Monday, October 15, 2012

Not Quite Normal

Audiology appointment today.  First time in months.  Not what I expected.  I thought the CI levels would be "turned up," but -

Okay, this might need a tutorial.  See I have a remote that goes with the CI. A currently missing remote which I hope I tucked into a drawer at work and just overlooked Friday while searching for it because I turned my room and both cars inside out and cannot.find.it.

By the way, my sister would NEVER lose a remote this important.  Ever.  I wish that I had one-tenth her ability to be organized.

Come to think of it, my brother probably wouldn't lose it either.  Now.  He might have in high school, though.

Whoops.  Jumped track there.  So on this remote are different levels and situations that my CI can be tuned to, all with the push of the button.  Back in September when I was feeling like things were not loud enough (and knew where my remote was!), I actually switched it to setting 3, which was the highest of the settings available at that time.

Turns out setting 3 is pretty dang near normal hearing levels.

When GOA tested me today, I was hearing lower frequencies within the range that someone with "normal hearing" would.  Higher frequencies are peskier especially for me since my hearing loss is much worse in the higher frequencies, and he did turn up those just a smidge, but he didn't mess with the lower frequencies.

Nevertheless, what I really need, he said, is just more time.  And time.  And time.

Don't get too excited about these "normal hearing levels."  That just means I can distinguish the presence of a sound at decibel levels that a person with normal hearing can detect, it does NOT mean I am understanding sounds or voices like a hearing person is able to.  I'm not even close to that.  Read on for a better idea what I mean.

BTW, speech reading = lip reading.  I grew up using "lip reading," but as I learned in my deaf ed classes and by working with GOA, the term has shifted to "speech reading" to give a better idea of the depth involved because it is really not just lips that are being read, but many aspects of the face.

Anyway.

GOA tested me with very random sentences.  I mean these things were R.A.N.D.O.M. One might be something like, "Her sister struggled with anorexia", and the next one might be "How dare you think I am a spineless wimp!"  Yeah.  Like that.

He read about 15 or 20 of these suckers under 4 conditions (and the sentences changed with each condition; they were not repeated).  First was CI only (no speech reading).  Second was CI and hearing aid (no speech reading).  Third was CI, hearing aid AND speech reading.  Fourth was speech reading only (no sound).

With CI only, I understood 5%.

With CI and hearing aid, I understood 11%.

With CI, hearing aid and speech reading, I understood 97%!

With speech reading only, I understood about 32%.

You gotta keep in mind, too, that words like "I" and "You" counted.  They probably made up 1/2 of what I understood with the CI and hearing aid.  So that is pretty low, but I guess it might help people understand what is going on with my brain.  You also gotta consider that this was a controlled test.  You put me in the outside world, with all that background noise, and all the numbers will drop.

So I have a long, long way to go.  It is pretty exciting though, when these random noises coalesce into recognizable words without the advantage of speech reading.  It's not happening a lot, but it happened 3 times on Friday.  Yep, I counted.

I don't really know how I am feeling today.  Tired.  GOA mentioned how much energy it takes for people going through this to "hear".  It really, really does.  I'm tired.  I'm still struggling mentally, but I don't really want to talk about that today.  My last entry was like a mental vomit.  I don't want to go there right now.

Wednesday, October 3, 2012

Round and Round

Hard to believe that just about a week or so ago, I was marveling at eggshells plinking into a trashcan.  I want to be that Carolyn again.  I hate being this Carolyn.  This is what bipolar is like, folks.  Going from joy to despair in a matter of days.  Sometimes a matter of hours.

I was trying to think of a way to describe "this Carolyn" and when "down in the dumps" popped into my mind, it made me think about what a disservice descriptions like that do to people who suffer from bipolar disorder or major depression, as if there is a deliberate wallowing going on.

There's very much a "pick yourself up by your bootstraps" mentality that many people have towards these illnesses, which is as ludicrous as telling a cancer patient to take an aspirin and get a good night's sleep.  I'm not making light of cancer here, lest you take it that way.  I lost my grandmother to cancer.  I lost one of my best friends to cancer.  My mom is lucky to be a breast cancer survivor, but several of my good friends have lost their mothers to cancer.  I would never, ever make light of cancer.  Instead I'm just despairing of the cavalier attitude and ignorance, oh, so much ignorance, that many people have about mental issues.

I read an article not too long ago (sometime in the last year anyway) and I wish I could find it to link to it.  This woman had suffered from bipolar disorder for decades and she said, "It's not that I won't be happy or don't want to be happy, it's that I CAN'T be happy.  My brain isn't wired that way."  I read it and was like, "Yes. This."  

I actually felt a feeling of relief that someone out there was able to put it into words.  I want to be happy.  Doesn't everyone?  But it feels like most days it is a struggle for me to even be functioning. The wiring in my brain is screwed up.  We don't know how or why.  It does not run in my family.  We have speculated before that maybe having meningitis could have altered my brain chemistry to that extent.  Little research has been done about a possible correlation although I did uncover research that links CNS (central nervous system) infections in childhood to a slightly increased risk of schizophrenia in adulthood.  If that is the case, I wouldn't imagine it would be a big leap to bipolar.

All I really know is that it is a terrible way to live.  I have bipolar II which is a "softer" version.  Lucky me.  All that means is I don't have true manic phases, but instead I have hypomania which can manifest in many ways.  For me it is usually anger, racing negative thoughts, fear and anxiety.  The depressions, though, there is nothing softer about the depressions.  They are soul-suckers.

Women with bipolar II are more likely to have substance abuse issues than the average woman.  Yep.  Women with bipolar II are more likely to have weight issues and obesity than the average woman.  Check.  It's the self-medicating.  For years it was alcohol.  When I got sober, it became food.

It often takes years for bipolar II to be correctly diagnosed because it often manifests more as major depression, so psychiatrists are more likely to treat it with anti-depressants and anti-depressants often make bipolar II worse.  So years to get diagnosed and sometimes years to get the medications worked out, if you ever do.  

And the side effects from the medication are often horrendous.  Many days I feel like a barely functioning zombie.  I'm so tired all the freaking time.  At the same time I'm angry.  It's a weird combination as anger implies some sort of negative energy, whereas fatigue implies no energy at all.  

My anger usually turns inward and I want to self-harm.  I used to be a cutter.  I shouldn't say used to be, really, as it has only been a few months and I fight the urge frequently.  I know how crazy that sounds to almost all of you, but the best way I can describe it is that it is an external release of internal pain.

I'm scared.  Looking back over the last few years, it feels like my depressions are increasing in frequency and strength.  For each major depression you have, the odds of having another increase.  By the time you have as many as I have had you are just about doomed to have more.  Your neural pathways are, pardon my language, fucked.

I remember talking to my psychiatrist in early June.  I had a depression from about February to the end of June.  He said, "You are going to get through this.  You always do."  I replied, "Yes, and then another one will come along."  He didn't know what to say to that.  It's a horrible feeling to speak that awful truth and have your doctor not even know how to reply.  He knew I was right so really, what could he say?  I will likely have another and another and another until I die.

Don't look at me differently for this.  Don't treat me differently.  If you see me at work or at the gym, don't look at me with pity.  But don't judge me either.  Please.  I'm doing the best I can.