Our society hates whiners. We are told from most every aspect of our lives to stop whining and complaining, to pull ourselves up by our bootstraps and get moving.
It is very rare that I feel comfortable or confident when writing my posts. They can take me hours/days to do. Quite often I get part way through a post and find myself so conflicted that I don’t finish. Sometimes I don’t begin.
It seems I’m always apologizing for the content of my posts and the timing gaps between them. I worry that they don’t contain enough information and resources to assist those who read them. I don’t give many facts and figures; I don’t cite many authorities on the subject of mental illness.
My blog is personal. Because it’s personal, it’s difficult for me to write. It seems I’ve been apologizing for my mental “illness” all my life – both before and after it being recognized as an “illness”. As we “mental health consumers” begin to find our voice much of what is related seem like horror stories. They are discouraging to hear, over and over. However I don’t believe the stories are told simply for dramatic effect or to solicit sympathy – the events are, after all, horrific to experience.
A couple of days ago on the Minds on the Edge Facebook page a posting suggested that while it is comforting to commiserate over the stigma of mental illness, perhaps it would be helpful to post actions we are taking to fight it. While I agree that it is important to move beyond the pain to empowerment when we relate to each other, I do not think we are yet ready to stop telling our story to the general public. It is with the general public that stigma must be stopped.
On Wednesday night President Obama spoke in his State of the Union Address of the anger that the American people are feeling right now. He said (paraphrased) “they are afraid for their lives and their livelihood. They are frustrated because they continue to ask for, vote for change and get instead the same status quo of immovable personal interests, and end up feeling they are not being heard. Fear makes us angry.”
I will be following up this blog posting with one on how I feel the statement "Fear makes us angry" can directly relate to mental illness, specific to my personal experience.
The mentally ill are often seen as violent, to be feared, and put away from others. Indeed, our voices can be angry and may continue to be in the near future. I submit that quite often it is because we are afraid – for our lives. We are frustrated with the lack of true understanding, consideration and concern for our health, our safety and our quality of life.
Yes, we're angry. We're afraid! Quite often we have been living a nightmare. We are asking to be heard.
The President also spoke of not giving up on working together to bring about change.
Neither should we. But in order for change to occur, it must be recognized as necessary. In order for others to come together with us to create change, they must be educated as to exactly what needs to be changed and why, and to recognize its importance. Sometimes a large pendulum swing is necessary for change to occur.
No, the general public does not want to hear our horror stories. They don’t want to hear or experience the angry voices. Much better those voices be sedated - relegated to inferior, unworthy, shameful beings much easier forgotten.
It is needful that we continue to make our voices heard – to Bring Change to Mind – to educate and promote understanding and compassion. I am not whining. I am not less than others because my inter-personal education and physical genetics could use improvement and assistance. I do not deserve less than others – in my health, my safety, or my quality of life.
I stand with Dr. Fred Freese when he said, “I refuse to be ashamed any longer”. I refuse to stop telling my story - difficult and uncomfortable though it is – for myself and those who may read it. I refuse to stop providing links to other stories.
With that in mind, please check out this blog posting by John McManamy entitled Clinicians - Worst Purveyors of Stigma. Be sure to also read the insightful comment by Loretta that follows the article. This is a mind-set/practice that needs to be changed.
Showing posts with label mental illness. Show all posts
Showing posts with label mental illness. Show all posts
Saturday, January 30, 2010
Wednesday, January 6, 2010
Which Came First?
I have a Doctor's appointment on Jan. 27th. In some respects I can't wait to get there, given that I've been waiting since September and haven't seen a doctor in at least a couple years. When I think of it, there's a small amount of hope - but there's an awful lot of fear and dread.
I get very scared when I'm experiencing what I assume are heart related issues - coughing, tight chest, shortness of breath, extreme fatigue and exhaustion. At those moments I pray I just make it to Jan. 27 without having a stroke in the meantime.
Even with these symptoms I continue to soothe my fear (to "comfort" myself) with food and grab for a cigarette when the anxiety and discouragement are high (which is most of the time).
So, there's that fear.
Then there's the fear of who this person will be and their manner. Will they be a compassionate person and have concern and understanding for mental illness? Will they consider that the anxiety, depression, discouragement, and other life issues keep me from having the strength to get over the addictions that have led to my poor physical health? Or will they see me as fat and disgusting, and tell me that they're not going to waste their time if I don't quit smoking and lose weight.
Quit smoking and lose weight is obviously what I need to do. But how do I do that? Sometimes I wish there was an AA for smoking and weight loss. Actually, (I know) there are programs out there. But what I'm talking about is the level of support given, the recognition of the degree of support needed by some folks, the feelings of powerlessness that some folks experience in feeling capable of doing it themselves.
The AA program is usually recognized by most people as a complete transformation of a person's life - necessary in order to overcome the addiction. If you've ever read the AA's "Twelve Steps", you know that the first is that the person state/admit/accept that they are an Alcoholic and that they are powerless (have been powerless) to get over it by themselves. They need help: Help from a Source beyond themselves - and help from a community - on a day to day basis.
So they come together at meetings to support each other. Oftentimes you can attend a meeting somewhere close to you on any given day of the week. Then they give you a "sponsor" - not just any person - but a person who has been were you are now. A person that you can call any time of the day or night, wherever you are - and they will be there for you - helping to provide whatever you need at that moment: motivation, strength, comfort, determination...
I would think that being a sponsor is a daunting task, time consuming, certainly very difficult at times. I see it as taking a certain caliber of person, one with a huge amount of willingness to help another.
----------------------------------------------------------
Let me move in another direction here..... the reason for the name of this post: "Which Came First"...
The compassion, understanding and support that I talked about relative to the AA is what I long for, have deeply ingrained in me that I need, in order to "heal" - emotionally and physically. I don't believe that any person can be truly healed of anything without treating the "whole" person. (The lack of understanding of that is a whole 'nother discussion for another day.)
I need compassion, support, and understanding. But that's not what I've gotten.... Oooooowwww... that seems like an awful statement - accusatory, self-pitying, laying blame. That is not what I intend.
I want to talk about what actually has happened in my experience because it leaves me with such confusion, makes my mind swirl, leads to depression and discouragement. I can't figure it out (obviously) and so here I sit... overweight, "heart"sick, and waiting to die.... Though I don't want to die..... I just want life to not be like this.... I want to die if this is what life has to be like.. But then I'm told from my Spiritual reading that "death" solves none of it.... because we continue beyond.... and I believe that too....
Anyway, the other side of compassion, support, and understanding feels, to me, to be lack of interest, caring, concern for a person, not desiring to understand, or take the time to understand, not believing in "supporting" another. I often see this as a "fault finding" attitude, a singularness, a separation and a desire to maintain such manners and actions. All in all, a critical attitude.
Frank (hubby) and I are both Virgos - a sign known to have the trait of being critical. We both sure can be at times. In many ways, we take the same attitudes; in others we are total opposites. We both have very strong belief structures, deeply seated, that I think are the result of both our persons and our upbringings.
In understanding my needs, and the needs of others, he often seems (to me) to be totally devoid. This has always led to a huge amount of personal pain for me. But let me explain.... Frank is not devoid of compassion or love, he just believes very deeply from the perspective of the individual - that it is each individual's responsibility to learn and do for themselves - that to "help" another is to enable them to be less... and to keep them from doing for themselves. He sees things in a very black and white manner, without emotional attachment. He can't seem to understand emotional attachment, because it doesn't come in to his realm of thinking. Deeply seated also, I'm sure, is the old thought that to be emotional is to be weak. To him, to be a strong person, you must be self-reliant, independent, capable of functioning totally on your own, and not blown away by the attitudes and actions of others. When you allow emotion to reduce your person, you lose your strength. You don't waste your time "thinking about" anything, not the gray areas of any issue and especially not yourself. You simply recognize what needs to be done, you make your decision from a singular perspective (yours), you DO IT, and move on...
I, on the other hand, cannot see the world from a singular perspective. I believe that we are One, in Essence, and that each action we take has the potential of affecting others. I see it as our responsibility to love and help one another - always. I cannot take the emotion out of the equation.
So, yes, I am emotional. And yes, I expect "help" and support from others. And when I do not receive it, I feel personally rejected and unconsidered - or "considered" unimportant or of no value in the others' eyes.
I also add the connotation of "good" and "bad" to this. To me it is more important to be a "good" and "considerate" person than to be a "strong, independent" person - inconsiderate of others' needs.
Old manners of thinking, on both our parts, and extreme, on both our parts.
To "have understanding" and "be compassionate" of others, I always strive to "see both sides" of any issue or opinion. That doesn't mean I always agree with it.... but I do try to listen and educate myself to it. And so I have tried very hard over the years to understand Frank's view of things. I can see the value, the importance, and the need for some of it. I can see how some parts of it are necessary for a person to "be strong". But to agree fully with his opinion is to see me as weak, and the continued years of "emotional" thinking as the cause for "illness" in my mind and body, the result being the very "poor" individual that will appear in the Doctor's office on the 27th. Is that the way the Doctor will see it? - Take a hard line that I am a result of my decisions, my thinking, and thus a poor specimen of an individual... unworthy of consideration?
I digress... again...
This afternoon, in actually being able to talk with Frank about all this (that's a new one!), the thought occurred to me that it is not one or the other - perhaps it is both. There is much validity in Frank's view, and there is much validity in mine. That is the "Yin and Yang" of the world. You don't "choose one or the other". You recognize that there is both.
And perhaps it is only in the extremity of either - the total refusal to consider the other - the extremes of "emotional pain" - that we lose sight of "health". A belief that I am totally helpless, less than, and weak, does make me weak, and keeps me from seeing and experiencing my capabilities. However, a belief that in order to be "strong" you must be totally independent, in "need" of no-one, without emotion, leaves a person without the experience of love and compassion and without learning all that can be accomplished together.
There is an idea - in mental health counseling, self-help books and spiritual practices - that advocates to "remove yourself" from certain people and situations that are detrimental to your "growth", emotional state, and overall emotional "health". All these years I saw Frank's view as such a hard line - a meanness, lack of compassion, love, and understanding. And I often thought that it greatly contributed to my "illness" and insecurities. Yet, I refused to believe that God would have me leave this man that I knew to be such a wonderful person in so many other ways. Eventually I learned to stop laying blame on either side, but to look for the positive aspects of both, without an excess of emotion and extreme thinking. In refusing to give up, we have learned of each other, softened, and come more to the center of understanding.
Perhaps that is what life is all about. I don't know.
I started this post from my confusion - am I right? - am I wrong? (Which came first - the chicken or the egg?) Is there an answer? I don't know...
