget that he had blown all of their money. Skip ahead a few years and this guy is now single, rarely has episodes and since he has been stable only takes low amounts of meds when needed.

No I am not advocating leaving one's spouse. Mine helps to keep me alive and is a positive influence.

Some of us will have episodes no matter how hard we try and even when we do everything right of that there is no doubt, but when we add fuel it just makes things worse.

Sometimes our expectations and perceptions can provide fuel for the bipolar fire. I don't how much time I lost trying to get back a life that wasn't coming back. I was like a proof reader who had suddenly went blind and then still expected that I would be able to do my old job and resume my old life. It just wasn't ever going to happen and I was pretty slow on the uptake.

How long will I be ill? The rest of my life. How bad will my episodes be? I don't know. I do know that because I went for so long without treatment and fought so hard against it and did so many foolish things that I am having a much rougher time now. Do I blame myself for all of that? Not in the least. I am human an prone to errors just like the next person. Plus, to be honest, even today, a lot of docs are not really up on the topic of how to get better.

As Jennisk has said in another thread, it is up to ourselves to become experts on the illness. That's not fair, but if life was fair, I wouldn't know all of you nice people, I'd be well. Take Care. paul m

[A.E.V.]

thanks for the pearls of wisdom Paul...

"Sometimes our expectations and perceptions can provide fuel for the bipolar fire. I don't how much time I lost trying to get back a life that wasn't coming back. I was like a proof reader who had suddenly went blind and then still expected that I would be able to do my old job and resume my old life."
I think that's my biggest problem right now. accepting that I am ill, and that I might not be able to do everything I used to do.
I guess what didn't help is that one day early on in my treatment, I had gone through ER to see my pdoc who was on call, and he had said to me "you have type 2 bipolar... some people have type 1 bipolar and are worst off than you are!"
so I figured that meant that I should be able to work and do what I used to. but yet, I can't work now, and I wonder if I will again. that's hard on a 40 year old! it makes me feel completely useless.

[paul m]

Hello Anne. Some docs should be forced to re take their medical exams. While type bipolar1 is often seen as being worse than bipolar2 this is NOT always true. All the 1 and 2 stand for is that in type 1 you will have full blown mania at some point in your life.

As an example compare these two people: Person A, with bipolar 2 who has constant deep depressive episodes, where all they want to do is lie around and want to die for weeks on end, inter spaced with hypomanic episodes where they go on spending sprees and blow the rent money.

Person B, with bipolar1 who has only occasional episodes of either deep depression or full blown mania where paranoia is predominate(in this example only). Perhaps the episodes are months or years apart.

Both suffer greatly, but it cannot be said who has the rougher time. Personally if my episodes were reasonably short and few and far in between, then I would pick being bipolar1 as the easier. Nothing crushes the human spirit quite as much as being perpetually depressed and never having any money because we spent it all when hypomanic.

There are a few more criteria that go with bipolar1 and bipolar2, but my examples are fine for illustration purposes.

Using you and I for example. (as of right now, not as in my past) I have bipolar 1. Even with my meds I still meet the criteria for bipolar 1. You have bipolar 2. I can guarantee that right now you are have a much more difficult time in your life than I am in mine. You are suffering more day to day and not enjoying life.

This is not a personal flaw on your part. I just have many more years experience at handling my illness. My meds work better, because I have had a longer time to find out what works. I have a good in person support group around me and in that regard I am extremely lucky. I have a spouse that helps to reduce my worries and in that I am lucky too.

Would I trade places with you so that I could have bipolar2 instead of bipolar1, ""H*LL NO"". you are suffering much more than I am.

Doc's and us tend to get to hung up on titles and generalities. When a person is seriously considering suicide because of the mental pain they are in, it doesn't matter if the illness is called depression, bipolar1, bipolar2 or *&#%*!**. What matters is that you are really ill. Take Care. paul m.

P.S. For Others: I know how difficult bipolar1 can be, both my son and I have it. It is different in some ways than biplor2 and some of the treatments may need to be different, but that is all it is. Both can ruin your life and drive you to suicide and that is pretty bad, no further distinction need to be made when an illness is that rough.

[jennisk]

Paul, I can't begin to tell you how much I respect and admire you. You have a marvelous way of telling the truth gently. Sometimes, the truth just can't be anything than what it is. Sometimes, the truth is ugly. This is my ugly truth...

