When the good day arrives!

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One of the things I learned in a recovery workshop is to create new dreams after having your life interrupted with a psychiatric illness. I created a dream to become a mental health advocate, but I soon learned that creating a dream is one thing and living it is another.

I think my impatience is a result of having too much time on my hands. Not all days but some days a few hours of free time can feel like sitting in the dentist chair having my teeth pulled. When I am feeling good and overall having a good day I feel like I can accomplish so much more.  But on those bad days, like yesterday, I have no desire to do anything.

I wish I had a crystal ball that could tell me when the good days would bless me with their presence. I could be so productive if I had something of value to do. But what kind of job out there rewards people for having outstanding days periodically? There are so few that I have found I need to get creative and figure out a way to utilize my time more wisely.

Yesterday I read an article about a research project that NAMI conducted. It said that people with mental illness had an 80% unemployment rate in the United States. From everything I have read it seems that most other countries fall about in the same statistical ratio. So what does this say about mental illness and employment? The article does not address those of us who may be underemployed, which is an entirely different issue too.

What are we supposed to do when we have those good days?  I guess reading and writing is one way to spend time in a valuable manner. I just have to keep from getting too frustrated with myself because I recognize having too much time on my hands is not the best thing for my mental health. I am a goal directed individual and the more goals I can have for myself the better I feel.

The problem comes when I start wishing there was an immediate “feel good” solution for me on those days when I am far more capable of doing complex tasks.  These are the times when I focus hard on positive self-talk. It’s really easy to go down the path of “let’s beat up Amy today,” even though I know it is not a healthy thing to do. I may say something like, “If I tried harder I could accomplish more.” “I need to be more organized with my time.” Then I get all excited about having a new plan of action and I wake up the next day and getting out of bed may be the best I can accomplish.

This up and down road makes it a harder to check off the “to-do” list. It also makes it more difficult to have consistent approaches to various goals ultimately making it harder to have achievements. Certainly it is not impossible, just more difficult.

If I had one wish I would hope for more resources to be placed in helping those of us living with a mental illness to have working projects where we could utilize our skill sets. Maybe a collaborative writing project where we contributed to a group writing project. I don’t know the answer. I just know I need something I can feel good about.

Mental Illness Baggage and Coping

Serious Mental Illness Baggage

Serious mental illness-depression, bipolar disorder, schizophrenia, OCD-come with a great deal of baggage. It does not mean that people can’t recover and go on to lead healthy, happy and productive lives. What I mean is that if we aren’t careful those of us living with a SMI will start to have a collection of negative past experiences that when compounded make it difficult to deal with.

This collection of baggage is something that usually begins with the onset of illness. It can include a negative experience from a hospitalization or with providers, it can be with a pile up of personal and financial losses, it simply can be an interruption of everyday life as we once knew it. One of the problems with all these things is how we cope and deal with it affects our mental health and we are already dealing with illnesses that impact our mental wellness.

My Experience with Bipolar Depression

I have a major bipolar depression problem that I have been fighting since I was in high school. It has taken me years to finally understand how the symptoms of depression manifest in my brain. Only within the past year have I been able to identify the negative thought process that often comes from the Lies Depression Tells You. But the reason I bring this up is to say that having depression makes it even more difficult to deal with the baggage. Sometimes it is just flat out more difficult to cope.

How I Cope

I’ve spent a lot of time trying to understand how losses have affected me. It wasn’t until today that I read an article that stated how difficult job losses are that I realized the impact my job loss had on me. I took some time to let the article digest and then I did a little exercise where I wrote down on paper all the things that happened as a result of that job loss.

For some reason writing things down seem to help validate the importance of them. It also has a way of releasing some of the negative emotions that come from holding it all in. It’s a coping strategy I am using more and more everyday.

In a time when politicians are trying to figure out what kind of changes they should make to the mental health system, I just get stuck on one fact–serious mental illnesses are difficult to live with but the point is many of us are living with these illnesses. We might not all be working in high paying jobs but many of us are dealing with the everyday baggage that has been left on our doorstep while maintaining our responsibilities as parents, caregivers, employees and as independent adults.

My hope is that we collectively will continue to share our thoughts and feelings about mental illness and in that sharing we can continue to find a peace of mind. At the end of the day it’s not going to be any one thing that helps us manage, but a collective number of things we do to help us live our lives. After all we deserve to have a life too!