I had wanted to share with you the confusion that comes from trying to consider so much, not find an answer, and the "vicious cycle" of that, that has seemed to contribute to, and keep me in this "mental illness". And yes, I was looking for your "help" and opinions..
Now I feel a little better... a little less insecure... and a little better able to take a "wait and see" attitude about the Doctor (as Frank suggested)...
But I guess I'll put this post out there anyway... regardless of what the cyber-world's attitude may be (that bothers me also, each time I write)... as a potential contribution to understanding....
I get very scared when I'm experiencing what I assume are heart related issues - coughing, tight chest, shortness of breath, extreme fatigue and exhaustion. At those moments I pray I just make it to Jan. 27 without having a stroke in the meantime.
Even with these symptoms I continue to soothe my fear (to "comfort" myself) with food and grab for a cigarette when the anxiety and discouragement are high (which is most of the time).
So, there's that fear.
Then there's the fear of who this person will be and their manner. Will they be a compassionate person and have concern and understanding for mental illness? Will they consider that the anxiety, depression, discouragement, and other life issues keep me from having the strength to get over the addictions that have led to my poor physical health? Or will they see me as fat and disgusting, and tell me that they're not going to waste their time if I don't quit smoking and lose weight.
Quit smoking and lose weight is obviously what I need to do. But how do I do that? Sometimes I wish there was an AA for smoking and weight loss. Actually, (I know) there are programs out there. But what I'm talking about is the level of support given, the recognition of the degree of support needed by some folks, the feelings of powerlessness that some folks experience in feeling capable of doing it themselves.
The AA program is usually recognized by most people as a complete transformation of a person's life - necessary in order to overcome the addiction. If you've ever read the AA's "Twelve Steps", you know that the first is that the person state/admit/accept that they are an Alcoholic and that they are powerless (have been powerless) to get over it by themselves. They need help: Help from a Source beyond themselves - and help from a community - on a day to day basis.
So they come together at meetings to support each other. Oftentimes you can attend a meeting somewhere close to you on any given day of the week. Then they give you a "sponsor" - not just any person - but a person who has been were you are now. A person that you can call any time of the day or night, wherever you are - and they will be there for you - helping to provide whatever you need at that moment: motivation, strength, comfort, determination...
I would think that being a sponsor is a daunting task, time consuming, certainly very difficult at times. I see it as taking a certain caliber of person, one with a huge amount of willingness to help another.
----------------------------------------------------------
Let me move in another direction here..... the reason for the name of this post: "Which Came First"...
The compassion, understanding and support that I talked about relative to the AA is what I long for, have deeply ingrained in me that I need, in order to "heal" - emotionally and physically. I don't believe that any person can be truly healed of anything without treating the "whole" person. (The lack of understanding of that is a whole 'nother discussion for another day.)
I need compassion, support, and understanding. But that's not what I've gotten.... Oooooowwww... that seems like an awful statement - accusatory, self-pitying, laying blame. That is not what I intend.
I want to talk about what actually has happened in my experience because it leaves me with such confusion, makes my mind swirl, leads to depression and discouragement. I can't figure it out (obviously) and so here I sit... overweight, "heart"sick, and waiting to die.... Though I don't want to die..... I just want life to not be like this.... I want to die if this is what life has to be like.. But then I'm told from my Spiritual reading that "death" solves none of it.... because we continue beyond.... and I believe that too....
Anyway, the other side of compassion, support, and understanding feels, to me, to be lack of interest, caring, concern for a person, not desiring to understand, or take the time to understand, not believing in "supporting" another. I often see this as a "fault finding" attitude, a singularness, a separation and a desire to maintain such manners and actions. All in all, a critical attitude.
Frank (hubby) and I are both Virgos - a sign known to have the trait of being critical. We both sure can be at times. In many ways, we take the same attitudes; in others we are total opposites. We both have very strong belief structures, deeply seated, that I think are the result of both our persons and our upbringings.
In understanding my needs, and the needs of others, he often seems (to me) to be totally devoid. This has always led to a huge amount of personal pain for me. But let me explain.... Frank is not devoid of compassion or love, he just believes very deeply from the perspective of the individual - that it is each individual's responsibility to learn and do for themselves - that to "help" another is to enable them to be less... and to keep them from doing for themselves. He sees things in a very black and white manner, without emotional attachment. He can't seem to understand emotional attachment, because it doesn't come in to his realm of thinking. Deeply seated also, I'm sure, is the old thought that to be emotional is to be weak. To him, to be a strong person, you must be self-reliant, independent, capable of functioning totally on your own, and not blown away by the attitudes and actions of others. When you allow emotion to reduce your person, you lose your strength. You don't waste your time "thinking about" anything, not the gray areas of any issue and especially not yourself. You simply recognize what needs to be done, you make your decision from a singular perspective (yours), you DO IT, and move on...
I, on the other hand, cannot see the world from a singular perspective. I believe that we are One, in Essence, and that each action we take has the potential of affecting others. I see it as our responsibility to love and help one another - always. I cannot take the emotion out of the equation.
So, yes, I am emotional. And yes, I expect "help" and support from others. And when I do not receive it, I feel personally rejected and unconsidered - or "considered" unimportant or of no value in the others' eyes.
I also add the connotation of "good" and "bad" to this. To me it is more important to be a "good" and "considerate" person than to be a "strong, independent" person - inconsiderate of others' needs.
Old manners of thinking, on both our parts, and extreme, on both our parts.
To "have understanding" and "be compassionate" of others, I always strive to "see both sides" of any issue or opinion. That doesn't mean I always agree with it.... but I do try to listen and educate myself to it. And so I have tried very hard over the years to understand Frank's view of things. I can see the value, the importance, and the need for some of it. I can see how some parts of it are necessary for a person to "be strong". But to agree fully with his opinion is to see me as weak, and the continued years of "emotional" thinking as the cause for "illness" in my mind and body, the result being the very "poor" individual that will appear in the Doctor's office on the 27th. Is that the way the Doctor will see it? - Take a hard line that I am a result of my decisions, my thinking, and thus a poor specimen of an individual... unworthy of consideration?
I digress... again...
This afternoon, in actually being able to talk with Frank about all this (that's a new one!), the thought occurred to me that it is not one or the other - perhaps it is both. There is much validity in Frank's view, and there is much validity in mine. That is the "Yin and Yang" of the world. You don't "choose one or the other". You recognize that there is both.
And perhaps it is only in the extremity of either - the total refusal to consider the other - the extremes of "emotional pain" - that we lose sight of "health". A belief that I am totally helpless, less than, and weak, does make me weak, and keeps me from seeing and experiencing my capabilities. However, a belief that in order to be "strong" you must be totally independent, in "need" of no-one, without emotion, leaves a person without the experience of love and compassion and without learning all that can be accomplished together.
There is an idea - in mental health counseling, self-help books and spiritual practices - that advocates to "remove yourself" from certain people and situations that are detrimental to your "growth", emotional state, and overall emotional "health". All these years I saw Frank's view as such a hard line - a meanness, lack of compassion, love, and understanding. And I often thought that it greatly contributed to my "illness" and insecurities. Yet, I refused to believe that God would have me leave this man that I knew to be such a wonderful person in so many other ways. Eventually I learned to stop laying blame on either side, but to look for the positive aspects of both, without an excess of emotion and extreme thinking. In refusing to give up, we have learned of each other, softened, and come more to the center of understanding.
Perhaps that is what life is all about. I don't know.
I started this post from my confusion - am I right? - am I wrong? (Which came first - the chicken or the egg?) Is there an answer? I don't know...
I had wanted to share with you the confusion that comes from trying to consider so much, not find an answer, and the "vicious cycle" of that, that has seemed to contribute to, and keep me in this "mental illness". And yes, I was looking for your "help" and opinions..
Now I feel a little better... a little less insecure... and a little better able to take a "wait and see" attitude about the Doctor (as Frank suggested)...
But I guess I'll put this post out there anyway... regardless of what the cyber-world's attitude may be (that bothers me also, each time I write)... as a potential contribution to understanding....
Friday, December 4, 2009
A momentum is Building!
Dear Friends,
Today I finally remembered to address the problem that was preventing me from posting my story on the Bring Change 2 Mind website. Emily from that site was a wonderful help, and I was able to post my story.
This evening I went back to see if there were any comments that I should respond to. While there I read some of the other stories of consumers, friends, and family with mental health issues. The stories tore at my heart, especially those that detailed the suffering in silence and isolation that so many have gone through (and continue to go through) because of our ignorance and fear.
Tonight I ask you once again, if you can spare just a few moments, to please visit the story page at Bring Change 2 Mind and read a few. Perhaps then you will have a better understanding of why we need you.
A momentum is building. Through the efforts of Bring Change 2 Mind and Minds on the Edge those with mental health issues are coming out, and finding their voice. We are picking up the byline of Minds on the Edge that says: "If we can talk about mental illness, so can you".
And we are. The Facebook pages of these two organizations are having continual traffic. Last week the "Minds" page posted that they are in the top 7.5% of fanpages on Facebook, the Number 2 FB gathering place. The Bring Change 2 Mind Facebook page includes a very active discussion tab where people are coming together, answering questions, providing support and resources. That is great news.
However I've been concerned that much of the traffic is coming from mental health consumers and those close to them. It is really important that the word be spread to the general public and that the general public come to understand and begin to take part in helping us address the issues.
The conversation is moving forward. Today both Bring Change 2 Mind and Minds on the Edge posted links on their FB pages to news stories and blogs that are engaging large segments of the country. Please check them out: Stew Friedman's blogpost addressing the business community and how they can help change attitudes and practices in the workplace; and the Clutter Museum's blogpost regarding Elyn Saks (a law professor and panelist on "Minds" video) and how her recent post to academia is seeing a whirlwind of email links activity. The comments on the Clutter Museum page are especially interesting. Please be sure to take a look.
Whenever you can please join the conversation. Post on your Facebook or other Social Site pages, give people links to websites I've mentioned, or send them to my blog http://pam-lifeontheedge.blogspot.com/ for access.
A momentum is building, our voices are coming out strong, and the silence being broken. Please lend your voice to help us push it ever forward, alleviating the fear, isolation, and stigma.
Thanks and Blessings,
Pam
Today I finally remembered to address the problem that was preventing me from posting my story on the Bring Change 2 Mind website. Emily from that site was a wonderful help, and I was able to post my story.
This evening I went back to see if there were any comments that I should respond to. While there I read some of the other stories of consumers, friends, and family with mental health issues. The stories tore at my heart, especially those that detailed the suffering in silence and isolation that so many have gone through (and continue to go through) because of our ignorance and fear.
