Brain and Body – One Unit

With my next surgery only three weeks away, any sort of mental stability has been… skittish, at best. The nice weather has helped instill some good hypomanic moments, but I have been randomly transforming into a raging hose-beast from anywhere to 5 minutes to several hours at a time. Highlights include when my lawyer told me to “call him back when I felt more emotionally stable,” (good luck there buddy), or my explosion at my boyfriend for [me] not being able to find a reasonable anniversary gift for him. Whoops.

Overall, pain and eating issues/the fact that my body isn’t interested in going more than 15-45 minutes without requiring a restroom has been a large stressful addition to an already jacked up mental state. Not being able to eat the food I want (that would normally comfort me in times of stress) has been pretty difficult, and the embarrassment of having to ask the deli clerk to watch my basket at the grocery store while I use the bathroom three times in one 15 minute visit doesn’t feel so nice either.

Ultimately, the issue that my surgeon found during the last surgery is that my uterus (having grown diseased endometrial tissue) has become connected to my colon. While this seemed weird (and the doctors expressed that feeling too) I imagined the two bound by a small, maybe quarter size area that could be sliced apart… case closed right?

Uterus vs. Colon

Unfortunately that isn’t the situation. My uterus is now holding my colon hostage and is connected for a long stretch of both. I am happy that this explains the pain, nausea, and inability to eat… as well as some other, less pretty problems I’ve been having, but the fix isn’t quite so quick as I might have imagined.

Why even write about that here? I mean, I thought about that, and I thought about not going so in-depth about a health problem that isn’t mental health related.

Oh wait! But it IS!

The biggest issue my doctors and surgeons have had to wrap their head around is that I have a pretty severe case of bipolar disorder. Because of this, many aspects of my symptoms, my treatments, and my recovery are different from most people.

My symptoms include physical pain, but this is a big purveyor of emotional stress for me, which means triggers for emotional outbursts and episodes . At the same time, my symptoms of being unable to eat a long list of yummy things (dairy, beef, spices that aren’t salt, fatty or fried foods, seafood, acidic foods, the list goes on…) disrupts my typical “self-care” routine when it comes to finding joy in what I am eating. Having less options to draw on in maintaining my mental stability means less stability!

My treatment of this health problem is atypical because all typical treatments (using hormone therapy) trigger severe emotional reactions for me. That means the best option I have is a procedure (hysterectomy) that is normally reserved for women much older than me. Granted, I have never been interested in having children (so I dodged a bullet there) but upcoming surgery is, again, stressful, and despite my disinterest in having children my subconscious is still grappling with the idea and I’ve had nightmares every night.

My recovery will also be different than the norm because I have the added risk of post-surgery medications triggering episodes (like last surgery). Once again, the pool of self-care resources I will have will diminish as I will be immobile, and feeling “trapped” has always been a big trigger for me. The physical pain will continue to be an issue for a while and there is the possibility I will need to be on a liquid diet for a while as well (depending on how much surgery is done on my colon). So, um… stress much?

All in all, there is no separating my mental and physical health from one another. Even though my brain isn’t down in my abdomen having tug-of-war party with my uterus and colon, they are connected. It’s called a body! It is generally considered one unit.

At any rate, this is a situation that I know will require physical work. It will require mental work. It will require emotional work. If that is the price it takes at a chance of feeling better, as usual, I will take it.

 

There and Back Again; A Bipolar Surgery Patient’s Tale

While I’m not in a position to either calmly nor collectively express myself right now, I thought it important to pop in and let everyone know that at the very least, I survived surgery last month.

Healing from the surgery itself seemed to bring me no more pain than I was experiencing prior to the surgery, however I hit a number of speed bumps that have made it exceptionally difficult to write.

The first was a nerve in my abnormal cavity being pinched by my diaphragm post-surgery, and while this was very painful it was the fact that the doctors couldn’t rule it out as a blood clot that made things very intense for a short period right after surgery.

After that I had a really bad reaction to some of the medication I was given (not a new experience for me, given the reactions I’ve had to most psych drugs… I have the same problem with drugs in all categories). After being unable to consume anything but water for three days (including my normal medications) I slipped into a very interesting delirious state that quickly escalated into mania.

So the third hurdle was a bipolar one and frankly one I was rather expecting -though I can’t say I was expecting mania, more of an expectation for depression (given the pain). Things started out energetic and euphoric and after a couple of days without sleeping my boyfriend confronted me about his concern that I wasn’t resting properly. This was enough of a red flag for me to prepare myself for taking my as-needed I’m-kicking-mania-to-the-curb antipsychotic that evening, but even if it hadn’t been the paranoia and conversations I began having with people who were not present later that day were enough to get the job done.

