Identity separate form bipolar disorder.

Angel's trumpet

 

Having bipolar disorder is challenging.  First, there are the fluctuations that are difficult to deal with and take a lot of work to manage.  Then there’s the stigma, followed by that all a person needs to do is say, “well you have polar disorder” to win an argument.

And I don’t like the ups and downs of mood.  Though it’s not always mood.  I have something mixed in that disguises itself as a mood swings… chronic pain.  So, when I’m feeling better, I am not as negative.  And when I’m having flare ups and my pain is great, I’m a little more difficult to deal with.  I can get into a downer mood from being uncomfortable.  My favorite thing is when I’m not in much pain, I’m in an even mood, and nothing is bothering me.  It’s peaceful and comfortable – physically and emotionally.

I don’t really like being in a bad mood or feeling down.  I’m always looking for strategies to stay healthy and level.  I don’ t enjoy it when I have too much energy, or not enough.  I don’t like bipolar disorder at all… the mania and depression are just icky.  And in the times (about 7) that my mind has slipped into delusions, I would prefer that I’d not had those experiences.  It’s all very unpleasant.

I’m sooo glad that I have a nice sweet spot that I find a lot.  In that time (a lot of the time, but not predictably), I find who I am outside of illness.  It’s wonderful to have a complete and grounding sense of who I am.  I know that the illness is a part of my experiences.  But I really don’t think of it as part of who I am.  Kind of like cancer… if I had cancer, I wouldn’t think of it as who I am… just something that I had and needed to tend to, and hopefully survive.  Bipolar episodes are part of an ailment, not a personality determiner.

Some people in my life try to get me to understand that the episodes are part of who I am.  They are wrong.  Illness is an awful experience I have because of something that I didn’t ask for, don’t want and that has no cure.  It’s a disorder. And whatever the brain does when the neurotransmitters aren’t connecting properly, has nothing to do with who I am, or I wouldn’t behave the way I do in those times, and I wouldn’t have the thought processes that I experience in those times.  I’m not a disorder.  It’s not a choice to behave in ways that are contrary to who I am.  When I’m ill, it’s very clear to those who know me.  I’m literally not myself.

Who I am is a really neat person most of the time.  And it took a long time for me to be able to say that confidently and not care what people think, or wonder if it sounds too conceited.  I think it is reasonable to acknowledge to myself that I’m a good person who is interesting.  That’s different than thinking I’m smart enough to be the president of the United States (an often-experienced delusion when I’ve been ill – filled with a lot of anxiety over the responsibilities I’ve thought I had).  When I’m well, I just recognize that I’m nice, and kind, and gentle and artistic, faithful, and interested in a lot of things and have a tenacity to keep trying to find a place in this world where I can be functional more of the time.

I recognize in myself, some of the things that I admire in other people.  I don’t always have this window.  I have it right now.  And I appreciate that I have the ability to not criticize myself for all my shortcomings – a lot of which stem from having bipolar disorder.  I hate bipolar experiences.  I love being even and positive and having healthy amounts of energy.  It’s the most comfortable thing.  And it is possible for someone who has this disorder to experience.

I have a very distinct sense of identity outside of illness.  I’m grateful for that.  I’m aware that not everyone has that.  I count my blessings.

I didn’t write this very well, but I think it’s important to show that I don’t think I’m perfect… and illness can really cause problems for people when they are misinterpreted. And I’m just really sorry for my part. I was ill at the time.

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One of the things that I do aside from write about my bipolar related experiences is I take care of my mother who has advanced Parkinson’s disease.  I moved to live with her in 2013 so that I could take care of her.  It is an interesting situation to be in, particularly in light of a very difficult year in 2016-2017.

It’s hard to write about in some ways… that long year that was so difficult for my mother and me.  I’m not sure where to start, (and when that happens, I sometimes ramble until I get a dialog going).  So please excuse me if I am a little here and there right now.  I’m not trying to be elusive or vague.  It is just that there is so much stigma attached to some of what I write about (and have gone through) that it’s hard to know how to present some of my experiences.  I don’t want to be seen in a bad light… you know?  But there are some things that can come across as very… not good.  And I want to share some of it because it is a genuine part of my experiences with bipolar disorder.  Also, there are people who experience similar or worse situations when their mental health falters for whatever reason, and I want to show that there can be normality after illness and confusion… and that no one is alone in their experiences.  5.7 million adults have been diagnosed with bipolar disorder in the United States.  All have varying experience with wellness and illness. And some of these people encounter problems they wouldn’t face in times of just wellness.

In the early part of 2016, I experienced a crossover into a full blown bipolar 1 episode.  It was triggered by medical treatment for back pain (corticosteroid injections).  It was an awful time.  I ended up off my meds, believing full heartedly that I don’t have bipolar disorder.  And it took more than a year to get me back on meds.  And through that time, I had traumatic experiences with the police, and the fire department, and mental health facility staff.

The thing is (that a lot of people kind of miss, particularly if they have never met me outside of an episode) that I’m fragile and scared when I’m not well.  Psychosis is a scary experience for me.  A lot of professionals in the mental health system talk about how people with bipolar disorder usually like the mania, creativity, and euphoria that go along with the experience.  I am not part of that category.  I don’t like being hyper.  I do like to have energy but prefer healthy levels of it.  I don’t enjoy my mind’s wanderings while I’m ill.  However, there are a few things that I do like in the experience, but these things are coupled with frustration because my thought processes don’t ever come to fruition.

I get the typical grandiose ideations… being someone important, thinking I’m smarter than I am, etc. But after a while, when evidence of my hierarchy in society and acknowledgments of my intelligence don’t reconcile with reality, it’s frustrating and unpleasant.

When I’m ill with a bipolar episode, I am very vulnerable.  I can see how this might be hard to picture for some.  I do tend to overcompensate for the fear I experience at those times.  But I’m generally afraid of the world.

