i was wondering if any of you leave the house during episodes or recoveries???

when i have my episodes i won’t leave the bedroom. then when i start to recover
i start slowly moving on to the living room. then towards the end of the recovery i start
sneaking out into the backyard very very late at night in the protection of darkness when
the chances of being seen by people is very low.    then i gradually start sneaking out onto the back steps during the day if i don’t
see or hear anybody outside.

then eventually i’ll go on car rides with my wife.

but i don’t go out by myself until i’m completely “normal” again.

do others act like that, or do you still go out during episodes/recoveries???

do some of you also become afraid to be around other people during episodes/recoveries???

how do you deal with it???  i’m always so afraid because i can’t tell if somebody is talking to me or if i’m just imagining it. or
i can’t tell if i’m actually saying something, or if i was just thinking about saying something but didn’t say anything. i can’t
tell if what i’m seeing is real or if i’m making it up, or if what i’m hearing is real or if i’m hearing something else.  it’s so hard
to tell what’s really going on.

oh and my wife discovered that during my recoveries i’m absolutely horrified of uniforms.  she said anytime i see a uniform i panic and go back to bed.  apparently one time during one of my recoveries i asked her to go for a walk with me very late one evening after it was dark. but once i got to the door i saw an ambulance outside paniked and went back to bed.

I do not leave the house willingly during an episode - and this is common with almost all of the people I have talked with over the years with KLS. 

While you individual phobias (uniforms) is probably specific to you others have similar issues with there own phobias - spiders for me.  I think that it is similar to the lack of inhibition in that we have a hard time controlling our subconscious fears during an episode. 

In terms of recovery I have a similar pattern in that as I come out of an episode I would often walk around more of the house and sometimes the backyard - but not want to go out until I was completely out of the episode.

You are not alone.

There is no way my daughter could leave the house during and episode until she was almost 17 and on meds that alleviated them somewhat. By then, she also had a service dog which was, among other things, trained to support harness. She had a college class that the teacher REQUIRED presence even if her brain did not work. I would get her into the car and the dog would help her into class and back out. I would then take her home and she would just continue to sleep. Before that there is just no way. And really - what is the use? Her brain was NOT functional. The fact that she did what she did for class was incredible… and almost stupid.  When she was younger, without meds, she would stumble, fall, walk into walls and doors. It was enough that the dog helped her to the bathroom IN THE HOUSE - forget about going outside!

As for in recovery… depends on what stage. After the 3 week-long sleeps, for the first few days, NO - she could not go to school. Then she would go with her brain “foggy”.

She was not afraid of things during this time. She seemed quite normal, but slowed in thought and movement.

When i am in an episode i do not ever want to leave the house. If i do end up needing to go somewhere like a the doc i have a really hard time to say the least.

Typically my son won’t leave the house during an episode either.  But in the two last episodes he felt less fuzzy during the awake times of the episode and was willing to go out for a walk, hang out in the backyard, even talked briefly to neighbors while we were outside. he also went for a drive with us just to get out for a little while.

I’m wondering if anyone has come up with something that KLS folks can do while they are in an episode but awake, and coming out of it.  My son gets really frustrated at that point because he’s bored but doesn’t trust his brain to do anything yet.  We’re trying to come up with some hobby or activity that he can enjoy doing even when he’s in that stage of an episode.

Thanks.

Mom in Philly - 15 July 2009 06:05 PM

I’m wondering if anyone has come up with something that KLS folks can do while they are in an episode but awake, and coming out of it.  My son gets really frustrated at that point because he’s bored but doesn’t trust his brain to do anything yet.  We’re trying to come up with some hobby or activity that he can enjoy doing even when he’s in that stage of an episode.

Thanks.

My daughter got onto the Internet, chatted with friends, and did artwork.

Naomi

Naomi,

Thanks for your suggestion of artwork.  My son is in an episode now and he spent about 15 minutes painting (something he never does out of episode).  Since he’s only been awake about 1-2 hours a day, that’s a large percentage of his awake time!  Thanks so much for the idea.

My son very much disliked having to leave the house during an episode.  He found great comfort, even as he was coming out of one, in watching, over and over again, recorded games that he played in.  He would sometimes watch a movie over and over too.  I think he liked that there were no surprises.  He knew exactly what was going to happen.  He said that he felt much safer at home because didn’t know what was real or not when he was out.  (not exactly a hobbie like painting, but it gave him comfort and passed the time)

Yeah I can relate to not knowing what’s real and what’s imagination. I don’t sleep that often during episodes anymore, but I have the cognitive derealization symptoms. I’ve been sick for 10 days now and I’ve been out of the house a couple times, each time being with someone or several people. I must say that I do have a hard to interpreting what’s real and what isn’t, but so far everything that’s happened has been real but my brains extremely slow to react to things. It doesn’t occur to me that somethings happened until about 10 seconds later or so.

During my normal routine, my episode (I didn’t think it was an episode at first, just a busy, stressful weekend leaving me more tired and slow) became stronger and I was on my way to school. I have to commute for about 90 minutes to 2 hours each way just to get to class, and it’s a pain in its own respect. Anyways, it wasn’t until I was on my second bus about 10 minutes away from school that I realized I had entered an episode. Once I got to school I panicked and couldn’t tell what was going on. It was extremely scary for me and made me feel even worse that I’d have to wait another hour and a half until I could rest in peace.

I appreciate you posted this a couple of years back and I hope you are no longer suffering KLS episodes but in case you are my son who is 17 and suffered for 4.5 years is also reluctant to leave the house and in fact his bedroom, he prefers his meals to be brought to him in bed, he also likes the room to be dark he seems to have a problem with light so the curtains stay drawn, also he likes to watch easy viewing we bought him the box set of Friends and Family guy and the only time he watches is when he’s sick he seems to get comfort from viewing programs that are familiar and don’t require too much effort.  His personal hygiene is also a problem during KLS we have to nag him to take a shower or clean his teeth - sound familiar ?

Sounds almost identical to my episodes.  I liked it to be darker in the room.  Mostly leave me alone and let me watch movies or shows I had already seen 50 times (that way you dont have to think so hard to “make up” what will happen next - tough to describe but anyone who has been in an episode will likely understand that feeling).  Showers, brushing teeth, shaving - not a concern and also exhausting.  As described in some of the posts above I did have “lighter” episodes where I did go out with friends and family - supervised.  This was later in my episodes (early 20s, first episode was 13).  Positive is that the last episode for me was Sept 2001.  Anyway, your son’s behavior is very typical of KLS.

Glad to know I am not the only one that shelters myself in and can barely take care of myself.  Just to lift my arm to grab the toothbrush is so much work.  I sweat real bad and want to shower sometimes, but no energy.  The best I can do is get in the shower, throw a washcloth over my face and pass out in the shower for 1-3 hours.  Not smart, but best I can do.  Sometimes having to speak is torture.  I get mad at anyone that makes me say more than 1 word.  I wish work would understand this a little more.  Sometimes I won’t eat for days cause it is too much effort.  Then when I am hungry, I can’t even make myslef a sandwich.  I will order out if I am able to online.  Today…I forgot my address, luckily the restaurant has it on file…they must think I am on crack.

i have to as i must take my child to school but this is done under great stress,hahahaha and done with my clothes on backwards and inside-out.i don’t go anywhere else and as soon as i’m home i darken the lounge and hit the couch.