Tonight I ask you once again, if you can spare just a few moments, to please visit the story page at Bring Change 2 Mind and read a few. Perhaps then you will have a better understanding of why we need you.
A momentum is building. Through the efforts of Bring Change 2 Mind and Minds on the Edge those with mental health issues are coming out, and finding their voice. We are picking up the byline of Minds on the Edge that says: "If we can talk about mental illness, so can you".
And we are. The Facebook pages of these two organizations are having continual traffic. Last week the "Minds" page posted that they are in the top 7.5% of fanpages on Facebook, the Number 2 FB gathering place. The Bring Change 2 Mind Facebook page includes a very active discussion tab where people are coming together, answering questions, providing support and resources. That is great news.
However I've been concerned that much of the traffic is coming from mental health consumers and those close to them. It is really important that the word be spread to the general public and that the general public come to understand and begin to take part in helping us address the issues.
The conversation is moving forward. Today both Bring Change 2 Mind and Minds on the Edge posted links on their FB pages to news stories and blogs that are engaging large segments of the country. Please check them out: Stew Friedman's blogpost addressing the business community and how they can help change attitudes and practices in the workplace; and the Clutter Museum's blogpost regarding Elyn Saks (a law professor and panelist on "Minds" video) and how her recent post to academia is seeing a whirlwind of email links activity. The comments on the Clutter Museum page are especially interesting. Please be sure to take a look.
Whenever you can please join the conversation. Post on your Facebook or other Social Site pages, give people links to websites I've mentioned, or send them to my blog http://pam-lifeontheedge.blogspot.com/ for access.
A momentum is building, our voices are coming out strong, and the silence being broken. Please lend your voice to help us push it ever forward, alleviating the fear, isolation, and stigma.
Thanks and Blessings,
Pam
There's Always Hope
Hello Friends,
Oh my goodness, what a week it's been! It's had a lot of activity (for me, anyway) and I'm not sure how I feel about that! Good, I guess... and that is different :)
I guess it feels strange because my emotions have been on a roller coaster. The "norm" for me for quite a while had been just self imposed numbness, so that I didn't have to feel anything.
Sometimes the world still imposes itself upon my desire to hide, such as when I had to try to deal with Frank's (hubby) insurance company regarding his recent hospital stay. What a nightmare that has turned out to be! It seems that since we moved to Vermont, none of the Doctors or hospitals around here are in the "network" of the insurance company. So that means that the insurance offered by his employer is pretty much useless to us. We will be required to meet an annual $10,000 deductible on top of the premiums. This is the only insurance offered by his employer, and now with him having a "pre-existing condition" getting our own through another carrier would be a problem..... I guess I hope now that the new Health Care Bill doesn't require people to have insurance... we'd be better off taking a chance of going without it, and covering costs ourself. Not sure what we're going to do. I didn't (and don't) want to think about it....
Thinking of it puts me in deep deep depression... whatever future we may have had feels blown for sure...
Frank was getting ready to travel again for his job, meaning I would be alone again for a while... Beth was trying to register her car in Vermont, but had lost her old registration, meaning she had to take a flying 6 hour trip to New Hampshire to get a copy and return in that same day (of course this was the last day before her registration expired!) Worrah, worrah, worrah! I was a zombie.
I've tried to move past it.... it is Christmas time after-all.
Meeting lots of new folks on Facebook, reading blogs, and enjoying having people to interact with again actually made me feel happy one day! When Beth called that morning, I told her it also made me feel uncomfortable. I'm just not used to feeling happy; it was kind of scary... can you believe that? Beth said: "Don't analyze it, Mom; just let yourself feel happy."
It lasted a little while and felt good! It's been so long!
The Minds on the Edge Facebook page has posted a link to my blog twice. Interaction with more people and the kindly comments they made felt wonderful. Sometimes I really need a reminder that there are good people in this world, and I am very grateful. Thank you so much!
I read a nice blog about the spirit of Christmas, that told of a man who had been a true "Secret Santa" for many years, giving out $10 and $20 bills to folks in obvious need. It was such an inspiring idea, and made me think of the spiritual truth that "To Give is to Receive". So I made my own blog post around both those ideas.
But you won't find that post now. I was feeling so conflicted about not being that "good" myself that it took me almost 4 hours to write it. Thinking I should let that conflict show (because my blog is about what it's like to be me) I spoke of it in the post and tried to express what I was feeling. But it "felt" so awful to have that out there in cyber-space, that I just couldn't and deleted the post a short while afterward.
I continue to talk to Beth about the folks I've met, the support and ideas around Minds on the Edge, Bring Change 2 Mind, or individuals' blogs. Most of the time she still says she just can't come out herself yet, though she does look at a few websites and blogs. We've talked about trying to get something going around here.
Beth has talked with her Nurse Practitioner about the Minds on the Edge video, but received no apparent interest. The NP told her of a group she'd try to get her in to, but you need special referral, apparently. It's been weeks with no movement there. We'd like to do a showing of MOTE and perhaps try to get a real "face to face" support group of some kind. But we really have our doubts that just the two of us would have the ability and confidence to follow-through and not give up.
We've talked with my son, Patrick, asking if he would lend support and assistance. He seemed open to the idea, so we'll keep working with it... Things move slowly... but that's the only pace I can handle now...
Beth says she continues to make progress with her new med, though she's a little worried about coming off one other. She's had some panicky anxiety/paranoia in her new apartment, and nightmares most nights, but she's handling it... The NP wanted the Psychiatrist at the office she uses to meet with Beth, to go over her meds, and that finally happened this week. He added a mood stabilizer... round and round we go...
I ended up alone only one night, because Patrick is living with us now. He had gone to visit friends, and Frank was gone on work travel. That night I watched Rudolph. I wanted the good feelings it brings. The emotions were extreme: the wonderfulness of Christmas shared with children and my own heartbreak of no grandchildren to share it with. I moved between irrepressible smiles of joy and scalding tears of emptiness. The extremity of it scared me, but I was happy that I gave myself the opportunity to feel the joy.
Later that evening I read some of my old journals and felt my connection to Spirit renewed. When I read some of the amazing "conversations" between me and Spirit, I can't imagine how I end up going through these dry spells.
But actually, Spirit reminded me in those posts that the life of illusion we live here has little to do with our Soul connection to All That IS. That connection is never broken, no matter the crazy situations we put ourselves in here. No matter how little we see ourselves, how horrible we think we are, God knows differently. And Spirit is with us always, through all those places. We are beloved, regardless, and should act from that, giving no heed to the obscure human characters we have made ourselves to be.
Patrick and I talked for hours the next day... we drive the rest of the family crazy with the length and depth of our philosophical and spiritual discussions. But we enjoy it. He helped bring back the hope, the joy, and the ability to see myself as something other than just my shortcomings. Having him here is a real blessing.
That's just part of my week. There's more, but I've been too long already... As I said, this much activity is a lot for me! Yes, it's been a roller-coaster, but having things to do and people to talk to has felt wonderful. Handling it fairly well gives me hope that maybe (maybe) I can handle more. It scares me to be out here, and it scares me to tell people that I'm moving again. I'm afraid I'll fall back and retreat again, and I'm afraid that people won't have understanding if I do.
But I hope you will be encouraged, as I am, that Hope has returned, a little bit. There's always hope, they say.....
Oh my goodness, what a week it's been! It's had a lot of activity (for me, anyway) and I'm not sure how I feel about that! Good, I guess... and that is different :)
I guess it feels strange because my emotions have been on a roller coaster. The "norm" for me for quite a while had been just self imposed numbness, so that I didn't have to feel anything.
Sometimes the world still imposes itself upon my desire to hide, such as when I had to try to deal with Frank's (hubby) insurance company regarding his recent hospital stay. What a nightmare that has turned out to be! It seems that since we moved to Vermont, none of the Doctors or hospitals around here are in the "network" of the insurance company. So that means that the insurance offered by his employer is pretty much useless to us. We will be required to meet an annual $10,000 deductible on top of the premiums. This is the only insurance offered by his employer, and now with him having a "pre-existing condition" getting our own through another carrier would be a problem..... I guess I hope now that the new Health Care Bill doesn't require people to have insurance... we'd be better off taking a chance of going without it, and covering costs ourself. Not sure what we're going to do. I didn't (and don't) want to think about it....
Thinking of it puts me in deep deep depression... whatever future we may have had feels blown for sure...
Frank was getting ready to travel again for his job, meaning I would be alone again for a while... Beth was trying to register her car in Vermont, but had lost her old registration, meaning she had to take a flying 6 hour trip to New Hampshire to get a copy and return in that same day (of course this was the last day before her registration expired!) Worrah, worrah, worrah! I was a zombie.
I've tried to move past it.... it is Christmas time after-all.
Meeting lots of new folks on Facebook, reading blogs, and enjoying having people to interact with again actually made me feel happy one day! When Beth called that morning, I told her it also made me feel uncomfortable. I'm just not used to feeling happy; it was kind of scary... can you believe that? Beth said: "Don't analyze it, Mom; just let yourself feel happy."
It lasted a little while and felt good! It's been so long!
The Minds on the Edge Facebook page has posted a link to my blog twice. Interaction with more people and the kindly comments they made felt wonderful. Sometimes I really need a reminder that there are good people in this world, and I am very grateful. Thank you so much!
I read a nice blog about the spirit of Christmas, that told of a man who had been a true "Secret Santa" for many years, giving out $10 and $20 bills to folks in obvious need. It was such an inspiring idea, and made me think of the spiritual truth that "To Give is to Receive". So I made my own blog post around both those ideas.
But you won't find that post now. I was feeling so conflicted about not being that "good" myself that it took me almost 4 hours to write it. Thinking I should let that conflict show (because my blog is about what it's like to be me) I spoke of it in the post and tried to express what I was feeling. But it "felt" so awful to have that out there in cyber-space, that I just couldn't and deleted the post a short while afterward.
I continue to talk to Beth about the folks I've met, the support and ideas around Minds on the Edge, Bring Change 2 Mind, or individuals' blogs. Most of the time she still says she just can't come out herself yet, though she does look at a few websites and blogs. We've talked about trying to get something going around here.
Beth has talked with her Nurse Practitioner about the Minds on the Edge video, but received no apparent interest. The NP told her of a group she'd try to get her in to, but you need special referral, apparently. It's been weeks with no movement there. We'd like to do a showing of MOTE and perhaps try to get a real "face to face" support group of some kind. But we really have our doubts that just the two of us would have the ability and confidence to follow-through and not give up.
We've talked with my son, Patrick, asking if he would lend support and assistance. He seemed open to the idea, so we'll keep working with it... Things move slowly... but that's the only pace I can handle now...