What do I think about during the episodes I have?  I’ve mostly obsessed over how to save the environment and try to come up with solutions to the world’s problems.  I think about social injustices, community issues, how humans interact with the world around us.  That’s what I primarily focus on.

I’m basically harmless.  I just get really confused, don’t really understand how confused I am in those times and think I’m someone of importance.  But I’m just a regular average nobody who isn’t stupid but isn’t particularly or formally educated either.  There isn’t anything outstandingly impressive about me.  Some say that it’s inspiring that I am open about my disorder.  But really that just became a coping mechanism.  To keep having bipolar disorder some sort of shameful secret would be like suffocating.  Trying to hide it (like I did early on) only made it worse for me.  Sharing helps me a tremendous amount.  So, nothing too interesting there.

In any case… In 2016, I asked a police officer for help with getting care for my mother.  She’d had brain surgery in 2015 and I was worried about the site on her head where they drilled for the surgery.  I suppose that it was such an unusual procedure that he didn’t take me seriously.  He told me that it wasn’t his problem… the issue was my problem and to deal with it by myself.

I sometimes try to imagine what it would sound like for someone to explain DBS (Deep Brain Stimulation) surgery.  I basically walked up to the police station (they came outside to talk with me) and started trying to explain the surgery process because I was worried about my mother.  It made perfect sense to me, but what would it sound like to hear someone say, “mother had brain surgery,” I suppose that’s enough for someone to say or think, “yeah right.” But the truth is that she did, and it both affected her in unexpected ways, and created a lot of stress for me.

I explained to the officer that my mother had brain surgery and detailed how the procedure worked.  I tried to tell him about the device in her chest… he wouldn’t listen.

Just to give you some info on this surgery, in layman terms, basically – the surgeon drills two holes in the skull and insert long wires that reach down into a part of the brain that helps control movement.  Parkinson’s disease is a progressive, degenerative disease that affects the movement center of the brain for those people with Parkinson’s.  And these people tend to take a lot of medication to help control shaking, stiffness, and other symptoms.  This medication tends to cause dyskinesia – an unnatural, involuntary movement of the body, often apparent in the shoulders or from the waist up.

In any case, the medications help to control the dopamine levels in the brain. What the surgery does is it creates a constant signal from a device that is implanted in the patients chest.  (Now, imagine an officer hearing this) The procedure is a two-part process.  The first part is the implants in the brain.  The wires have an area at the ends (the part that goes to the movement center of the brain) called leads that…

Okay, it’s hard to write this out exactly without having a diagram to show you.  But basically, I told the officer that my mother has wires in her head that reach down to her chest (this is true) and connect to a device that sends currents to her brain to help control the dopamine levels and helps reduce the amount of medication she takes so that she doesn’t have as many side effects from those medications.  I try to understand what that sounded like because I can’t quite explain to myself why the progression of events happened the way they did.

Okay, back to when I had the injections in early 2016.  It was almost a year since my mother had her brain surgery (just for the heck of it, here is a link to more info on that in case you’re interested. https://mayfieldclinic.com/pe-dbs.htm ).  Most of these surgeries go smoothly and the benefits outweigh the drawbacks.  My mother was unfortunately part of a statistic in which 2% of the patients experience complications.  She experienced delirium after the surgery and had a bit of a personality change for a while.

So here I am, someone with bipolar disorder coping with a situation that had me kind of panicked and I turned to the police for direction and help and was turned away… likely because he was ignorant about Parkinson’s disease and particularly about DBS surgery and thought I was some kind of nut.

The unfortunate thing is that I had been given these corticosteroid injections and it changed my energy as well as sent me flying into a manic episode and I was delusional.  So he was correct that I was struggling with reality.  But I still had one foot in at that point and knew what I was talking about when I was trying to explain the complication that had me so worried.

My mother had let me touch her head where the implants were inserted.  And it felt to me like the plugs that closed the surgical holes were lifting under her skin and rising out of the holes.  Again, as I write, I try to imagine what that must have been like to listen to.  But it was what was going on and I had genuine worry.  I told the officer that I wasn’t sure if it was an emergency, but really needed help to make sure she was okay.  He said, “that’s not my problem.  It’s yours.” And then he ended the conversation and went inside the police station.

I was in disbelief and I felt like the heroes I saw in the police all my life had fizzled and there wasn’t anyone special that would help me help me and my mother – an elderly woman in need.  I just couldn’t believe that he walked away from me without offering any suggestions or information about resources, or anything productive.  He seemed to just see me as a nutcase and wrote me off and walked away.

Well, I was about to head home, and I remembered that the fire station was across the street behind me.  I turned and walked over to them.  TV shows like Emergency 1 and ER and other hero depicting shows went through my head and I thought maybe they would help.  I was motivated to try.  I was very worried about my mother.

Well, they wouldn’t help me either.  Not at first.  I had to explain as best I could.  And I have no idea if they understood or not.  I’m thinking not because even though they said they would meet me back at my home which was up the street and down a block (I didn’t have a working phone at the time, and so had walked there – it isn’t too far from where I lived) they didn’t act the way I expected.  But they did say to meet them back at home.

So, I walked up the street to my home and saw the fire truck outside when I got there.  And I opened the door and walked in, like I usually do because I lived there.  The fire guy ordered me outside.  I was resistant.  And he threatened to put me outside physically if I didn’t leave.  I was like, what the f**k.  And I was angry because I was worried about my mom.  And I couldn’t process that these departments (fire and police) were not being heroes and helping.

Instead of being told what was going on, the fire department called the police to come.

Now this is what was actually happening.  Meanwhile I was in a delusional state and none of this was making sense to me. I was feeling like my rights were being violated.