The Lies Depression Tells You

Depression is…

I have been blessed not to have many physical ailments, however, I feel like I have been “cursed” with depression (I know that’s not true). Depression is the kind of illness that makes any physical illness worse. It affects the mind, body and spirit and does so with a relentless grip that causes emotional torment. A therapist once told me, “Depression tells you lies Amy. You can’t believe those lies.”

Given you know how terrible depression really is what do we do to survive through the episodes? What are some ways we can get through the times we are sick? If depression lies to us then who can tell us the truth and will we listen when they do?

The Lies Depression Told Me

I recently just got well from another major bipolar disorder depressive episode. It lasted about 4 ½ months. It got worse before it got better and it took a medication change to help me begin to feel better. I had a few suicidal thoughts but nothing like I have had in the past. Mostly the thoughts that said, “You’re never going to recover. You’ll always be depressed.” I knew that was a flat out lie and I knew right away that I was dealing with the symptoms of depression.

I survived this last episode by recognizing the lies immediately. I called them what they were and it seemed to stop the endless torment that can happen. I began to think about other things and kept acknowledging what I was dealing with. I gave myself a break and stopped beating myself up for sleeping 14-15 hours a day. I believed I could trust my doctor to prescribe the right medication, at the right dosage that was going to help me. When hope ran away I ran after it.

Surviving A Depressive Episode

What also helps me is to research specific topics about depression. This works if I can concentrate long enough to read the article because sometimes my concentration goes by the way side when depressed. But I focused on doing a little bit at a time—read a little here—research a little there. I read anything to get some form of relief.

It helped me to seek out positive stories about people who had recovered. I liked learning their stories and allowed myself to be lifted up by their celebrations. I turned to the Depression and Bipolar Support Alliance and explored some of their resources. I even returned to one of the DBSA peer group meetings.

5 Helpful Strategies

In summary here are the strategies I used to help me survive my last depressive episode:

1)   Recognize the symptoms and don’t believe the lies

2)   Have patience and forgiveness for not being able to complete daily activities

3)   Look for positive examples of people who have recovered—it will provide HOPE

4)   Look to someone you trust to help you (maybe a physician)

5)   Believe things will get better—they always do!

 

 

The “Hearing Voices Simulator”

On Monday Anderson Cooper from CNN interviewed Mental Health Advocate and Clinical Psychologist Pat Deegan. Pat, who also lives with schizophrenia, created a “hearing voices” simulator that Anderson experimented with. For 45 minutes one day he wore the IPOD that cranked voices into his ears. As part of the experiment he had to do puzzles and a math quiz while wearing the ear buds. If you are interested you can watch the interview with Anderson Cooper and Pat Deegan on CNN. It was fascinating to hear how much difficulty he had trying to complete tasks and it even affected him while walking down the street.

Since I have experienced a few psychotic episodes as a result of bipolar mania I was really glad to know this simulation existed. It is one thing to try and explain what “hearing voices” is like and another to have someone deal with hearing voices. I hope more people will have access to the simulator; especially people in the media who tend to cover mental illness only when a tragedy occurs.

Even though I want the media to better understand mental illness I still contend that one of the best ways to combat stigma is for those of us who live with a mental illness to continue to speak out about our experiences. Sometimes I forget that I live with and write about mental illness everyday. I have been a student of bipolar illness for the past 30 years. Not necessarily by choice but by necessity. My point is the words and their definitions come relatively easy to me.

Speaking My Truth

About a month ago I was reminded that not everyone knows or understands what a person who lives with bipolar disorder goes through. I was giving an old friend of mine a ride to the airport and he ask me why I wasn’t working in the profession I had been in for 18 years. At first I hesitated and then I decided I was going to speak my truth.

I said, “Well I’m not working in the biotech industry anymore, because when I had a bipolar depressive episode the company I was working for fired me while I was on disability leave.”

Jim replied, “That’s terrible. If you were depressed it must have been more depressing to get fired in the middle of being sick.”

“Yeah it was pretty bad. Right around Christmas time too.”

Jim looked at me and then asked, “What is bipolar disorder anyhow?

“It’s an illness where you experience extreme highs and lows and sometimes psychosis,” I was giving him the shorthand version of the illness.

“What’s psychosis?”

“Psychosis is when you see or hear things that other people don’t see or hear. Or you may get delusional believing things that are otherwise not true.”

