I am always so deeply sad

I am always so deeply sad and grieving
There has been so much loss since the race
I am not the person I was
Funny how life can change overnight

But there is one thing I want to say:
I grieve.  I grieve.  I grieve.  There has been so much loss
Since I left the hospital
And I have told not a soul
Or, shall I say, I have told horrendous lies
To a number of people
I do not want to feel.

I do not want to feel.
I do not want to feel.
I do not want to feel.
I do not want to feel.
I do not want to feel.

So I don’t.

It.

The “Feelings Box”

Bad things happen to me more and more.  I think it is because It causes them to happen.  People avoid me because of It.  You can see it on the bus.  It drives people away from me.  It scares people.  People anxiously pull their children away from me, frightened of It.  I have an odor I cannot wash off of me, no matter how hard I scrub myself in the shower, the odor of It.

It puts a knife into my heart and it breaks open and bleeds and bleeds all over my body and soul.  I have blood on my hands and I saw this blood when I was on the bus today.  It is blood from my broken heart.

I put my feelings, which I could no longer bear to feel, into a box today, closed the lid, and locked the box.  I brought the locked box to therapy and set the box on a table.  I explained to my therapist what was in the box.  She knew I couldn’t open it, not today, maybe not for a long, long time.  I do not want to feel.

I can control my feelings because It controls my thoughts.  Even when I am not experiencing It, this is the case.  I choose to control the small part of myself that I still have control over.  It owns the rest.

It makes me do things sometimes, too.  I cannot reveal the details of this to anyone right now…nor can I reveal the mechanism by which this takes place, or what, exactly, It makes me do.  Please do not try to guess, because you will surely guess wrong.

Today on the subway, I told myself I must always hide.  I told myself I should always have a long, bulky jacket to wear, even in summertime, to hide myself.  Last summer, I always hid my skinny arms.  Now, I must hide my entire body, even my face.  I must keep my head bowed, and keep my jacket zipped over my neck.

When I am influenced by It, I keep my eyes only one foot in front of me.  I cannot control this.  I bump into people.  This, of course, cannot be helped, either.  For these moments, and for other times, I have practiced and practiced the line, “Sorry, disabled.”  So I will say this if I bump into someone.  I have had to use the line…once…on the bus.  Lately, I haven’t been bumping into people.  This is because they are avoiding It.

In the subway on Friday, I was so afraid I’d go over the edge onto the tracks at the Red Line the other day that I ended up taking the elevator instead of the stairs.  Then I took the stairs out of the station. I had my line prepared: “Sorry, my voices are bothering me,” but I didn’t have to say this to anyone.  Then after I walked out of the station, I kept my head way, way down.

I keep my head down a lot these days.  Maybe it’s because I don’t need to see.  Maybe it’s because I don’t want anyone to see me.  Maybe it’s because seeing is believing.  Maybe it’s because if you look someone in the eye, it means death.

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If you’re interested in my book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness, see the upper part of the sidebar (on the right) and click on the book purchase link to see an excerpt.  This will take you to the publisher’s website.  The paperback will be coming out…eventually…not sure when.  Click here to go to my home site and see more excerpts.

Anorexia in the DSM-5

Here is the DSM-IV definition of Anorexia Nervosa:

A. Refusal to maintain body weight at or above a minimally normal weight for age and height (e.g., weight loss leading to maintenance of body weight less than 85% of that expected; or failure to make expected weight gain during period of growth, leading to body weight less than 85% of that expected).

B. Intense fear of gaining weight or becoming fat, even though underweight.

C. Disturbance in the way in which one’s body weight or shape is experienced, undue influence of body weight or shape on self-evaluation, or denial of the seriousness of the current low body weight.

D. In postmenarcheal females, amenorrhea, i.e., the absence of at least three consecutive menstrual cycles. (A woman is considered to have amenorrhea if her periods occur only following hormone, e.g., estrogen, administration.)

Specify type:

Restricting Type: during the current episode of Anorexia Nervosa, the person has not regularly engaged in binge eating or purging behavior (i.e., self-induced vomiting or the misuse of laxatives, diuretics, or enemas)

Binge-Eating/Purging Type: during the current episode of Anorexia Nervosa, the person has regularly engaged in binge eating or purging behavior (i.e., self-induced vomiting or the misuse of laxatives, diuretics, or enemas)

Here is the proposed DSM-V definition of Anorexia Nervosa:

A. Restriction of energy intake relative to requirements leading to a significantly low body weight in the context of age, sex, developmental trajectory, and physical health. Significantly low weight is defined as a weight that is less than minimally normal, or, for children and adolescents, less than that minimally expected.

B. Intense fear of gaining weight or becoming fat, or persistent behavior that interferes with weight gain, even though at a significantly low weight.

C.  Disturbance in the way in which one’s body weight or shape is experienced, undue influence of body weight or shape on self-evaluation, or persistent lack of recognition of the seriousness of the current low body weight.