But then, I had been struggling for almost a year and needed help desperately.  I was actually in this window in which I was feeling like seeking out help because my mind just couldn’t reconcile my thoughts with reality.  And I was planning on going to my doctor to see if I could get help and maybe try medication again.  Meanwhile, the fire department had three individuals in the apartment and I was hopeful that they were giving her the medical evaluation I had asked for while I waited outside.  Instead, the police showed up and brought up old news.

Earlier on, I had struggled with my mom’s condition because she hadn’t completely recovered from her surgery.  She was much better than she’d been but was still struggling a bit.  So, there we were two people with brain related concerns and as often happens, the one with the diagnosed disorder got taken to the mental health facility nearby.  My mom never received a medical evaluation that day and I was carted off without being allowed to speak for myself (they wouldn’t let me talk) and put into “care” where they do that traumatizing stuff they do.

I was destroyed.  My idea of heroes in the community had fizzled (and continued to do so over the next many months.

It took another year or so for me to have the opportunity to be with my mother at a neurologist’s office to ask about the “plugs” in her skull and whether or not they could dislodge and possibly cause an infection or bleeding in the brain.  That was my big worry.  I didn’t want my mother to suffer.  That’s why I went to the police and then the fire department to seek help.  She wasn’t seeking medical attention and I was just asking for help to make sure she was okay.

At one point the police there asked me if I ever had thoughts of harming my mother.  I said that in December (it was early January) there were concerns, but… and I was cut off.  I was trying to explain that those concerns were addressed, and I’d already been in the urgent mental health care facility for it.  And I wanted to explain that I never had any intention of harming her, that I felt at the time (and thereafter) no interest in harming her.  I wanted to clarify that I was afraid that in December, I left because I was afraid I might harm her, not through intention but by way of snapping.  I didn’t want to snap.  I was under a lot of stress, wasn’t doing well and I was easily frustrated. I was amped up from the steroids and had an uncomfortable energy.  But I’d dealt with that at the facility already.  And there was nothing to worry about.

Keep in mind that I’d had those injections.  I had become restless.  I wasn’t sleeping well and I had this energy where a lot of things bothered me.  My mother was struggling too, and I wasn’t in a mind space to understand her needs.  I was very touchy, and she was kind of triggering my upset.  So, at one point I left with all my belongings because I didn’t want to be triggered and cause harm.  I was worried for her safety.  And that’s hard to share.  But I was.  And I had no intention of harming her, and I never threatened her or had any intention of being harmful.  It was just this energy thing that came from the injections.  But I’d written things on Facebook (that I now regret) which were taken out of context.  I wrote them in a quiet way to ask for help.  But no one commented, no one reached out to me and no one asked if I was okay.  I wasn’t.

I was in the middle of the worst psychotic episode I ever had.  I was weighed down by the belief that I was responsible for coming up with solutions to everyone’s problems and had to save the world and humanity.  And my mother wasn’t doing well.  And at the time we had some issues.  She wasn’t able to hear my boundaries and violated my privacy a lot and was kind of abusive in some ways.

So here we were two people in need of help.  And the police messed it up.  Everyone thought I was psychotic because I was talking about the DBS surgery.  The staff at the mental health facility put in my records that I’d said my mother had wires sticking out of her neck.  Which she created out of what I’d actually said.  I’d explained that the wires in her brain reached over the right side of her head and down her neck where it connected in her upper right chest to a device designed by Medtronic which helped control the dopamine levels in her brain.

They didn’t put anything in the records (I have a copy) what I talked about when explaining how compressed I was feeling. I hadn’t yet been so violated that I gave up on asking for help.  I took the short time they gave me to explain as much as I could as fast as I could.  The woman noted that I was manic because I was talking fast.  The truth was that I wasn’t as manic as I was psychotic.  But nobody was willing to listen to the facts of things because it was apparent that I was ill.  So, I was psychotic, but I was speaking truth, and no one would acknowledge the truth I was sharing.  They all just interpreted the reality of things as psychosis, when at that point I hadn’t started expressing any of my ideations.

I’m the caregiver of a 72-year-old woman who has advanced Parkinson’s disease.  And I’m horrified over how people of authority handled the situation.  They made it worse and worse for me and created a circumstance that left my elderly mother at risk.  She has a high “fall-risk” that developed after the surgery.  Her sense of balance isn’t as good as it used to be.  And she has osteoporosis which means that if she falls, she could easily break a bone or two.  And though I can’t be next to her every minute of every day to prevent a fall, I can be around to call for help if indeed she falls and hurts herself.  But the police didn’t seem to consider that when they put me on a 5150 (an involuntary 72 hour stay at the locked facility).  My mother was at home alone for three days, meanwhile I was being neglected, misread and traumatized at the hell of a place they call a care facility.

So again, the reason I’m sharing all of this is because people who have mental health struggles don’t really get help as much as they get stored and traumatized and mistreated, or neglected in these situations.  This is something I’ll get into in another post sometime.  I talk about it a little on my website:  http://livingthetide.com/hospitalization.php People in official capacity tend to respond to mental health issues with coldness and hardness and strength… when what is needed is compassion, understanding and sensitivity.

This stuff swims around in my head sometimes and I feel powerless.  I’m scared of the police now.

One of the points I want to make is – what will happen if I need to call 911 for my mom?  I have a phone now.  I can use it to get help.  But these officers who arrested me for asking for help for my mother leave me feeling scared to see how I will be treated if she falls in her sleep (she has vivid dreams sometimes and falls out of bed).  What if she has an emergency?  Will I be hauled off to a mental health facility for calling for help?  It happened before.

And I mean, I will have to call if something happens that requires it.  I fear.  And a lot of people with mental health concerns are mistreated when what they need is tenderness and kindness and sometimes a person to listen politely when explaining a brain surgery procedure so that they can understand what I’m asking for when I ask for a specific type of help.  I just wanted the guys to touch her head where the leads were inserted and tell me if she is okay or if she is in danger.