When I received the diagnosis "Bipolar type II", I struggled with acceptance. I wrestled with it. I even fought it. When I had my first low after being relatively stable for awhile, I felt like a complete failure. I had been taking my meds, what had gone wrong? I was angry. I was angry when I realized I had to give up some of the things that I liked as a trade off for wellness. I told my family, "I know why people are non-compliant! Because being well is too hard!" My Pdoc explained it like this, "If you were my patient and I discovered you were diabetic, I would prescribe insulin, give you directions on how to use it, teach you how to monitor your blood sugar, and teach you about the effect of diet and exercise on your health. If you were to go home, and just take this insulin, without implementing the other life changes, you would very soon be back in my office. You would not be well. "
I considered this. I thought about my husband and my son. They so desperately wanted me to be well. I thought about my family and friends who had been so supportive. I thought about what I wanted. I decided that I wanted to be well, not just live. I wanted to live well! So, I did my research, and found the ways that I could best manage my illness. I don't drink (makes me feel awful and is hard on my liver.) I don't stay up late a night (I used to be a total night owl.) I resigned my positions on volunteer boards and committees (My husband used to say, the worse I felt, the more I would take on. This was a vicious cycle.) I gave up my desire to have another child (because my meds are known for causing birth defects and no one wants me to go off my meds. Too dangerous.) I have to say, that I still occasionally mourn that last one. I also gave some key people in my life the power to be "policemen". They say, "Hey, do you think that is a good idea?" Or, "I think that is your bipolar talking." Key words to tip me off, and tell me I might be headed down the wrong road or into dangerous territory.

How long will I be ill? I will always have bipolar disorder type II. Even with my best efforts, sometimes I still have mood swings. Sometimes life gets away from me. Sometimes I just get tired of "doing the right thing". But then, my precious son will ask me if I am "having a bipolar moment." He will hug me and tell it is okay. He'll tell me he's proud of me. (eyes tearing as I type) My mom will phone and hear pain in my voice, and she will tell me all of the good things that I've done, or have, in my life.
I used to think of myself as a "Bipolar Fairy Tale". Really. My psychiatrist gets me and I really like him. I got better on the first mood stabilizer that we tried. I have only had to have my sleeping pill changed once. Only had to have my anti-depressant dose increased once. My husband stuck with me through years of hell when I was furiously anger or deeply depressed, nothing else. I have a beautiful, healthy son. I have a home. I have a job. My illness has not lead to any legal issues or financial ruin (almost, but not quite.) I am able to work part time with a duty-to-accommodate (means my employer has allowed for alterations in my schedule due to my illness.) My family supports me. Every book I have read on the subject of bipolar, my mother has read too, and seem some that I haven't read that were just for family members. But then, those wonderful people in my life remind me that I have also worked really hard to be well. I am honest with the psychiatrist, and when I am having problems, I ask for and accept help.

[paul m]

HelloJennisk. Thank you for your kind words. In all honesty I do sometimes say things on forums that I later regret. Fortunately everybody here is a pretty nice person and only once an a while do I get handed my head on a platter(usually deservedly so).

Thank you for telling your story. It helps many of us to realize that there is hope. While many illnesses are a real struggle, nothing seems to make us doubt ourselves like a mental illness.

You made a lot of really great points, but three points really hit home. 1)that you will always have mood swings and to watch out for them2) That you sometimes just get tired of doing the right thing and 3) That being well is really hard work.

Oh yes, perhaps the most important point that you made, is that all that struggle and work was worth it.

It was people like yourself, telling their success stories, who gave me the encouragement to survive many years ago. Thx and Take Care. paul m p.s. I agree about late nights, but tonight I have to be up all night.

[jennisk]

I hoped you enjoyed your "up all night!" I have been known to get up on a soap box and run my mouth. I have offended others. All you can do is apologise.
Best get going, I'm off to see the wizard (a.k.a. my psychiatrist) and I need to figure out what we need to talk about.
Jenn

[Lizzy]

Paul, you're great!

[paul m]

Hello Lizzy. Thx. I think that you and the other here are pretty special too. Take Care. paul m

Hello Jennisk. I do a volunteer job that sometimes requires me to be there overnight. I have to stay awake, but sometimes there are lulls and it is better to be busy than just looking out the window at 3am. So all of you fine people here help the night past quicker for me. Yes I do enjoy the chance to stay up all night and sleep all day once in a while. Take Care. paul m

[Lizzy]

You put a lot into the research part of answering posts Paul and I think we all appreciate that.

[paul m]

Hello Lizzy. Thx again.I do appreciate your realizing that I do have to look up some of this information. I can remember one person that I had replied to on another forum who was actually disappointed to learn that I didn't know all of this off by heart and that I had to look it up(some days I can't remember my own name). I do have a very large list of favorites that I do go to that does cut down on my research time though. Take Care. paul m

[astronaut]

I just wanted to say that I found this thread rather moving. I just... I guess I can relate and I just hate being so stuck like this.

I remember I was part of a CBT group and I had to fill out those sheets where you write down your thoughts that you are having while you are going through a bad moment. All the members of the group had to share some of their thought records with each other to make sure that we were doing them right and to help point out to each other what our thought patterns were, etc.
I was sharing mine and I had to circle my hot thought. My "hot thought" was: "I'm not bipolar. This isn't happening to me." Every time I take out my old thought records and I look over that one it makes me teary. I just feel bad for that young girl who just couldn't comprehend what was going on inside of her head.

Jennisk, I really appreciate your story that you wrote for us. I too have had to adjust my life to help me manage my illness. I also have a very intelligent psychiatrist who I trust and respect. Even though I dislike taking the meds, she always listens to my concerns and talks reasonably with me about my worries.
I also understand how hard it must be to have had to make the decision to not have another baby. I am only 24 and I am worried that I will never have the chance to get married or have kids because I'm just too messed up. I know they say that you can move on with your life and have a positive future even with bipolar; however, you know how it can be feeling so hopeless. You're right--it can be hard to keep doing the right thing. It is even hard to know what the "right thing" is sometimes.

