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.

************************

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.

The It Notebook: Tuesday, February 1, 2011

Sorry I’m so behind on this!  I’ll catch up!  Soon!

Further adventures with It

Tuesday, February 1, 2011

I seem to have woken up with the physical sensations of It but not the mental confusion.  I dressed with ease and waited for it to get light out enough to give Puzzle her walk.  Unfortunately, confusion set in, and I knew Puzzle would have to wait.  My current rule is that I must be able to read and understand THOROUGHLY a paragraph of printed text.  This morning I made sure I understood an e-mail.  I have since changed this rule: I must fully understand four or five sentences (paragraphs can be too long) of a writer such as Hemingway.  No, I do not have to understand any deeper meaning or metaphor or symbol, only what is happening and what is being literally described.  Not Borges.  Not James Joyce.  Something straightforward.  And not tiny print, which is too difficult for me.  So I will do the “reading test” ever time just prior to Puzzle’s walks to be absolutely, 100% certain that my head is very, very clear, and if it is not, Puzzle will have to wait.  I worked all this out prior to leaving the hospital: she can effortlessly go 18 hours without peeing.  She I walk her late in the evening in case I am not clear at our usual walk time in the morning.  Today is the first day that she has had to wait.  Hopefully, this won’t happen too often.  I was able to walk her at 9:45, not at all unreasonable.  And Puzzle, dearest, completely understood, and forgave me.

NOTE: Looking over my records, I note that it is in fact the second day.  I suspect there will be more.

Excerpts from This Hunger Is Secret pubished online

Quay Journal has published two excerpts from This Hunger Is Secret: My Journeys Through Mental Illness and Wellness.

Here’s the link:

http://www.quayjournal.org/

Quay Journal also comes out in hard copy.

The first excerpt, “2008/1997/Going Back” is the epilogue.  It makes me cry every time I read it, for reasons I can never put a finger on.  The second is an excerpt from my chapter, “Locker #47.”  Why the chapter is called this…well, you’ll have to read the book!  This excerpt was actually my graduation reading!

Meanwhile, when I submitted these chapters, it was well before the book was published.  There were changes and edits I made in the rewrites.  I tried to catch them all.  Apologies if I did not.  As you know, I have been very ill.

Here’s the link to the publisher’s website where you can purchase my book:

http://chipmunkapublishing.co.uk/shop/index.php?main_page=product_info&products_id=1709

You may purchase it in e-book form now, or wait for the paperback to come out.

The It Notebook: Monday, January 31, 2011

My Continuing Adventures With It

Monday, January 31, 2011

L is right.  I am focused on my illness all the time.  That is…what did I say to my T, when she first asked me about my eating disorder?

IT FOLLOWS ME EVERYWHERE

So true.

Noon-12:20 ended because I fell asleep.

By the way, being focused on my illness–do I really have a choice right now?

I tried the “Puzzle Cure” firth thing after her walk but…eventually…discovered that I am only capable of Intensive Petting while experiencing It.  So, unfortunately, this may only work as PRN until I learn how to do this ALL of the time and not just as PRN.

It came at noon and I began Intensive Petting at 12:10.  After 10 minutes, It was still there, but I became overwhelmed with fatigue.  I set the alarm for 20 minutes later.  It did ring, that I know of, but I slept through it until 1:50, not 12:40.

It held off till 3:30.  Began Intensive Petting @ 3:45 for 1/2 hour with my eyes closed for most of the time and it didn’t work.  But I wonder if I am able to converse during Intensive Petting?  How am I going to find out?  Perhaps, when It is first beginning, ask L to phone me in maybe 1/2 hour.  I will, of course, explain this to her ahead of time.  Still, I am convinced that therapy will be a LOT more productive, even if my experiment with L fails, if Puzzle is allowed to come to my therapy sessions.  (How to transport her there???)  Another idea: Try speaking to Puzzle while petting her and see what happens.

It ended at 5:30 and then another one immediately started up.

How to transport Puzzle to therapy:

The Ride will only transport  service animals.  Probably this is the case with Medicaid cabs, but as for the latter, will a call the Medicaid from my T or Dr. P and a Dr’s note make Puzzle transport possible?  I need Medicaid cabs anyway.

The Result of the Puzzle Experiment:  I tried conversing with Puzzle while petting her during a time that I was experiencing It.  I find that Puzzle, although she doesn’t get me out of It, helps me organize my thoughts while I pet her.  I tried, at first, saying whatever came into my head first: Puzzle, I love you.  I said it again and again.  The words came to me fairly easily so I tried other things.  I was almost, but not entirely, positive that I was making sense.  I have no recollection of what we discussed.