I’m so disappointed that they mistreated me and especially wouldn’t allow me to speak.  And I felt at the time that if I didn’t keep my mouth shut that I would be handled more roughly than they were already treating me.  They scared me and harmed me emotionally.  They confused the hell out of me and they didn’t try to help me.  And in trying to, what (protect my mother from me?) they were not addressing the dynamic of the situation.  They just separated us and didn’t ever respond to what I approached them for.  It killed the hero in my mind and heart.  And even though I’ve been very stable for over a year, back on medication and taking classes, getting A’s and doing a good job of taking care of my mom again, I’m just terrified on a certain level (which never goes away) that if my mother falls, I’ll be treated roughly when I call for help.  I’ll be mistreated, disrespected and fear that they will be uncommunicative with me about her condition.

My mother and I get along very well now.  She’s my best friend and she says stuff like that to me too.  We are a healthy pair, despite my fears.  It is a joy to be the one helping her, and I feel fulfillment from doing a good job of meeting her needs.  Most recently, she had a medical issue and I helped her tend to it.  I gain a tremendous amount of satisfaction from helping her heal from it and it made me feel warm inside to be allowed to help.

I believe that the police and fire department think they were just doing their job.  I think they didn’t do it right.  They were interfering with a delicate and complex situation without investigating past their own nose, and without caring for both people involved in the situation.   And actually, they didn’t help either of us.  They acted officially.  That’s about it.

It feels like because my mother is elderly and I’m “young” at 45 that she was some kind of victim.  They wouldn’t talk to me or let me speak.  They turned me away when I was asking for help for her and then turned it into prioritizing one of two people based on age.  I felt thrown away, violated, and criminalized because they didn’t have a clue about what was really going on, nor apparently the training for it.

My mother later filed for a restraining order because from that point forward, my energy was just so emanating that she felt threatened.  She wanted me to get help and didn’t know how to make that happen.  She got advice from the senior legal center to file the restraint rather than the eviction notice she wanted.  She needed space from the energy.  I understand how it might have been intimidating to be around.  But she was in no harm’s way at the time.  I had dealt with some of the edge from the injections and didn’t have any fears of harming her by way of maybe pushing her out of my way or something like that while walking by.  I didn’t feel like I was going to snap.  It is true that I’d had some scary thoughts and I posted about them.  But I was just very tired and confused… and I posted to indirectly ask for help.

I was the one who needed caring for, as much as or more than my mother.  I needed gentleness and an ear to communicate with so that I could get the proper care.  The mental health system while it is designed to treat patients, hasn’t really reached the point of being a care system, though it is meant to be and is perceived as such.

Well… I love my mom and I love living with her and helping her and having this very unique opportunity to get to know her so well.  It turned out that she is still very much the same person inside but has some different way of sharing herself with others.  Once I was well again, we talked a lot about what happened and we both understand each other better now.  And some of the behaviors that I was taking personally and getting really sensitive over are side effects of her surgery.  I try to process what happened as well as the fears it left me with.

There were a few times when the police came to take me away because of the restraining order.  But they (again wouldn’t let me speak) didn’t investigate or ask me questions.  They just took me away.  I was only there because my mother invited me.  She’d said that the restraining order had been modified to allow me to be there as long as I didn’t bother her.  So that’s why I was there… not because I was intentionally violating the order or was threatening or harming my mom.

Keep in mind that I was totally out of it then… still off medication.  This is moving from the original interactions with the police in January into events that happened through the summer.  The window for seeking help closed with the mistreatment.  I stopped trusting people entirely.  It was awful.  And over the course of more than a year, I was in and out of the hospital 9 times.

And here’s the thing… they knew that I have bipolar disorder.  The summer before (in 2016) I’d called 911 myself to get mental health treatment because I was agitated.  I had an energy that was building.  It was a side effect of the corticosteroid injections.  But I didn’t have insight to put that together until after I was well, and so couldn’t explain that to the officers.  It was about three times in the summer of 2016 that I called for help.  Each time the police showed up after or at the same time as the fire department, who checked my blood pressure and oxygen and all that.   The officers were kind and gentle and supportive.

But as soon as 911 was called on me, and I wasn’t the one asking for help, the table turned, and I was treated like a criminal and was mistreated and discarded.  The officers that I encountered from that point on were cold and strong.  There was no caring apparent and they were just focused on getting me out of my home.

I was still the same person.  I don’t understand why they didn’t take an extra five minutes to help the situation.  I’ve seen videos of officers taking time to help ducklings out of a sewer drain to reunite them with their mama.  And I might have had an energy emanating that wasn’t as sweet and cute as the ducklings, but I was still worthy of better treatment and genuine care… the time of day, you know?

I had to go before a judge at one point.  Everything is worked out for the best now, all things are settled and life is peaceful and productive.  But I will never forget what the judge said, “the police know you very well.”  And I remember what I thought and still agree with, they have met me and seen me in illness. They don’t know me.  What they know of me is not who I am.  I didn’t say anything.  I was scared I would be put in jail or something.

Honestly, I never did anything wrong.  I never threatened anyone, or harmed them, stole anything, or damaged anything.  I just had this energy that people didn’t take to and I don’t blame them, really.  I know how that energy felt from the inside.  It was awful.  But I think they should have taken the time to ask me what was going on.  Communication can go a long way to resolving problems particularly when they relate to a complex mental health situation.  And a little bit of time and explanation can help too.

It’s really kind of tragic what happened, and what I went through.  But when I think about it, I always have some awareness that in a certain perspective, I had it easy compared to what some people experience.  Many people with mental health issues have run ins with the police.  There is a consistent story-line of lack of patience, lack of effort, and lack of compassion associated with these run ins.  Police don’t really seem to have any sensitivity training.  And they should.  There are better ways to handle mental health issues than with force.  It’s a part of the system that needs improvement.