Specify current type:

Restricting Type: during the last three months, the person has not engaged in recurrent episodes of binge eating or purging behavior (i.e., self-induced vomiting or the misuse of laxatives, diuretics, or enemas)

Binge-Eating/Purging Type: during the last three months, the person has engaged in  recurrent episodes of binge eating or purging behavior (i.e., self-induced vomiting or the misuse of laxatives, diuretics, or enemas)

Binge Eating Disorder in the DSM-V

I’ve just been to the DSM-5 website.  Here is their stated rationale for including BED as a diagnosis in the latest version of the Diagnostics and Statistics Manual, which is the manual used for categorizing patients:

Rationale

Binge Eating Disorder is one of the disorders in the DSM-IV appendix. It is recommended that it be formally included as a disorder in DSM-5.

The rationale for recommending inclusion of binge eating disorder (BED) in DSM-5 is based on a comprehensive literature review (Wonderlich, Gordon, Mitchell, Crosby, & Engel, 2009). Below we address several key recommendations offered by Kendler et al. as they apply to BED.

Consistent with Kendler et al’s recommendation for making decisions about diagnoses in the Appendix, the Eating Disorders Work Group addressed the question, “Should the BED diagnosis should be a) deleted from the appendix, b) promoted to the main manual, or c) retained in the appendix.

 

Synopsis of the Review of Validators.

The following comments are organized according to the structure of the table of validators provided by Kendler et al. (2009) and based on a literature review (Wonderlich et al., 2009). BED has been compared to both other eating disorders (i.e., anorexia nervosa, bulimia nervosa) and obesity in validational studies. Overall, BED distinguishes itself from other eating disorders and obesity across a wide range of validators, including high priority validators.

In terms of antecedent validators, there is evidence from family history studies that BED tends to run in families and is not a simple familial variation of obesity. Furthermore, in comparison to other eating disorders, BED shows a relatively distinct demographic profile with a greater likelihood of male cases, older age, and a later age of onset.

Regarding studies of concurrent validators, BED is also differentiated from obesity in terms of greater concerns about shape and weight, more personality disturbance, and a higher likelihood of psychiatric comorbidity in the form of mood disorders and anxiety disorders. Also, BED is associated with lower quality of life than obesity.

Finally, in terms of predictive validators, BED may be differentiated from other eating disorders in terms of its lower level of diagnostic stability and greater likelihood of remission.  In clinical course, BED also shows a greater likelihood of medical morbidities (e.g., self-reported weight gain and metabolic syndrome indicators) than is typically seen in other eating disorders, or in obesity. Finally, in studies of treatment response, there is evidence that individuals with BED have a more positive response to specialty treatments than to generic behavioral weight loss treatments in terms of reduction of eating disorder psychopathology.  These findings suggest some evidence of clinical utility of the BED diagnosis in terms of treatment selection; for example, antidepressant medication is useful in the treatment of BED, but is not generally useful in the treatment of obesity.

 

I wonder if

I wonder if my life is really worth living…the way things are now.  I try to just “be happy,” and I cannot.  Everything breaks my heart and my heart is broken.  It feels like my heart will never be fixed.

It feels like It has become an entity, a person, a thing, a force, a power, a presence, a being, someone who is always with me.  It has wants and desires, and is capable of acting, cruel acts specifically toward me.  It has the power to control my thoughts.  And that’s a lot of power.  I thought I controlled my thoughts.  Well, no more.

I would like to know

Over a period of time, my treatment team is likely to get very frustrated with me.  As my treaters in 1996 and 1997 ended up doing, my current treaters, too, may conclude that I am playing games, lying about my condition, trying to get attention, and faking illness.

Well, I am not.  This is real.  I am not lying, faking, playing games, or trying to get attention.  In 1996 and 1997, I was insulted that my doctors thought this of me, but given that my self esteem was in the gutter, I never told them this.  I simply complained and complained about The Thing, and begged them for help.  Since I was being treated for “faking illness,” and therefore being treated for the wrong diagnosis, I got no help…I was only kept alive.

If this happens again, I might as well can therapy.

It is real.  It is dangerous.  It…has completely changed my life.  I have a very sad life now.

Sorry, readers, to bother you with all this.

Further thoughts

It is pointless to write about the patterns of It anymore.  It comes and goes.  Once It is gone for the day, It is gone.  You never know when It will start, and when It will finish.  Sometimes I am lucky and sometimes I am less fortunate.  Sometimes, I will experience It three times in one day.  Sometimes, only once.  Once in a blue moon, not at all.

I do know that It renders me completely non-functional.  The only safe, productive thing I am capable of doing while experiencing It is to write, mostly in pencil.  And of course PET PUZZLE.

I ought to write a lot, don’t you think?

More thoughts

Most days, all I feel is despair.  I eat very little.  I have very little hope in my heart.  I have  glimmers of joy, but these are becoming fewer and fewer as time goes on.

It has been less than two months that I have been experiencing It.  They don’t yet know what It is.  They may not for a while.  And it looks like It will go on and on.

No, I am not “doing this to myself.”  Trust me, there are concrete physical symptoms that go along with the scrambled thoughts I experience.

As time goes on–it is inevitable–my treatment team will believe me less and less regarding the existence of It, unless It shows up on some neurological test.  The Thing didn’t show up on any test that was administered.  After a while, they decided that I was “faking it.”

