You fight the demons of the mind, the demons of the flesh
Daily, every morning, you wake up in a nightmare… burning, jagged, screaming, hellish thoughts
Daily, every morning, you take a deep breath, gulp in air
You douse the flames with the sweet spring water of your tears, you smooth the sharp edges of boulders with emery boards, your thudding heart drowns out the cacophony of fear
You ask the earth to go back into the path it orbited last night, you ask the world for some peace and quiet, just a tiny bit from its stores, do they still exist?
Every day, this is how it is, everyday, the nightmares seem more real than my comforter, my sheets, which I want to engulf me and hide and be nevermore
By the time the afternoon comes, the wraiths, the ghosts, the demons have evaporated
I am allowed half a normal day, by the time night time arrives, I am fully back to myself again, no fears, no horrors, just me, smiling and laughing
I look back at the day and wonder what was all that? But it happens again the next morning
They call it anxiety. Why every morning? How to explain this to anyone?
Some days I am lucky, oh so lucky, and the battalion of doom doesn’t turn up at my door
Those are the days I live for, aaaah the normal days, just the days without fear, doubt, misgivings, just peaceful days, quiet days, just days
Bravery? Yes, I have more strength than I ever thought I possessed. Unfair, yes, but who has time for the measuring, the weighing, the quantifying whose life is fair and whose is not
Prions are known to cause Creutzfeldt-Jakob disease (the human version of mad cow disease) and kuru (in Papua, New Guinea), and have been implicated in Alzheimer’s disease, Parkinson’s disease, Huntinton’s disease, and amyotrophic lateral sclerosis (ALS).
What if prions were also responsible for mental illness? Those are a kind of neurodegenerative disorder as well!!
Until recently, there was no evidence that the abnormal proteins found in people who suffer from these well-known diseases could be transmitted directly from person to person. The tenor of that discussion suddenly changed this September when newly published research in the journalNature provided the first hint such human-to-human transmission may be possible. (Scientific American is part of Springer Nature.)
For the study, John Collinge, a neurologist at University College London, and his colleagues conducted autopsies on eight patients who died between the ages of 36 and 51 from Creutzfeldt-Jakob. All the subjects had acquired the disease after treatment with growth hormone later found to be contaminated with prions. The surprise came when the researchers discovered that six of the brains also bore telltale signs of Alzheimer’s—in the form of clumps of beta-amyloid proteins, diagnostic for the disease—even though the patients should have been too young to exhibit such symptoms.
These observations suggest that the tainted hormone injections might have carried small amounts of beta-amyloid proteins that triggered the formation of more such proteins. Neither Alzheimer’s nor any known human prion diseases are contagious through direct contact. Yet human transmission of prion diseases has occurred through certain medical procedures and, in the case of kuru, cannibalism. The new study therefore raises the possibility that Alzheimer’s is a transmissible disease with an etiology akin to prion diseases.
The new finding is provocative, but experts advise caution in interpreting the results. For instance, neuroscientist John Trojanowski of the University of Pennsylvania points to the small size of the study and lack of direct evidence for transmission in support of causality. But if it is eventually shown that Alzheimer’s and other neurodegenerative diseases indeed share the same basic pathological pathway and mechanism, treatments could target one and all.
“Transmission may occur in only a small percentage of human cases,” says Claudio Soto, a professor of neurology at the University of Texas Health Science Center at Houston. “But the underlying principle is the most important thing that could lead to new opportunities for therapeutic interventions and diagnostics.” Investigators such as Soto and Collinge are working on ways to detect in body fluids the presence of small clumps of the transmissible proteins now thought to be involved in Alzheimer’s and other neurodegenerative diseases, which could represent a diagnostic advance.
Such detection will likely be difficult. A study published online in September in the journal Nature Neuroscience by Mathias Jucker of the University of Tübingen in Germany and his colleagues required extremely sensitive methods to find minuscule clumps of beta-amyloid proteins, referred to as seeds, in mice brains. These seeds appear to be able to regain pathological properties even after six months of lying dormant. These possibly prionlike proteins might therefore exist in the brain long before symptoms develop, at levels too low to be found by routine tests.