My mother it turns out, is just fine.  There is obvious movement of the plugs, but I was told eventually that it’s not life threatening.  It was a relief to hear.

I hope someday that there is a number that can be called that doesn’t connect people to the police, but rather to trained professionals who do operate with compassion and gentleness when faced with a person who is struggling mentally.  I come back to that it was the same police station a lot – the difference was if I called for myself, or if a call was made about me.  When I called, I was told I was being proactive.  When my mother called, I was treated like a criminal.  We both had the same intention – to get me some help.

It’s the unknown and unpredictability I think that causes police to be harder on people with mental illness than on others… and lack of patience.  It can take a while to comprehend a moment when things aren’t making sense. And I wonder sometimes how these officers and firemen would cope with things the other direction and it were them who were mistreated.

The thing about it is that all this is happening, and meanwhile, my mind had betrayed me so there was trauma on multiple levels.  And no on seemed interested in helping me.  They jus took me away from my home to somehow protect my mother which left her alone and at risk.  It’s like they were just taking action without thinking or asking the right questions, or enough questions.

It’s all very hard to reflect on.  I’m generally a very nice person and fairly balanced and all.  I just have  sensitive brain and it has kind of broken a few times.  There is always a trigger.  I’ve learned to avoid a lot of those triggers and though my back still has issues, I’ll never get corticosteroids injections again.  I much prefer my peaceful life, even if I have more pain.

Quote for the day: “Good, better, best. Never let it rest. ‘til your good is better and your better is best.”

 

 

 

Do Meds work?

IMG_8763On my website: livingthetide.com, I have a page where I talk about medication and if it “works.”  I’ve been meaning to update it because I think it does, but I don’t clearly express it in the site.  I do believe some triggers outside of our control, but that medications can change a person’s quality of life for the better.

In August of 2017, I was at the end of a very long bipolar episode which included psychosis.  Medication turned that around for me.  Until then, I hadn’t had definitive evidence of how effective medication can be.  Likely, I may not have been on the right combination of meds for my physical chemistry.  But over the 18 year period since I was first diagnosed, I had an impressive history of taking medication.

It was only after receiving corticosteroid injections for back pain management, which triggered an episode, that I (during that episode) stopped taking my meds for the first time.  I became completely convinced that I didn’t have bipolar disorder, and it took a long time to get me back on medication.  By then, the injections had worn off mostly, and – having been off of medication for so long – I responded almost right away to one in particular.

So I can say that yes, medication can have a positive and desired effect.  Not all medication has that quick of a response time.  Many take effect over a few weeks or a month or so.  But they do work.

For most people, there is a need for patience because they do not always work with the first prescription.  Many times there is a trial and error phase, which can be very challenging and discouraging, but if given a chance – can work out to the patients benefit.  Sometimes, a physician is considered incompetent in the early part of these trials, and so people stop care.  But real incompetence can only be measured by history of success, not an individual account.  (Though there are some stories that are compelling anecdotes for making a case.)  And not following a doctor’s advice can lead to further illness.

It is important to have a trusting relationship with your physician.  And to remember that for the medications to work, a person must follow their prescription/s, take them, and give them a chance to be effective.

I’m very glad that there have been advancements in medication development, and that I have options available to me.  There was a time when there wasn’t much that could be done to help people with Bipolar 1.  I’m fortunate to live in this time.

 

 

 

Hiding

Moring walk photos 244Sometimes I want to hide because that seems the easiest thing to do.  Sometimes I do hide a bit, staying at home a lot.  It can feel safer than showing my face at the grocery store where I once behaved erratically, or at the video store where I danced in the aisle, or on my way to the beach when I walked along talking to air a few times during a delusional episode.

These episodes of mine are intimidating to me.  The prospect of me having another one always looms over me, stressing me out, causing fear.  I almost pray to my medication not to ever fail me.  I don’t like the experiences I have when delusional.  I’m always relieved once my mind settles on reality and things level out.

A lot of stigma is attached to bipolar disorder.  People, who know me well, know that there is more to me than the disorder.  It’s a blessing.

The power of language

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When I read first hand testimonies of people with bipolar disorder, I notice that each writer tends to say, “I’m bipolar.” They don’t seem to differentiate between “being” bipolar and “having” bipolar disorder.  Luckily, I landed in the care of a psychologist who helped make that distinction for me.  I don’t walk around with a weight larger than I need.

I’m a strong, independent minded individual, who is good, and honest and kind.  I’m not bipolar.  I do however have bipolar disorder.  I accept the distinction which was offered to me when I was first diagnosed at the age of 27.  To some, it might not matter.  To me it does.  It’s an attention to language that can add to the stigmatic atmosphere that surrounds the diagnosis, or help alleviate it.

Along with 5.7 million other Americans (NIMH), I have bipolar disorder (formerly known as manic/depression), and it’s a condition I deal with like some deal with eczema, or diabetes.  I treat outbreaks (episodes) until they end, and then I’m fine again.  And medication management helps prevent future outbreaks.

Bipolar disorder has to do with misfiring of neurotransmitters in the brain.  It’s actually a physical condition.  But because it is internal and can create unpredictability in individuals who suffer from it, it scares a lot of people, or makes them uncomfortable.

Highly trained mental health professionals tried to reduce stigma for those diagnosed with manic/depression.   As deeper understanding of the disorder came to light, it became named bipolar disorder rather than for the symptoms it can cause.  In part because the name manic/depression implies that an individual with the disorder has either mania/ depression, or both all of the time.  This is a misconception.

In analogy to an actual pole, there are two ends of every pole.  And just like Earth has North and South pole, in the spectrum of life’s emotions, we have happy and sad. The absolute of those resides at opposite ends of the same pole.  Of two poles: bipolar.  A person with bipolar disorder can experience the more severe of those two poles.  When these two states become a clinical concern, labels such as mania (more than happy) and depression (more than sad) can be applied.  As a literal comparison, physical poles are different lengths.  With bipolar disorder, the range of emotions/behavior can be wider or less wide.