Jim looked at me kind of strangely and then said, “Well sorry for asking so many questions I guess I just don’t understand. I’m really trying to understand.”

I was really pleased he took an interest and was willing to have a dialogue about mental illness.   I assured him it was no problem and he could ask me anything he wanted about bipolar disorder.

We rode in an awkward silence for a few minutes and then moved on to a different subject. Even though I admit feeling somewhat anxious I felt really proud of myself for having the courage to be open and honest. I figured the worst that could happen is I would lose a friend, and I already knew how to deal with that.

So I am a big proponent of more people understanding mental illness and especially showing compassion to those of us who live with it everyday. I have always been an Anderson Cooper fan, but now I like him even more. I hope he continues to do more segments on mental illness. The more people talk about it the better chance we all have in breaking down the stigma barriers.

 

 

 

Mental Illness is no “gift!”

I have heard people say having bipolar disorder was a blessing as if the positive things about me had to be related to the illness. Mental illness is no gift. I don’t think I ever sat around after having a terrible cold and said, “What a wonderful gift that I was so sick.”

I recently read a blog by Natasha Tracy, which was titled Do the mentally ill have to be extraordinary to be accepted? She makes several points about how most people with mental illness are simply average, everyday folks trying to get along in this world. Not all of us are off the chart creative artists, famous world changing researchers or Nobel Peace Prize winners. We are simply “normal” people who happen to have a mental illness.

If you think about it, it’s kind of a shame that we have to put people on a pedestal to find some kind of acceptance. I think it falls right in there under the good ole’ stigma category. If we aren’t exceptional than what is our value in society, after all we have a mental illness. Oh my, so taboo.

It makes me sad to think about how common mental illness is and how we as a culture still fail to realize this fact. Consider that according to the National Institute of Mental Health over 57 million people suffer with a diagnosable mental illness each year. I’m sure you’ve seen the statistics–about 1 in 4 Americans have a mental illness.

Mental illness is common—yes. Mental illness is a gift—far from it.

I remember a day when I went to see a new family physician. She had known me from my days as a local “famous” athlete (from a very small town). When she found out I had bipolar disorder she said, “I knew there was a reason you could make the Olympic team. It must have been all that manic energy!”

I was so stunned I didn’t know what to say. How could someone who was a doctor actually think having bipolar disorder helped me to become an Olympian? Ridiculous. If anything I had to overcome the depressive episodes in order to get myself out of bed. The last thing I would have ever thought was “how lucky am I to have depression. It’s just so great! I can’t wait for more weight gain, so I can be slower on the court.”

I’m always amazed at how people find ways to accept they have a mental illness. It is not my place to judge others, but if I am voicing my own opinion I would be hard pressed to ever find any illness as a gift. I think of things like, suffering, symptoms, a lifetime of medication, doctor visits, therapy, significant losses, and I just shake my head knowing there is no way I could ever be grateful for having bipolar disorder.

I believe accepting yourself exactly how you are is far more important than getting on the band wagon to appreciate mental illness as a gift. I accept myself for who I am and I accept that I live with a mental illness and believe that I am no lesser of a person because of it.   It took me a long time to get to this point. But nowhere along the way did I ever pay some kind of tribute to living with a disease. It’s just not logical.

 

 

 

Striving for Remission

Every now and then I take a walk down memory lane and revisit some of my worst experiences in living with a mental illness. Usually I only do this if I need to retrieve this information for a specific purpose. In the most recent example it was because I was writing my story for Mental Health Talk.

The interesting things I found was that after years of wandering when I actually had the onset of bipolar disorder I realized that I had actually been living with the illness for as long as I could remember. It came out loud and clear when I wrote about my bed ridden depressive episodes and the way I can look at pictures over the years and pin point exactly the times I was suffering with depression. A weight gain here, a weight loss there…my body was showing the physical signs of depression and mania. When I was depressed I always went for more sweets and a lot of them. When I experienced mania I had little to no need to eat anything. The end result was a fluctuation on the scale.

It was like a light bulb went off in my brain. The vicious cycle of untreated bipolar disorder would rear its’ ugly head through isolating symptoms where you just don’t want to socialize or do anything with any friends because you are sick. Sometimes I knew I didn’t feel well and other times I just didn’t have a word or words I could put with what I was experiencing.

