Friday, October 29, 2010

Intense


 Intense.  That describes some of my feelings right now as well as...

my new treatment program.

After a really bad week which surmounted in several long showers, far too much hand-washing, and a lot of frustration, I told my therapist that I felt like I couldn't keep going like this.  Something had to change.  I needed more help.  And what did he do?  He told me that if I wanted more help there were basically three options:  I could go to a residential treatment facility, I could enroll in an intensive outpatient program, or I could try something new - an intensive treatment regimen put together by him, his boss, and another therapist at my treatment center.  And I went with option number three.  It means several home visits every week and treatment in some form 6 days a week.

In short, it sounds AMAZING.

I am thrilled to have this opportunity.  Though it will initially take a toll on my wallet, it is worth it to have my life back.  I want this, and I'm ready.  I am going to try to be more compliant, work harder, and sit with more discomfort, because, with this new system in place, I only have to go 24 hours on my own.  I can do this knowing that the next day, no matter what, someone will be there to help me out and encourage me to keep going, to move forward to regain my freedom despite whatever doubts I'm experiencing.

There are things I didn't see myself doing again for quite a while - cooking, baking, cleaning, swimming, working out, working full-time, hiking, traveling, dating - in short, enjoying my life fully.  Now it seems like with this plan, I may get all of those things back sooner than I thought possible.  I am both incredibly excited and slightly terrified.  Living life like a "normal" person seems like such a foreign concept at this point, but I am looking forward to the uncertainty of the challenges ahead.  And I have a feeling there will be many, but I will have my life back.

I am so excited, but I can't tell you how nervous it makes me, too.  I've gone through a range of emotions since making the decision, but I know I'm not going to change my mind.  Simply put, it's time to face the uncertainty, which includes whether or not going with this program is the "right" choice.  I'm doing what seems to make the most sense with the knowledge I currently have.  That's the best I can do.

I'll try to chronicle my experience during this process here - not sure exactly how this is going to go or how I'm going to be feeling, but I would like to share some of the trials and triumphs of this process.

Despite I'll the anticipatory anxiety, I'm fastening my seat belt and getting read to dive right in...

Monday, October 25, 2010

Paralysis


This has been a rough weekend.  As much as I usually like to keep the day to day ups and downs of my progress to myself, it's been a rough couple of days filled with tough situations and some bad decisions.

Earlier tonight I just laid down on the floor and cried.  I didn't know what else to do.  I felt too dirty to lay anywhere else, so onto the floor I went, which sealed my fate - at that point I was "contaminated" in my mind, beyond all repair.  I would have to shower.  Again.

But at that point I just didn't feel like I had the strength left in me to face showering.  To do anything.  Paralyzed in my "dirty" state I just laid there and cried as quietly as I could, hoping none of my housemates could hear.  I couldn't get up.  I couldn't sit anywhere else.  I couldn't touch anything.  The only place to go from there was to wash my hands and then shower.  And yet it just seemed too difficult.  Too dirty touch anything.  Too mentally worn down to face washing.  So I lay, tears beginning to roll down my face sideways, while I covered myself in a coat that I would feel compelled to wash later.  I was stuck.  Brought to a halt.  Paralyzed, by OCD.

It's times like that that I wish one of two things could occur.  First I wish crying brought a feeling of release, of comfort, of catharsis, like it used to.  It does no such thing anymore.  Gone are the days when just letting myself go made me begin to feel better.  Nope.  Nothing there.  I cry.  I try to let out my pent up frustration, to give myself permission to be fed up and feel it, but I try and there's nothing.  I feel numb a lot these days.  But all I can do is continue to put one foot in front of the other, pushing ahead.  It sometimes feels like I'm trying to run through mud.  Each step I push and push and push, but it brings me only a little bit farther forward.  But what else is there to do?  Standing still and resting brings me no comfort, so forward I push, wading my way through each day, some of which are better than others.

Second, I wish I could sleep.  As I lay there on the floor this evening, I just wished I could drift off so that I could have a break, a reprieve, from having to decide what to do.  Awake I just felt dread.  I could shower, or I could try to fight my OCD.  But I didn't want to have to think about either option.  Both seemed like too much to face.  I just wanted to be unconscious so that I didn't have to confront the dread of knowing I would have to eventually have make a decision or the dread of facing the various OCD hurdles when I did.

Eventually when it became clear that just lying there wasn't going to provide any sort of reprieve - not by way of sleep, not through tears, and not in the form of just plain relief that I could procrastinate making any sort of decision - I eventually faced what seemed to be the only option.  I got up, prepared to shower, and then did.  And it was long shower.  And I felt I was at the mercy of my OCD constantly.  But I just didn't feel like I could lie there and feel the dread any longer.  I couldn't wait for my resolve to fight to return because lying there doing nothing and drawing no comfort from it was too awful.

This is why I hate OCD.  It can leave you so utterly trapped that you can't even seek comfort in the most basic ways.  I am reduced to lying on the floor, attempting to warm myself with a coat, all while trying to cry or sleep so that I just don't have to think or feel.  And when that doesn't help, all that is left to feel is dread - the dread of standing up to OCD and violating its mandates on the one hand, or the dread of taking orders from OCD and performing compulsions ad nauseam on the other.  Both options seem terrible.  Both options make me just want to hide until I somehow find the strength to face one or the other.  And when the dread just becomes too much I get up, give in, and bow down to the will of my mental disorder for a chance at some peace, even if I know that giving in means that peace will only be temporary.  Because as terrible as the compulsions seem, not doing them seems worse.  I will get there though.  I will get to a point where I am willing to face that challenge and fight back so that the peace I feel is more than fleeting.

In the meantime I continue to just put one foot in front of the other, and one foot in front of the other again, chipping away at the demon in my head, slowly weakening it while strengthening my own faith in my ability to fight back.  I will get there.  I will.  I have before.  And I will again.

Friday, October 22, 2010

In the News


I was excited to come across this article on childhood mental health on Time magazine's website, an article that does a good job describing sexual orientation OCD, how it all too often begins at a young age, and how it can affect the sufferer over the years.  The reason I was so excited and surprised to see this type of OCD mentioned and intelligently explained was that, all too often, OCD is portrayed in a fairly one-dimensional manner by the media.  We hear all about the stereotypical washing and checking compulsions, while other forms often get ignored.  OCD can latch onto almost anything that we deem important in our lives, and the corresponding compulsions are equally infinite.