There are at least four types of bipolar disorder.  This leads to a lot of confusion.  The two most commonly discussed are bipolar 1 and bipolar 2. My understanding is that the main difference between bipolar 1 and bipolar 2 is that an individual who suffers from bipolar 1 can have manic episodes that breach into delusions and then psychosis.  That doesn’t happen with bipolar 2.  It’s a main distinction.  Bipolar 2, as I understand is a very challenging disorder.  Having bipolar 1, I speak mostly from that perspective, and can’t speak for those who suffer from a different ailment.

One reason why I share about this is some of the stigma that is associated with my diagnosis comes from people who share the same, or similar diagnosis and don’t separate themselves from the disease.  It’s cut and clear for me that I’m human, not a disease.

I’m fortunate.  Though bipolar disorder has created problems in some of my relationships, I have a well-defined identity aside from it; in part because I don’t label myself the disorder. It is something that I have to manage.  (Again, like diabetes or eczema.) In my everyday life, I’m pretty normal.  I have had 7 mainly short episodes of psychosis.  They all ended and I went back to being my normal self.

Though people worked hard to create positive or neutral labels in order to reduce stigma, I think that they also come up with some problematic ones.  The terms “consumer, peer,” and “ bipolars” (plural) are demeaning to me and an example of lazy use of language.

“Bipolars” (plural) is a label that many in the mental health field use to describe people who suffer from bipolar disorder.  It’s lazy, and insulting.  They could easily say, “those diagnosed with bipolar disorder,” and they should! It’s kind of like saying “lepers.”

“Peers” is a term that is used to describe those who suffer from bipolar disorder.  Or for some it means anyone with a mental health diagnosis.  I don’t relate to others based on my diagnosis, never have.  So I find the term offensive.  I do use it once in a while when I accidently slip.  But I try to keep my language clean of shortcuts.  I say, “others with a diagnosis,” or “people with mental health disorders.”   It can take some diligence, but is worth the effort.

I feel that to group people together based on the term, “mental illness” and call them “peers” is to take away the perception that they can be well and function in society.  It also creates and promotes an “us vs them” continuum.  And makes for quick judgement.  My understanding is that the idea to use the term in this way came from wanting to offer people who suffer from a mental health disorder a group of people that they can consider a peer and not feel alone in their diagnosis.

As far as I’m concerned, my peers are my high school friends that I’m still in touch with over 20 years after graduation… my peers are people I have worked with… my peers are people who share the same political views that I do, or volunteer for the same causes.  I don’t identify myself “as” bipolar, so I don’t define my peers based on a diagnosis.  That’s not to say that a person who has bipolar disorder would never be a peer.  But I don’t see others as my peer just because they have bipolar disorder.

The word “consumer” basically relates to those who consume medication.  It’s in place of the name “customer,” though that is what they actually are. It’s the least offensive of the three terms.  But it is still a label and a shortcut from talking about the topic of mental health openly without labels, which is what ultimately will help the greatest in defusing stigma around the subject. More open discussion is needed.

I tell myself, and just kind of assume that there are others like me, who care about these terms and how they are applied to them.  I assume that I’m not the only “high-functioning” person diagnosed with Bipolar 1.

 

 

A Difficult Year

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I’m working on creating a better balance in my life right now.  So far things are going well.  I’m just recognizing how I need to take things slowly as I heal from a 15 month episode that nearly ended my life a few times.  The challenges I faced were immense! I’m glad it’s in the past and that I’ve been well for so long.  The right medication makes a big difference.

That year was really a rough one.  And it’s a story that’s hard to write about, but I’m going to start the process so that I can work on purging some of the residual trauma.

In early 2016, I received injections in my back to help with back pain.  I was struggling with chronic back issues and needed a solution so I could be okay and function a bit more.  The injections triggered a major manic episode.  Then contrary to my normal habit, I stopped taking my medication.  It took a while to get back on medication and when I did, life improved for the better.  But it was an unfortunate experience.  I developed delusions that captured my attention to the point I was completely convinced (psychosis).  I’m so glad I’m better!

There were many challenges during that time.  I struggled a lot and lost a lot of support from  my family.  As the difficulties mounted, my energy changed and I had somewhat of a personality change.  I carried an energy that seemed to offend people at first contact.  People that I didn’t know treated me differently than I was used to being treated.

I often call the experience almost like an internal betrayal in which illness stole my identity.  Illness walked around in the episode with my body, my face, my identity and disrupted my life causing suffering for me and others.  I hate that it happened.

Up until 2016, the longest episode I had was about six months.  That one was a challenge too. Otherwise, my episodes have been a matter of days.  Medication changes or increases seem to bring me out of it.

It’s hard to write about this publicly.  But I really do want to be helpful to others, put a purpose to the pain.  Or as I said in my book, “I will have suffered for nothing.  An un-buffered pain, for no one’s gain.”  So on I write to share this public diary about the traumas in my life as they relate to bipolar disorder.  I know I’m not alone, and I’m partly sharing for those people who might think that they are.

I’m not embarrassed to be me, but it’s hard sometimes to share with people who might not understand.  It seems that people need to have a decent understanding of the disorder in order to avoid being part of the stigmatic atmosphere.  Not everyone is willing to put energy into learning and understanding.  And some people are.

I had lived a rather benign life when bipolar disorder hit me at 27 years old.  It was a surprise to be diagnosed.  I’d lived that whole time with no obvious symptoms and everyone in my life was surprised.  Still to this day, after 7 episodes in 18 years, it surprises me that this happens to me.  The most encouraging thing is that from experience, I know that many years can go by, free from episodes, and I can always hope not to have another one.  Medications seem to be very effective now.  And I know so much about the disorder and how it affects me that I might be able to avoid one.  I hope for the best.