After taking the emergency rispiridone I spent 48 hours in a zombified, half unconscious state. It wasn’t until the emotional void wore off that I found myself plummeting down the depressive rabbit hole.

I’ve gone back up and back down a couple times since, had probably twice as many panic attacks as usual, and I am honestly really struggling to find a balance between taking care of myself and resting. I expect that this is difficult in a normal situation, but resting when I can’t sit still and going to my follow up appointments when I am feeling exhausted has been doubly difficult. The emotional roller coaster isn’t fun, but not being able to rely on my body for information on how it is feeling at any given time (since my energy level fluctuates with my mood, not my level of health) is confusing, at best.

It is important to me to try and take a positive spin on this, and even though this has been difficult I am generally managing to claw my way through (with a LOT of outside help). Despite how overwhelmed I feel, finding out this week that I will need a second larger surgery in a month or two to address the issues found during the first surgery has left me with a loss for words. When it is hard for me to identify how I feel about something, it is even more difficult for me to write about it.

I have many thoughts and experiences I want to write about, and while they are things I plan to share I have no foreseeable timeline. In the meantime just know that I will be posting whenever I find myself in a place somewhat less tumultuous.

Thanks for reading!

Like Black and White

The effect bipolar disorder has on my life is never quite as apparent as it is when I see two distinct periods book-ended together.

The way things have been for the last four years I generally have found myself in a “stable” headspace for a week (maybe two if I’ve been really good) each year. During these periods it feels like slipping back through time, and the sounds of birds and expansive sky are not blacked out by a wall of noise and fear in my head.

I admit (though somewhat embarrassingly) that it is has been pretty common for me to begin to believe I am free of it. That life will go on with birds chirping and the sun shining and everything I have experienced will fade like a bad dream.

The truth is that in my life, those stable moments have been both the bearer of exceptional hope and the product of immeasurable fear. Hope that I could once again live my life feeling relaxed and calm… but fear that the rug will be swept out from under me at any moment.

So this is what I mean by two distinct periods book-ended together. Sometimes the clarity I find comes from experiencing mania and depression back to back, but overall the moments I am able to truly see the difference between a stable, rational me and what I experience the other 95% of the time are when the chirping birds and blue sky are suddenly drowned out by the inescapable noise and dampening via my brain.

This has been my situation the last two weeks. Though I have done my best to “avoid stress” it isn’t possible for me to avoid my health problems and the surgery I need to help correct them. With this news came the curtain, and with the curtain has come a very interesting view of how dramatically different my brain works when cycling vs. not.

At any rate, I just wanted to mention that I may be absent from this blog for a few weeks while I get surgery and heal up. I need to focus on coaxing my brain through this emotional maze with as much cheese as I can get my hands on.

Giving Someone With Bipolar Disorder Bad News Safely

I’ve had a number of people tell me lately that they don’t feel comfortable telling me bad news. The idea that people close to me are hiding serious issues from me because they are afraid of triggering my bipolar disorder is extremely frustrating; while I appreciate that people are trying to be wary of my feelings, the plan almost always backfires. Hearing bad news and that the people closest to me have been hiding it makes for an even bigger mood implosion.

The best I can do is try to convey that I realize I have trouble processing bad news, but the manner in which that news is passed on to me has a huge impact on my reaction.

When frightening or serious news is dropped in my lap suddenly (without warning) it can feel significantly more shocking; likewise if the conversation ends moments later (and I haven’t been able to ask any questions or begin to wrap my head around the news) I often find myself trapped in emotional quicksand. The more I struggle to understand on my own, the faster I sink into depression, anxiety, and irritability.

Through my experiences I have devised some tips to help ease some of the emotional reaction in situations regarding passing-on upsetting news. Personally, these things have all lent themselves to a much more safe emotional environment and a quicker recovery from intense bipolar emotional reactions.

1. Be up-front that the news might be distressing.

Letting someone know that a conversation is going to take a serious turn (instead of taking the turn suddenly) can make serious news much less jarring. There is something to be said about being able to prepare oneself mentally before receiving bad or serious news, and part of what contributes to a bad emotional reaction in my case has often been feeling blindsided and totally unprepared to hear something jarring.