The writing has helped me immensely put into words my thoughts and feelings about how I have experienced bipolar disorder. It seems that when I am putting pen to paper I am giving a part of me a voice that has otherwise been silent all these years. In the past I didn’t have enough knowledge about my illness to know that the symptoms I was experiencing in fact were not normal. I guess I thought everyone needed to stay in bed beyond noon to feel well from time to time. I certainly thought most people could stay awake for a day or two and not feel badly! I didn’t know this is what you call mania. How was I supposed to automatically know something was wrong with me?

How do we know if we are struggling with a mental illness? In something fairly obvious like bipolar disorder it helps to have other people in your life that can point out the fact that something is wrong. It also helps to be open minded enough to listen to what they have to say. There have been times when I was in so much denial that even when I was told, “your sick,” I wasn’t going to listen anyhow.

Finally after 13 years of struggling with on again off again medications, I eventually found a treatment regimen that seems to be working well. Of course I am striving for complete symptom resolution and that may not be possible. But I would like to experience a long period of remission, if I can just get to that point I will be elated.

 

 

The Language of Mental Illness

When you finally get diagnosed with a mental illness (I say finally because it often takes a long time before people receive a proper diagnosis) you enter into a world with an entirely different language. If I did not know anything about mental illness I would be relieved to know I could do a “Google” search and try to figure out where I should start looking for reliable information about my diagnosis and the accompanying symptoms.

In 1984 my mother was diagnosed with manic-depressive disorder (now called bipolar disorder) during a crises situation and there was no such thing as the Internet to turn too look up words like psychosis. I had to physically go to the library so I could begin to understand what the doctors were talking about. I was only 19 years old at the time and I was scarred to death of leaving my mother in the hospital thinking it would be like “One Flew Over the Cuckoo’s Nest.” The scene that kept replaying in my mind was the psychiatric patient on the ward who was starring off into space without any connection to reality. “Was this going to happen to my mother?” I thought. The doctor did not take my hand and say, “It’s going to be alright. I understand you are afraid.” Instead he told me to pull myself together and convince my mother to sign voluntary commitment papers. “What is that for?” I ask the doctor and he replied, “To keep her from going to the state mental institution.” I don’t think it ever entered his mind that I had no idea what all these words meant nor the implications behind them.

Even with the best access to resources today it is still very difficult to understand some of these definitions. We are given a “label” and that is often a relief, but then what? Do we automatically understand the signs and symptoms of our diagnosis? Do we have a good handle on what it will take to get well again? Do we even know if we are capable of getting well? What did the doctor explain to us when he or she gave us the diagnosis? Did they point us in the direction for more resources or hand us a patient education brochure?

Often times the answer to those questions become each individuals’ journey on the mental health road to healing and/or hell depending on how you look at it. In my experience it takes a very long time, even years, to grasp the complicated nature of bipolar disorder. Many times it is only with a retrospective look back into the past where we can start identifying specific behavior and patterns that we now understand as being part of a manic or depressive episode. We might not know that the negative self-talk we hear often stems from a depressive episode. It might be hidden as “seeing the glass half-full” when really the glass isn’t even involved in our thought process instead it’s the depression doing the talking.

A lot of times I have heard people say that I liked the “manic” highs and therefore that is why I didn’t take my medication as prescribed. For some people that may be true, but for me I didn’t even understand what my manic high looked like, let alone try to have more of it. It took me years to realize and identify how to recognize the difference between mania and feeling good. After years of suffering with an undertreated condition I had to learn when my mood was actually normal. When I understood “normal,” I could find relief knowing that I wasn’t on the verge of another dangerous episode.

After sitting here for a moment I realized that even reading this blog one would have to have a basic understanding of mental illness or a willingness to learn about the subject. But even my choice of words indicates I have been using the language for quite a while. I am familiar with much of the mental health vernacular.

In my research I have found an interesting statistic. Did you know it often takes the average bipolar patient 10 years to find the proper treatment and that is after a diagnosis? For some people how can you tell the difference between manic grandiosity and arrogance? How easy is it to blame continual crying jags on losing your job? The fine line between normal reactions to external stimuli and those that are not normal behaviors or actions becomes increasingly cloudy when you are trying to decipher what exactly is “normal,” and how do these disease descriptors apply to me or someone I love?

We are more fortunate today that we do have the Internet for researching information and finding a wealth of knowledge about our diagnosis. The key is learning to look at credible sources and recognizing that it takes more than a definition to understand complex disorders. It truly is a language all to its own and one that needs time and patience to learn and comprehend.