 

“When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” – Helen Keller

 

More on being public

For a long time, no one knew the cause of Bipolar Disorder, and it was hard to diagnose. Medications had a hit or miss success rate. Treatment options for individuals diagnosed with the disorder were limited at best. There wasn’t a very strong bright side to bipolar disorder. But more is being learned every day.

My name is Ann. I am unapologetically open and public about my bipolar disorder diagnosis. I have a few thoughts on the matter of the associated stigma, and because I’m not the only person who deals with the challenges of facing a judgmental world, I share many of those thoughts with you here in this website.

There are a lot of people in my life who suggest that I not put my face out there, asking, “do you really want to be that public?” The answer is, “No, I really don’t.”

But I want to help make a dent in public perspective on the disorder. Media in our culture reflects the extreme and violent mental health cases, such as the theatre shooting at the Batman premier, and other incidents.

I want to show another face – the one that is more common. The peaceful, loving, caring, and giving people… who on occasion suffer from periods of extreme difficulty.

Acknowledging the good people

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I suppose I want to acknowledge several people without naming them who have been helpful to me in the journey I’ve been on through the mental health system.  I started out with private care. But I ended up in the county system where I lived, and have been in county services since.  I’ve been through three county services agencies and have gained a lot of perspective in the last 18 years.  I have unwanted knowledge (would rather not have had the experiences) about the depths of the system and how it doesn’t work.  In my travels through these experiences,  I can note a few people who’s compassion is still remembered.

This entry is fairly short because I don’t want to get too specific.  I do want to point out though that it is these compassionate people who have made a big difference in my survival. I have a lot of critical things to say about most of the people in the system and how I’ve been treated, so I suppose I want to balance that with sharing the deep appreciation I have for the kinder gentler (and more effective) people.  Their kindness and consistent efforts to help alleviate some of my suffering is worthy of exploring in future writings.

This post’s quote: “Normal is just a setting on a dryer.”

Why so public?

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I’ve been asked why I’m sharing personal insights on a sensitive subject matter so publicly.  To address the question, it’s not exactly a dream come true.  However, I’m not the only person who deals with the kinds of things I do that relate to bipolar disorder.  And to me, it is only a sensitive subject because no one wants to talk about it… which adds to a stigmatic atmosphere.  I’d like to help chip away at some of the stigma attached to the disorder, helping to cultivate more understanding in the community.

Also, I’ve lost a lot of support.  Several people in my family flat out don’t want to know about it.  I’m judged and discarded.  Perhaps, I have become a veteran to my experiences and feel like there is nothing to hide. Perhaps I hope that people might see my true self through my sharing.

Having something in writing that I can refer others to in order to help them understand my struggles… or rather where some of my strengths come from is sometimes easier than trying to talk about it at first.  A lot of people can’t relate, so it’s hard to find a starting place to explain without losing them in the conversation.  So something in writing that they can read at their own pace, can make it easier to create a bridge into an open and healthy relationship.

The hard part is talking about psychosis.  The word itself scares people.  But they don’t know what it is most of the time.  They reference memories of the movie psycho, or news reports that over glorify people who have been perhaps murderous while ill.  The combination creates a fence, a barrier, between the greater public who are needed as support – rather than face the generalized judgement that exists.

Yes, there are cases of violence and erratic behavior that is unpredictable at best.  But one has to understand that there is no pre-crisis system in place in this country.  There is very little money spent on mental health even though it is becoming widely acknowledged that unipolar depression has become an epidemic.  The only number to call is 911, and that tends to involve the police who tend not to be consistently compassionate.  Use of excessive force is almost predictable.

People who suffer once in a while, don’t have a place to call for help… particularly in off hours or on weekends.  County services are overrun and underfunded.  And they tend to be unavailable in an actual crisis.  A person who is in crisis (or feels a crisis coming on) often doesn’t have other resources to turn to.  This needs to change.

A patient in need of help certainly doesn’t deserve to be traumatized on top of the trauma that comes from their own mind betraying them.  But as a lawyer told me once, “It’s the nature of the beast.”  The beast needs to be tamed and put to bed so that a more compassionate system can emerge.

If there was a better system available, or options to choose from, there might be less catastrophic cases.

So what is psychosis?  It’s complicated.  To quote the internet, “A severe mental disorder in which thought and emotions are so impaired that contact is lost with external reality.” That’s a pretty simple definition.  I like how it doesn’t say murderer or things like that, or refer to it as a permanent condition.

I think that’s a problem with a lot of people with little to no exposure to the matter.  It doesn’t seem widely understood that psychosis isn’t always permanent.  For a lot of people, it like a cold.  They get sick for a little while, then the episode passes and they are better, back to their regular normal selves.

In my experience, I’ve just been very confused for a bit.  I have had delusions that built until I believed them (which is another definition of psychosis). I’m very peaceful, really.  However I have had experience with getting agitated.  But that was caused by external circumstances coupled with the duration of the episode.  After a while, with reality subsided, psychosis can wear on the person.  It exhausted me last time.  And I’m glad I survived.

Publishing my first edition of my poem (https://www.amazon.com/When-Pain-Stained-Peaceful-Heart/dp/1478766956) was a challenge, and I had to gather a lot of courage to put it into the world.  It talks briefly about psychosis but focuses mostly on an experience of being forcefully injected and the trauma that ensued.  It was a big step into the public eye.  I feel fortunate that the book hasn’t taken off yet.  I still have some anonymity, which is my preference.  But I wrote it to help myself heal, and I put it into the world to help others.  It is scary to tell the world that I have bipolar disorder because very few people understand it, many are judgmental, few are supportive.  And yet, I’ve found that there is support, there are people who want to learn, and I am able to lift my head high despite my past challenges.