As more types of OCD are given attention, perhaps more people will understand that OCD is not really about being a germophobe or being afraid of setting the house on fire.  It's about uncertainty and the strong desire to eliminate it; that's what unites all sufferers with the disorder - a pursuit of certainty that reaches unhealthy proportions.  As the article points out, the treatment for OCD, cognitive-behavioral therapy, teaches the sufferer "to embrace uncertainty rather than fight it."  Nicely put Time.  Nicely put.  It's unfortunate that the media's ability to get it right is so exciting, because it just brings into sharper focus the fact that this usually isn't the case.  Perhaps I just read the wrong sources, but it catches me off guard when I read something in the general media about OCD that does more than thinly veil the shallow understanding of the author.  Thank you, Time, for getting this right.  And thanks for using a less-frequently publicized form of the disorder to make your point, too.  Hopefully with more articles like this, people with the disorder will be diagnosed earlier, so that they can get treatment closer to the onset of their symptoms and be spared the kind of long-term suffering this article describes.

There was one other thing that caught my attention in this article that I wanted to explore.  To illustrate the effect that mental disorders can have even at at a young age, the author describes a girl who began to battle the symptoms of sexual orientation OCD sometime in her pre-teen years.   It was nearly two decades later that she finally figured out the cause of her suffering and got appropriate treatment.  I found it interesting that they mentioned how this girl, "like so many other adult sufferers of childhood-onset emotional disorders," is now "at last enjoying peace," but also "grieving the decades she lost to her condition."

That last bit caught my attention because I think I struggle with my own desire to grieve the time lost to OCD.  A lot of times I wonder if I even have the "right" to grieve my past with the disorder.  It seems presumptuous, like I am suggesting that I suffered in a way that other kids, teens, and young adults didn't.  I am lucky in many ways, to have what I have and to be able to live the life that I live.  But within all that was good there was also the darkness of suffering from OCD, a suffering strengthened by the very isolating fact that I didn't know what caused my distress.  Can I grieve this loss without seeming ungrateful for all the wonderful things I DO have in my life?  All the good things I HAVE experienced?

I hope so.  My desire to be "allowed" to grieve what has transpired in my past is not for the sake of lamenting, or regretting, or wishing I could change things.  Rather it's the desire to be "allowed" to acknowledge and believe and accept that yes, I did suffer.  I did experience something painful and saddening that others my age did not face.  I want the "right" to believe this.  Not the right to say that my suffering somehow trumps the painful things that others experienced, but merely to acknowledge, to recognize, that I did experience growing up differently and suffered in a way that others might not have, because of my disorder.  I want the right to see that and own it in a way that is hard for me to currently let myself have.  I don't know if that makes much sense.  I feel like I am having a hard time capturing what I mean, but that seems to be the best way to describe it.  Seeing that others feel they have the right to acknowledge their experience with OCD as something difficult, something worthy of grieving, helps me begin to understand that maybe, just maybe, I have the "right" to do the same.

Tuesday, October 19, 2010

OCD? Who me? Nah...

This guy's fooled many a fruit loop-bearing hiker or cheetoh-offering friend into thinking he's a chipmunk...but we know the truth tiny rodent...someone forgot their face stripes and WE know that he's just another squirrel like the rest of them.  Now get your paws off my shoe!!   And while you're at it, go wash your paws before eating anymore food begged off unwitting strangers!  What an audacious (and filthy) little fraud...I bet he didn't wash after using the restroom either ;).
This morning I woke up after a particularly long night of sleep only to be greeted by my good old friend, more commonly known as the "fear of not really having OCD and somehow faking out the world as well as my self..."  Umm, yeah.

The exposures for this sort of fear, as I have mentioned before, are the same as my usual exposures - do my homework successfully, because, if I can do my OCD homework successfully, then I must be a "fraud," right?  I mean, if I can do my exposures no problem then there's no way I could have OCD for real - at least that's what OCD wants me to believe!

The problem is, I don't always do my homework successfully all the time.  And because OCD likes to bring any and every detail to my attention that might give its argument some weight, it definitely doesn't miss this little snippet of information.   OCD adamantly waves this fact in my face, and I enter into its game, which is never good.  The best way to beat it is not to argue with it in the first place.  That doesn't go anywhere good.  I can point out distorted ways of thinking, but that's not usually what happens in the moment.  In the moment I am desperately trying to prove OCD wrong, to gain some sort of foothold against it when really I should just walk away.

So anyway, in trying not to engage this fear today, I think I have inadvertently been fueling it.  Without realizing it, I am trying to fight back.  To prove it wrong.  To gain some sort of certainty or proof that I am not, in fact, a "fraud."  When washing my hands, for example, I run into this fear.  Normally I have a very pre-determined pattern and sequence for washing my hands.  Some days I manage to do it all at once, making it to the end and stopping without starting over.  Other times, I make it through part of the sequence, have a thought that I might not have done the preceding steps or may have done them "wrong," and I start over and over until I feel "sure" or until I remember that feeling "sure" is next to impossible and not what I should be going for.

Usually, when I am able to make it all the way through in a minimal amount of time, it's because I let pass all the thoughts of, "Wait did you really do that step?"  "Did you skip that entire section that you thought you had already done?"  "Better start over."  I make to the "end," per se, mostly because I don't respond to these thoughts.  I don't let them affect my behavior.  I remember that my goal, in that moment, is to just move on as much as I am willing to, without feeling "sure" about things being done "right."  Logically I realize that washing my hands "right" is probably no better, no more cleansing, than doing it "wrong,"  But I try not to beat myself over the head with this fact, because then I just get anxious about why I won't stop washing excessively, even if I know it doesn't matter, even if I think I don't feel "anxiety," and even if it is taking a clearly detrimental toll on my life.  Because, when I get anxious about that, then I have an even harder time trying to stop.  For whatever reason, whether it makes any sense to me or not, it must cause me discomfort on some level to not attempt to do things the "right" way.  It might even be because I have OCD ;).