I am also afraid of what Jennisk and Paul were saying about bipolar being a degenerative disease where many episodes can damage the brain. I just had a two year episode that I am coming out of and I did not respond well to treatment. Since the episode, I have had a lot of trouble with my working memory and thinking "deeply" or making connections. I am just not as intellectual as before and my interest level and motivation are still poor. I wonder if I have caused some permanent damage from being depressed for so long. Before this past episode (which was arguably a "mixed episode"), I have had three other major episodes of clinical depression. I read a study posted in a hospital where I was receiving treatment that indicated that treatment with lithium can repair brain problems. I've never tried lithium but maybe some of the other medications that I'm on have the same effect. It was just one study so it isn't necessarily accurate but you never know.

Anyways, sorry about the long post. I hope to read more of your stories though.
be well,
astronaut

p.s. Anne, I know what you feel like knowing that you can't work at the moment and worrying that you never will again. I felt like that for well over a year and was unable to do much and I judged myself and felt as though I was being judged by others. Maybe some people did judge me but for the most part, people didn't know what was going on and those that did were surprisingly accepting of what I was going through.
I did get out of the rut that I was in and I can do many things that I couldn't do when I was depressed. I can read these posts for example! (I couldn't read when I was depressed). I am back in school. I still have to take meds and see my pdoc and psychotherapist regularily but that just helps to keep me on track; it doesn't hold me back in any way. I really hope that you find the right treatment to make you stable! Keep us posted.

[jennisk]

Astronaut, I have to share the MOST important thing my psychiatrist told me. In our very first appointment, after hearing me and giving the diagnosis, he made a point of getting eye contact. He said, Don't give up hope. You will get better." I needed to hear that. Hope. I can really relate to what you said about your memory. I joke that I have "swiss cheese for brains". You know, full of holes. Some things stay in and some things fall right through the holes. I write stuff down, program it into my phone, give reminders about my reminders. I still forget things. SO FRUSTRATING!!!! But, my thought processing HAS improved since I have stablized. The good news is, the doc was right, I did get better. I have read that research on lithium too. My wonderful doc also was willing to try to work with us to have another baby, but I am already 37. My husband is 43. Our son is 10. Add to all the other things and it just isn't smart. So at 24, I think you have the world before you. Once you are stabilized and have decreased your cyclic episodes, your risk of brain damage radically decreases.
Thanks for reading,
cheers to hope,
Jennisk

[paul m]

Hello Jennisk and Astronaut. I have been known to say once or twice that "You can get better". In fact it is a favourite of mine, because it is true. Better doesn't always mean that we will resume our old life, but life can be enjoyable again for most of us.

While bipolar can be a degenerative illness if we let it, our brains also have amazing powers of recovery. Unfortunately they heal very slowly and from what I have seen, most people (including me) simply do not give it enough time to do so. Sort of like trying to run on a broken leg before it is fully healed.

I am certainly no where near what I was mentally when I was in my prime. Having said that, I am doing things now, that simply were not possible for me to do 5 years ago. While I am sure that 5 yrs is an enormously long time for someone who is 24, for an old guy like me who has been ill for a longer than Astronaut is old, 5 yrs is very short.

A better example may be my son(bp1) who was hospitalized many times by the time he was 23, was in trouble with the police because he was so paranoid at times that he constantly called the police on people he was certain were out to get him. Now 5 years later he has a steady job and lives with his G/F. He still has problems, but he hasn't been hospitalized or lost a job in that time.

Our illness is scary and the uncertainty of our futures would drive a person crazy(pardon the pun). But keep fighting, you can get better. Take Care. paul m

[astronaut]

Thanks for the encouragement Jennisk and Paul m.
I think my psychiatrist said the same thing to me when I first saw her (as well as a whole slew of other professionals). I guess I've been so successful in the past, that I have trouble accepting myself if I'm not living up to my old standards. I need to learn how to give myself a break I guess.
But I think you're right, if I am just patient things will slowly get better. And they really have since last year at this time when I was lying in my bed, popping ritalin so that I could move and not being able to do much of anything. I just need to learn to count the things that I have accomplished rather than focus on the things that I still haven't been able to do.

Jennisk, That must have been awful to have to make eye contact with your pdoc when he told you that. When I'm in a bad place it is agony to look at people and I practically die if I have to look them in the eye. Does anyone else get that way?

Gotta go but have a nice day. It is sunny where I am (what a relief).
astronaut

[jennisk]

Astronaut, yep, eye contact is a tough one. It felt like he could see into my soul. But it was also ok too, because I realized that I could trust him. I am a recovering perfectionist and set ridiculously high standards for myself. My Pdoc keeps telling me to "put away my cape." Ha. What? You mean I am not superwoman? The hardest part for me was that I LIKED being superwoman. But I really wasn't. It was a ground breaking realization. I was shocked at how long it took to fully accept my diagnosis, my "new world order." I wanted everything better faster. I am still learning!