Beth says she continues to make progress with her new med, though she's a little worried about coming off one other. She's had some panicky anxiety/paranoia in her new apartment, and nightmares most nights, but she's handling it... The NP wanted the Psychiatrist at the office she uses to meet with Beth, to go over her meds, and that finally happened this week. He added a mood stabilizer... round and round we go...
I ended up alone only one night, because Patrick is living with us now. He had gone to visit friends, and Frank was gone on work travel. That night I watched Rudolph. I wanted the good feelings it brings. The emotions were extreme: the wonderfulness of Christmas shared with children and my own heartbreak of no grandchildren to share it with. I moved between irrepressible smiles of joy and scalding tears of emptiness. The extremity of it scared me, but I was happy that I gave myself the opportunity to feel the joy.
Later that evening I read some of my old journals and felt my connection to Spirit renewed. When I read some of the amazing "conversations" between me and Spirit, I can't imagine how I end up going through these dry spells.
But actually, Spirit reminded me in those posts that the life of illusion we live here has little to do with our Soul connection to All That IS. That connection is never broken, no matter the crazy situations we put ourselves in here. No matter how little we see ourselves, how horrible we think we are, God knows differently. And Spirit is with us always, through all those places. We are beloved, regardless, and should act from that, giving no heed to the obscure human characters we have made ourselves to be.
Patrick and I talked for hours the next day... we drive the rest of the family crazy with the length and depth of our philosophical and spiritual discussions. But we enjoy it. He helped bring back the hope, the joy, and the ability to see myself as something other than just my shortcomings. Having him here is a real blessing.
That's just part of my week. There's more, but I've been too long already... As I said, this much activity is a lot for me! Yes, it's been a roller-coaster, but having things to do and people to talk to has felt wonderful. Handling it fairly well gives me hope that maybe (maybe) I can handle more. It scares me to be out here, and it scares me to tell people that I'm moving again. I'm afraid I'll fall back and retreat again, and I'm afraid that people won't have understanding if I do.
But I hope you will be encouraged, as I am, that Hope has returned, a little bit. There's always hope, they say.....
Saturday, November 14, 2009
My Story
This evening I tried to post "My Story" on the Bring Change 2 Mind website. I wasn't able to because it wouldn't let me "register" for some reason.
However, I did receive a nice comment from Miriam after posting on their message board there. So, I thought I would post here what I had written. The questions are those asked at Bring Change 2 Mind.
When did you know you had a mental illness?
I never knew that I had a mental "illness". I never saw my issues as an illness, but as a "flaw" within me. I was diagnosed with depression at age 30. For many many years thereafter I continued to work and raise a family, occasionally on medications, occasionally seeing psychiatrists, counselors, etc whenever my "inability to cope" with life became more than I could bare.
Often we are told that depression is temporary and linked to particular circumstances that are happening in your life; so we think that when the circumstances go away, or you are on meds for a while, the "problem" should be gone... And I often thought it was...
Only for episodes of major depression to occur again... Over the years I tried to educate myself and realized that I have had "Generalized Anxiety" and some social phobia all my life... I was afraid to walk to school, for instance, and dreaded it every day, even continuing through my High School years, but never told anyone. I always saw it as being afraid of life, and couldn't understand why I was....
At a particularly trying time in our life, I began to have panic attacks, and (I believe) suffered a "nervous breakdown". As with other times, when things got too bad, I would quit my job for a break and to recoup myself. When I felt well enough to "handle" things again, I would go back to work.
Eventually my once great resume now looked a mess, past employers told of my issues, and the work (and wages) I was able to get degraded.... Finally I asked my MD to put me on Disability and asked that he help me get permanent disability (as I now felt totally incapable of working, but couldn't leave my family without my salary). The MD refused (said he wasn't qualified) and sent me to a psychiatrist for evaluation and help... Actually, HE said he would give me a referral. His staff told me they "had none" for psychiatrists, acted very unhelpful, and left me to fend for myself in finding someone. I had the very strong impression from most everyone I encountered during these circumstances that they felt I was faking this in an attempt to stop working and get disability. Who the hell would want to?!
So I went to the psychiatrist with the determination to try to get Social Security Disability...
I was approved for Social Security Disability when he diagnosed me (for their purposes I guess) with PTSD (Post Traumatic Stress Disorder) because of the years of going through this...
How did you feel after you were diagnosed?
Making the decision to go on disability and "label myself" as disabled with a "mental" illness sent me into a deeper tailspin of depression. My self esteem and self worth were shattered - gone. I saw myself and my life as a failure... to me, to my family, to the world at large. I was (and still somewhat am) embarrassed that I have screwed up and wasted my life and my children's. I have now spent 7? years as a recluse and spend my time with any hobby that will keep the critical voices in my head at bay.
How has treatment helped you?
It took a year to get the Social Security. I was on meds and saw the psychiatrist until that time. After that I felt I could no longer afford the cost of the seeing him just to "chat"... I had given up on life, never mind the thought of any "recovery". Eventually I went off the meds also because of the cost, and because just staying at home I had little to stress me. So I haven't done treatment since receiving Social Security.
What is your message of hope for people like you?
I have no message of hope. I'm very glad, however, that people like you do. Your campaign, and the Minds on the Edge campaign have given me the voice to at least tell my story...
However, since my daughter was diagnosed with Schizophrenia, now Schizo-Affective Disorder, ten years ago and her illness is more recognized as a PHYSICAL brain disorder, some of the misunderstanding is a little better in our immediate family. So I guess that is hope... and a little movement forward.
However, I did receive a nice comment from Miriam after posting on their message board there. So, I thought I would post here what I had written. The questions are those asked at Bring Change 2 Mind.
When did you know you had a mental illness?
I never knew that I had a mental "illness". I never saw my issues as an illness, but as a "flaw" within me. I was diagnosed with depression at age 30. For many many years thereafter I continued to work and raise a family, occasionally on medications, occasionally seeing psychiatrists, counselors, etc whenever my "inability to cope" with life became more than I could bare.
Often we are told that depression is temporary and linked to particular circumstances that are happening in your life; so we think that when the circumstances go away, or you are on meds for a while, the "problem" should be gone... And I often thought it was...
Only for episodes of major depression to occur again... Over the years I tried to educate myself and realized that I have had "Generalized Anxiety" and some social phobia all my life... I was afraid to walk to school, for instance, and dreaded it every day, even continuing through my High School years, but never told anyone. I always saw it as being afraid of life, and couldn't understand why I was....
At a particularly trying time in our life, I began to have panic attacks, and (I believe) suffered a "nervous breakdown". As with other times, when things got too bad, I would quit my job for a break and to recoup myself. When I felt well enough to "handle" things again, I would go back to work.
Eventually my once great resume now looked a mess, past employers told of my issues, and the work (and wages) I was able to get degraded.... Finally I asked my MD to put me on Disability and asked that he help me get permanent disability (as I now felt totally incapable of working, but couldn't leave my family without my salary). The MD refused (said he wasn't qualified) and sent me to a psychiatrist for evaluation and help... Actually, HE said he would give me a referral. His staff told me they "had none" for psychiatrists, acted very unhelpful, and left me to fend for myself in finding someone. I had the very strong impression from most everyone I encountered during these circumstances that they felt I was faking this in an attempt to stop working and get disability. Who the hell would want to?!
So I went to the psychiatrist with the determination to try to get Social Security Disability...
I was approved for Social Security Disability when he diagnosed me (for their purposes I guess) with PTSD (Post Traumatic Stress Disorder) because of the years of going through this...
How did you feel after you were diagnosed?
Making the decision to go on disability and "label myself" as disabled with a "mental" illness sent me into a deeper tailspin of depression. My self esteem and self worth were shattered - gone. I saw myself and my life as a failure... to me, to my family, to the world at large. I was (and still somewhat am) embarrassed that I have screwed up and wasted my life and my children's. I have now spent 7? years as a recluse and spend my time with any hobby that will keep the critical voices in my head at bay.
How has treatment helped you?
It took a year to get the Social Security. I was on meds and saw the psychiatrist until that time. After that I felt I could no longer afford the cost of the seeing him just to "chat"... I had given up on life, never mind the thought of any "recovery". Eventually I went off the meds also because of the cost, and because just staying at home I had little to stress me. So I haven't done treatment since receiving Social Security.
What is your message of hope for people like you?
I have no message of hope. I'm very glad, however, that people like you do. Your campaign, and the Minds on the Edge campaign have given me the voice to at least tell my story...
However, since my daughter was diagnosed with Schizophrenia, now Schizo-Affective Disorder, ten years ago and her illness is more recognized as a PHYSICAL brain disorder, some of the misunderstanding is a little better in our immediate family. So I guess that is hope... and a little movement forward.
Thursday, November 12, 2009
I'm an ignorant voice
Amber Osterhout, blogger and artist of Gaining Insight posted info today on NAMI's "In Our Own Voice" campaign. This is a program where those in recovery give presentations to share their experience of recovery.
After reading it, insecurity enveloped me and my heart sank. I wondered, again, why I'm doing this blog, and if it serves any purpose.
The insecurity made me feel that I'm an ignorant voice in mental illness awareness advocacy. I am definitely NOT "in recovery" (which is quite evident, I'm sure, from my last post).
Some points from NAMI's page: "Anyone familiar with mental illness knows that recovery is not a singular event, but a multi-dimensional, multi-linear journey... Understanding recovery as having several dimensions makes its uneven course easier to accept. Ultimately, recovery is about attitude and making the effort."
I gave up the effort for myself a while ago. I'm not much of a role model for Beth when it comes to confident recovery.... and I'm probably opening myself up to much criticism by writing from the perspective of the "uneven course" in this blog.
But the uneven course is living with mental illness, living Life on the Edge. I guess what I'm hoping for is to continue to find opportunities for Beth along her journey. I understand that each person needs to take charge of their own healing and I can't do it for her. Actually she does quite well at the hard work of managing and dealing with her illness. But at the current moment she is at a bump in the road.
What we both have a hard time with is trusting people... obviously .... paranoia is a major issue in Beth's life... one of those "Catch 22's" that makes it difficult (at times impossible) to interact and work with people, to seek out and stay within an extended "support network".
And then there's the frustration of dealing with the support network, who don't have all the answers, and sometimes don't even have a good understanding. Caseworkers in the past have actually encouraged her NOT to tell anyone she has a mental illness - "They don't need to know". Doctors put her on meds that they know are responsible for major weight gain and then continually nag her that she is overweight, making it sound like she's not actively taking part or working hard enough at her recovery. They use losing weight as the "fix-all" to other issues she tries to address. "If you lost weight you'd feel better". They don't give encouraging voice to the fact that she goes out and walks every day regardless of the paranoid voices in her head and regardless of how dragged out she feels because of the med. They don't believe that she doesn't drink or do drugs, continually asking the question but never listening to the answer.