Then, I had an idea.  I had to leave my T a message regarding our appointment time.  I gave it a try.  The phone was within reach, but my arm froze and I could not pick up the phone. I dialed her number and tried to leave the message, but although I was still petting Puzzle, the spell seemed to be broken.  I have speculated on the many reasons as to why this happened, but can’t exactly put a finger on it.

The It Notebook: Sunday, January 30, 2011

It started while I was attempting to plunge the toilet this morning.  Dang!  It was 7:45 and I had slept late–7am.  Was I capable of taking a shower?  I guessed that I was.  At worst, I would skip washing some body parts.  Somehow, I managed, but Puzzle’s walk would have to wait. I sat and cried–just a little–thinking about Dr. M’s coping skills lists.  she and I developed this list ourselves.  On the top of this list is…what was it?  I couldn’t remember.  I now remember: PRN.  I have a chapter in my book [This Hunger Is Secret: My Journeys Through Mental Illness and Wellness] about this list.  Appropriately, the chapter is called, “Pro Re Nata.”  I wrote in this notebook a little until It went away (I was behind).  This time, It went away at 10am.  I walked Puzzle.  Then, another one started at 11:15.  I believe this was while I was brushing my teeth.  At around noon, I experienced something that, in my history, started in 1997: mental torture.  It si during this phase of It that I am able to communicate but I am being tortured by It.  This torture would not stop.  I didn’t know what to do.  Finally, I called my T.  I told her I needed to speak with her right away.  However, she didn’t call me right away.  So I thought: What would she or my previous T say?  What is on my current coping skills list?  I do not have a list!

PET PUZZLE!

I was sitting on the couch.  I called Puzzle.  She came immediately.  She put two paws in my lap. I began to pet her. And I cried, and cried, and cried.  Soon, the mental torture was gone!  Will this work again?  I don’t know, but I immediately phoned my T again and told her that it was essential that I bring Puzzle to our sessions.  I told her that I would explain this to her at some point.  And because she will read this, she will know.  The occurred at perhaps 12:30.  Then, I went to the Psychiatric Service Dog Association website and sure enough, “tactile stimulation” is listed for every diagnosis.  I must say, she worked MUCH better than Haldol.  And instantly.

Later: It came back at around 2.  I was hardly aware of It until I started having trouble doing absolutely everything including writing.  The familiar head pressure was there, and tingling in my lips, but I had chosen to ignore it.  Well, this was now a problem.  I tried the petting solution again.  I petted Puzzle and kissed her many times.  It was a very intense experience.  I think it took a full ten minutes, but it worked–again!  Petting Puzzle seems to have helped with my eating as well.  I ate two eggs, 1/2 slice bread with cream cheese, an apple, and a glass of milk.  Oh, and I had soup for an appetizer, warmed in the microwave.  Pretty good.  Later, I had a cup of tea.  That’s more than I’ve had in over a week.

In the laundry room last night I thought very intensely about this: How long will It last?  What if It is permanent?  What does this mean for me?  It means my life will be very limited.  It means there will be so many things–including running–that I can no longer do.  It means I can never visit L again because I can’t navigate in an airport.  It means being severely limited in my abilities.  It means no National Novel Writing Month anymore.  It means never seeing my mother again, never going to any of my knitting goups, never going to weddings or funerals.  It means never setting foot in a classroom again (of course, there is always distance learning).  It means having a very limited social life.

Well, isn’t the one I have the most daily contact with none other than It?  It came three times today, for two hours each time.  All week it’s been practically all day long, once it starts.  My constant companion.

Isn’t Puzzle, too, always here?  Why did I not think of Puzzle?  Is it because Puzzle does not torture me, mess with my thoughts, render me completely disabled, and put me in dangerous situations?  Is it because Puzzle is the quiet nurturere instead, who subtly heals, dries my tears, mends my soul?  And why, why, do I so often take her for granted?  Puzzle has been totally awesome since I got home, in ways I cannot begin to describe.  And now, she heals in a new, brilliant way.  Or at least she did twice today.

Like I said, it is not regular petting.  I call it Intensive Petting.  I looked it up on the Internet and found a dirty movie.  Well, then, I guess I invented it.  It is a special, intense way that I learned to pet Puzzle out of DIRE NECESSITY.  words cannot describe how I do it.  So tomorrow, I’ll try an experiment.  I’ll pet Puzzle, Intensive Petting, every two hours.  I will get my watch to beep every two hours.  Puzzle will be thrilled.

