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?


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!


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.


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.

The It Notebook: Friday, 1/28/11

I am going to copy parts of the It Notebook here.  Where explanations are needed, I will give them.  Occasionally, I will edit things out.


Friday, 1/28/2011

10:55-2:55 4 hours

No Haldol because all I have are the crappy generics.

[note: They gave me blue (or was it green?) Haldols in the hospital.  My local pharmacy gave me orange Haldols.  The pharmacy’s Haldols don’t work very well, so I don’t bother taking them.  I had been taking Haldol PRN for It and the Haldol worked very well inpatient.]

What happened: It came just as I was getting ready to leave the house to see my T.  I had been so confident and convinced that It would never return [I hadn’t gotten It for the entire day Thursday] that I had not taken a Haldol at 8am.  It was so hard and confusing to get ready and pack my belongings.  I managed to get to my appointment okay.  The most difficult part was when I couldn’t find the exit from the Red Line train when it arrived at Park Street.  At my T’s waiting room I wrote a quick note explaining that I was experiencing It.  I couldn’t figure out how to fill my water bottle so I left it empty.  Our session was difficult.  It was, at times, hard to tune in to what my T was saying, and at other times I could understand completely.  Either way, her words went by too fast for me.  My thoughts were not right and I could not express myself properly.  I was fully aware of this but could not control my thoughts.  After a while, It began to lessen, and I was able to speak a little.  It is weird how scary it was, but I wasn’t the least bit afraid.

After our session, when I got into the station, the train overshot the platform a little, and I nearly walked over the edge, onto the train tracks.  For some reason, I wasn’t freaked out by this. I just accepted it.  It was completely gone at 2:55 when I got home.

3:30-4:15 45 minutes

I just sat quietly drinking a cup of coffee until It went away.  I sat very still.

5:45-6:30 45 minutes

I decided to try sitting quietly again.  It worked.

Notes: I have decided, based on my last two experiences with It, that I need to be left alone while It is happening.  I plan to make a large DO NOT DISTURB sign that I can hang on my door.  I will call the housing manager and let him know that housing personnel (repair guys, exterminators, etc) should not enter or knock when the sign is displayed. I will give a brief explanation.  He is a very kind man who cares deeply about his tenants.  We are lucky to have him.

IT BREAKS MY HEART TO DO THIS, but I printed out ths application for The Ride [the “handicapped” transportation system–it is a door-to-door service that transports people who can’t take regular public transportation] about an hour ago and filled it out.  My responses were completely honest, and it is obvious that I need this service.  To one question, I responded, “Neither I nor my doctors know what it is at this time.  At times, I am mentally confused and have trouble with my balance.  I cannot stand in a moving bus.  I cannot safely walk to the bus stop.  I cannot safely navigate in a subway station.”

From now on, I will carefully observe PUZZLE.  I will see if she shows any signs (whimpering, sniffing, looking uncomfortable, etc) before It comes.  Today, she jumped on me.  She never does that.  If she can “tell” me, then this would mean a world of difference to me.  I do know know what time it was that she jumped on me, though.

I need to temporarily suspend my gym membership.  I have to find out how to do this.  It is not safe for me to run on a treadmill right now, or be around potentially dangerous equipment.  I HATE NOT RUNNING.

I need to get the flight insurance form to Dr. P.  [I had been planning a trip that I had to cancel because I was in the hsopital, but had insurance on the tickets.]

I will have to do [the online grocery delivery service called Peapod] until I can get The Ride.  I see no other way.  I can also safely use the convenience store, and walk to Watertown Square, and just walk home quickly if I sense It coming.  I’ll have time.

I can’t walk Puzzle anywhere right now because of the snow.  When the snow is gone, there are a variety of routes we can do that allow us a chance to quicly get home if It starts.  I NEVER take Puzzle out when I am experiencing It of course not!

How do I feel about all this?  Why am I not angry?  Why am I so accepting of my fate?  Is this old sickness of 1996-97 so familiar that I have just fallen back into this old pattern?  The truth is, there is no way to fight it.  I have tried walking it off.  I have tried doing tricks in my head to keep my thoughts from jumbling.  It is like trying to put out a house fire with a flyswatter.  It can’t be done.  L says, “Stop embracing your illness.”  Well, fuck you, L.  Tell a cancer patient to stop embracing his tumor.

I must have pushed my feelings deep, deep inside me, because right now I probably have this inner anger that this horrible thing has happened to me.  I do not feel that anger, though, but it must be there.  How could it not be?  Maybe it came out when one day I said “fuck you” to a staff person at the hospital.  Well, she deserved it [for treating me like a child and very condescendingly], but maybe it was a little of this anger inside me that caused me to swear at her instead of just turning away.