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.