No one gets "well"

By K B Wednesday, September 10, 2008

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I was diagnosed with bpd 9 years ago - but I think I have had it most of my life.

When I read about treatment there is often some reference to getting well. This is not curable - its not even treatable. We don't "get well". Medication and therapy can, in most cases, help. But I wish MH professionals would stop writing tips on how to get well, or stay well. The truth is that it is a struggle every day to cope for me. And I am not one of the really sick ones - no suicide attempts, no hospitalizations. But even with 4 meds I have racing thoughts, labile moods, distractibility, very poor short term and some long term memory. Once a medical professional myself, I finally gave up working at 47. Those who think that I am just whining should spend some more time looking at these posts. What is typical is that by the time we get this all figured out and get on meds that make life bearable, our brains have had it. We are permanenlty disabled. That would be easier for me to cope with if my doctors and the mental heath community would acknowledge that this is the case. Time after time I have read about a high fiunctioning person who slowly gave up employment status, then employment altogether, and may have stopped having as many mood swings as medications were fine tuned, but the cognitive skills got worse.

I have always hid my illness. At some point I will have no choice but to tell people, because my social skills have suffered so mch due to my cognitive decline. Changing meds makes no difference at all.

I am not angry about being ill. I am angry that the mental health community says we can "get well" when we can't - we can only hope for an increased number of good days on the right meds. And they know that. By not telling us, or, as I have been told over and over again - "there is nothing wrong with your memory - you sound sharp - you are just too hard on yourself" - we just get confused and question our self confidence. I am so tired of people telling me that what I am experiening is not real. How do they know? I think they do it because they want us to find hope, or because they fell uncomfortable thinking of this as an incurable condition.

I even had a doctor tell me that all of his patients stayed employed and married - wow - his bipolar patients are doing much better than the average American! He told me he had doctors, lawyers, business people, etc. taking eds and doing great at work. I don't

believe it. Certainly not with Bipolar 1.

I am not saying that we should scare newly diagnosed patients by telling them that they have a poor outlook for quality of life. I am saying that if all the meds have been tried and the patient is experiencing cognitive decline no matter which drug is used, that health professionals should not keep telling the patient that this will improve or that it is not happening. For years I complained about this to my doc and finally read some good research on my own that shows clearly that brain damageis part of the disorder - and it is permanent.

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as good as it gets

9/10/08 1:15am

I was diagnosed about 15 years ago and I am now 55 years old. I have had several overdoses and suicide attempts, the last one 1 and 1/2 weeks ago. LUckily my daughter came by and found me passed out on the bed. One more hopitalization. You want to know whats funny. My medical doctor let me out of the hospital after one night and prescribed me some anitdepressants. What a stupid sap I am. I have been non compliant at times in my treatment. I know what you say about your brain getting fried. My memory is not good and I can't sleep well. I am still working but I really feel it's only a matter of time till that is gone. My insurance does NOT consider bipolar a disability, so the disability insurance I have been paying in to for years is no good. My son took an emergency medical from the navy to come home and look after me. In a week he goes back and I will be alone again. I really wish I had more hope but as you said sometime it looks quite bleak. I only hope for less pain in life and a little hope. I also have heard all the stories about people doing really swell with their meds. But lets face it a person with bipolar has to maintain a very regimented life in order to function very well. Too much stress or pressure and all the walls can come crashing down. I hope you do not give up. I don't plan on giving up, but I have no idea what my brain will do.

tabby

9/10/08 7:01am

I agree with you pretty much. I also think that the meds help increase the cognitive issues by "frying" the brain as someone put it.

When I was diagnosed in 2006, accurately I might add, I was hospitalized with my 5th hospitalization. I had gone through my 2nd manic episode in my 40 year life, the first one being more than 10 years prior. I was diagnosed right, this time, because it "clicked". A lot of folks with Bipolar will tell you that once the diagnosis was made & explained why it was made something inside just "clicked" to let them know - it was accurate.

Since that time, and some major hitting meds later, my cognitive abilities have been greatly reduced. I have trouble remembering things, trouble focusing and concentrating, unable to do more than 2 things at once before I'm scatterbrained, etc.. Now, is it the progression of the chemical inbalance disorder or is it because I finally got prescribed some heavy handed meds rather than the ole anti-depressants all the other docs had been prescribing that didn't work with me as they should? I sincerely believe it's both.

