It’s Time to Ring the Bell

bell

This is a Mental Health Bell:  A Symbol of Hope – which was created in 1953 made of all the chains and shackles from mental asylums in the United States.  The bell is now the symbol of the oldest mental health advocacy group – Mental Health America.

I am a person who lives with bipolar illness and I am also an activist.  I desire to be a part of social change.

There is a movement in the world of mental health awareness.  More people are beginning to come forward and own their illness publicly.  Where you see the most of this happening is with social media.  There are many twitter accounts and blogs of people who live with mental illness advocating for change.  Expressing their viewpoints openly, honestly and courageously.

But what is the change we seek?

I am interested in bringing awareness of mental health conditions and eliminating stigma so people will not feel ashamed to seek help.  I don’t want to feel patronized or discriminated against because I have publicly declared I live with a mental illness.  I chose to share my personal struggle because I wanted to help participate in social change.  I want the young people I talk too to know you can live with a severe mental illness and still be successful.

But I have to tell you even in the places where you would think pure advocates would exists stigma flows well.  There is a term people use to describe those of us who live with a mental illness it is called “consumer.”  I don’t care for consumer because it implies that I am different from everyone else.  It rings with “less than” and sort of implies I am my diagnosis.  But the word is not going away anytime soon.  And neither are prevailing attitudes about people who live with a mental illness.

Change takes time

In 1909 the first Mental Health Advocacy organization was created by a man named Clifford Beers who lived with bipolar illness.  He was hospitalized for three years and was subjected to poor treatment at the hands of his caretakers.  At one point he was placed in a straight jacket for 21 days.  He was also a profound business person on Wallstreet and a Yale graduate.  A year after he was released from the institution he started a movement that helped change lives.

Now is the time

I have discovered that now is my time to ring that bell.  With so many courageous people who have lived before me to show the way on how to become an activist, I am up for the challenge.

The time is now to join the movement.  If you are reading this blog I want to encourage you to get involved in social change.  Join an advocacy group, write a blog, tweet, form a support group, use your voice and ring that bell!

“I decided to stand on my past and look my future in the face.”  ~Clifford Beers, Founder Mental Health America

 

 

 

 

Mental Illness A Family Disease

This past week I have come into contact with several people who have loved ones who are struggling with mental illness.  I can understand their pain because I have lived the experience myself.

I remember the day when I was 19 years old and found out my mother had almost died during a mental health crisis.  I had just arrived home from a rather tumultuous freshman year of college, my Olympic dreams nearly shattered and my mother, my biggest supporter unable to help me and in fact needed me to help her.

When someone you love has a mental health crisis you don’t have a lot of time to come up to speed on all the terminology that healthcare professionals start to throw around.  Psychosis, manic-depressive, schizophrenia, involuntary commitments, state hospital vs. private institution, etc..etc…etc.

We didn’t have the internet over thirty years ago, so I packed up my notebook and headed to the library.  (After all these years I have still kept my notes). I was on a crash course to understand a jargon that was foreign to me.  Cancer I understood.  Mental illness I could not comprehend and yet I had to find a way to help get my mother back again.

It was one of the most difficult times of my life.  People who do not have a loved one with mental illness cannot understand the enormous amount of pressure it is to keep secrets about why someone is or is not available.  In some ways it is like their lives get erased, if only temporarily.

For me in all my youthfulness, went about telling people that my mother had a mental breakdown.  Most often I got surprised and shocking looks and often a change in conversation because people did not know what to say.

The sad thing is here we are over 30 years later and things have not changed much.  We are still talking about the stigma of mental illness, our society continues to fear what they do not understand and people living with mental illness still live in secrecy and shame.  And those family members with loved ones still don’t have a basic understanding of mental illness.

The only way I know how to help with change is to talk about mental illness and continue to share my personal journey in the hopes it may help other people.  I dealt with my difficult situation the only way I knew how which was to talk about it.  It helped even if most people did not understand.

One of the most unsatisfying lessons has come full circle.  Someone who I had admired most disappointed me the most during my mother’s illness.  But sadly years later this person who showed no compassion would be struck with her own mental illness.

There is no mincing words:  mental illness is a cruel disease that affects the entire family.  The best thing we can do is be kind to one another.  You never know if your family will be affected by mental illness too.

More than a Label

Today I have reached a milestone in my recovery journey.  I no longer think of myself as mentally ill.  Oh yes, I still have to live with bipolar disorder and manage it, but I have been enjoying a period of sustainable wellness.  To be honest, I never thought this day would happen.

For several years I battled very severe depression with brief moments of manic episodes, but none that were ever enjoyable.  I fought countless days to function and wondered if I would ever become a contributing member of society again.  Well, the days have arrived.