Having said that, I have found even very broad, general statements like, “I have something serious to tell you,” or “can we have a serious talk?” are effective in this arena. If I know I might be at risk of having an emotional reaction, I can do a better job of containing myself than if the news is just dropped on me suddenly.

2. Bookend the bad news.

The best way I have found to receive (and give) potentially upsetting news is to bookend the serious subject matter with more lighthearted information. Starting the conversation in a casual way to ease the tension before launching into serious content can help folks feel less anxious about the upcoming serious bit. Probably more importantly (to me anyway) is ending the conversation with something more light-hearted to bring the mood back to the present can help with avoiding being caught up completely in the emotion of the serious bit.

Often hearing bad news can put us in a situation where we feel attacked or fearful, even unsafe. Being able to laugh at a bad joke or talk about a cute puppy really helps nullify that feeling of fear that can be the beginning of a big emotional spiral. In my life, being able to sidestep that fear makes for a totally different reaction to bad news and I am able to focus on counteracting my shock more than having to counteract my fear.

3. Make it a dialogue.

One of the things that really feeds into my fear when I get bad news is being unable to get answers the questions I have about what has happened/is happening. I do not want my mind uncontrollably fantasizing about all of the questions I have (and it will) so being able to ask questions and get answers that I understand makes a big difference in how my reaction will unfold. If we don’t have time to have a dialogue about the topic (and not just be subject to a monologue) then the timing probably isn’t appropriate.

4. Consider timing.

A couple days ago I received some bad news about 15 minutes before I was about to go to bed. Needless to say, I didn’t sleep that night.

Likewise, stress can be a big factor in how reactive my bipolar disorder is in any given situation. Laying some bad news on me when I am already agitated or stressed will yield worse results than providing the same information when I am relatively stable or calm. Again, even in an unstable situation, following tips 1-3 can pave the way for a better reaction.

5. Life happens.

Life is full of good news and bad news, that is just the way it goes. Unfortunately, living with bipolar disorder can make getting bad news extremely disruptive to our lives and our relationships, but pretending that bad news doesn’t exist doesn’t help us learn to cope with our reactive nature or practice living a full life.

Ultimately, I want to believe that the people in my life are genuine with me and open about their lives and their experiences. Honestly, in times where I could tell people close to me were holding back bad news it felt almost more maddening than if they had just been honest! Though this is an area that is very sensitive for many people with bipolar disorder, being gentle about the subject matter and being respectful to our situation when being open with us can mean a world of difference -not just for us, but also for our relationships.

Concluding Hormonal Treatment; Pushing the Bipolar Button

My second jaunt down Hormone Road this week ended relatively the same as the first (two-three weeks ago). By day six I was experiencing so much anhedonia I couldn’t eat or sleep. I had become completely engulfed in a tidal wave of pointlessness and self harm fantasies, so much so I could be seen walking up and down the street in the rain like a zombie, frowning for no real apparent reason.

Honestly, I pretty much expected this (since it already happened once two weeks ago) but I was holding on to some faint hope that I might be able to avoid surgery for the odd and still somewhat unknown abdominal problems I have developed. I’ve never had surgery (well, just a wisdom tooth extraction), and never even stitches, so the idea of anyone slicing me open (even a little slice) makes me exceedingly nervous.

Despite my inability to talk with the nurse over the phone in a polite or straightforward manner I am pretty proud of myself. She suggested I see the surgeon the same day I was calling to let her know about my reaction to the hormones, but somewhere in the back of my mind a little voice reminded me that I couldn’t figure out how to use the shower the day before (the same shower I have been using for the last six moths). If I couldn’t figure out how to make hot water come out of a tap (with only two options, left and right) it might not be the best idea for me to talk with a surgeon and make important decisions about the most invasive procedure I will have ever had up to this point. I told her it would be better to meet with him next week, and I am glad I did because it would be another 24 hours before I could smile for the first time in days.

One thing I have found relatively interesting from this whole hormonal excursion is that the first round (on a higher dosage of hormones; desogen) triggered an extremely agitated mixed state where I was depressed, but also very aggressive (not unlike my experiences triggered by corticosteroids). The second round (lower dosage, microgestin) provided a straight-up triggering of intense hopeless depression. Even after I stopped taking the drug (after waking up completely depressed) the depression worsened for 48 hours before the symptoms began to recede.