One potentially prionlike protein may cause several diseases, according to a study published this summer by Nobel laureate Stanley Prusiner, who discovered prions in the 1980s. Prusiner and his colleagues found that a “strain” of alpha-synuclein—the misfolded protein involved in Parkinson’s—can cause a similar but rare neurodegenerative disease, called multiple-system atrophy. Understanding how variants of these disease-causing proteins differ in shape and how the particular configuration influences their pathogenic nature is destined to become a focus of future research. “There’s evidence that both prions and beta-amyloid exist as different strains and have very different biological effects,” says Lary C. Walker of Emory University, who was involved in the Nature Neuroscience study. “I think understanding this will give us insight into what’s happening in disease.”
As the evidence increases, more scientists now suspect that prionlike processes probably underlie all neurodegenerative disorders. Prusiner expected the current change in thinking: in his 1997 Nobel Prize lecture, he predicted that the understanding of prion formation could “open new approaches to deciphering the causes of and to developing effective therapies for the more common neurodegenerative diseases, including Alzheimer’s disease, Parkinson’s disease, and amyotrophic lateral sclerosis (ALS).”
My friend Julie Fast, who has a blog called http://www.bipolarhappens.wordpress.com, she is a bipolar d/o coach and advocate and she offers treatment plans for BPD, and she has written many books on the subject as well! She is quite amazing! She asked me what is one word I would say to a person who was newly diagnosed with bipolar disorder and my answer is in the mini video 🙂
You rarely hear the words bipolar disorder and hope spoken together. Lets hope (!) that treatment, education and other services needed to live well with this awful illness make the use of bipolar disorder and hope in a single thought a common occurrence!
Just got interviewed by Debbie Olsen for www.healthmonitor.com She is compiling a guide to bipolar 1 disorder, for people who have it and for their caregivers. The guide I was interviewed for will provide information and strategies as to how to cope with this not so amazing illness. The guide will be distributed to 16,000 psychiatrists’ and primary care doctors’ offices across the country. It will be published by Health Monitor Network (www.healthmonitor.com), which publishes many consumer health guides and magazines.
Once it’s published, I will, of course, post it here.
The picture is the reason I want to be well 🙂
I was feeling really bad recently, it was all about my son being so far away from us. How we sold our home and moved. My mind kept telling me that parents aren’t supposed to do that, parents are supposed to stay put, kids are the one who are supposed to move away, and then when they want, come back home for a visit. I guess that is generally how it works. But when we decided that my husband would accept the job offer in Louisville, my son had been accepted at Albany Law School. We, at that time had thought that he would be going to Law School in Albany, so no one would have stayed behind in Buffalo. But as things turned out, SUNY at Buffalo Law school called him in Albany and told him he’d been taken off the waiting list, so he resigned from Albany Law and I went and got him from Albany. We scrambled to find him an apartment because there was a housing shortage in Buffalo and we were moving to Louisville in November. And then I got very sick, out of touch with reality mania 😦 So those were the circumstances that led to us leaving my son in Buffalo, which had been our home for 20 years. I had actually mostly lived in Buffalo since I was 11. It was where my son grew up, in our beautiful home in East Amherst.
Recently, thoughts of our home, thoughts of leaving my son behind, even thoughts of how my son is not here to east the dinners I cook, all those thoughts had me sobbing, feeling guilty, thinking about all the mistakes I’d made with my son and how I’d never be able to correct them. Basically, I was miserable, living in the past, heartbroken and acutely re-experiencing empty nest syndrome. Every morning I got up sobbing, feeling like my heart was breaking (that’s what empty nest syndrome feels like, a broken heart that your precious child has flown the coop), just negative, depressing thoughts. I wrote to my e-counselor and even she got really worried about the tenor of my email. She told me to call my doctor. I forwarded him the email and asked him for help. At this point, I was beginning to see that this is not just negative thoughts, this is a depression. After my doctor read my melodramatic email, he said the best thing to do is to keep talking to my counselor, this was not a psychiatric issue, it was a psychological issue. I was dumbfounded. I told him that I was so disappointed with his answer, that it basically meant he was not going to help me. After a few emails back and forth, after I insisted I was going into a depression, and these thoughts of abandoning my son, empty nest (again) and all the negative thoughts were actually attaching themselves to my depressed mood, he agreed to help me with my medication and gave me a few options of what to do and I chose increasing my Seroquel from 50 mg to 100 mg. And now, since I did that, I feel so much better. Yes those thoughts are still there, but now they are not destroying me, they are not breaking my heart, the intensity of the sadness and suffering has decreased.