In this recovery journey I have read numerous articles about people who got sick and then got well and moved on with their lives.  I could see it was possible, but I did not know if it would be possible for me.  But now here I am.

Because of where I have evolved too, I no longer feel the need to write about pain and sorrow.  I am not drawn to write about my past demons.  I am at peace with my past and so it shall stay there.

But what I hope to do is write about how I have recovered.  The ins and outs the ups and downs.  The journey has been nothing short of a miracle and at any time along the way I could have chosen to give up.  But…I didn’t.  That’s the biggest secret and it is obvious….you can’t give up no matter how tough it is and how much it hurts.  You must persevere and continue to expect a good outcome.

So I am beginning to live my newly created life.  Filled with dreams and possibilities and potential.  I have learned I am so much more than my diagnosis, I am truly beyond bipolar disorder.  Although there was a time in my life when it completely consumed me.  By the grace of God that time is over and that book has ended.

The new book has begun.

If you have a mental illness I want you to know that it is possible to get well.  You can have a satisfying life and contribute to your community.  Believe in the possibilities.  And most importantly don’t give up.  You may be very surprised how things turn out.

Coping with Bipolar Disorder

Some days are easier than others and that goes for those of us who live with a mental illness and for people who do not. But I tend to laser focus on those days when I have a hard time getting out of bed. The first thing I think is, “The depression is back. Guess the medication isn’t working anymore.”

One bad day doesn’t warrant calling out all the stops and naming the next depressive episode, does it?  After feeling depressed for so long and finally getting a bit of relief it stands to reason that I would be just a little paranoid over the down days. I simply don’t want them to string together into bad weeks and bad months, where the good days come infrequently.

How hard is it to live when you are constantly monitoring your moods? I feel a little like I am in a scientific project. I have my medications in one drawer, my mood chart in another, and my books pretty much everywhere. I have become a bipolar disorder survivor fully equipped to do battle with this illness. Experimenting with what works and what does not.

Almost everyday I wake up in the morning, put on the coffee and sit for a moment enjoying the fact that I actually have clear thoughts. It seems such an easy thing to hope for when you can concentrate and string words together, but it is nothing that I take for granted. Because there are those days, like yesterday, when I could read a book but could not concentrate at all to write.

The bad days really bring me down. I turn into a “glass half empty” person, and I hate that when it happens. I like the part of me that believes in hope, inspiration, and dreams. I don’t care for the person inside of me that wants to say I’ll fail before I ever get started. I have begun to learn bad days are not the day I want to focus on creating dreams for myself.

I sit back, take a deep breath and wonder for a brief moment what it would be like to be “normal?” I can’t even imagine what my life would be like if I wasn’t struck with severe bipolar disorder. I don’t waste much time thinking about something that does not make me feel better. I would rather spend my time coping with what I know I have to deal with.  But I admit sometimes my coping is not always healthy and I indulge in unrealistic daydreams at times.

I just returned from the doctor’s office today and I’m happy to say the medication change is going well. At first I was really worried that I would have to deal with the “Zombie” effects as the dosage was increased. But fortunately it seems to be not as bad as some of the other drugs in the same category. I just keep hoping the anti-depressant effects will continue to work well.

After writing about my experience Lost in the Mountains with a Bipolar Episode, I had a bump in the road revisiting what had happened to me. I am grateful for all the kind comments and supportive feedback I have gotten. It’s always good to know someone out there can appreciate what you have been through.

I can also attest that I have been through some of the most difficult experiences caused by untreated bipolar disorder.  I’m a strong advocate for finding the proper medication regimen, without it I would not be writing these words.

 

 

 

 

 

Struggling with Depression

depression-13057

I am slowly waking up from a bipolar depressive episode. I raise my head up, look at the calendar and ask, “Where has all the time gone?” I may have seemed like I was present the past few months, but I’ve really just been hanging in there fighting the depression symptoms.

When I start to feel better I often find myself tempted to ruminate about the past. Oh the days when life was so much better—the times when I had friends over for dinner—oh heck just the times when I had some friends to call. How lonely life can become when you struggle with a mental illness. Especially when you struggle with depression, an illness that causes you to isolate yourself from others.

I contemplated taking a walk today, but I haven’t gotten there yet. I don’t know what I’m waiting for other than the symptoms from my latest medication to “wear off.” I think the doctor got carried away with pushing the dose of the new medication and the side effects are starting to cause me to sleep longer. I am so frustrated, it’s as if I’m constantly beating my head against the wall wondering when the wall is gonna break yet knowing that is not possible.