I do remember though, while in that hospital and after being diagnosed, that the social workers in group therapy explained that the disorder is indeed life long. It can be quite disabling at times, it won't go away, and the only thing one could hope for is a better quality of life if one could find the magic cocktail of meds. However, that wouldn't come easy for most people, they said, and until it is found and appropriate therapy was ongoing - the better quality of life wouldn't begin.

While I was tremendously relieved that someone had finally hit the nail on the head with the diagnosis, I was also tremendously overwhelmed and despondent to a degree because it is truly a chronic life long often times disabling illness with a horriable stigma attached.

I have Bipolar I disorder and suffer primarily with depressive and mixed episodes. I work full time in a MH related field as an Admin. I'm not entirely certain how long I will be able to continue working period. Yet, until I become disabled to a worsening degree, I'll still keep trudging out there punching a clock because in truth, I have to.

nolongerhere

9/10/08 7:08am

Hi Tabby,

I like your reply "as good as it gets" but this is one way to look at things. I would like to ask you to read my new sharepost titled Australian Aboriginals and Bipolar Disorder or something similar. I agree medications fry the brain that is why I take none.

Alfredo

Maurie

9/10/08 7:01am

As we get older, I'm 65 and bipolar, its amazing that many of us become quite knowledgeable about our illness. Medication lessens my symptoms, but it does not make me normal. Bipolar parties with our life and we get to pay the bill. Yes there are some good times but there is not enough of them. There is no cure, does anyone wish that they could just go to bed and not wake in the morning, I do!

nolongerhere

9/10/08 7:04am

Dear K.B.,

I suffer from severe bipolar and certainly it is a life long condition. I take no medication for medication really never helped in any satisfactory or permanent way. In some cases, in the long run, made things worse. But we must ask ourselves what is bipolar disorder? In some cultures it was seen as a condition and certainly troublesome as well but it was seen as a gift also not a curse as it is in our society for these special people understood that bipolar also has many positive sides to it.

Read my sharepost on Aboriginal people and bipolar disorder. I am an artist and for me bipolar disorder is needed to generate the magnificent art works that I produce in music, visual art, poetry and creative writings. I need the moods to inpire my mind. Depression and elevated moods are part of me. I try to control these forces and use them to my advantage I never see them as a curse though they do cause problems for me at times. But I never dwell on problems. I forgive myself, I understand that I have a condition and I move on. I accept myself as I am and I see my bipolar also as a gift. Maybe you could think of some positives that come from your bipolar disorder. I have seen a few just by reading your post.

Alfredo

nolongerhere

9/10/08 7:12am

I think that we can perceive bipolar in a negative or positive way. We can accept how we are and the life that we have been given or we can complain and winge. I accept me as I am and I look for positives. No one is perfect and if we look at all the disabilities around no one is really 100%... well if is not one thing it is another. Accept ourselves as we are and make the best of it bipolar or not this is the secret.

Alfredo

Rosebud

9/10/08 11:51am

So there isn't any hope for me ?

K B

9/10/08 3:08pm

I think it depends on the person's particular illness, when they were diagnosed, and how they respond to meds, lifestyle change, etc. My daughter was diagnoses bp 1 at age 7, is on lithium and a bit of Paxil, and she is a well adjusted, brilliant child, very driven. I wonder if an early diagnosis helped. She is 15. Therapy is not in the picture - she will not go. The meds are what help.

I think there is hope for everyone, but we may (or may not) have to change what we are hoping for. But I am not a pollyanna, and from what I have experienced, if a person is truly bipolar, it is likely that cognitive skills will be diminished. I do not know whether this is from the bpd or meds - I suspect that it is both. I have a question for everyone though. Did any of you have the experience of a med cahnge that made your thinking at or close to what you remember when you could think straight in the past? If so, are you staying stable for long periods of time without crashing into

mania, mixed states or depression? If so, which bipolar class are you in? BP 1,2 or NOS? I know this is a long question, but I am hoping some of the answers will help all of us.

As with all serious illness, we cannot give up hope. No I don't like the cogntive decline. But I am no longer in misery because my meds have helped tremendously.

I take Seroquel, lithium, and lamictal.