Just a couple of points why mental illness is so difficult to deal with:
1) Imagine having to convince a doctor that you really had broken your leg, and you were crying from pain, not some nebulous psychological issue.
2) Imagine going to a cardiologist, who misdiagnoses you with coronary artery disease, and you look at your own symptoms and tell him the correct diagnosis is a tumor of the adrenal glands leading to over production of epinephrine (haha) leading to tachycardia, and you are right!
I realize that symptoms and descriptions of symptoms, and people’s opinions can be different, and that is exactly why mental illness is not only a bear to live with, it is also a bear to have treated.
When we, people with bipolar disorder, are in a full blown manic phase or a severe depressed phase, the doses of medication we have to take to control those phases are astronomically higher than the doses of the same medicine we take when we are in a normal phase or euthymic.
I have been on as high a dose of Seroquel as 800 mg when I was in a full blown manic phase. If I were to take 800 mg of Seroquel today, I seriously think I would not wake up. My body at this normal phase would not be able to handle that large dose. Our metabolic rate increases a LOT when we are manic, therefore the weight loss and the staying awake all the time. So, our body, in that increased metabolic rate state, can metabolize al LOT more medication than it can in a normal or euthymic state. My lithium dose has been pretty large as well when I was in a full blown manic state, and without bad side effects such as loss of fine motor coordination, tremor, diureresis, even hair loss, and acne.
Many psychiatrists think that if I was on 800 mg of Seroquel when I was in a full blown manic state, that 800 mg is my maintenance dose. But they are WRONG! No one needs the high doses that we take in extreme phases as maintenance doses. Maintenance doses are much smaller. For example, I am currently on 75 mg of Seroquel, less than one tenth of the dose that I took in my severe phase.
I have been on such high doses of Depakote that literally half the hair on my head fell out, among other things, and still the doctor who prescribed it to me wanted to keep increasing the dose!
I’ve actually had arguments with previous psychiatrists about this, when they have tried to keep increasing my dose when I was normal or euthymic. Eventually, I would have to find a new psychiatrist and hope that they realized the dosage issue.
Thank goodness, I now have a doctor who realizes this fully, and was explaining it to me when I stopped him mid sentence and exclaimed “Hallelujah, finally, someone who understands this!!!”
These medications are powerful medications with awful side effects. The thing that is most beneficial is to use the smallest dose necessary to control our symptoms while having the fewest side effects. Of course the key is controlling your symptoms, so the dose has to do that adequately.
Just thought I would write about this because I have struggled a lot with this in the past. Now, I feel lucky to have the doctor I have.
And now my Seroquel is kicking in and I am about to fall into a deep slumber, so good night all!
Written in 2014. In a brief depressed phase. And yet there is hope, and yet I am alive. You can be in a severe depression such as described below, but you can survive it. You can go through it and come out on the other side and live and thrive. Just know that you can. I did it, I have done it many times, and I will keep on fighting. Fight with me.