I'm hoping that my coming out - at least through this blog - will encourage Beth to try again to do the same, and to regain her faith in a "recovery" process.
The good news is there is progress. Beth says the new med the Nurse Practitioner put her on seems to be helping with the paranoia and delusions. There aren't any local support groups around here and so her social interaction is still online, with the general populace. I hope the difficulties of trying to fit in there don't lead to another down cycle.
I continue to tell her about the things I've found, the blogs, websites and initiatives to fight stigma and support those with mental illness... Maybe? she, herself, still doesn't want to be part of the stigma of mental illness? She doesn't seem all that interested.
It is a journey, an uneven course... and I as a Mother can't stop trying to help - even if it is in an ignorant way...
After reading it, insecurity enveloped me and my heart sank. I wondered, again, why I'm doing this blog, and if it serves any purpose.
The insecurity made me feel that I'm an ignorant voice in mental illness awareness advocacy. I am definitely NOT "in recovery" (which is quite evident, I'm sure, from my last post).
Some points from NAMI's page: "Anyone familiar with mental illness knows that recovery is not a singular event, but a multi-dimensional, multi-linear journey... Understanding recovery as having several dimensions makes its uneven course easier to accept. Ultimately, recovery is about attitude and making the effort."
I gave up the effort for myself a while ago. I'm not much of a role model for Beth when it comes to confident recovery.... and I'm probably opening myself up to much criticism by writing from the perspective of the "uneven course" in this blog.
But the uneven course is living with mental illness, living Life on the Edge. I guess what I'm hoping for is to continue to find opportunities for Beth along her journey. I understand that each person needs to take charge of their own healing and I can't do it for her. Actually she does quite well at the hard work of managing and dealing with her illness. But at the current moment she is at a bump in the road.
What we both have a hard time with is trusting people... obviously .... paranoia is a major issue in Beth's life... one of those "Catch 22's" that makes it difficult (at times impossible) to interact and work with people, to seek out and stay within an extended "support network".
And then there's the frustration of dealing with the support network, who don't have all the answers, and sometimes don't even have a good understanding. Caseworkers in the past have actually encouraged her NOT to tell anyone she has a mental illness - "They don't need to know". Doctors put her on meds that they know are responsible for major weight gain and then continually nag her that she is overweight, making it sound like she's not actively taking part or working hard enough at her recovery. They use losing weight as the "fix-all" to other issues she tries to address. "If you lost weight you'd feel better". They don't give encouraging voice to the fact that she goes out and walks every day regardless of the paranoid voices in her head and regardless of how dragged out she feels because of the med. They don't believe that she doesn't drink or do drugs, continually asking the question but never listening to the answer.
I'm hoping that my coming out - at least through this blog - will encourage Beth to try again to do the same, and to regain her faith in a "recovery" process.
The good news is there is progress. Beth says the new med the Nurse Practitioner put her on seems to be helping with the paranoia and delusions. There aren't any local support groups around here and so her social interaction is still online, with the general populace. I hope the difficulties of trying to fit in there don't lead to another down cycle.
I continue to tell her about the things I've found, the blogs, websites and initiatives to fight stigma and support those with mental illness... Maybe? she, herself, still doesn't want to be part of the stigma of mental illness? She doesn't seem all that interested.
It is a journey, an uneven course... and I as a Mother can't stop trying to help - even if it is in an ignorant way...
Should we fix it?
I'd like to say Thank You to those who've visited my blog and made comments both here and on the Minds on the Edge page on Facebook. I appreciate your thoughts, concerns, offers for help.
"Help" is part of what I'd like to address in this post. Also, to state again the intention of my blog. My blog is intended to let others know what it is like to live with "Mental Illness" and the struggles and frustrations that entails. It is intended to open the eyes of those unfamiliar with the struggle. It is not a cry for "help" on a personal level.
hmm.... I'm not getting my point across the way I want... I don't want to sound unappreciative of people's offers to help or their recommendations, and I would certainly never advocate that anyone not strive to move forward.
When I write of the frustrations of living with mental illness and the problems of the current "systems", I'm not doing so simply to criticize them. I'm doing it to call attention to the issues and the often "Catch 22" nature of the entrenched modes of thinking and doing things that make the systems ineffectual and keep things from changing for the better for all.
I'm not new to the mental health issues that concern my life, I'm just new to giving public voice to them. Depression has been part of my life since age 30 (20+ years), anxiety all my life, and Beth's Schizophrenia since she was age 20 (10 years now). We haven't exactly been sitting on our hands all this time, but we have ourselves perpetuated the Stigma - by not speaking out, by being ashamed, by ignoring and denying and by harboring the thought almost constantly that we needed to fix ourselves.
I feel the stigma of mental illness has kept us quiet, ashamed, and hiding because mental illness is often identified as an imperfection in the person ('there must be something wrong with him'). The voices we hear (real and imaginary) are very often critical voices - or interpreted as critical voices. It's important to be gentle - on both sides.
Unfortunately, it was what seemed to be the "go get help" voice/sound-bite that threw me into the tailspin of depression for the last few days. Again, please understand that intellectually I can rationalize that those words were not meant to be critical, but emotionally... I guess I can't... or couldn't, yet again, this time.
I have found over the years with Beth and myself, that sometimes no matter how hard we try, understanding the depth of the difficulty for the other can still escape us; we don't always understand just how hard the other is trying. Sometimes we don't allow that the fix might not work for them like it did for another, or maybe not at this time, given all the circumstances.
Maybe some things can't be fixed, and maybe some things don't need to be. They, and the person, just need to be accepted, as they are. To me, accepting the person, means erasing the negative connotations applied against that person because they have an illness. As others have said: We don't call a person with cancer "cancerous".
For example: I've spent 20 years going to Psychiatrists, Therapists, Counselors; on various medications; I've read (seems like) every self-help, spiritual philosophy, and each new "program" for "healing" my "emotional problems". I won't say I haven't learned from them, that my life is not better for them, or that I haven't gained from them. But when all is said and done, I am still here, as I am, anxious, reclusive, easily upset. The physicality of my issues affects me much more directly and quickly than it ever did... having progressed over the years. I accept that I'm probably not going to get "healed" of this, given the various circumstances of my particular life.
Depression is not "me" but it does affect many aspects of my life. The idea that you choose the thoughts and attitudes you have is not lost on me. 'Just change your mind.' 'Think positively'.
Once my son said he believed that I "liked" my depressive thoughts and emotions, and thus I perpetuate them. That idea is in itself very painful, has led to many guilt-ridden days and nights. The psychiatrist that Social Security sent me to for evaluation diagnosed me as a depressive personality. He gave the technical term, but my psychiatrist explained it as a person who always sees the glass half empty, it's just their natural attitude, and psychiatry does not normally treat for it. I took it as the first psychiatrist's way of siding with Social Security, to keep me out of it. But Social Security must have agreed with my psychiatrist's view of the illness as having progressed to Post Traumatic Stress Disorder after years of stress and crisis after crisis. Now there is a prevalent, predominant, physicality to it that cannot be denied.
Since the first diagnosis of depression at age 30, I have spent 20+ years trying to use my mind to change my mind: 'Think positively', 'Change my attitudes'. That takes a tremendous amount of time, focus, and work. Invariably I would end up in the depression cycle again.
It used to be that I was predominantly "happy", healthy, looking forward to life, enjoying my life. I walked through my days pretty much okay, until a crisis or difficulty imposed upon it. Either I didn't handle those crisis es well, or there were too many of them. Who knows?
Now I am predominantly "dull", unhealthy, have no belief in any future, accepting what is. Anxiety is triggered by very minor events, which is why I am so reclusive... less stimulus, interaction with others, less anxiety; there's safety in the corners of my home and little place else.
Major depressive events such as the last four days are fewer of course, there's less to trigger them. Maybe you could say I'm just terminally depressed. If you look forward to nothing and have no expectations, just waiting for the days to pass; you may have no life, but at least you're not riding the roller-coaster of extreme emotion.
Being in this state I don't have the physical strength (health) or consistent enough motivation or desire to change it. I used to 'push' myself, 'force' myself to try, to do. It's very tiring. Sometimes I still do that, when I absolutely have to for some reason. I see those reasons as few and far between now, or I feel I just don't have the capacity any longer. Now I accept it.
I don't look to "fix" me anymore, but accept me and my life as what it is. It doesn't really help me feel any better about "me", but it does keep the thoughts at bay, which allows the Peace I need. Peace is a wonderful thing.
"Help" is part of what I'd like to address in this post. Also, to state again the intention of my blog. My blog is intended to let others know what it is like to live with "Mental Illness" and the struggles and frustrations that entails. It is intended to open the eyes of those unfamiliar with the struggle. It is not a cry for "help" on a personal level.
hmm.... I'm not getting my point across the way I want... I don't want to sound unappreciative of people's offers to help or their recommendations, and I would certainly never advocate that anyone not strive to move forward.
When I write of the frustrations of living with mental illness and the problems of the current "systems", I'm not doing so simply to criticize them. I'm doing it to call attention to the issues and the often "Catch 22" nature of the entrenched modes of thinking and doing things that make the systems ineffectual and keep things from changing for the better for all.
I'm not new to the mental health issues that concern my life, I'm just new to giving public voice to them. Depression has been part of my life since age 30 (20+ years), anxiety all my life, and Beth's Schizophrenia since she was age 20 (10 years now). We haven't exactly been sitting on our hands all this time, but we have ourselves perpetuated the Stigma - by not speaking out, by being ashamed, by ignoring and denying and by harboring the thought almost constantly that we needed to fix ourselves.
I feel the stigma of mental illness has kept us quiet, ashamed, and hiding because mental illness is often identified as an imperfection in the person ('there must be something wrong with him'). The voices we hear (real and imaginary) are very often critical voices - or interpreted as critical voices. It's important to be gentle - on both sides.
Unfortunately, it was what seemed to be the "go get help" voice/sound-bite that threw me into the tailspin of depression for the last few days. Again, please understand that intellectually I can rationalize that those words were not meant to be critical, but emotionally... I guess I can't... or couldn't, yet again, this time.
I have found over the years with Beth and myself, that sometimes no matter how hard we try, understanding the depth of the difficulty for the other can still escape us; we don't always understand just how hard the other is trying. Sometimes we don't allow that the fix might not work for them like it did for another, or maybe not at this time, given all the circumstances.