My point in describing all this is that my consistency in fighting my OCD changes all the time.  Some days I am better at accepting feeling unsure than others.  Some days I do well in limiting the amount of time spent washing.  Other days are not as good.  So, when on days like this, when I feel the fear of "oh my, I must be misleading everyone, even myself, into believing that really have OCD," I panic and compulsively try to determine whether or not I am doing "too well" or if not doing a certain ritual, a certain step "really bothers" me.  And of course, like checking for any other feeling, checking for my own discomfort makes that feeling harder to identify.  I end up scrutinizing everything I do, thinking, "Wait would I normally be okay with that?  Would I normally feel like I could take that step and fight back against OCD in that situation?  Or would that be going too far for me usually?" 

Trying to determine what I would "normally be okay with" is impossible because it changes from day to day.  Not only that, only doing what I would "normally be okay with" takes any chance of fighting my OCD and progressing away from me.  As I try to err on the "safe side," to dispel the fear that I am not a "fake," I end up doing WORSE in fighting my OCD than I normally would, because normally I WOULD fight back to a certain degree.  But when this version of my fears comes into play, it knocks the ability to fight back right out of my hands, because in anything I do, in anything I attempt that involves my contamination fears, OCD can recall a time or an incident where I would not allow myself to fight back in that situation.  It presents that to me as the reason why "I can't fight back now" because, according to the OCD, if I do fight back in a situation I may not have always fought back back, it becomes proof that that situation may not "really bother" me and the act I have putting on is exposed.  "I must be a fake," OCD says, if I can't feel anxiety where I think I should or where I think I have in the past.

This is very confusing.  I think I'm even confusing myself in trying to put the insane logic of my OCD into words, for myself and anyone else who attempts to read this convoluted explanation of the even more convoluted things that go on in my head.  But if I or anyone else managed to follow along with all that, the result of the anxiety caused by my "fear of being a fraud" and my attempts to determine what I would "normally be okay with doing" leads to an overly-cautious approach to fighting my OCD.  Even if I have often been able to stop this compulsion or that compulsion, if there have been times where I failed, OCD points to those times and says, "Hey, you wouldn't normally be okay with that!  But now you are thinking about not doing that compulsion?  What, you aren't even sure if not doing it would even bother you?  What's wrong with you?  You must be a fake. FAKE, FAKE!  I caught you fake!!!! FAKE!"

And then, confronted by this anxiety, I cave.  I do the compulsion just to be on the "safe" side, because at one time or another I have felt that I "had to" do it and felt that "couldn't resist" even if resisting was part of my exposure homework.

OCD is brilliant - it cuts off my very will to fight back by using any success as proof that it must not exist, that I must be making all this up, that I must be sort of terrible con artist who should just "stop acting already" and "face the real world."  Someone who should stop "playing games" and "get back to work" in order to "support herself and take care of the responsibilities that we all have to grow up and take care of eventually."   I fear that "it's time to stop messing around.  That it's time to face 'the truth,' to go on about the daily business of life like everybody else, and to stop avoiding it by trying convince myself and everybody else that I can't because I have OCD..."  And these thoughts cause anxiety, and in that anxiety I turn to what I know - compulsions, relinquishing what progress I have made in "fighting back" because I am afraid that any ability to challenge my OCD is proof that it does not, that it cannot exist.  That it's all an act.  And that I have a responsibility to stop doing all compulsions right now and get back to living a normal life.  And if I don't stop doing all rituals right now, as I should be able to since it's an act, I am just evading life.  I am shirking my responsibilities because I have convinced myself that I can't "just stop" because I have this mysterious thing called OCD.  And I fear that if I just tried "hard enough" I could snap back to reality from the "delusional" OCD world I have carefully constructed, the finely-constructed illusion that I have a disorder that I don't really have.  If I just "tried harder" to see it, I would realize that I don't have OCD at all...

So what should I do in this situation?  Trying to identify how much I would "normally be willing to fight back" is problematic for the lengthy reasons already listed.  I suppose when I am terrified by the "lack of discomfort," I should deal with that anxiety like I would deal with anxiety from any other source - that is, to push myself to accept as much anxiety about being a potential fraud as I can handle, and to leave it at that.  Trying to do more or trying to identify "how I would normally do things" only causes more distress.  And that distress backfires in the form of greater compulsivity.

Whew.  I think I know what to do now!  Maybe trying to figure out how to face this type of anxiety is just yet another compulsion.  But of course, that would be assuming that I even have OCD in the first place ;).

Saturday, October 16, 2010

OCD Stories


As many probably already know, the International OCD Foundation hosted an event tonight called "OCD Stories:  An evening of reflection, humor and education about OCD," and anyone with an internet connection could watch from the comfort of their own home via the above link.  It all began at 7pm EST.  The night consisted of several speakers with each telling stories about their experiences with OCD.  Some were doctors or mental health professionals.  Others were sufferers themselves.  But each related their own examples of how OCD has affected their lives and the lives of those around them.

I did in fact watch these stories, and plan on writing more about that later, but I wrote most of this post in advance, reflecting on how I felt about this upcoming event - what I was experiencing prior to watching.  That said, these were my thoughts and feelings about watching, and the ideas that followed from them:

When I see or hear others' stories about OCD I usually have a really mixed set of emotions.  Part of me is curious - I want to know how OCD has impacted others' lives.  Part of me is excited - will I hear someone capture beautifully, through their words and expression, my own experiences with the disorder?  Will their stories resonate with me?  And finally, part of me is anxious, and I'm not exactly sure why.  I think perhaps it's because I wish I could tell my own story in the same way they are telling theirs.  Ever since finding out that I have OCD, I have sort of clung to this diagnosis with an unnatural tenacity and vigor.  It suddenly seemed to explain EVERYTHING.  The things I have learned in treatment seem indispensable to living a happy, peaceful life internally.  I am left wondering, why are not raised with this knowledge?  How do others find peace without it?  I feel like finding CBT and mindfulness has been almost a religious experience for me - suddenly I feel like I have the key secrets to keeping my mind in check, to happiness itself, and I sometimes marvel at how others, indeed most, live their lives without ever knowing these secrets.  Indeed, I didn't for nearly two decades.