As usual, I feel compelled to point out that my body (for whatever reason) has become extremely sensitive to pretty much any and all medications I’ve tried, usually with some very poor results. Though it is probably not typical for people to have these sorts of reactions to hormones, it irks me somewhat that most bloggers and internet articles have now taken the stance that hormones never cause mood issues. Of course, this was also the stance of the first nurse who ever gave me hormonal birth control (when I was 18) -which promptly landed me in a psychiatric facility because of a sudden intense mixed episode.

Do hormones cause people to have mood problems? Maybe not most people, but I believe that anyone making broad sweeping generalizations about how safe and effective a treatment is (hormones never cause mood problems, vitamin supplements never cause side effects) are usually trying to sell you something. The truth is that even though hormones might not cause mood problems in most people, nobody ever mentioned them potentially triggering episodes for people who already have abnormally behaving moods.

Frankly, going into this second round of hormones I guessed (with probably 90% certainty) that I would not be able to tolerate them. This guess was not based on anything I read on the internet, but based on my own experience with hormonal treatments I previously encountered (prior hospitalizations, prior depression triggered by hormones, etc.). Having tried a multitude of medications in the past few years (and finding myself reacting to them in unusual ways) has taught me that the best thing anyone can do when starting a new kind of treatment is pay attention. Get to know what is typical for you; a typical headache, a typical bipolar episode, even your typical aches and pains. Without knowing how my body and mind normally act, it becomes incredibly confusing and maddening trying to discern side effects from the normal mood cycles I experience.

And most of all? Don’t forget about your doctor. If something is feeling off, or if I feel much more miserable more quickly than I normally would (like this week)… that’s when it is time to say something. I know that I tend to get incredibly anxious about contacting my doctors after starting a new treatment because I don’t want to appear to be a hypochondriac, but working with people I trust has meant that they also trust my judgment, and I know they want the best for me.

As frightening as surgery sounds to me, after 7-8 months of extreme pain I am ready for this issue to be addressed… and if hormones are not going to be the way to do that, I am ready to take whatever steps I need to in order to improve this situation. Though I can rule out episodes triggered by hormonal therapies at this point, the pain I have been experiencing is significant enough to trigger episodes as well. In the end, all of the healthcare I have been seeking is ultimately tied to improving my mental health as well, less pain -> less stress/distress -> more sleep -> more stable mood. I am hoping that if I can get my body to a relatively happy place, my mind might follow suit.

Attempting Hormonal Therapy with Mixed Emotional Results

I know I have been somewhat MIA the last couple weeks, but here is a quick rundown of my current situation and how things have been faring.

It looks like some (if not all) of the GI problems I have been having since trying Seroquel (all of which are still present even after almost six months of stopping it) are potentially due to a hormonal problem triggered by the drug. After having an endoscopy (having a camera put down my throat to inspect my stomach) and a colonoscopy (same thing, only in reverse… and with significantly less dignity) the result was that the doctors could find no reasonable cause for the intense amount of pain and other odd symptoms I have been having.

After everyone scratched their heads for a while I did some of my own detective work and I went to see a gynecologist. She recommended hormones. I started taking them two weeks ago… and the result was pretty much exactly what I expected – the same sort of response I have had to pretty much every drug (even the flu shot) the last couple years.

A bad reaction.

You see, not only do I experience a treatment resistant, very sensitive, easily triggered version of bipolar disorder (type 1), most medications I have tried (even something as simple as a nasal spray) have triggered big problems for me either by making my emotional state completely deteriorate and triggering a big bipolar episode, or by triggering significant side effects (which generally just go on to trigger more bipolar episodes).

So on day 5 of hormone treatment when I began crying uncontrollably for an entire day I pretty much knew it was the end of that road, but I kept taking the drugs for two more days (just to be sure it wasn’t my own rapid cycling). Nope, by day seven I had become completely engulfed in suicidality and promptly called the gynecologist’s office to inform them and stop taking the new hormones.

Stopping the hormones suddenly was also a problem. Within two days I was no longer in the throes of depression, but instead I became manic and couldn’t sleep for three days.

I had another appointment with the gynecologist yesterday to try and figure out what to do next. She recommended another form of hormonal therapy (with significantly fewer hormones) which I started last night. Personally, I don’t expect this to end up any different than the last round, but I am willing to give this treatment option a shot because my only other option is surgery… which, frankly, scares the bajeezus out of me a little bit.