Maybe some things can't be fixed, and maybe some things don't need to be. They, and the person, just need to be accepted, as they are. To me, accepting the person, means erasing the negative connotations applied against that person because they have an illness. As others have said: We don't call a person with cancer "cancerous".
For example: I've spent 20 years going to Psychiatrists, Therapists, Counselors; on various medications; I've read (seems like) every self-help, spiritual philosophy, and each new "program" for "healing" my "emotional problems". I won't say I haven't learned from them, that my life is not better for them, or that I haven't gained from them. But when all is said and done, I am still here, as I am, anxious, reclusive, easily upset. The physicality of my issues affects me much more directly and quickly than it ever did... having progressed over the years. I accept that I'm probably not going to get "healed" of this, given the various circumstances of my particular life.
Depression is not "me" but it does affect many aspects of my life. The idea that you choose the thoughts and attitudes you have is not lost on me. 'Just change your mind.' 'Think positively'.
Once my son said he believed that I "liked" my depressive thoughts and emotions, and thus I perpetuate them. That idea is in itself very painful, has led to many guilt-ridden days and nights. The psychiatrist that Social Security sent me to for evaluation diagnosed me as a depressive personality. He gave the technical term, but my psychiatrist explained it as a person who always sees the glass half empty, it's just their natural attitude, and psychiatry does not normally treat for it. I took it as the first psychiatrist's way of siding with Social Security, to keep me out of it. But Social Security must have agreed with my psychiatrist's view of the illness as having progressed to Post Traumatic Stress Disorder after years of stress and crisis after crisis. Now there is a prevalent, predominant, physicality to it that cannot be denied.
Since the first diagnosis of depression at age 30, I have spent 20+ years trying to use my mind to change my mind: 'Think positively', 'Change my attitudes'. That takes a tremendous amount of time, focus, and work. Invariably I would end up in the depression cycle again.
It used to be that I was predominantly "happy", healthy, looking forward to life, enjoying my life. I walked through my days pretty much okay, until a crisis or difficulty imposed upon it. Either I didn't handle those crisis es well, or there were too many of them. Who knows?
Now I am predominantly "dull", unhealthy, have no belief in any future, accepting what is. Anxiety is triggered by very minor events, which is why I am so reclusive... less stimulus, interaction with others, less anxiety; there's safety in the corners of my home and little place else.
Major depressive events such as the last four days are fewer of course, there's less to trigger them. Maybe you could say I'm just terminally depressed. If you look forward to nothing and have no expectations, just waiting for the days to pass; you may have no life, but at least you're not riding the roller-coaster of extreme emotion.
Being in this state I don't have the physical strength (health) or consistent enough motivation or desire to change it. I used to 'push' myself, 'force' myself to try, to do. It's very tiring. Sometimes I still do that, when I absolutely have to for some reason. I see those reasons as few and far between now, or I feel I just don't have the capacity any longer. Now I accept it.
I don't look to "fix" me anymore, but accept me and my life as what it is. It doesn't really help me feel any better about "me", but it does keep the thoughts at bay, which allows the Peace I need. Peace is a wonderful thing.
Sunday, November 1, 2009
Don't Give Up
It probably isn't good for me to write at night. I'm tired; emotionally and physically. So the writing probably tends to be a bit depressive. Actually I've been worrying tonight that my entire blog thus far is quite depressive, and who would want to read it?
But that's part of the point of this blog; to be real, to not force myself to speak from a positive attitude when that attitude just isn't there. Being "out in public" is something I've avoided for oh, about five years now. Actually most of my life... But the public I'm talking of now is putting this blog on the 'net. It's quite scary for me. It pushes my anxiety levels to new heights each time I make a new post, or do anything with the blog. Whatever... that's life for me.
Beth was reading a page describing the symptoms of various mental illnesses the other day on Bring Change 2 Mind. One of the symptoms of PTSD (Post Traumatic Stress Disorder) is avoiding people, places, experiences that are reminders of the traumatic event that made you ill. I guess I fit the bill on that one, as I rarely leave the house now.
Actually I have ALL the symptoms of PTSD. Probably that's why that was the primary diagnosis that put me on Social Security Disability. ha!
I guess they actually stretched it a little for me... The info on PTSD usually states that it is based on a single event that occurred. For me, it was many. Just life, little crisis after little crisis after little crisis until I crawled into a ball and hid myself away from life.
With PTSD, you become anxious even when there is nothing to fear. Even when you know there is nothing to fear. The hormones or whatever still kick in over nothing. So now that happens with me over things most people take for granted: walking to the mailbox to get the mail, jumping in the car to go upstreet, remembering and finding everything I wanted when I go shopping, choosing between items, meeting people, and oh my God! working things out when you have to cooperate with someone else! They all leave me in a panic. Mostly I have to force myself, cajole myself into doing them. Sometimes I just get tired of forcing myself, and sometimes I know I just can't, so I don't even try.
Anyway, the point here is: that is how it often feels to me when I try to write a new post in this blog. Making decisions, and then being okay with those decisions, is tough.
But, I'm doing it. I'm not giving up, totally, yet. I'm fighting my fear and I'm writing this post and I'm not going to let the worry that no one is reading them, or the worry that someone is reading them, deter me. At least not tonight.
You can find the full list of symptoms for PTSD on the Learn the Facts page of Bring Change 2 Mind. You'll also find info there on Fact vs Fiction of mental illness, as well as the symptoms of Bipolar, Schizophrenia, and Depression.
But that's part of the point of this blog; to be real, to not force myself to speak from a positive attitude when that attitude just isn't there. Being "out in public" is something I've avoided for oh, about five years now. Actually most of my life... But the public I'm talking of now is putting this blog on the 'net. It's quite scary for me. It pushes my anxiety levels to new heights each time I make a new post, or do anything with the blog. Whatever... that's life for me.
Beth was reading a page describing the symptoms of various mental illnesses the other day on Bring Change 2 Mind. One of the symptoms of PTSD (Post Traumatic Stress Disorder) is avoiding people, places, experiences that are reminders of the traumatic event that made you ill. I guess I fit the bill on that one, as I rarely leave the house now.
Actually I have ALL the symptoms of PTSD. Probably that's why that was the primary diagnosis that put me on Social Security Disability. ha!
I guess they actually stretched it a little for me... The info on PTSD usually states that it is based on a single event that occurred. For me, it was many. Just life, little crisis after little crisis after little crisis until I crawled into a ball and hid myself away from life.
With PTSD, you become anxious even when there is nothing to fear. Even when you know there is nothing to fear. The hormones or whatever still kick in over nothing. So now that happens with me over things most people take for granted: walking to the mailbox to get the mail, jumping in the car to go upstreet, remembering and finding everything I wanted when I go shopping, choosing between items, meeting people, and oh my God! working things out when you have to cooperate with someone else! They all leave me in a panic. Mostly I have to force myself, cajole myself into doing them. Sometimes I just get tired of forcing myself, and sometimes I know I just can't, so I don't even try.
Anyway, the point here is: that is how it often feels to me when I try to write a new post in this blog. Making decisions, and then being okay with those decisions, is tough.
But, I'm doing it. I'm not giving up, totally, yet. I'm fighting my fear and I'm writing this post and I'm not going to let the worry that no one is reading them, or the worry that someone is reading them, deter me. At least not tonight.
You can find the full list of symptoms for PTSD on the Learn the Facts page of Bring Change 2 Mind. You'll also find info there on Fact vs Fiction of mental illness, as well as the symptoms of Bipolar, Schizophrenia, and Depression.
Thursday, October 29, 2009
Who Cares?
When my children were infants I changed their diapers, cradled them, and fed them at my breast. When Patrick broke his wrist, Beth placed her hand fully on a burning wood stove, and Neil broke a front tooth straight off, I jumped to the emergency and saw them through to recovery.
Now that my daughter is an adult and I am sick with depression, anxiety and despondency; how do I help my beautiful girl who is crying out for help, who lives with emotional pain, fear, and turmoil every day. Tonight my depression is taking its toil on me. I'm tired. I'm sick with worry. I hurt that the recent efforts I have tried to make have led nowhere.
I don't have the strength or courage to be an active public advocate in the community all by myself. Beth doesn't have the ability because of her condition. At the moment she is reclusive; shying away from all social and public interaction because her symptoms are dominating every waking moment. Her sporadic sleep patterns add to the problem.
Yesterday we tried to go shopping. "They" were everywhere... strangers in the store making sharp comments aimed at her, the music on the store system specific to her past unhappy experiences, bumper stickers and license plates all "planted" by "them" to hurt her and let her know they were watching, judging, and enjoying their power over her. The paranoid delusion of a network of people conspiring against her, enjoying the living hell they making of her life. Will medication ever make that one go away? Is my beautiful child, now a lovely woman that no one any longer sees, doomed to live this nightmare the rest of her life, alone?
This morning she came over crying, asking me to take her to her scheduled mental health appointment, as she wasn't strong enough to make the drive herself, or go into the drug store to get the next new medication that the Nurse Practitioner hopes might help. It takes time to see if the new med will work, so her next appointment is scheduled for a month away.
As I started to write this post I was crying... working out the words makes that issue come and go... I was crying because no one has read this blog. No one has watched the "Minds on the Edge" video or gone to their website, though I post and post to my Facebook page links and info and ask and ask.
Who cares about the mentally ill? Apparently no one. There are no pink ribbons, no concern over the fact that my daughter is in extreme need of compassion, caring, and support; no uproar over the fact that services to assist her and others like her as so limited; no charitable giving of heart, mind or dollars anywhere.
How do you engage them?
Helpless... I'm helpless and ineffectual as a Mother now, the one that she should be able to depend on. I'm all she has and I'm not up to the task, or getting it done. From my sense of worthlessness I wait and hope for the day that my life is over. From my sense of responsibility and love for my child I pray for some help, some strength and courage for us both, for the determination to go on, and hope that maybe somehow, some way, some day it might get better.
And the cycle of mental illness goes on and on.....
Now that my daughter is an adult and I am sick with depression, anxiety and despondency; how do I help my beautiful girl who is crying out for help, who lives with emotional pain, fear, and turmoil every day. Tonight my depression is taking its toil on me. I'm tired. I'm sick with worry. I hurt that the recent efforts I have tried to make have led nowhere.
I don't have the strength or courage to be an active public advocate in the community all by myself. Beth doesn't have the ability because of her condition. At the moment she is reclusive; shying away from all social and public interaction because her symptoms are dominating every waking moment. Her sporadic sleep patterns add to the problem.