Later: I just binged.  I wasn’t bad quantity-wise.  Just bad because bingeing is hell.  You might ask why I did it.  Well, I know  why.  It’s cuz I really, really, really want to go back to the hospital right now.  I guess bingeing was the only thing I could do to convince myself that I am so fucked up that I need to go back.  It’s obvious that I’m not likely to be able to manage well anytime in the near future…or ever.

The It Notebook Saturday, January 29, 2011

9am-9:55 55 minutes

Stopped by going to sleep, intending to take a “power nap,” but set the alarm wrong and napped over an hour, so woke up with the next It.

What happened: I went to walk Puzzle, and hadn’t gotten far when I notied the warning signs.  I knew I had about ten minutes before the confusion would begin.  So I had to get Puzzle in fairly quickly.  She went to the bathroom and It, meanwhile, seemed to be fading.  I cane in and the warning signs and even slight confusion seemed to be gone while I was feeding her.  It had held off on account of Puzzle!  Imagine that!  Then shortly after, it was 9am and It started full force.  I knew this because when I decided to boil eggs, I went the closet to find the eggs!  I wondered if it was safe for me to use the stove while I was experiencing It.  I promised myself I would be very, very careful, and it was only eggs, right?  So I did it.  It was so hard to do this and took so much concentration.  I KNOW I did it safely, but it was not worth the intense effort and concentration I put into the task.  I will no longer use the stove while experiencing It.  See notes.

Then, I tried to rest, but felt very restless.  I tried sitting both in my chair and on my couch and neither felt okay.  Finally, I decided to take a “power nap,” at 9:55.  Instead of waking up at 10:15, I woke up at 11:20, becasue I had the alarm set for 10:15pm.

11:20-?

woke up very groggy after a nap, then realized I had woken up with It.  I tried doing the dishes but had to stop when It got too bad, and rested.

Later, I don’t know when, I called 911.  I panicked about the head pressure I experience because It was over but the head pressure wouldn’t quit. I worried about my electrolytes being off.  I was really scared.  I grabbed my things–cell phone, wallet, bus pass, this notebook, a couple of other things including a pencil and clipboard and paper–right before the ambulance arrived.  I plan to write a full report on what happened in the ER in my blog [really, it’s not worth it because I describe enough of it here].

In brief:  I was treated with disrespect because I am a mental patient.  The doctor told me to take Advil for my headache.  I told him I do not have a headache this is head pressure. He said, then take Advil for your head pressure.  I said, it’s not painful, why take Advil?  And so on.  Then checked my blood work: normal.  The nurse, meanwhile, had given me IV fluids, saying I looked dehydrated.  I guess I wasn’t.  [She also asked me why I was so skinny, and I told her exactly why.]  They sent me home, and meanwhile, It was starting up again.  They did not bother showing me where the exit was.  [Nor did they ask me if I had a way to get home, or if I was safe to take the bus, or if I had a ride, or if I could afford a cab, or if I needed a cab voucher.  Nada.  Just set me loose from the cubicle.]  After a number of false starts, I found the correct door to get out of there, and found the lobby.  I have precious little money left this month, not enough, certainly, for a cab, so I realized I would have to take the bus home.  Easier said than done for a person who has It. It was obvious that I had just missed one bus (I saw one pass by) so I decided to use the bathroom, but couldn’t figure out which was the men’s room and which was the ladies’ room.  Finally, I figured it out, peed, and went out.  I flagged down the wrong bus becasue I couldn’t see out of my glasses (this is an ongoing issue, whether I am experiencing It or not).  Finally, the bus came. I stayed on till the end of the line and got off and walked home.  I don’t know when It ended.

Notes: After a while, I felt okay again, but fairly depressed.  I walked Puzzle and fed her.  Feeling a little more energetic, I did some of the multitude of dishes that have piled up in the sink and cleaned up some, then finally unpacked my suitcase from my hospitalization and vacuumed and mopped the floor and did laundry.  I stayed up very, very late.  I love the wee hours these days.

I have decided on a “ten minute safety rule.”  This means, do not begin any potentially dangerous activity while feeling okay that I cannot quickly finish in ten minutes.  This is the time it takes for the confusion to get really bad.  So I will not walk further than Watertown Square. I can boil eggs and cook lentils but I can’t cook rice.  Well, it is because of this that I have purchased a rice cooker/vegetable steamer from ebay.  I already have a water boiler.  Now, I do not have to use the stove at all.  Even if It ends soon, the item is useful to have, and it cost me very little.

[…]

Another thing…my first hospitalization in Vermont, in 1983, I was completely unable to speak at certain times.  Could this be something similar?

I will end here for today.