Like my continuously evolving trial of medications to potentially treat my bipolar symptoms, after hearing about my experiences the doctor concluded that I am very brave for being willing to try hormones again. It is my belief, however, that bravery and desperation can often look a lot alike from the outside looking in…

At any rate, that would be what I have currently been up to. I am sure the mania was also partially fueled by the fact that it has been summer-time weather (sunshine in the 60’s) in Seattle last week, the total opposite of what normally goes down here in January. It seems weather like this could make for an entirely different kind of winter than I am normally used to (30+ days of rain in a row potentially ending in a depressive hospitalization). Mania has its pitfalls, but honestly there are times (like the winter) where it just feels nice to have a little variety.

I expect I will know pretty soon if I will be able to tolerate this new drug, ironically enough it has the potential to alleviate my lactose-intolerance that started when taking Seroquel, however the pills themselves contain lactose so taking it so far has not been a fun ride. Really, just the fact that I have found a doctor who has found evidence of a diagnosable problem after six months of doctors being unable to give me any kind of answers has been encouraging, even if the treatment options do turn out to be somewhat torturous.

In my life, a little hope can go a long way.

Mindfulness and Self-Judgment from Another Angle

Thanks for all of your comments regarding mindfulness on that last post, it is a topic that I keep circling back to in my mind because it has been hard for me to grasp the concept.

While some people seem to lean heavily toward the aspect of mindfulness that involves being aware of emotions and their changes, this is the part that I feel completely confident in. Identifying my emotional state is something I have been working on tirelessly for four years now (and I do it 4-12 times per day or as mood shifts happen). Mood charting has allowed me to check in with myself to identify my mood and potential triggers (among other things) so in a self assessment, this is an area where I would give myself five stars.

Having said that, while I have strength in the area regarding identifying my moods and mood swings I am not very good at identifying psychosis. I can sometimes identify this phenomenon when it is slowly gaining momentum (like over a period of days) but when it occurs suddenly and without warning or builds slowly over several weeks it often goes unnoticed by me until I am so irrational I have previously only been able to identify the psychosis after it passes.

This concept (and realization by me) has led to trouble on the second leg of mindfulness; withholding judgment of myself and my emotions.

When it comes to withholding judgment about what emotions I am experiencing, I thought I had that in the bag. For many years I would judge myself harshly and consider myself depraved or inhuman for some of the urges and thoughts I experienced (and still do, some of them daily) but over the last few years I have been able to step back from that and conclude that many (if not most) of these things are a product of my own mind playing tricks on me during periods of depression, mania, or psychosis. I thought that taking the step of realizing that these desires (born of the illness) are not my fault, and that being somewhat burdened by the unwilling desire to do bad things (you know, like homicide) doesn’t mean that is how I am going to live my life and it doesn’t make me a worthless human being.

Having revisited this concept several times in the last few weeks, I couldn’t figure out exactly what was bothering me about mindfulness and why I both seemed to “get it” and not “get it” at the same time. What I stumbled upon the last few days is that even though I am reserving judgment of my emotions in terms of identifying them in a self-deprecating way, I am not withholding judgment completely.

Because of the combination of the psychosis factor and the, well, less than desirable “socially unacceptable” thoughts and feelings I have put up with on a regular basis I have a track record of inexplicably doing things that I wouldn’t normally do. There have been times where, let’s face it, I have not had control of myself or my actions, and during those times I have done some things that have scared the bajeezus out of me.

Things like running away from home, or plotting to murder someone (hello hospital), or attempting to harm very cute, innocent, furry creatures (hello again, hospital). What I have learned from these experiences (and others) is that I shouldn’t trust myself, and that I am capable of doing things that frighten myself and others.

Even though I might be reserving judgment about the origin of these thoughts or actions today, my judgment is taking place in a different way; through fear.

And, well, we all know how that story goes. Fear leads to anger, anger leads to hate, and hate leads to suffering. (Thanks Yoda)

Personally, given my track record and the notion that any one of my swings could suddenly bring the overwhelming, incoherent madness of psychosis, it doesn’t seem unreasonable for me to feel terrified when my mood starts to shift or deteriorate. With every additional layer of emotion my reaction becomes more complicated, I begin jumping to conclusions out of a place of fear, and quickly go tumbling down the rabbit hole.

I find myself in the age old riddle; which came first, the panic attack or the anxiety about having a panic attack?

At this point I am not looking for answers from any of you, just thinking aloud. What I do know is that this fear is something that I need to address, and hopefully with enough applied reasoning (or voodoo) the fear and I can reach some kind of understanding.

No cute, innocent furry creatures were harmed in the making of this post.