Yesterday we tried to go shopping. "They" were everywhere... strangers in the store making sharp comments aimed at her, the music on the store system specific to her past unhappy experiences, bumper stickers and license plates all "planted" by "them" to hurt her and let her know they were watching, judging, and enjoying their power over her. The paranoid delusion of a network of people conspiring against her, enjoying the living hell they making of her life. Will medication ever make that one go away? Is my beautiful child, now a lovely woman that no one any longer sees, doomed to live this nightmare the rest of her life, alone?
This morning she came over crying, asking me to take her to her scheduled mental health appointment, as she wasn't strong enough to make the drive herself, or go into the drug store to get the next new medication that the Nurse Practitioner hopes might help. It takes time to see if the new med will work, so her next appointment is scheduled for a month away.
As I started to write this post I was crying... working out the words makes that issue come and go... I was crying because no one has read this blog. No one has watched the "Minds on the Edge" video or gone to their website, though I post and post to my Facebook page links and info and ask and ask.
Who cares about the mentally ill? Apparently no one. There are no pink ribbons, no concern over the fact that my daughter is in extreme need of compassion, caring, and support; no uproar over the fact that services to assist her and others like her as so limited; no charitable giving of heart, mind or dollars anywhere.
How do you engage them?
Helpless... I'm helpless and ineffectual as a Mother now, the one that she should be able to depend on. I'm all she has and I'm not up to the task, or getting it done. From my sense of worthlessness I wait and hope for the day that my life is over. From my sense of responsibility and love for my child I pray for some help, some strength and courage for us both, for the determination to go on, and hope that maybe somehow, some way, some day it might get better.
And the cycle of mental illness goes on and on.....
Thursday, October 15, 2009
Motivation, Apathy, and Fear
A bunch of things having been going through my mind the last couple days. So, I guess this post will be a mishmash of them. My emotional state has been one of sadness and worry, and trying to push myself through the tiredness and apathy.
First, I want to say that I appreciate the Doctors, Nurses, Case Managers and all caregivers in the Medical and Mental Health Networks. My last post was about the ineffectiveness of the "system" but that should not be misconstrued as against the wonderful people who work within it. In many cases these organizations and people are non-profits or State run. Funding from the Federal level is miniscule and "entitlement" programs are the first to be cut. When the burden falls to the State, as with Medicaid and the States are in trouble (as they are now)..... It all leads to the programs being notoriously underfunded and understaffed; the people working with little at very low pay.
When you consider where to put your charitable contributions, please consider non-profit mental health providers and support systems.
Something else that is bothering me is having given so much detail (or even talking at all) about Beth's issues in this blog. She is a grown woman and putting the concerns of her life out there leaves me conflicted. How do you erase stigma and the problems of the mental health system without talking about them? It is probably more appropriate for me to speak of my issues here, but our lives are interwoven, of course, and my day to day emotional issues are caught up in hers.
It's taken me (what?) 3 or 4 days to get back here to post again. As usual with me, the initial excitement of the "Minds on the Edge" program gave way fear, insecurity, and doubt.... all the reasons why I can't, shouldn't, or don't want to be involved with anything.
Since I made the decision to go on Social Security Disability because of my mental health issues a few years ago, I have just given up on life. The motivation to do anything lasts little more than 5 minutes. The label of "Disabled" because of mental illness threw me into an even deeper depression of the worthlessness of me and my life. My mind was constantly filled with the failures of my life. Since that time, my daily chore has been to find ways to silence those voices and find things that could make me believe in myself and life again.
I suppose I haven't done very well with that either. To stop the negative and critical voices I find past-times that use my mind in other ways; things that others might consider wasted time, I suppose. I work jigsaw puzzles, play games on the computer, and do what I can around the house.
I've tried to look at my own health issues: years of smoking, lack of exercise, and unhealthy eating habits that have compounded to being overweight, unable to breathe, and the inability to do much of anything physically - walking through the grocery store leaves me short of breath and exhausted.
My embarrassment over it all has made me a recluse. On a day to day, person to person, basis I have only my husband and sometimes Beth and the boys. A few times I've joined online communities but oftentimes those relationships feel anything but "real" or too far removed from my day to day reality.
At the moment, I'm back on Facebook after my son asked me to join so we could share pics, etc. And I'm blogging here, hoping to (what?) offer some insight, I guess, to those who don't know about mental illness; hoping to increase the world's empathy rather than its apathy.
I don't know how much time I have left and I don't know how effectively I will use that time. Like all mothers, a major concern of my life is for the quality of Beth's life, now and when I'm gone. And so, I'm doing what I can, here, and praying it's the right thing to do.
First, I want to say that I appreciate the Doctors, Nurses, Case Managers and all caregivers in the Medical and Mental Health Networks. My last post was about the ineffectiveness of the "system" but that should not be misconstrued as against the wonderful people who work within it. In many cases these organizations and people are non-profits or State run. Funding from the Federal level is miniscule and "entitlement" programs are the first to be cut. When the burden falls to the State, as with Medicaid and the States are in trouble (as they are now)..... It all leads to the programs being notoriously underfunded and understaffed; the people working with little at very low pay.
When you consider where to put your charitable contributions, please consider non-profit mental health providers and support systems.
Something else that is bothering me is having given so much detail (or even talking at all) about Beth's issues in this blog. She is a grown woman and putting the concerns of her life out there leaves me conflicted. How do you erase stigma and the problems of the mental health system without talking about them? It is probably more appropriate for me to speak of my issues here, but our lives are interwoven, of course, and my day to day emotional issues are caught up in hers.
It's taken me (what?) 3 or 4 days to get back here to post again. As usual with me, the initial excitement of the "Minds on the Edge" program gave way fear, insecurity, and doubt.... all the reasons why I can't, shouldn't, or don't want to be involved with anything.
Since I made the decision to go on Social Security Disability because of my mental health issues a few years ago, I have just given up on life. The motivation to do anything lasts little more than 5 minutes. The label of "Disabled" because of mental illness threw me into an even deeper depression of the worthlessness of me and my life. My mind was constantly filled with the failures of my life. Since that time, my daily chore has been to find ways to silence those voices and find things that could make me believe in myself and life again.
I suppose I haven't done very well with that either. To stop the negative and critical voices I find past-times that use my mind in other ways; things that others might consider wasted time, I suppose. I work jigsaw puzzles, play games on the computer, and do what I can around the house.
I've tried to look at my own health issues: years of smoking, lack of exercise, and unhealthy eating habits that have compounded to being overweight, unable to breathe, and the inability to do much of anything physically - walking through the grocery store leaves me short of breath and exhausted.
My embarrassment over it all has made me a recluse. On a day to day, person to person, basis I have only my husband and sometimes Beth and the boys. A few times I've joined online communities but oftentimes those relationships feel anything but "real" or too far removed from my day to day reality.
At the moment, I'm back on Facebook after my son asked me to join so we could share pics, etc. And I'm blogging here, hoping to (what?) offer some insight, I guess, to those who don't know about mental illness; hoping to increase the world's empathy rather than its apathy.
I don't know how much time I have left and I don't know how effectively I will use that time. Like all mothers, a major concern of my life is for the quality of Beth's life, now and when I'm gone. And so, I'm doing what I can, here, and praying it's the right thing to do.
Thursday, October 8, 2009
"Emergency" Treatment for Mental Illness?
This post is the week in review with regard to my beautiful daughter Beth, who has Schizo-affective disorder. She also ended up at the Emergency Room last week, but unlike Frank (see my last post) the immediate "treatment" she received was very ineffective and close to non-existant.
Beth will be 30 in November. We've been dealing with her illness since just before she turned 21, not all that successfully. Part of the reason for this blog is to let people know how the "systems" currently in place for those with mental illness operate.
I've decided to "come out" about mental illness in this blog after watching "Minds on the Edge". Please see my first blog entry for info on that. For these nine years I've rarely publicly talked about Beth's illness - mostly because part of how I've tried to support her through it is not to do anything to increase her fear. Schizophrenia is an illness of fear and distrust of others - the "fight or flight" zappers in your brain are firing overtime, sometimes non-stop, at outrageous, uncontrollable levels and the panic is tremendous. These 9 years have been about trying to reduce that and certainly not increase it in any way.
Meds help (when you get them right) but potential "triggers" are always there in every day, routine things. The triggers are different for everyone. Sometimes it takes a while to learn them, especially with a normally quiet person like Beth, who doesn't often vocalize what's going on in her head.
Beth moved here with us a few months ago, after a relationship didn't work out. She's been in her own apartment, lived with boyfriends, and lived with us off and on a few times over the years. All the moves meant a change each time in health care places and people, making managing her illness and getting her meds right all the more difficult. Each place and person had a different idea of what meds and support systems to try and the ways and hows of what Beth "should" be doing to help herself.
So, this move has meant another change of Doctor and meds. Each time the meds change the transition can (and has) moved her backwards in living life with any semblance of happiness.
We're all stressed at the moment. Beth is moving into a new apartment along with the med change, Frank was hospitalized this week (see my last post) and I'm pretty much always stressed with anxiety. Stress greatly increases symptoms!
One of Beth's symptoms is "auditory hallucinations". She hears people saying things about her. This happens wherever she goes, making it difficult for her to leave the house. A person who passes her on the street, the couple sitting four tables away in a restaurant, other shoppers in a store all have nasty comments to make about her. Perhaps its her weight, what she's wearing, or could even be as awful as calling her a whore or telling her not to bother to seek treatment because she's not worth it anyway.
Reasoning this away does not work. It doesn't matter that people are sitting too far away to have possibly heard them. It doesn't matter that if a comment or conversation was real, it wasn't necessarily directed at her. It doesn't matter that I or others didn't hear it.
Beth heard it. And having heard it, it is real to her. If you know you heard something, would you believe people trying to tell you you didn't? Would you continue to trust them when they tell you things aren't happening that you did experience?
Now please understand that this is a physical condition. It is not "all in their mind". If it weren't physical, medications wouldn't help it. Meds do help it, at the very least to lessen the number of instances and their degree. But stress and med changes (waiting for a new med to "get to its right level") can make it go the other way again, with almost constant occurences and awful consequences.
For Beth, this condition has never totally gone away. At times it has been managible and she has learned ways to cope with it. But not this week.
This week the neighbors have decided she is a slut and a whore. This week the neighbors are constantly talking directly at her, swearing at her, saying these things to her. They have even gone so far as to have come in to our house at some point and placed speakers to insure that she will hear the horrible things they have to say about her. They tell her they hate her and that she might as well die. They come out on their porch to say these things, they turn their lights on and off throughout their house to confirm that they are messing with her mind (because they can and they enjoy it).
