Film offers hope to those in pain

By Linda McIntosh
UNION-TRIBUNE TODAY'S LOCAL NEWS
December 6, 2006

Daneen Akers sold her house in Oceanside to make a film she hoped would help people like her mother.

Her mom has fibromyalgia, a chronic pain condition that left her bedridden for much of two years.

The documentary, called “Living with Fibromyalgia,” focuses on her mother and six others with the condition.

“It's about being open to different ways to cope. The message is don't give up,” Akers said.

That's a strong message coming from someone who saw her mother checking train schedules with dark thoughts of ending it all.

At first Akers' mother, Darlene Akers, 58, didn't know what she had.

“When you're bedridden and don't know what's wrong, you can't see the light at the end of the tunnel,” Darlene said.

All she knew was that she was in so much pain that she had to stay in bed, and even the weight of the bed sheet hurt. It was those dark days and her mother's eventual recovery that got Daneen thinking about making a film for other families facing the same situation and wondering what to do.

For Darlene, an Oceanside resident, it all started nine years ago when she tripped on wet pebbles and fell on her knee. It was the same day she finished her fastest five miles training for the Honolulu Marathon.

But after the fall, she couldn't get back on her feet.

“She was flat on her back or in a wheelchair, and we were scrambling to find out what was wrong,” Daneen said.

It was tough for Darlene, who was used to getting up at 4:30 a.m. to run or bike before starting work. Not knowing why the pain started made it even harder to take.

“It took awhile to believe my mom and find ways to help her. We were in the dark,” Daneen said.

Slowly, the family started collecting clues.

Three years after the fall, Darlene was diagnosed with fibromyalgia.

“It's a disorder of the central nervous system, and stimuli don't get processed correctly,” Daneen said.

In 2004, seven years after her mother's fall, Daneen and her husband, Stephen Eyer, started filming the documentary in their San Francisco apartment.

“We wanted to share what we had learned so other families wouldn't be in the dark,” Daneen said.

Daneen is the film's narrator. She interviewed four fibromyalgia specialists from Cedars-Sinai Medical Center in Los Angeles and seven patients, including her mother and Lynne Matallana, president of the National Fibromyalgia Association.

“The film is empowering. It gives people credibility that they have a real illness and that others out there are dealing with it. It's not a death sentence,” said Darlene's husband, Dan Akers.

The documentary took more than two years to make. Daneen and her husband worked full time on the film for a year and a half and took part-time teaching jobs while finishing the movie.

Eyer teaches film and television, and Daneen teaches English at Pacific Union College in Northern California.

Toward the end of production, they hit a roadblock when Darlene took a turn for the worse.

“She hit the depths and we didn't want to leave people there,” Daneen said.

But her mother pulled through with considerable help from a little Tibetan spaniel named Leo.

Some days she just lay in bed and pet Leo.

“On bad days, he gave me a reason to get out of bed because he needed to go out for a walk,” Darlene said.

Since then Darlene has discovered ways to cope, such as meditation.

“My line is, 'I traded medication for meditation,' and that was something I would not have been open to before this happened to me,” Darlene said.

“Hearing these stories shows people with the same condition they're not alone. They can see what worked for others and that there's hope,” Daneen said.

The 72-minute film debuted last month at the Folino Theater at Chapman University in Orange County.

It is sold as a DVD on "http://www.livingwithfm.com,and a portion of the proceeds goes toward the National Fibromyalgia Association, "http://www.fmaware.org".

For more information about the film call Trillusion Media, (800) 724-9948, or todaneen@trillusion.org.


"Living with Fibromyalgia"

The DVD is available for $19.95 at a http://www.livingwithfm.com. Ten percent of proceeds goes toward the National Fibromyalgia Association, http://www.fmaware.org. For more information call Trillusion Media, (800) 724-9948, or go todaneen@trillusion.org

Source: http://tinyurl.com/y9v9cq

Slow Motion....

Well I am in my new unit now. Although I do not have everything put away in its place and I doubt that I will for at least a month. I just cannot get myself motivated and just do not have the stamina. There is still apart of me that feels like I am in this on my own.

For weeks now , no more like for several months now, I have been moving in slow motion in a sense and then again it feels like the rest of the world has been moving ahead in fast forward and leaving me behind..... I feel like I cannot catch up to anything in my life right now and have not felt like this for many years.

I still feel very reactive to my buttons being pushed, it is almost as though I have a sign across my forehead that says I am your dumb b*tch, push my buttons all you want, you know that you love to get a reaction out of me. You know it makes you feel more up there when you see that I am all upset and that you have succeeded at getting me to bow to your command, after all is that not what you want, is a woman that bows to her master as you put it. You have known since the first time that you met me, because of my mental illness I have a side of me that is very vulnerable and that it would not take much to break me. After all I got pushed quite a bit the week prior to moving and I nearly broke and felt liek I was going over the edge.

Another thing, my birthday is just 2 days away and I am going to be '46' years old. Where have the years gone to. God am I ever aging so fast.... I feel like I have missed so many years of my life. I don't really remember many of them. If I were to account for most of the years of my life it would take allot of thinking.... that will take another blogging..