Rosebud

9/10/08 3:54pm

I am 19 years old. Suffered from mood swings all my life which got progressively worse in my last year of high school. Officially diagnosed at age 17 and got into an intensive program for teens in crisis. I probably saved my life. While there I was perscribed Lamictal and Abilify. Immediately helped to stablize the mood swings but not the depression. Had rapid thoughts and suicidal tendancies. Dr. added prozac to counter the depression. It works perfectly in combination with the other two meds BUT ONLY when I take the Lamictal/Ability at 8:00 am and the Prozac at 8:00 pm. Each has to be at it half life to complement the other. Intensive one-on-one therapy help get me through some rocky times this past year and I feel really good and stable. Since I've learned to use some coping skills and really concentrate on mind-fullness as a distraction to anxiety and depression I was hoping I was in some sort of a recovery period. I guess recovery .... like life ... means different things to different people. In the end, it's all about feeling balanced and at peace with yourself and the universe.

hobi.rae

9/11/08 3:20pm

Don't give up, ever. Just because we get frustrated at times it makes it even harder. Becoming angry and frustrated with myself sets it all off again, every time..

I look deep at what may have so called kicked it off again. I know I may not suffer as bad as some but alot of the previous comments Iv seen before I have went thru due to the wrong medications and mixes.

Its never to late to research for a better doctor either, you may like your doc is great and feal comfortable with him but the medical field is always changing, try something new, try something different.

The best and hardest thing I ever had to change to be happy was my DIET, I can't stress enough how much it helps. US Americans are terrible eaters, period.

Im talking like they say we are what we eat, If Im hitting fast food joints again, it usually takes about 2-3days before my body and mind start feeling crappy again, something with all that chemically treated food they sell changes our chemistry in the mind, I think. So their is always hope, and each day is a challenge for the better.

Rosebud

9/11/08 3:47pm

I guess the old saying, "An apple a day keeps the dr. away" is appropriate. You've got a great point about diet. Most times I eat on the run, but I do try to grab something good. I also think fresh air, no matter what the season, helps too. I had a melt down in the Spring around the time we changed the clocks. My pdoc. said we'd pay close attention come the winter salstice when the days are shorter and nights are longer and she may tweak my meds a bit. Hang in there, be happy and stay well.

hobie

9/11/08 8:01pm

YEs, Iv read about, and know Doctors many who would agree that are condition is due to many factors one being our enviroment, air quality..

clean fresh air helps me bigtime, fresh clean furnace filters, clean registers, they are for better quality clean fresh environment in the home.

I recently made a trip to The Smokey Mountains, I keept my window closed most of the drive untill i got in the National park, I passed clingmans dome and headed on the North Carolina side, Cherokee! Man the Cherokee Indians who live in that pinelike clean fresh air don't know how good they have it. The smell is incredible, I camped in an breathtaking site in the mountains and slept like a baby for the first time in ages. I woke up and my body hurt, I actually went into a deep sleep.

Iv tried saving money on electric with leaving the windows open in the house and its just not good, its different today, my house was full of pollen in days.

onlylonely

9/13/08 1:18am

Hello K B,

Wow, your post blew me away! And no, not in a positive way! I believe that if a person has a negative attitude about life, in general, and bipolar in specific, they will get what they ask for - negativism. On the other hand, if a person tries to be positive and believes that positive outcomes are possible, then chances are much better that something positive will happen to them.

I am diagnosed with Bipolar I - have been since 1981. I have had ups and downs and everything else you can imagine. Suicide? Tried that. Obviously, I didn't succeed.

I don't see bipolar I as a lifelong sentence that I must endure. I believe I CAN recover. I am now 54 years old and living a full life. My son is 16, and he is a godsend for me. I am taking classes called WRAP - Wellness Recovery Action Plan, as well as a training called Peer Employment Training, to become a Peer Support Specialist. The training is awesome! Sure, it is realistic about the fact that we have problems, that arise from our diagnoses. It also holds the belief that people can learn to help themselves, through the assistance of others who have been there.

Yes, I have to write everything down, or I would forget it! That isn't exactly a new thing for me, because I have been doing that for several years. Sure, my brain doesn't fire as fast I would like it to (unless I am manic - then it goes unabated), but this could be a function of my brain, my meds or lack of confidence in myself.

K B - even if you really, truly believe that the best any of us can hope for is a premature trip to a nursing home, how can you possibly live like that every day? I make a lot of choices in my life, and one of them is to look at things, positively and realistically. I do not see this illness as a death sentence - with us just waiting for execution day to come. I see it as yet another interesting, challenging facet of my being.

Readers out there!!! Please do not believe that if you have bipolar I or II, that your life is a lost cause. There is so much to live for. If you keep yourself open and make room for good things to happen, they eventually will happen. And when the bad times come, you can remember that life has a lot to offer - even if you have Bipolar I or II. I have a Peer Support Specialist, who listens to me as long as I need her to. She helps me keep things in perspective.

