Are you able to continue working?  Are you able to keep track of paperwork?  Can you read?  Are you able to drive?  Do you ever feel as though the “real” you is aware of your confusion and behavior but is unable to change it leaving the “real” you embarrassed and dismayed?  If these questions are too intrusive, please correct me.

Citydog 100

Your questions are not too intrusive !  I think you put your words together so well in describing a KLS episode.  I can definitely relate.
I still don’t work outside the home.  I seem to manage an episode at this point in our family life because children are older.  However--
no bills get paid,laundry piles up. I get dinner ready for my husband and kids and I’m in bed in a coma like state. Yes, my real self is very aware
of my confusion and behavior.  I am very much aware when I would be doing something normal like hanging out with my family.  I’ll lay in bed and feel so
out of touch with what “normalcy” I’m used to functioning in.  I’m better now w/embarrasing situations.  But I had a incident in the grocery store.
I shouldn’t of gone out. I seem to lose cognitive and/or motor skills as well.  I was at the meat counter ordering and this older gentlemen was
waiting on me.  He handed me roast and said something.  It sounded like he said “kiss Me”!  The store was noisey and I responded w/"kissyou"?
I couldn’t really hear him.  Anyway he got defensive and said something about his wife wouldn’t like it. I was so humiliated.  I said I didn’t hear him
correctly. If I wasn’t in an episode I know I wouldn’t have had this happen.  I could barely write the check at the register, because signing my name
felt tricky[my handwriting changes} and also writing the amount of $ and using numerals also tricky!!??
Anyway after the grocery I vowed I would never venture out again and prayed the whole way home that I get home without falling asleep.
I forgot to mention earlier that I actually got lost going to the store!! I should gone home then.  Akaila

Hi, your description of your episode is quite good.  As far as I can understand, my post-hospitalization KLS symptoms unfolded within larger cycles.  I began one cycle in 1970 (at 24), a second cycle in 1990 (at 44) and if I am right, I will begin a third cycle this year (at 64).  I feel as though what you have described were exactly my circumstances during the second cycle.  During the second period, I was still able to somewhat function around my impairment.  For example, during the first cycle, I couldn’t drive at all because I was just too confused and lost.  I could drive during the second cycle, but like you, there were times when I just got lost - but I could still follow the rules of the road and so on.  Of course, during a sleep episode, I didn’t drive. 

By the beginning of the second cycle, I had two children and what would be considered an active, normal life.  However, all went boom.  The worst part was completely losing my sense of humor and feeling that I simply could not cope.  I already knew that if I kept quiet, most people would not notice that I was just passing for normal.  I had a job that allowed me to continue working, but I do know that without that specific set of circumstances, I would not have been able to “pull it off”.  As it was, I remember hiring a Kelly Girl to help me catch up on the filing because I literally could not figure out how to put things in alphabetical order.

At home, my children were older and my husband was working at home so at least work got done, but I felt very guilty that I couldn’t be more a functioning part of the family.  I would basically get home from work and go to bed.  During the less intense parts of the cycle, I would do as much as I could.  I remember describing to a dr. how hard it was (if not impossible) to even mop the floor.  However it was clear that my busy psychiatrist had no sympathy.

My first cycle contained most of the really embarrassing or humiliating public behavior.

I GET STUCK in that UNREALITY stage.....the sleeping days are only about 3 strung together a month....THIS UNREALITY LASTS FOR MONTHS AND MONTHS.....8 months at the longest....in these months I float in and out of varying degrees of UNREALITY.....In any 24 hour period, I ALWAYS get at leas a 15 minute break from this UNREALITY state, before floating back in.

My speach is slow, my head swims, I hold my hands out in front so I fall, or bump into things. INTELLECTUALLY, I FEEL DRUGGED.....I have the mental capacity (I’m told & I agree) of a very, VERY slow 3 year old.....people say I appear “fall-down drunk”, though I DO NOT DRINK.

Sometimes people stare, or make fun,because of it.... Sometimes people are extra nice to me.

HERE IS AN EXERPT FROM MY DIARY that MIGHT help you understand :

The earth had slowed down HOURS ago. The ground was moving, my head was thick and my ears hurt. Everything was strangely interesting, I was happy, despite the pain in my head...I smiled and waved hi to strangers. In bits and pieces I saw the “theres something wrong with her” look on peoples faces...a little girl stared at me with wide brown eyes, and drew closer to her mother...she kept staring, she was clinging to her mother now...I wanted to tell her, “Its ok, Its just KLS”....but I couldn’t remember what words I should use....PLUS, deep inside I knew there was a reason I shouldn’t, but I couldn’t remember why...I tried not to run into people. I wasnt going that fast. Boxes on shelves were BRIGHT,strange,fascinating colors. There were markings on the boxes. I knew these to be words. But it was complicated, hard, and way too difficult without a fight. People were speaking to me & it was hard to understand. Everything was swimming.