Perhaps those without OCD don't need CBT and mindfulness.  Perhaps they naturally self-regulate in a way that my mind, and other OCD minds, don't.  Maybe these tools really are to an OCD sufferer what insulin or diet regulation are to a diabetic - outside aids that compensate for impaired biological self-regulation.  Either way, I feel as though these tools are essential to my well-being, tools that I have lived without for years, years during which my quality of life was compromised, to a certain degree, because my mind would run rampant and unchecked while I struggled to find ways to make up for this deficiency.  With resources like exposure and response prevention and mindfulness, as well as an understanding of OCD, I feel as though I am finally armed.  My mind can run rampant this way or that, urging to me respond or not respond in a certain way, and I now know that no response is necessarily necessary, if you catch my drift.  If my mind says, "You must do this!" Or, "You must do that!"  I know now that isn't necessarily so.  Before OCD said, "Jump!" and I jumped obediently to preserve the peace of my inner world.  What I didn't realize was that my internal comfort wasn't actually in jeopardy until I obeyed.  The very act meant to preserve a feeling of "rightness" inside me was the act that had the power to abolish all sense of that feeling.  So I am left wondering HOW did I live for so long without knowing this?  How do those without OCD live fulfilling lives perhaps without ever being introduced to the tools used to fight OCD and keep it in check?

Like I said, sometimes I feel like the self-discovery and life-changing nature of finding these tools and learning to use them might almost be on par with what some people might feel when finding religion.  In this case, I found mindfulness and CBT.  Mindfulness allows me to recognize that when OCD says "Jump!" that I don't have to.  Even if I don't jump, my inner world will find its way back to equilibrium.  Jumping, compulsing, is not necessary.  I don't have to force feelings to come or go.  They will fall into place, if I stop meddling with them long enough to let them.

CBT and ERP are like the second line of defense against my own tendencies.  If I forget to be mindful (and well, it's hard to be mindful if you didn't even know what mindfulness was, in the first place, much as I didn't before my big relapse), and begin to drift further and further into the world of compulsions and distorted thinking,  cognitive-behavioral therapy and exposure and response prevention help lead me back to baseline.  Once back on target, I can again help myself stay on the main road by being mindful of my behaviors and the reasons for them, being careful to watch for urges to perform compulsions in response to obsessions, so I can catch myself before I go too far astray.  Mindfulness is like a preventative measure keeping the OCD in check.  CBT and ERP are the treatments that help return me to better mental health when things begin to get out of hand.

Again, I am left wondering how do "normal" people live their lives without these tools?  They seem so essential.  Yes, I lived a decent life before I had these resources, but to live a fulfilling life that isn't constantly veering left and right, yo-yo-ing turbulently under the fickle will of OCD, it seems necessary to have these weapons in my arsenal.

But maybe everyone doesn't feel this way.  Maybe most people find themselves self-regulating, staying on path without veering too off course, without having to employ these methods.  Back to the diabetic analogy:  "healthy" people don't have to take insulin or be as careful about what they eat as diabetics, but then healthy people make and respond appropriately to this blood-sugar regulating hormone.  In terms of OCD, "healthy" individuals may not have to be so mindful of their thoughts and behaviors.  They may not have to employ CBT or perform exposures from time to time to keep their minds in check, but then maybe they do this naturally, whereas those who suffer from OCD must rely upon supplemental tools to perform the same functions.

Anyways, my own life story seems riddled with the influences of OCD, a discovery that I have only made fairly recently, one that makes the necessity of mindfulness and CBT seem all the more apparent.  And when I hear others tell their own tales of OCD experiences, I yearn to tell my own.   I yearn to talk about how the tools I have been given to fight my OCD bring me so much internal peace and hope.  How they seem to offer a degree of stability and independence previously unknown to me, a life raft to grab onto until the storm passes and a lesson on how to swim so I can keep myself afloat in the future.

No more cautiously enjoying the good weather, wondering when the next OCD storm will blow through, toppling my life and tossing me overboard.  No more hanging on for dear life as I wait out the wind and the rain, wondering if and when the sun will shine again.  Now I know what to do when the weather gets rough, when OCD starts trying to pitch me about on its choppy seas.  There will still be some days that are worse then others.  There will still be clouds, rain, and winds that sometimes eclipse the sun and make conditions less than favorable.  But when those times come, I will no longer be defenseless.  I will know how to handle the storm, how to wait it out in a way that doesn't exacerbate and prolong its impact.  The point isn't to ensure that I never find myself in a downpour again, but rather to learn how to deal with one so that it doesn't have to be devastating, or even problematic, for that matter.  The point is to learn how manage less than favorable conditions when they arrive, so that I make it through to the other side as safely and smoothly as possible.  And learning to do this will not only make those bumpy times less difficult, but will also make the more tranquil days that much more peaceful.  Knowing that I have the tools I need to keep myself on course, as well as the the problem-solving strategies I need when I do get blown off track, makes those good days that much more enjoyable.

I no longer have to live in fear of the next storm, and I now know that constantly trying to ward one off is not only unnecessary, but what tends to lead me into such storms in the first place.  Over the years, especially this last one, I have veered further and further off course with OCD at the helm, but I am slowly finding my way back with my newfound tools to guide me.  And these tools seem so essential to living a fulfilling life that I marvel at how I was never taught them much sooner.

Wednesday, October 13, 2010

Getting By


There are weeks where I really just feel like I am moving forward for the sole sake of moving forward.  Step by step, inch by inch.  This is one of those weeks.  I am finding that even the simplest of things are starting to feel like monumental tasks again - brushing my teeth, making my bed, washing my face, getting dressed.  Even writing here, which is usually quite enjoyable, seems somewhat like a task I must goad myself into doing.

I think a lot of it has to do with the ups and downs of progress in fighting my OCD.  As I get better there are periods where I really challenge the thoughts I have and the urge to perform compulsions.  I feel free and alive.  The shackles seem temporarily removed.  And then I get used to that level of freedom.  It is no longer exciting, and those chains that still remain seem like an even heavier burden to bear.  What suddenly seemed easier with less weight to carry, starts to seem harder again.  There are still a lot of barriers to overcome, and the excitement and energy of overcoming the previous one has faded.  The memory of my triumph is disappearing as I stare down the next challenge and feel helpless in its presence.