So, last Monday this reached a peak. The voices in her head were constant, continual, swirling and screaming, non-stop. They were purposefully abusing her, and she was going to fight back. And fight she did; trashing her room, throwing things around, breaking the window blinds as she screamed back out the window at them to "go to hell, she hated them". She wouldn't stop for me. She kicked and punched the walls, the floor, anything within reach.
I called Emergency Services. With a call-back ten minutes later (you have to wait for whomever's "on call" to get back to you), the lady was able to calm Beth and talk her down. After that she laid on her bed, eyes wide open, very clearly on high alert, but at least not physically acting out.
During the calm and cohesive moments, Beth understands and agrees that her meds aren't working very effectively right now. She works hard to distract herself with the few things she enjoys (drawing), she reads the books recommended to help her cope, and writes in her journal to work it out. But she is so frustrated and disappointed with the mental health system and their seeming inability to understand the degree of pain she is in. The "system" is: Pain or not, she is told she must wait, "see how these meds work", maybe change them yet again if they don't , and all the while learn to cope and work through these things by herself.
Isolation is a big one. No one wants to be friends with a "crazy person".
We talked. She wants to be hospitalized because of her degree of anger and frustration. Her hostility is scaring me and her. She knows it. She fears she may do something to get back at the neighbors and "get herself arrested". "Can't they just hospitalize her for a few days to get her med levels right?"
A few hours later and the voices are back again, threatening a re-occurence. We call Emergency Services again. After hearing that she may do something that will get her arrested, they agree to meet her at the ER and see what can be done.
When we arrive, there are two police officers in the waiting room. In the exam room, the Doctor asks her "what she wants to be done". We wait an hour for the Mental Health "on-call" person to arrive and "evaluate" her.
Now I ask you: If you go to the ER with a bloody nose or broken arm, do they send the Police? Does the Doctor ask you what needs to be done? Do they act like they don't know what to do? Do they wait for a person with schooling of a 9 month Certificate (or less) to decide what that might be?
The Mental Health person arrived, talked with Beth, and "formulated a plan". Beth asked to be hospitalized for a couple days to work with the meds. That couldn't happen at this hospital. There were only two facilities in the entire State for hospitalization. One was full, (only had two beds), and both were at least an hour and a half away. Beth decided that, given the stress I was under with Frank, etc, she wouldn't ask me to make that drive back and forth.
So they sent her home with a sleeping pill, told her to call a counselor, and said they would have her Doctor (actually a Nurse Practioner) call her tomorrow.
When you have a mental health crisis, who do you turn to? Don't expect much from the Medical Community. They still haven't learned that mental health issues are physical.
To experience what it is like to "hear voices" visit Amber Osterhout's website: Gaining Insight. Amber has created a wonderful series of paintings that depict the stages of schizophrenia. Listen to the audio that accompanies the painting entitled psychosis. Then please do check out the rest of the paintings, and Amber's entire site.
Beth will be 30 in November. We've been dealing with her illness since just before she turned 21, not all that successfully. Part of the reason for this blog is to let people know how the "systems" currently in place for those with mental illness operate.
I've decided to "come out" about mental illness in this blog after watching "Minds on the Edge". Please see my first blog entry for info on that. For these nine years I've rarely publicly talked about Beth's illness - mostly because part of how I've tried to support her through it is not to do anything to increase her fear. Schizophrenia is an illness of fear and distrust of others - the "fight or flight" zappers in your brain are firing overtime, sometimes non-stop, at outrageous, uncontrollable levels and the panic is tremendous. These 9 years have been about trying to reduce that and certainly not increase it in any way.
Meds help (when you get them right) but potential "triggers" are always there in every day, routine things. The triggers are different for everyone. Sometimes it takes a while to learn them, especially with a normally quiet person like Beth, who doesn't often vocalize what's going on in her head.
Beth moved here with us a few months ago, after a relationship didn't work out. She's been in her own apartment, lived with boyfriends, and lived with us off and on a few times over the years. All the moves meant a change each time in health care places and people, making managing her illness and getting her meds right all the more difficult. Each place and person had a different idea of what meds and support systems to try and the ways and hows of what Beth "should" be doing to help herself.
So, this move has meant another change of Doctor and meds. Each time the meds change the transition can (and has) moved her backwards in living life with any semblance of happiness.
We're all stressed at the moment. Beth is moving into a new apartment along with the med change, Frank was hospitalized this week (see my last post) and I'm pretty much always stressed with anxiety. Stress greatly increases symptoms!
One of Beth's symptoms is "auditory hallucinations". She hears people saying things about her. This happens wherever she goes, making it difficult for her to leave the house. A person who passes her on the street, the couple sitting four tables away in a restaurant, other shoppers in a store all have nasty comments to make about her. Perhaps its her weight, what she's wearing, or could even be as awful as calling her a whore or telling her not to bother to seek treatment because she's not worth it anyway.
Reasoning this away does not work. It doesn't matter that people are sitting too far away to have possibly heard them. It doesn't matter that if a comment or conversation was real, it wasn't necessarily directed at her. It doesn't matter that I or others didn't hear it.
Beth heard it. And having heard it, it is real to her. If you know you heard something, would you believe people trying to tell you you didn't? Would you continue to trust them when they tell you things aren't happening that you did experience?
Now please understand that this is a physical condition. It is not "all in their mind". If it weren't physical, medications wouldn't help it. Meds do help it, at the very least to lessen the number of instances and their degree. But stress and med changes (waiting for a new med to "get to its right level") can make it go the other way again, with almost constant occurences and awful consequences.
For Beth, this condition has never totally gone away. At times it has been managible and she has learned ways to cope with it. But not this week.
This week the neighbors have decided she is a slut and a whore. This week the neighbors are constantly talking directly at her, swearing at her, saying these things to her. They have even gone so far as to have come in to our house at some point and placed speakers to insure that she will hear the horrible things they have to say about her. They tell her they hate her and that she might as well die. They come out on their porch to say these things, they turn their lights on and off throughout their house to confirm that they are messing with her mind (because they can and they enjoy it).
So, last Monday this reached a peak. The voices in her head were constant, continual, swirling and screaming, non-stop. They were purposefully abusing her, and she was going to fight back. And fight she did; trashing her room, throwing things around, breaking the window blinds as she screamed back out the window at them to "go to hell, she hated them". She wouldn't stop for me. She kicked and punched the walls, the floor, anything within reach.
I called Emergency Services. With a call-back ten minutes later (you have to wait for whomever's "on call" to get back to you), the lady was able to calm Beth and talk her down. After that she laid on her bed, eyes wide open, very clearly on high alert, but at least not physically acting out.
During the calm and cohesive moments, Beth understands and agrees that her meds aren't working very effectively right now. She works hard to distract herself with the few things she enjoys (drawing), she reads the books recommended to help her cope, and writes in her journal to work it out. But she is so frustrated and disappointed with the mental health system and their seeming inability to understand the degree of pain she is in. The "system" is: Pain or not, she is told she must wait, "see how these meds work", maybe change them yet again if they don't , and all the while learn to cope and work through these things by herself.
Isolation is a big one. No one wants to be friends with a "crazy person".
We talked. She wants to be hospitalized because of her degree of anger and frustration. Her hostility is scaring me and her. She knows it. She fears she may do something to get back at the neighbors and "get herself arrested". "Can't they just hospitalize her for a few days to get her med levels right?"
A few hours later and the voices are back again, threatening a re-occurence. We call Emergency Services again. After hearing that she may do something that will get her arrested, they agree to meet her at the ER and see what can be done.
When we arrive, there are two police officers in the waiting room. In the exam room, the Doctor asks her "what she wants to be done". We wait an hour for the Mental Health "on-call" person to arrive and "evaluate" her.
Now I ask you: If you go to the ER with a bloody nose or broken arm, do they send the Police? Does the Doctor ask you what needs to be done? Do they act like they don't know what to do? Do they wait for a person with schooling of a 9 month Certificate (or less) to decide what that might be?
The Mental Health person arrived, talked with Beth, and "formulated a plan". Beth asked to be hospitalized for a couple days to work with the meds. That couldn't happen at this hospital. There were only two facilities in the entire State for hospitalization. One was full, (only had two beds), and both were at least an hour and a half away. Beth decided that, given the stress I was under with Frank, etc, she wouldn't ask me to make that drive back and forth.
So they sent her home with a sleeping pill, told her to call a counselor, and said they would have her Doctor (actually a Nurse Practioner) call her tomorrow.
When you have a mental health crisis, who do you turn to? Don't expect much from the Medical Community. They still haven't learned that mental health issues are physical.
To experience what it is like to "hear voices" visit Amber Osterhout's website: Gaining Insight. Amber has created a wonderful series of paintings that depict the stages of schizophrenia. Listen to the audio that accompanies the painting entitled psychosis. Then please do check out the rest of the paintings, and Amber's entire site.
Wednesday, October 7, 2009
Life on the Edge
I watched a show last night on a subject that has impacted my life for quite some time: Mental Illness. The show was titled: "Minds on the Edge". It can be seen on PBS stations or at their website: Mindsontheedge.org devoted to the subject.
I have "suffered" with debilitating anxiety and depression my entire life. My daughter was diagnosed with schizo-affective disorder nine years ago. The stigma of mental illness contributes to keeping me down and isolated. Fear for my daughter's pain from stigma is what has kept me quiet.
The slogan of the Minds on the Edge campaign is "If we can talk about mental illness, so can you". And so I have finally decided to. I am beginning by asking all who read this to watch the "Minds on the Edge" video. It's only an hour, but it clearly and easily explains so many of the horrid issues that folks with mental illness face and the deterrents to getting well that the "systems" of our country continue to operate from.
One major point that I would like to re-interate is that mental illness is an ILLNESS - a physical issue with the brain. There is much that needs to be done to enhance that understanding. Please begin to take part, and help save a huge population of our people who live life on the edge.
I have "suffered" with debilitating anxiety and depression my entire life. My daughter was diagnosed with schizo-affective disorder nine years ago. The stigma of mental illness contributes to keeping me down and isolated. Fear for my daughter's pain from stigma is what has kept me quiet.
The slogan of the Minds on the Edge campaign is "If we can talk about mental illness, so can you". And so I have finally decided to. I am beginning by asking all who read this to watch the "Minds on the Edge" video. It's only an hour, but it clearly and easily explains so many of the horrid issues that folks with mental illness face and the deterrents to getting well that the "systems" of our country continue to operate from.
One major point that I would like to re-interate is that mental illness is an ILLNESS - a physical issue with the brain. There is much that needs to be done to enhance that understanding. Please begin to take part, and help save a huge population of our people who live life on the edge.
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