As for anything special for my birthday, well I have no idea if my husband has anything special planned for my birthday. It would be nice if my mom would come over, but I know she feels a tad uncomfortable for reasons. So I really do not know how it will be celebrated, time will only tell...... but I do hope I will have some kind of a birthday...

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Moving

On May 2nd David and I received an email from the property managed of the building that we are living in that we have to move out of the unit that we are living in, which is a 2 bedroom accessible unit. I was first housed in this unit nearly 10 years ago, at which time, it was originally intended for both myself and my handicapped son to live in and unfortunately this never transpired. Therefore I have been on the internal waiting list for a relocation to a 1 bedroom , non-accessible unit. Unfortunately, we were really only given 1 week, with in which to pack things in the former unit and to move into the one we just moved into on May 21 (we were told that we were to be completely moved out of the former unit by no later than May 22). It is the first time in a very long time, I would say at least nearly 6 years since I have literally flipped. For 4 days last week, I was barely hanging by a thread, I was literally freaking out, this preparation for the move and actual move - mentally I was finding it way too overwhelming, I really felt like I was going to crash like major big time. David really had a difficult time handling my moods these 4 days, he was wondering if the move was really worth it, if he had to deal with my freaking out like this! I almost felt I had and/or was losing control.

My medication was adjusted like nearly 3 years ago, I feel almost reactive to allot of things as of late, my buttons are easily pushed here at home or by other people. As for being able to get to sleep, I have had no problems since moving, as I have been exhausted from the move, but if it were not for the move. I would say I have had great difficulty getting to sleep. The meds I am on now is 100 mg Topomax in the a.m. and at bedtime and 300 mg Seroquel at bedtime. Starting to wonder if I am developing an immunity to my meds. But I really do not want to change to anything else, as it is, Seroquel has made me gain an enormous amounts of weight, Topomax is suppose to make one lose weight, but I have not....

There is still so much to organize in my new place, just do not have the mental stamina to get things in place. I have my bedroom, kitchen and bathroom in order, but as for the livingroom, everything is pretty much in the middle of the livingroom in the way of tons of boxes. Entertainment Centre is set up where it should be and couch and dining table is too, just a bunch of boxes and etc right in middle of the living room floor, and tons of laundry to do. Know going to have get organized soon, as husband hates clutter.

Sometimes I just feel like life moves to damned fast....

Any way, just wanted to let everybody know where I am at this week.

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Will My Life As It Is .... Ever Be Easy

For the first time in many years, as of about 4 years ago, I really believed that I was being accepted for "who I am", my mental illness, my quirks, the complete package. My mental illness is quite obvious. There are allot of people in society today, who with medication, can live a perfectly normal life, and nobody will know that they have a mental illness. They are lucky enough to be on meds that will mask their mental illness. Unfortunate for myself, I have been pretty much resistant to just about every medication that I have been prescribed in the past 9 years or so, therefore my mental illness has not been masked; therefore it has been quite obvious to family, relatives and to society that I have a mental illness. It is almost as though it is written across my forehead "I have a mental illness", because without even saying anything, everybody already knows. Even worst, the family of the man that I married on January 20th, even shuns me because of my mental illness. It appears that all around I am not accepted for who I am, not even by my own flesh and blood - my sisters. The only ones that do accept me for the moment, is "my mom", "some my cousins" , "other individuals with mental illnesses", "of course mental health workers" and last but not least, some of the very few friends that I have.

My husband over the past 4 years that I have been with him, has made it quite clear that he does not 101% believe in the existence of mental illness. He has repeatedly said to me, that Psychiatrist and Doctors brainwash it into their patients minds enough that they have a mental illness and then their patients start to believe it; this is not the case with myself.

I do however wish that my husband was more believing of mental illness with myself. As it would make living with mental illness much easier for me on a day to day basis. Unfortunately, my mental illness has a tendency to affect my daily activities at times, so much so that I do not know up from down, and often throwing me into severe depressions for days at a time.

What I hate most, is people that know that I am vulnerable to the pushing of my buttons and they know just which buttons to push, to irritate me and to get me responsive and anger and they will be repititive at pushing my buttons, until they have succeeded at nearly pushing me over the edge. There is one line that my husband has been using with me since about the 2 year or so and that is "Bow to your master" or "Bow to your mansy" and he really thinks this is funny when he says this to me, I am sure that he does not literally mean for me to do this, but I feel when he says this, it brushes his ego a bit, for him to see that he can get me to react irrationally.

How do the Bipolar viewing audience of my blog handle when someone pushes your buttons?

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Psychiatrist - Medications

I am seriousily considerating over the next few months making an appt with my Pdoc, Dr. K. It has been at least since January the last time that I saw her. It may be time again to chat about the possibility of medication adjustment, but not a type of medication that is going to affect my thyroid to the extent that I am going to gain an enormous amount of weight.

My moods the past year appear to get easily destabilised by people, and my buttons are so easily pushed. I try to ignore what people say and/or let it go thru one ear and out the other. Often I hold it inside too and just wait for a moment that I can talk to somebody about what is bothering me about what was said and/or done to me.