I have started to go backwards in hand-washing and showering, meaning that both are getting longer in general.  And this is despite the fact that I have been able to eliminate a lot of compulsions that previously went into both of these forms of washing.  I don't wash my hands in the shower anymore; I don't do "pre-washes" prior to my "real hand-wash" when I feel my hands are extra dirty.  But somehow, even with certain steps like these eliminated, the remaining compulsions expand to fill the empty space and beyond.  The initial victories that cut back on the overall time it took to complete these activities are quickly, and almost imperceptibly, replaced with something else.  One step forward, two steps back.  I'm feeling tired.  Just existing and getting through my very non-busy, non-stressful life at this point sometimes seems like it takes all my effort and motivation.

I have faith that I will get there.  That I will get to a point where I don't feel like each step forward takes all my energy, all my focus.  There are ups and downs all the time.  There will be more ups.  And there will also be more downs.  I just have to keep moving forward.  I may feel like I am trying to run up an escalator that is going down, but eventually the direction of movement will change.  I will no longer feel like I am moving backwards by default, moving back to start every time I take a break to catch my breath.  Things will even out.  I will find that I can keep up with the pace of the world moving at me.  And eventually I will feel like I am on a moving sidewalk, where, with each movement, I am propelled forward farther than I expected, gaining momentum to tackle life.

Wednesday, October 6, 2010

Money Matters


Though I have been looking for part-time jobs and have some promising prospects, I am gradually becoming a little bit more nervous about my financial situation.  I have savings - gifts from relatives from over the years given for holidays and birthdays, extra savings here and there from summer jobs.  I was a relatively frugal kid/teen and my parents took care of paying for my food/clothing so I didn't need to spend a lot of money.  But now, well, I am paying for almost all my expenses, BUT I don't have a job!

On the one hand I feel like I should consider myself lucky - I don't have student loans to worry about paying back like many of my friends.  Scholarships greatly reduced my college tuition and my parents could afford to pay the difference and were kind enough to do so.   But even though I don't have to worry about loans, it's hard watching my savings gradually disappear - mostly to rent and health insurance and the cost of therapy.  Rent is sort of an unavoidable expense as long as I want to live on my own (and as long as I want to remain close to my friends and therapist).  Health insurance is also a necessary and unavoidable cost.  And that leaves therapy - oh, therapy.  And I start to wonder, should I be cutting back?  Am I working hard enough in treatment to warrant going so frequently and spending so much?  What if I don't deserve it because I don't make enough of my frequent visits?  Cue guilt and anxiety.

My therapist is definitely inexpensive as far as therapists go, and though insurance is not accepted, I can submit payment claims and my health insurance will reimburse me for part of the cost.  Though the amount that insurance pays for mental health related expenses is probably far from on par with that paid out for "regular" health expenses, in the grand scheme of insurance, my coverage and reimbursement is amazingly generous.  (Isn't that messed up?  The fact that mental health coverage is often so limited that, even though my rate of reimbursement is probably less than that provided for "normal" care, it still seems amazing?).  Yes, I probably could have found somebody in network.  But could I have found someone in network who specializes in treating OCD?  Kind of unlikely.  And trust me, I tried - or rather the frustratingly ignorant employee health social worker I first sought help from tried.  He searched to find someone who specialized or had experience in treating OCD for me, and even he had difficulty locating anyone in-network who definitively treated the disorder.  By the time I had gone to see him a few times and by the time he offered me referrals of questionable expertise, I was so desperate that I couldn't wait any longer.  I went out of network because I didn't have anymore time to waste.  My quality of life was deteriorating so fast that I needed help ASAP.  (The limits of mental health coverage, as well as the lack of knowledge about OCD even among mental health professionals, are both topics that probably warrant whole separate blog posts.  I'll stay off my soap box for now...).

Anyways, I have to eat.  I have to have a roof over my head.  I need health insurance (and it helps pay for my therapy costs), so that leaves therapy and the bothersome worry of whether or not I am working hard enough to warrant going so frequently and spending as much money on it as I do.  Throughout the fall and spring I was not only going to therapy up to 2 times/week, but I was also sometimes paying for home visits, which were always incredibly helpful, since the my highly nuanced and home environment-specific contamination cues were sometimes hard to accurately capture and develop exposures for in the office.  Once I went on disability (I used to have a full-time job) because I wasn't getting better at a rate fast enough to maintain the duties of my job, I switched to 1 session/week for a while, but I often found myself getting stuck between sessions, making no further progress until I could address those problems at my next appointment, and sometimes getting worse in the meantime.  So I am again going twice a week.  But I still wonder...do I deserve this?  Do I need to find a way to push myself more to warrant going so frequently?  Do I really need this?

This is all compounded by what are probably other OCD fears (fears that I have discussed with my therapist now and then as they have waxed and waned in the background of my primary contamination concerns) like "What if I am intentionally avoiding getting better?"  When I still had a job, it was sometimes, "What if I am just trying to get out of work and am making this all up (the OCD, that is)?" Or, "What if I am not putting as much effort into getting better as I should be?"  And occasionally it has been, "What if I just like talking to my therapist and am just going to hang out and talk?"  And now it is, "Am I really working hard enough to continue going twice a week, even if I feel like it probably helps?"  Or, "Am I intentionally prolonging my OCD and not trying harder to get better because I am afraid of working full-time again and/or like having an excuse not to?"

I'll be honest, OCD and OCD treatment have kicked my ass.  Not only that, but I have a hard time judging and understanding whether I am getting better reasonably "fast enough" given the initial severity of my latest OCD episode and the fact that I have had untreated OCD for most of my life.  I am used to judging myself through comparison.  I have looked at the progress/achievements of others to gauge my success for far too long.  Given the obvious reasons of confidentiality and the fact that everybody's OCD is different, I don't really have a strong benchmark for comparison (which from an OCD standpoint, is probably a good thing - comparing yourself to others to determine your relative success is usually more problematic than helpful).  This leaves me wondering if I am progressing "fast enough" or if I am working "hard enough."  My therapist often tells me that he could be going harder on me, but without being able to compare myself to others - the difficulty of their assignments and their rate of compliance - I have a hard time understanding what this means.  So sometimes I wonder, if I could compare my success or lack thereof to that of others who are still struggling and seeking treatment, if I would be more motivated to work harder.  I don't like feeling like I am behind and I like being able to keep up with others, but maybe not having others to compare myself to is good practice in just accepting uncertainty and doing the best I can.  I'm not really sure what to think.