I risked my life trying to get to therapy on public transportation yesterday.  It was raging.  I nearly walked off the platform on the Red Line at Central Square because I was so confused.  That would have meant certain death.  Not to mention having had to walk in traffic, cross streets, etc.  I actually told this to my therapist.  She obviously didn’t believe me.

Like my eating disorder, It follows me everywhere, and, like my eating disorder, It kills.

I do not like having a killer inside my head.

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View an online magazine, Quay Journal, that has published excerpts from my book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness.

http://www.quayjournal.org/ Check the table of contents.  There are two separate memoir sections of my work.

The It Notebook: February 4, 2011

February 3 I did not write in the It Notebook.  I slept all day long.  Literally.

Feb 4, 2011

I slept all day yesterday.  Missed my appt with my T. I woke up @ 11:30!  I now know why.  I had a bad reaction to DayQuil.  I did not read the warning.  It says right on it.  I am stupid, stupid, stupid.  You can read it on the Internet, too.  No antidepressants, and on the Internet–drugs.com–it mentions, specifically Effexor–raised BP.  Shit.  I was soooooo lucky.

Not only that, I shit in my underwear overnight…

Even at 11pm, I still felt lousy.

I ended up with It 20 minutes after getting up this morning, but was able to pass the Hemingway test, so I knew I was okay enough.  And in fact I improved considerably while brusing Puzzle’s teeth.  My former T has said many times that brushing Puzzle’s teeth sounded like such an intimate thing to do.

I know that It is raging right now.  I’m supposed to call someone at 10:15 hopefully I’ll be okay.  PET PUZZLE.

[…]

2 hours till I leave for therapy.  Hope I’m okay.

I can’t do math but I think I’ll be okay by 1pm.

Well, I wasn’t okay getting over there.  Long story that I don’t want to delve into at the moment.  Therapy was interesting and I wish I remembered more of what my T said.  Something about It serving a purpose.

It is 12:35 at night

I do not want to go on.

I am tired of my sad life.

Today, I posted on a service dog message board, and all they had to say was that Puzzle was aggressive an eventually would have to be euthanized.  First of all–not true.  Secondly–not supportive.  Thirdly–this totally got to me and I felt hurt and angry and I don’t want to go back to that board.  I don’t know what’s true and what isn’t anymore.  But one thing I do know is that Puzzle is not aggressive and what they said did more harm than help me.  I thought message boards were places where people were supoortive and kind and caring, especially message boards where the constituents have mental illnesses.

See, I try to reach out, and it is not working.

Guess I need to reach out elsewhere, like I did, six moths ago, when I met Frank.

All I know is how much I love Puzzle.

I’d better not go to that board anymore.

The whole thing is a bummer, though, cuz clearly, my SD idea probably won’t work out.

But what Puzzle gives to me and the love we share will always be here, and hasn’t wavered.  She cannot read words on a computer screen, after all.  She doesn’t let a message board get to her.  So why should I?

Meanwhile…My T implied today that It will be around for a good while.  Guess I might as well get used to it.

She talked about coping skills.

What is there to cope with?  Sadness and despair….

It is 1:30 in the morning.  I feel like I am already dead.  Because this is not living.  Fighting off It for the next year or so is a wasted year or so.  What the fuck happened to me?  I remember clearly when I had The Thing, and Joe got sick, his parents did everything they could to keep the two of us separated, because they blamed me for his sickness.  And so we both suffered separately.

But circumstances changed, and his parents lost their power.  We were together again.  I believe that this was around the time that The Thing went away for good.  Of course, no one believed me, at the time, that The Thing existed.  So they didn’t understand what a joyful thing is was for me when The Thing left me for good.

But……..

I am tired.  Sick of it all.

Just want to bury myself.

I guess bury myself in a grave and not get our of it.

But the ground is cold and hard, frozen solid in January and February.  So why would I find a grave so inviting?  Why does a frozen place seem warm?  Am I crazy?

Well, yes.

They say that when people are freezing to death they suddenly feel warm, and discard their clothing.

But I am not naked yet.

So there.

The It Notebook: Wednesday, February 2, 2011

Just to let newcomers know: I am publishing notes from my It Notebook, a notebook I have kept on It, the psychotic phenomena I currently experience.  It is possibly that It comes from seizures.  This has yet to be determined.

Further Adventures With…It…and Puzzle….

February 2, 2011 Wednesday

Well, that does it.  My mind is made up.  I’ve been doing some research and contacting some people.  Yes, I need a service dog, and yes, the best dog for the job is Puzzle.  Even if/after It goes away, I still need her…deperately…just to get out of the house right now, and will always need her.  This is long, long overdue.  So Puzzle and I will begin a new life.  Even if she does not pass the Public Access Test (she is likely not to)….I have this all figured out.

It didn’t come today.  I have a terrible cold that scared It away.

I know what scared It away.  I binged last night.  And I binged tonight.  My head is killing me and I was depressed all day even though I didn’t get It.  My life is completely unmanageable.  Most days, I have It all day long.  I just don’t wan to go on.