I want relief. Relief from the loneliness. I want involvement and yet I don’t know if I can keep my commitments. I want friends. Yet I don’t know if I have anything to talk about except my illness struggles and my past successes. Who wants to sit around hearing old tales about the past? People live in the present. They have lives. I feel like I have an existence. I try hard to stay positive and look for opportunities to “live.” But in all actuality I am struggling day by day with lingering depressive symptoms.

Depression keeps me from living to my potential. Sometimes the best I can do is get out of bed in the morning and that’s a huge accomplishment. The fact that I am trying to write is success. What I write is not inspiring or hopeful like I want it to be. I write about the struggle and the pain. I wish it could be different. All I can do is keep trying, that’s what I would tell a friend with the same challenge.

On a positive note, I do work part-time. It makes me put on my make-up and get out of the house. It’s not my ideal job, but it serves a lot of purposes. I work a few hours every week. Nothing I can’t handle even in the midst of fighting depression. I think about working more, but I don’t think I can handle it. I question my ability to handle stressful situations without triggering my illness.

So, I read and I write. Hoping that somehow I’ll get a pearl of wisdom to jump off the page into my heart. I might feel something click and maybe I’ll smile. Maybe I can relate to someone just like me and in that moment I won’t feel as bad.

 

 

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 Course of Depression

The following information explains the Course of Depression.  It also includes a link to the Hamilton Rating Scale for Depression.

The Course of Depression

Episode

The initial episode often, but not always, follows a significant precipitating event, for example a job loss, relationship discourse or some type of trigger. The course of depression can vary based on individual factors and influencers. Episodes may occur in clusters or could be isolated and separated by many years. Episodes may become increasingly frequent and more severe with age.

Untreated, a major depressive episode may last, on average, about four months. Some people only experience a single depressive episode and thereafter are symptom free. However, many people who experience one major depressive episode will go on to experience multiple major depressive episodes. Consider the following:

  • 50% of patients who have a single episode and recover can be expected to have one or more episodes in their lifetime[i]
  • 80% of those with a history of two episodes will have another recurrence[ii]

Response

After the initial episode, an individual who seeks treatment may have a response or partial response with symptomatic relief. Symptoms begin to improve in response to medication. A response is defined as a greater than 50% reduction in the Hamilton Rating Scale for Depression (HAM-D). Some patients may still exhibit significant depressive symptoms.

Remission

The next step in the course of depression is remission. Remission is defined as an attainment of asymptomatic status (normal). Achieving remission would enable patients to return to their job, engage with their children, and resume normal activities.

Recovery

Recovery is defined as asymptomatic status for six consecutive months or longer. Mental health consumers are given hope of reaching some level of normal life with the possibility of recovering.

In the past, clinicians settled for patients feeling better or having a partial response to medication. Now, remission is the standard of care in depression.[iii] Similar to other diseases, failure to achieve full remission may result in risks for future episodes, and increased severity including morbidity and mortality.[iv]

Relapse

Relapse occurs when patients have a return of the same episode and symptoms reappear prior to a complete recovery.   Often patients discontinue their medication when they start feeling better. It is important for health care professionals to counsel patients on the necessity of adhering to the prescribed regimen.

A person may relapse prior to reaching the recovery phase, requiring a new medication or combination therapy. Keep in mind two out of three patients will not adequately respond to antidepressant monotherapy.[v] Additionally, depression is a chronic and recurring disorder often requiring medication throughout patients’ lives.

Recurrence

If a person fully recovers from a major depressive episode, and subsequently has a new episode this is called a recurrence.  Clinicians struggle to assist patients in maintaining normalcy, since the course of depression often includes recurrence.  Studies have shown in patients who have had two episodes of depression, the risk of another recurrence is 80%.

[i] See episode…

[i]Kupfer, DJ.; Frank, E.; Wamhoff, J. Mood disorders: Update on prevention of recurrence. In: Mundt, C.;Goldstein, MJ., editors. Interpersonal factors in the origin and course of affective disorders. London,England: Gaskell/Royal College of Psychiatrists; 1996. p. 289-302.

[ii]IBID

[iii]Depression Guideline Panel No. 5. AHCPR.

iv] American Psychiatric Association; 2000.

[v] Gaynes BN, Rush AJ, Trivedi M, Wisniewski SR, Balasubramani GK, Spencer DC, Petersen T, Klinkman M, Warden D, Schneider RK, Castro DB, Golden RN. A direct comparison of presenting characteristics of depressed outpatients from primary vs. specialty care settings: preliminary findings from the STAR*D clinical trial. Gen Hosp Psychiatry. 2005 Mar-Apr;27(2):87-96.