That said, I like going to therapy frequently not only because I still need a lot of help and improvement in the area of my current OCD issues, but because finding out about my OCD - giving a name to this thing that was always there directing my choices and actions - has really changed how I look at what I do and why I do it.  There are so, so many things I want to work on and talk about and do to make my life better.  I am genuinely excited at the prospect of the all positive life changes I could make now that I know that I have this disorder and now that I have a really insightful therapist who makes me want to overcome those challenges and live a better life.  Maybe I am foolish and naive to believe that so much can be or needs to be changed, but I feel like the general approach I have taken to life was so heavily entrenched in OCD and perfectionism that I have a lot of room for improvement, a chance to really positively influence my quality of life.  I really like going to therapy for all of these reasons - there is so much hope and excitement in it, but then I wonder if I am going too much, if I am really working hard enough in between my sessions to warrant the expense.

Tomorrow will mark one year since I was finally diagnosed with OCD and entered treatment.  It was a monumental moment in my life.  Since then so many things about me - past and present - seem to have fallen into place, to suddenly make sense.  I am so, so, so much better than I was this time last year, but honestly I thought I'd be better a lot sooner.  It has been a long and difficult fight during which I have often questioned my motivation and work ethic.  I am a generally dedicated and hard-working person, so it is strange to me to not yet have conquered this nasty and most recent episode of OCD.  Because I am not used to having something kick my ass like this, I tend to question whether I am working hard enough, if my heart is in the right place, and if I am going to therapy for the right reasons and the right amount of time.  It's a tough one.

I like to think of the money I'm spending now as an investment in my future - the more OCD tricks I can learn to fight now, the less suffering and unnecessary loss I will face in the future.  I try to tell myself that I deserve to spend this money on myself, even if it is a considerable expense that further eats into my savings.  I genuinely feel like it is a really positive influence in my life, but will there ever be a point where I will feel like I actually need less therapy?  Or do I need to start weaning myself off even if I don't feel ready, even if I still have a lot of things to overcome, because there will always be more OCD no matter what and because there may never come a time when I want to go less?  It's a difficult one indeed.

The guilt, the constant self-questioning, and doubt surrounding this subject is sometimes pretty bad and can raise my anxiety, making my other OCD concerns harder to fight.  And then when I don't fight as hard to challenge my OCD, I start to question my devotion and the effort I put forth into getting better (even more than I was before), and around and around I go.  Writing about it here helps though.  It aids me in sorting out my thoughts and recognizing why I feel guilty or unsure in the first place.

Monday, October 4, 2010

Buried Alive


Some days I feel like I have somehow managed to bury myself by means of excessive avoidance and procrastination.  When I don't have things I HAVE TO do or HAVE TO be at, it is hard for me to find the will to do the things I dread - to shower, brush my teeth, clean, etc.  Even when there are places I had planned to go or things I had planned to do, there are times when the consequences of missing those things still isn't motivating enough for me to face the dread they stir up.  And so my life is put on hold, tasks accumulate, and time slips by as I sleep the day away or search my computer, numbly looking for something to entertain me, something to fill the time until I muster the courage to go face what I'm avoiding.  


I seem to go through cycles.  First there is the dread that arises when I either actually need to do something or when OCD says I need to do something.  Usually it goes something like, "I can't do x until I have taken care of z."  But whatever "z" represents is something I unfortunately dread.  Like a lot.  And, as a result, a whole list things represented by "x", things I would like to accomplish and complete, get put off until I can summon the courage or motivation to do "z."  With so many things prohibited until "z" is done, I am left with options like, "Sleep until you finally feel like doing 'z'."  "Sit on your computer and look for something entertaining to distract you from your dread and frustration." Etc.  Etc.  Hey, that's what I'm doing this very instant - avoiding the things I dread while hoping that, through describing this experience, I find the motivation to overcome that dread and just go do what I need to do.


Most often "z" is showering.  I have an unnatural dread of it.  And sometimes I don't understand how everyone else in the world seems to shower on a regular basis without complaint.  I realize that my showers aren't exactly like the average person's shower, but even so, the monotony of it has always been a point of frustration for me, even before I showered extra-compulsively.  When I consider things like showering, making my bed, washing dishes, cooking, walking/biking to class, dusting, vacuuming, cleaning...life begins to seem like the endless repetition of the same things over and over.  As soon as you get it all done, it's time to start all over again with the first item on the list.  Thus, I've dreaded doing many of these things at one time or another.  And because I am so averse to completing these tasks in a world where people seem able to keep up without complaint, I feel like I am a "lazy" person, someone who just needs to learn to do what needs to be done and get over it.


I think this is where some of my fear of becoming a "lazy" person comes from.  I feel like if I let myself take even one non-compulsive breath of fresh air,  my careful construction of a world where I am "as clean as" or perhaps "cleaner" than most will fall apart and my true nature will be revealed.  So it's a constant internal fight - make the bed, do the dishes, shower, brush your teeth, do laundry.  And OCD says, "Well, if you don't, well, your lazy nature will show itself.  You hate doing all of these things at times, and you are weak for occasionally complaining about or dreading these chores.  Why can't you just accept that they are part of life and do them on schedule like everyone else, without avoidance?  It's probably because your parents didn't make you do them enough as a child.  And, as a result, you are inherently spoiled and lazy, and you must always fight the tendency to take on those characteristics.  If you don't, everyone will always look at you or treat you like you are over-privileged and don't know how to work hard.  Because you know deep down, that's what you are.  That's your handicap - you know you're a spoiled brat.  That's what's wrong with you.  So suck it up and got do 'z' already and fight the person you know you are but don't want to be."