There is only so much I can take when it comes to people picking on me and so much that I can ignore and/or hold in. I was doing so well the past year or so at holding things in, but not anymore....

I am starting to wonder if maybe I am developing an immunity to my medication, after all I have been on it for over 3 years. I am just so concerned about going on new Psych meds because of how it affects the weight. As it is, since I have been steadily on Psych meds I have gained over 40 lbs in 9 years. (difficult to take off).

As for others that read this blog, what types of mood stabilizers and anti-psychotics are you on that work for you and do they affect your weight? I am on Topomax and Seroquel. Would like to hear from others.

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Seeing My Social Worker Again

I am now back to seeing my Social Worker Josephine. It feels almost forever since the last time that I saw her and that was back in January. She told me that she came back to the office in March. I asked her why she did not get in touch with me then, she indicated that she had been busy.

It was nice seeing her.

I told Josephine that Mike my "Mental Health Helping" Partner has plans to discharge me from his caseload when he sees me in June. I told her that just the feeling of losing services thru Durham Mental Health Services, makes me feel really scared. Almost a feeling of loneliness. I have been so dependent on his services (nearly 5 years now). I have the feeling that Mike feels that I am "stable" in his own mind, because I am in a good mood every time that he sees me. I guess this could be because he does not see all that goes on at home sometimes, or maybe sub-consciously I hold allot in.

I know that "yes" I am probably more stable than I was 5 years and 9 years ago. But stable per se to the point that I do not need any other mental health services in order to remain a functioning part of society. I feel that if I lose Mike's services altogether that I might get lost some where or that I might one day crash and just the thought of the possibility of this happening , just the knowing of him dropping me from his case-load and knowing that I cannot just pick up the phone and call him - makes me feel sort of helpless.

I do understand that services when it comes to Mental Health are being cut all over. But I do know that the government also some where in Durham Region did give a sizeable amount of money into Mental Health. Could that be at the hospital?

Well, Josephine said that she is going to call and talk Mike. We will just have to wait and see. I would like to try and start going to his groups again. Just wish that ODSP would cover the costs of the groups. That is $20.00 a month... Oh well... they won't because his because DMHS groups are not covered by an Inter Disciplinary Team. I just got to remember each day of the week that goes by , in order to go to the groups though. I seem to sometimes lose and/or forget what day it is from day to day.

Will just have to wait for my appt with Mike June 2nd to come around and see what transpired with his conversation with Josephine.

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Listening For Voices In The Distance Darkness

There has been something going on with me in the past 6 months, but I have been very reluctant to make any mention of this to my Pdoc, as if I do, my Seroquel will be increased. (Seroquel is an anti-psychotic). She already increased it once by 150mg, I think this was 2 summers ago, I cannot remember. My husband and I were crossing one of the side streets where I live, (I was not necessarily not paying attention), but I was in that state where either my mind tended to wonder and/or it almost as though at that time I was being pushed. To get to the point, I stepped out into the street into oncoming traffice and my husband pulled me by the back of my shirt to prevent me from walking into oncoming traffic.

What has been happening with me in the past 6 months. When I go out on my own in the dark, I feel this need to listen for voices off in the distance (almost a feeling of paranoia), fear of something being at the next block - almost paralyzing feeling that someone might be around. So much so, that I now even when I go out at dark time with my husband, carry my keys in my hand. I still however feel forced to listen for voices off in the distance, to look around me for any shadows of anything nearby. (yah a little nervous walking in the nature trail and even when not alone)

Feelings and thoughts to keep to self, as do not want my Seroquel dosage increased again.


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Lack of Psychiatric Services For Children Under 16

Two days ago I happen to come across an article on the internet. It was about a young boy of about 9 years old with a very severe mental illness who happen to get a hold of a knife and premeditated going into school and stabbing a peer.

The really unfortunate thing here is that parents today do not have the necessary tools and/or training through parental work-shops to recognize when they might have a child in the family that is severely trouble mentally and emotionally, especially at such a tender age of below 16. Some Doctors today, just as much as when I was 16 are still very much reluctant to do assessments on young children below and to diagnose them with a mental illness, as they fear that it many be a hinder on their development stages. I personally feel that if more parents and/or Doctors showed an interest in working together to recognize different behavioral and mood patterns of young children under the ages of 16 today, that just maybe we might be able to prevent what I read in an online article. There needs to be more structure and discipline at home and when they children are away from home during the day time hours and at school the structure and discipline needs to be carried over and teachers and other staff need to be more aware as well of these young childrens behavioral patterns as well and attend to it immediately.

I also feel there needs to be more Psychological testings recommended by the school boards when there is recognized signs of the young child being even the slightest withdrawn/depressed/slightest violent behavior at this young age. If all of this is ignored and these young children are allowed to carry forth with their behavior as I read in this article, by the time they reach the age of 16 - I can be certain they will be standing before a Judge with some very serious charge.

I was quite disturbed by this article when I first read it, as this is a behavior that I had seen before in my own past as a young person by someone in a group home that I once lived in. There was absolutely no structure or supervision in this group home.

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