For myself, I do take psychiatric medications. I also see a therapist every other week. I have other support systems in place, as well. I have people to call if I get into a really bad space. They encourage me when I am not able to encourage myself. Together, we can help each other to be the best that we can be.

To me, the question is not whether or not Bipolar can be cured; the question is: how can we live the best life possible, in spite of or because of, bipolar?

Char

K B

9/14/08 2:31pm

My post was not pessimistic. It did not refer to everyone. It did refer to the body of of research that show that a great many of us suffer cognitive decline, and that for many of us in current times there is not cure for that. I did not infer that we are a lost cause or that the situation is hopeless. Bu many of us still remain unemployable, have mood swings tha affect aour personal lives, and find that medications do not cure this unless you are one of the few who strike the perfect balance.

I have worked with great therapists, 3 psychiatrists, and alternative therapies, along with countless med canges - yet I still had to give up my veterinary practice after 22 years.

As you may have noticed, I asked those on the site with state longterm stabily with cognitive skills improived to a great degree by stopping meds or adding/eliminating meds. By focusing on that, we may be able to help each other - K B

K B

9/14/08 3:04pm

I would like to add one more thing that may help. It probably does not apply to the lucky indiviuals who have remained stable with or without meds. I am referring to those, like me, where disorientation, distractibility, decreased abillity to learn new information very well, and failure to improve in this area with any type of med change or by eliminating

meds.

After 2 years of frustration and finally flat inability to do my job, or any job, anymore, my family and I had to look at the facts - I am unemployable at this time, and my docs, nutrition, etc currently cannot improve this. We had to downsize and live on my husband's salary. It helped to seek outside sources - I used webmd, mescape, pubmed and other credible sites to look at double blind, statisitcally significant studies that show clearly that cognitve decine is a problem with many bp patients, even when moods are normal. Again, this is not a pessimistic viewpoint. It is a review of current credible literature.

My doctor told me I should continue working, that I would be symptomatic even if i quit. What he did not realize is that this was no longer an option for me. I would have left my practice a lot sooner if he had recognized the cognitive issues as a problem in my daily life. He is a compassionate man and I think he wanted the best for me - and maybe he was uncomfortable pinning me with a probable longterm porgnosis of conitive problems. Yes, there is an increased chance of dementia. That statement does not imply that all people get it, and is not a pessimistic statemt - it is a sharing of information. Its OK to say that we are prone to complications and permanent afffects, just like we we say that people with a certain cholesterol profile are more at risk for stroke and heart disease than others. How is our situation different? It should not stop people from living, but it may over time force them to change their lifestyle.

Eveyone is different - and if you assume that I thik my experinces apply to everybody, then you will take these posts as negative. I am so happy for those who have stable moods and can think straight. But support to me means sharing experiences, sharing what we have learned personally and from the literature, and trying to put together the whole picture together so we can help one another. Information is power. And if we understand whatt is happeing, we are better equipped to deal with it emotionally and financially.

In my case leaving my job was a financial hardship, but I stopped having so many destructive moods. My cognitive skill are still poor, but I have to live with the consequences and integrate socially as much as I dare. Respectfully K B

Rosebud

9/15/08 9:26am

Yaahoo! You said in your reply what I could't manage to put together in mine. It's all about positivity and your outlook on life, AND that would hold true whether or not we suffer with bipolar or not! Stay happy and stay well, my friend. You are an inspriation to all of us out here in cyberspace just trying to keep our shins up and make it day by day.

Narelle

9/19/08 3:17am

Perhaps you should read the research that suggests that lithium can actually repair the brain damage...my Dr is a specialist in the history of Lithium, a professor in fact, and he believes this is true.

And i'm no goooey optimist but hell i've had some fun in my life, as well as some real downers, but I really believe that not hiding mental illness from anyone has taken a hell of a strain off of me (too up front when i'm "up" perhaps) and that has helped me from "losing it" from a cognitive perspective. The highs are amazing and the lows are harsh, but the slightly high with a bit of good old lithium is my personal preference. I work like a demon at a very high level and yeah, have my sick "mental health" days, but I am not losing it at all (except for the usual age related issues - but Nintendo Brain Train does wonders!). And come to think of it, most of my "normal colleagues" have "mental health" days. Sometimes we can think, and sometimes it's like pushing the proverbial uphill.

So you don't have to be a mad optimist, but there is hope and there are those of us who have kept on keeping on and are amazingly still here to prove it.

It hasn't done me in yet and i'm not going to let it.