That's how OCD addresses the situation.  But just saying "suck it up and go" is sort of like telling a child struggling with a math problem to just "do the damn problem already and stop being so lazy."  It creates discouragement and frustration and fails to address why the problem still hasn't been completed.  When I berate myself for being "spoiled and lazy" when I feel a sense of dread and a desire to avoid a certain task, it's kind of like punishing the confused child for not finishing his math homework.  You can yell and scold all you want, but that's not going to make the issue go away.  Inside I have become the authoritarian parent of myself, yelling and scolding and punishing when I don't manage to do what I feel I should do.  But all that yelling and screaming doesn't help.  It just makes me feel like I really am lazy and that the only way to overcome that laziness is through constant self-flagellation. 


It doesn't help when others feed into this belief that I must be lazy and inherently bad, which sometimes happens when they assume that I don't do things for the same reason that they don't.  And, because I tend to be a vicious, angry critic of myself rather than a comforting refuge of self-advocation and support, I agree with those people rather than perhaps trying to understand why it is that I find certain things difficult to do.  People might assume that I don't make my bed because I am lazy, and it is far easier for me to just agree with that assertion and beat myself up than to come to my own defense.  It is what I have done for years and have thus come to believe what others say, or even what I merely assume that others might think.  I feel helpless, condemned when I fail to meet my pre-determined standards.  And thus, I beat myself up and push myself harder to run away from feeling like I am lazy.  To somehow prove to myself (more than to the world) that I am not bad, not spoiled, not lazy.  I finish my "math homework" even if my difficulties with it are left unaddressed.


One thing that I often fail to recognize is that different people do different things for different reasons, and that, if such chores carried the same personal significance and demanded the same exacting standards for them as they do for me, they might also avoid showering, cleaning, etc.  If others felt that every wrinkle left in the sheets, any short-cut taken while washing dishes, any inch of skin missed while showering, could be powerful  indicators of their personal defectiveness, they might be less than eager to face these activities, too.  As expwoman of Exposing OCD put it in her recent post, Anxiety in Disguise


"My therapist emphasizes that if someone had my fears of what would happen, they wouldn't want to do things either. I fear if I make a mistake, I will be a failure, worthless, and my defectiveness will haunt me forever. So yeah, that might make avoiding doing anything somewhat appealing!"

Remembering this when someone questions why I avoid certain things, helps me support rather than degrade myself further.  Even so, their remarks still hurt in ways they don't realize.


For example, while in college I once complained to my roommate about how difficult it was to change my sheets and how I hated doing it.  I had a loft bed at the time and getting my bed made perfectly could easily half an hour or more if I had to do it alone.  Even then I wasn't really satisfied but eventually relented and tried to accept that it was "good enough."  And usually I would avoid sleeping under my comforter or under my sheets for a few days after making it, hesitant to destroy the product of my laborious efforts.  One of my other apartment-mates had the same bed, and I made the mistake of asking my roommate a question, a question I now view as a plea for permission, an excuse not to have to put so much effort into making my bed.  I was basically seeking reassurance that I was not a bad person for hating making my bed so much.  But instead instead of getting the type of answer I was hoping to get, an answer that would allow me to forgive and go easier on myself, I got "Oh, she just wouldn't complain about that sort of thing."  In my mind, I heard:  "She's not like that.  Even if it were difficult, she wouldn't complain, because she's not a complainer.  Suck it up.  Other people don't complain even if this is difficult, why do you?  If you are frustrated and feel the need to complain, to look for permission not to make your bed so perfectly, just do it anyway.  Other people do.  Stop being so weak!"



Even then I recognized that my supposedly saintly non-complaining apartment-mate didn't try as hard as I did to make her sheets look "right."  In fact she probably spent about five minutes making her bed.  She probably didn't complain not because she was better than that, but because she didn't really have a reason to.  Looking back, my roommate's failure to recognize what was going on, how her answer stung and made me feel even more trapped in self-hatred, makes me angry.  She was my bull in the china shop, crashing violently around within my sensitive world.  And she wasn't just passively knocking things off the shelves either.  Her answer was the exact thing I didn't want to hear, the answer that translated into, "What's wrong with you?  Why can't you suck it up and not complain?" in my mind.  Without realizing it she had lifted a piece of china in her hands and thrown in as hard as she could against the hard, cold floor, causing it to fragment into a million painful shards.


What I have realized from many such experiences, and later, from treatment, is that I have to find a way, as hard as it is, to be my own self-advocate, to not rely as much on what others say or do to interpret my self worth.  They don't always realize how their actions, their words can sear into my mind and direct my behavior.  It's kind of like looking for reassurance.  If I am constantly waiting for people to say, "It's okay, you did the right thing."  Or, "You put plenty of effort in, that's good enough," I will always feel like I am bad and lazy because OCD is always there degrading the value of my own opinion and even questioning the meaning of favorable things other people may say.  OCD will always be there discounting the positive and emphasizing the negative, if I let it.


Of course, finding out that I have OCD has been a huge help in this battle.  I can now recognize how it has molded and shaped my approach to so many different things.  I can see why certain comments people made were so frustrating, why I struggled so much under certain circumstances.  It all falls into place.  And knowing that I have this disorder does make it easier sometimes.  Instead of berating myself for my frustration or overly-emotional responses, I can take comfort in knowing that I struggle with certain things not necessarily because I am weak or lazy, but because I have a disorder that can take even the most subtle thing and turn it into proof of my inferiority or failure as a human being.  Recognizing this and forgiving myself for being upset makes it easier for me to overcome being upset in the first place.  

As I have learned in therapy, if I have feelings about feelings, it's probably OCD trying to jump in and complicate things.  It's alright to be angry, it's alright to be frustrated, it's alright to be sad.  It's even alright to be anxious.  It's not a crime to have feelings, and I don't have to immediately eliminate them.  In fact, it is extremely difficult, if possible at all, to directly control our feelings (or our thoughts for that matter).  But what we can do is direct our behavior, our reactions to these feelings, and as a result, make them better or worse.  Berating myself for feeling a certain way or trying to make myself feel "right" by eliminating a certain feeling has never worked very well, and perhaps this is why.