How much should I tell you, how much should I disclose? How much of myself should I give away? How much of the façade should I let crumble? I feel sick, awful, teary, bad… yes depression is on its way…again. The pictures I post on Facebook with smiles on my face, happy, normal looking, that person is gone again. I know it doesn’t make any sense. But this is what bipolar d/o does. One day, you are fine, enjoying life, smiling, thinking about things, and then the next day, you are basically a lifeless statue, expressionless, thought-less, emotionless. All the positives gone. And you feel nothingness and pain. There is a weight on my chest, hard to take a deep breath. My muscles ache, my heart aches. My mind feels dull and empty, no happy, positive thoughts, no ideas, no plans. Tired, so tired. Don’t want to get out of bed in the morning. Don’t want to do anything. Can’t publish this. Don’t want people to know how much of a wreck I am right now. Can’t give it all away. Don’t want everyone to see me deconstructed. Have to keep up some pretense of who I am. Fine, look at me, see this mentally ill person in a depression. See me and count your blessings you were not born with a mental illness.
I have been feeling useless, like a burden, and generally a mess. But I have decided to tackle these things head on. Instead of wallowing in the misery that these thoughts have brought on, I will look at them another way, a more constructive way. Namely by asking myself what can I do to remedy this situation? Do more, be more… How? Well, I might have been feeling depressed or anxious or a little too up and did not accomplish all I should have. So, from now on, I will do more, not go on spending sprees (nothing major, haven’t bought a Maserati yet, haha) so there is not even the least bit of worry about our finances or bills. Yes, spending sprees are a symptom (sometimes) of my bipolar disorder. Actually, I am just very extravagant, my grandfather was and my grandmother used to berate him for it. I think I inherited it from him! (When in doubt, blame it on your progenitors.) But… and yes there is a but… since I am aware of this, I can surely control it. Right? I think, therefore I am! I, very possibly, need to stop using my illness as an excuse and be more functional, carry the responsibility of mine and my family’s life on my own two shoulders. Instead of feeling bad, I am going to be happy that I have had this insight, and now I am able to do something to remedy the negative things and do more of the positives that I was already doing. Yes, tomorrow is another day! Oh gosh, what would we do without our tomorrows (ok, ok Eckhart, don’t have a fit, I know it’ll be in the now that I will act)? And it is a day to be better than we were yesterday. To be out better selves. To be thankful for what we have in our lives. To be thankful for our loved ones. To not wallow in our misery, but LEARN, learn, learn from our missteps, and live life with responsibility, love and joy, and appreciation for all that is in our lives. Even the negative things, because they are our greatest teachers.
This is in response to a post I read (http://thelithiumchronicles.org/2015/04/22/you-cant-have-kids-youre-bipolar/) which was actually written in response to someone asking the author why she didn’t feel guilty for having children because the she has bipolar 1 d/o.
This hit close to home for me too. Although I have NEVER thought I shouldn’t have had kids, I love my son more than anything in the world, I understand where the person who asked this question is coming from. It isn’t easy in the best of circumstances to raise a child, let alone raising a child when you have a mental illness. Yes it is difficult at times. And yes I have lived in fear of having passed this down to my son, at this point in life, my enormous anxiety about that is under control. But, although we have gone through some very difficult times, we have also recovered from these difficult times. That is the stuff that strength and resilience (my favorite word, of late 🙂 ) are made of. And besides that, we have also had some very good and happy times. If someone says that to a person with mental illness, what about people who have the genes for early onset alzheimer’s, or cancer, or autoimmune diseases, or ALS? Which one among us is genetically perfect? There is no guilt on my part from having my son, he has brought me untold, unfathomable happiness and the love I felt for him, as soon as I saw him, as soon as I saw him, after the doctor handed him to me after the C-section, cannot ever be measured. Truly, it is a love that is bottomless, fathomless, and endless. I would never have not had my precious son, never.
Anyway, my answer is below:
I have son and he is the love of my life! I would never have not had him. Anyway, your child doesn’t have a 100% chance of getting bipolar d/o, the chances are 30% max, that your child may inherit this infernal disease. Yes there were hair raising times, (a few) when parenting him was hard, yes he may have been exposed to some things that a child of a parent who is not mentally ill would never be exposed to. But he is a marvelous human being, compassionate, passionate, and he is in second year Law school. I wish him only love and laughter in his life and I am his biggest fan, and of course being his mom, worry incessantly about him. But to not have him here now, how sad that would have been.