Not "the power of positive thinking", more pig headed stubborness and a willingness to be open and honest so I don't have to spend my life putting valuable brain energy (boy that would be sapping) pretending that everythings just hunky dory.

Well that's my 10 cents worth. And yeah, go look at that research - you would have access to more medical journal websites than I do i'd hope.

Cheers and here's to life, whatever it brings.

K B

9/19/08 12:36pm

Every day is a cognitive struggle for me, I have no good cognitive days any more and am not very productive. So my experince is different than yours. And the research supports a high incidence of impaired cognition with lithium - note that it does not say that this happens to everyone, and it is not found to be irreversible. Google "cognitive impairment lithium" to see many university studies. I cannot find any research on the net that supports reparation of brain damage with lithium. If you can provide a link I will read it.

I talked to my psychiatrist yesterday and he cut my lithium in half. He says lithium is usually the problem. I am staying on my other drugs for now. I hope to remain stable , and am not inferring that this is the right choice for everyone since many need lithium to stay OK mood wise.

The rest of this post is a general comment meant for no one individual

Often I see on this sight a need to see docs as pill pushers who are bought out by drug reps and do not understand the problem. I think this is a mistake. There is alot of great research and great docs out there. I had to go through 2 bad docs to find a good one, but once you do, that, along with good self care and support is your best shot at being stable. Doctors are the experts on this. Yes, drugs have side effects but the vast majority of us would experience much worse adverse effects without them. Benefit vs risk. And they can be tweaked as needed, so I think it is too simplistic to say that drugs and doctors are the enemy. I am changing my drugs, and it may or may not work. But I can try something else in that case. The definition of hope is always looking at new opportunities, not throwing out the baby with the bath water.

As a medical professional, I suggest only seeking info from reputable sights. They wean out the trash studies. I suggest a free subscription to webmd. You doc has more time to answer questions and will have a better relationship with you if you seek out the most reputable information and then ask Qs . Randomly searching the net can do more harm than good by confusing the patient, or worse, swaying the patient toward noncompliance with meds, excessive expense, and hamful side effects. And your doc does not have time to answer qs about studies based on dubious research. There is a lot of garbage out there that can be very convincing to an unsuspecting reader. If you ask a Q that is based on 1) the way that you feel mood-wise - and/or - 2) a credible medical study - which he/she probably already knows about - you will have a great shot at getting the best care that you can. Believe. K B

Narelle

9/20/08 10:45pm

This kind of sums up what my doc told me though I am seeing him on Wednesday so will try and get some article names from him then for you.

http://www.dbsanova.org/news/n00002.html

As he has told me, it is the bipolar itself that causes the degeneration - especially if left untreated for a long period. Fortunately I do not have the issues you do, and I am so very sorry to hear about your problems with medication, hopefully the seroquel will continue to assist you - I only take 100mg at night but it really helps me sleep - something I don't normally do a great deal of.

I also believe that being married to a dutchman and eating a lot of fish and taking fish oil (he did it when he was a kid and insisted on our daughter having it - this is prior to any of the latest Omega 3 craze) has helped me too - not with mood but with cognitive function - I have come to love herring (never thought i'd say that, not ever!)

The dosage of Lithium is now a great deal lower for most patients than in the past, and as I said before I think this has a great deal to do with the "damage" it's caused. But we are all different, my brain chem is different from yours and everyone elses - that's why we all react so differently to meds. I can't take any anti-depressants ( and believe me in 10 years they've put me on all of them - SSRIs , tricyclics) cause they rocket me into mania within (I used to think that was my "normal") and Effexor XR actually induced a psychotic episode which was great for me but a nightmare for my partner - lucky it was a good trip :) Yet, many get good results from a mix of antidepressants and mood stabilisers - go figure!

The best med i've been put on was lamictal - i felt great, calm, motivated, productive and not a mile a minute. But, I got the "rash" - and again on a retry - so some of us can't do the "new meds" either - adn I have tried them all - for cognitive dyfunction superior to all others topomax was the best for me - fell asleep at my desk at work and a colleague had to drive me home.

So Lithium is the best option for me, at v small doses cause i'm a sensitive little thing - and with the precautions my Dr has put in place - and he's told me what "could" happen - I feel comfortable with that.

Still , there are more and more meds coming on the market dealing with cognitive syfuntion, and some of the new meds for dementia etc have been seen to be of use to those with other forms of cognitive loss. So I hope that things will change for you and you might get back some of what you lost.

No one gets "well"

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