To tie all this back into what I experienced this weekend - prolonged avoidance of showering and, as a result, failure to do many of the things I wanted to do - I can apply all that I have mentioned to this situation.  I could berate myself for being lazy, for sleeping half my time away, and sitting on the computer for much of the remainder of it.  Maybe my reasons don't matter.  Maybe it is lazy, maybe it isn't.  But the best way to overcome this hurdle is not to internally yell and scream and beat myself up, but rather to do my best to forgive myself, to try to recognize why I find it so difficult, and look for ways address these problems and encourage myself to tackle those things I dread.  Even if others don't understand, even if they can't, I know why I find certain things difficult.  And, if I can bypass OCD long enough to just to let myself consider reasons other than "I'm lazy and spoiled" (as hard this seemingly small step is), I can address some of the reasons for my avoidance and find ways to make things like showering more do-able.  


As strange as it may sound, being easy on myself is often the harder route.  It is easier and more automatic to condemn myself, to label and berate my character.  It may sound cheesy, but forgiving and working with, rather than against, myself, takes more courage, more strength, than assuming that I am a failure.   I have taken the latter route for a long time, allowing it to direct my actions and choices, to bully me into doing all sorts of things compulsively just to prove that I am not lazy or inherently weak.  The way I have approached task has all to often been designed to fight those feelings rather than actually productively and efficiently complete the chore at hand - whether it be making my bed, washing dishes, or doing my homework.  I wasn't really doing any of these things when I did them compulsively; instead, I was using them as a shield, trying to defend myself from the OCD critic in my head.  What I didn't realize then, was that, if I lowered that shield and braved my enemy's fire long enough, I might just find out that the perceived threat was not a threat at all, but mere bluffing on the part of a defenseless enemy that had no weapon other than the fear I gave it.  But to find that out, I would have to take the chance of not knowing.  That's the hard part.


Anyways, being kind and working with, rather than against, myself, is a strategy that I need to remember more often when I find myself feeling buried under layer upon layer of "failure."  Instead of waiting for someone or something to finally dig me out, all while feeling helpless and defective, I need to remember to work with myself, recognize what my goals are, and to understand the level of discomfort I may have to endure to reach that goal.  And if I find myself struggling to face that discomfort, I need to work with myself so I feel more able to face it, rather than beating myself up for my failure to do so.


And that is what I am going to try to do right now.  I need to shower.  And I hope to coax myself into overcoming my dread to face what I need to face.

Friday, October 1, 2010

Interesting OCD (and Related) News

So, I've been meaning to do this for a while, but never managed to actually put it together.  Just like I enjoy reading others' blogs and learning about their experiences with OCD, I am also somewhat addicted to learning as much as I can about the disorder in general - I love reading about some of the latest news and findings on OCD, and have also read several books on the disorder and related topics.

In college, I studied neuroscience, and though in the short time since I graduated I have forgotten much of what I learned, I am still fascinated by the brain and its functioning - both on the biological level, as well as on the more behavioral side of things.  Add OCD to the mix, and I get abnormally excited when reading about some of the latest research and clinical studies on the disorder.  Of course, I like reading about OCD because it has a strong element of personal significance, but when I find that things I learned in school help me understand what we do know about the biology of OCD and the various methods of treatment, I absolutely LOVE it - and I kind of need an outlet for my uber geeky enthusiasm.  So, I thought that now and then I'd compile a list of some of the more interesting links I have found.  Sometimes there isn't a whole lot out there at a given time, but we'll see how this goes!


An interesting article on some of the additional positive outcomes one woman experienced after she chose a neurosurgery procedure to treat her severe, treatment-refractory OCD.  While DBS obviously isn't a practical way to address most cases of OCD for a number of reasons, I think it's absolutely fascinating that this technique could shed more light on the biological underpinnings of the disorder.  (Side note:  in college I wrote a research paper on the use of DBS for treatment of Parkinson's.  I became fascinated by this procedure after learning that it was sometimes performed at a hospital I worked at.  Needless to say, I am intrigued by the possibility that DBS may also be of use in treating very severe OCD.)

10 Common Myths About Obsessive-Compulsive Disorder

I'm sure many of you with OCD have run into a number of misconceptions about the disorder - both in person and in print.  I like that this online article sets the record straight on some of the more common misunderstandings.  It's a nice primer on what OCD is NOT.

Soft 'patients' Dub and Lilo help mental illness sufferers in the Skegness area

A cute idea.  Plus, I have an innate weakness for all things small and fury.

OCD Gene Produces Compulsive Behavior in Mice

While it's still a big leap to make conclusions about the biological basis of human behaviors based on mouse studies alone, research, like the that summarized here, helps us get one step closer to identifying the underlying biological factors of OCD in humans.  This is a nice straight-forward synopsis of the findings of a collaborative study involving the Ansary Stem Cell Institute and the Department of Psychiatry at Weill Cornell Medical College.

Pro-Eating Disorder Websites: An Unhealthy Influence

I definitely have a bone to pick with these types of websites (as I'm sure many people out there do) because I certainly saw them when I was going through my eating disorder period, and all they did was confuse me more!  They pulled at my OCD heart-strings by suggesting that choosing to starve oneself was a "lifestyle" choice more so than a disorder.  I can now see how OCD jumped all over this with thoughts like, "Wait what?  This is a 'lifestyle?'  If other people choose to do this, if other people think this is a way to live, how can I not live up to their levels of deprivation?  Maybe I am lazy/a failure for not being able to live up to their 'lifestyle' standards..."  Obviously these websites can cause distress to the already ED/OCD-laden mind, and apparently they can affect non-ED sufferers as well, as summarized on this mental health blog.

Who recovers best from eating disorders?

This is a link to another summary provided by the author of the blog Mental Health Update.  Here he mentions a study performed to try to identify characteristics associated with better recovery from EDs.  I would be intrigued by similar studies done for OCD.  Who knows?  They're probably out there!  Maybe I'll have to have a look.

Abnormalities in brain histamine may be key factor in Tourette syndrome

A study found that, in one particular family, a genetic mutation affecting the production of histamine may be linked to the development of Tourette syndrome.  This disorder is often considered part of the "obsessive-compulsive spectrum disorder" family, and many who suffer from Tourette's also have OCD.  Though researchers do not believe that this particular genetic mutation is a common cause of Tourette's, the effect this change has on the nervous system may shed light on the neurobiology behind the disorder.

Alright, that's enough for now.  There are more even more recent articles I've come across that look interesting, but if I keep adding on I will never actually finish!  There's always more to do, more to read, more to think about, but if I wait to act until it's all done, I will never get anywhere!

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