Publishing my website at http://www.livingthetide.com was another step into the public world that I’d rather not have taken, but I feel it is important that I did.  I know from testimony that I have helped at least one person.  That is meaningful to me… and so I continue by starting this blog.

I also feel that I need to put a purpose to the pain.  Otherwise I have suffered for nothing.  Yes, I sometimes feel embarrassed, but I never feel shame.  I understand my disorder and how it affects my life.  I have a genuine sense of identity outside of the episodes I’ve had, and also have a good memory pertaining to most of it all.  So I can work on the baggage.

It’s not okay with me to be physically abused in the name of fighting for my health. Nor is it okay with me that I’ve been mistreated and neglected while in treatment.  Those tactics do not work.  They traumatize.  And I’m public as a stand against the broken system, the business behind the concept of care.

I don’t want those things to happen to me again, and I don’t want them to happen to others.  I want there to be options of reasonably compassionate care.  I want a system to be developed similar to 911 but for mental health concerns… where police are not involved, and whitecoats are not injection happy.  I want psychiatrists in mental health facility to take more than 10 minutes a day/week/month to spend time with a patient to find what is actually the best plan of treatment for them.

Am I not worthy of an individualized treatment plan designed for me to become well.  I am.  I don’t receive it while in hospital though… never have.  It seems that only cookie cutter treatments are applied, like one size fits all.

Medications are prescribed for the sake of putting medication into a patient.  For insurance reasons, doctors have to look like they are working.  There is an entire business side of the mental health industry that the general public is not really aware of.  I’ll address this more later.

I have a lot to say.  And I suppose that another reason I’m public about this is that I don’t want the system to stay as it is.  I’m stepping out into the spotlight shyly and unapologetically, with a little bit of courage to say, hey… it’s not okay.  We need to change things and make improvements.

Mental health needs to be a priority in this country, and it seems so tertiary and under prioritized that it can feel discouraging.  I sometimes wonder why I’m bothering.  But I took that step when I published my book.  And in some ways I feel like I can’t turn back.  Writing about my experiences and knowledge helps me feel purpose, direction, and hope.

A parting quote for the moment: “Fall seven times; stand up eight.” – Japanese proverb

 

Starting a conversation

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I like to take a lot of photos of flowers and nature and things.  So I expect that I’ll share a lot of those as I continue along.

I never expected to be the author of anything.  And I’m finding that this new format is already helping me on my path to healing from traumas inflicted by the mental health system.  I might be a little vague about those traumas at first, or scattered in thought as I draw them together.  It’s a tough subject to get into.

In regards to writing about all of this, there is a plan to organize my experiences in a way that others can absorb, even if they can’t imagine some of the circumstances.  I never thought I’d be diagnosed with bipolar disorder, in fact I’d never even heard of it before.  I’d heard of “manic depression” which is an antiquated term, but not until I was an adult, and only in a very nondescript way.  I’d basically only heard the term because I’d met someone who had it, but didn’t learn much about it.  My understanding is that the term Bipolar came from an interest to create a lable for the disorder that would carry less stigma.  It’s hard to say if that was effective.

It is an important distinction to make for me that I have bipolar disorder; I am not bipolar.  It’s an attention to language as it now pertains to me that I was helped to define  by a wise man early in my initial treatment.  I worked with a good psychologist who pointed out that bipolar disorder is an illness and I’m not unilaterally ill.  In my case, I have episodes here and there, but in the majority of my life, I’m well. I am not the illness, so I am not bipolar… however, I do have bipolar disorder, which I do a good job of managing most of the time.

A different word looms in my mind right now that I don’t want to address at the moment because it is the hot potato in my life.  No one really wants to talk about or understand it… most want to avoid the subject.  But it is an important one for me because it has disrupted my life on occasion to a degree of destruction.  I feel it weighing heavy in the back of my mind. It’s a word I don’t like and labels an experience I hate.  There is a lot of misinformation around it, mostly perpetuated in the media and film industry.  And those who are less informed tend to fear its perceived meaning. It can have a negative affect on relationships in my life, and is both an uncomfortable experience and causes a lot of regret.  The word is psychosis, related to the word psychotic.

I’ve had seven psychotic episodes in the 18 years that I’ve been diagnosed, ranging from three days to one that lasted fifteen months.  And I’ve been in a number of mental health facilities during those times.  That’s where a lot of trauma comes from.  I’ve learned much about the mental health system in my years of observation and personal experience.  And that’s part of what I want to share, in some ways to help myself process my experiences and hopefully heal a little from that and also help educate the wider population about the realities that seem to get swept under the rug, or over dramatized in the media causing stigma and fear.

It is my perspective that there are better ways to run things and there are options that are overlooked in terms of caring for people who are struggling mentally, either episodically like I have, or ongoing like someone with schizophrenia.

I describe myself as pro choice/pro-quality-of-life. In the mental health system, often there aren’t options to choose from, and so choice is not an option.  It is an important factor to consider when applying treatment to an individual.  The question should be asked (and it seems it often isn’t),  “Is what I’m doing in relation to these patients adding to their quality of life, or am I just acting as one of the cogs in the wheels of a broken system?”

It is the neglect, the abuse of power, and physical traumas which occur that lead me to want to help instill change in the system.  There is a depersonalized aspect to a lot of treatment… a lot of jaded and hardened people who might have started out wanting to make a difference but have lost their stamina and interest.

Now, while the balance of employees in the system weighs on the side of neglect and abuse, I do want to point out that there ARE a lot of good people who care and don’t participate in those practices.

It’s a lot of work to write about this without getting overwhelmed.  Sometimes I can flow for hours, and sometimes only a few minuets.  Part of staying healthy is knowing when to take a break.  So I leave you for now with a quote that was on a plaque on my grandmother’s wall all my life:

“Do not worry about whether or not the sun will rise; be prepared to enjoy it!”