“RELATIVE A” was trying to reign me in, and “RELATIVE B” looked mad. Why did I think that? Theres no way to know 4 sure what another person is thinking....I floated in & out of various states of consciousness. ...MY HEAD WAS SWIMMING, & there was a nauseous, dizzy feeling. Maybe I should eat something. I weighed the risk of ‘getting in trouble’ for my bad table manners, with the possible relief food would bring to my body & mind. Go for it. My hands were not working well...I ate a yogurt we had just paid for by tipping the container back and letting it fall in my mouth. I finished the rest with my fingers.

..........................END of DIARY !!!!!

with LOVE,
Sunshine

PS.....

I left out the PERSONAL parts....YES. I get HUGELY embarassed, but I’m learning this:

PEOPLE’s REACTION to MY KLS has MORE to DO WITH THEM, ....NOT ME !!!!!!!!!!!!

It’s about who THEY are, not who I am. For instance; Some people stare RUDELY, roll thier eyes, or snicker...THIS IS BECAUSE THAT’s WHAT THEY DO...THEY DO THAT to LOTs of PEOPLE, NOT JUST ME....they are most likely misrable or sad inside. Perhaps they lack JOY, a fundamental ingredient for life ...They need to snicker to amuse themselves...say a prayer for them, they need it.

When little kids stare, THIS IS GOOD....children are NATURALLY INQUISITIVE....it’s GOOD for them to stare, and be INTERESTED...They stare at LOT’s of things, not just me.....Butterflies, cars, soap bubbles etc....  Even so, sometimes I feel embarassed. I’m working on trying NOT to be embarassed, I haven’t done anything wrong.

THERE IS A HUGE DIFFERENCE BETWEEN KNOWING I DIDN’T DO ANYTHING WRONG, and FEELING like I didn’t do anythig wrong.

HERE is the diary with some parts I left out ...:

we were bagging groceries. Correction, SHE ,RELATIVE B”, was bagging groceries. I was TRYING to bag groceries, and messing up everything she was doing, & getting in her way. finally i just gave up.

The earth had slowed down HOURS ago. The ground was moving, my head was thick and my ears hurt. Everything was strangely interesting, I was happy, despite the pain in my head...I smiled and waved hi to strangers. In bits and pieces I saw the “theres something wrong with her” look on peoples faces...a little girl stared at me with wide brown eyes, and drew closer to her mother...she kept staring, she was clinging to her mother now...I wanted to tell her, “Its ok, Its just KLS”....but I couldn’t remember what words I should use....PLUS, deep inside I knew there was a reason I shouldn’t, but I couldn’t remember why...I tried not to run into people. I wasnt going that fast. Boxes on shelves were BRIGHT,strange,fascinating colors. There were markings on the boxes. I knew these to be words. But it was complicated, hard, and way too difficult without a fight. People were speaking to me & it was hard to understand. Everything was swimming.

“RELATIVE A” was trying to reign me in, and “RELATIVE B” looked mad. Why did I think that? Theres no way to know 4 sure what another person is thinking....I floated in & out of various states of consciousness. ...MY HEAD WAS SWIMMING, & there was a nauseous, dizzy feeling. Maybe I should eat something. I weighed the risk of ‘getting in trouble’ for my bad table manners, with the possible relief food would bring to my body & mind. Go for it. My hands were not working well...I ate a yogurt we had just paid for by tipping the container back and letting it fall in my mouth. I finished the rest with my fingers.

THAT DID IT!!!! That was the proverbial straw that broke the camels back! “RELATIVE B” was disgusted & angry. She said “inappropriate! You KNOW you did wrong! You couldnt just throw it away & open ANOTHER ONE? You HAD to eat with your fingers???? IN PUBLIC???? You have no self esteem, you have no pride! You think you can do whatever you want because your sick REGARDLESS of how WRONG it is!” No. If the yogurt wasn’t PAID FOR it would have been wrong...I argued about it (the clearer I got, the more I stubbornly refused to say I was sorry...I was mad at her 4 being mad in the first place)....it hurt my feelings....I was eating a popsicle...I gave her the finger with it...."RELATIVE A” tried to cover her laughter in the back seat..."RELATIVE B” was not amused.

...............END of DIARY page

LOVE,
Sunshine

pss. YES, I know I should not have given RELATIVE B the finger....it was WRONG....