I’ve watched many videos on KLS, YouTube, here and read many articles but they are all on teens.  I need more info on adults.  This disorder has taken so much of my life away.  I’m depressed most of the time during episodes that can last months (not every day but most days) and I’m not there for my kids, I’m broke and almost at bankruptcy and am gaining so much weight I don’t want anyone to see me.  I’m coming to the end of intermittent episodes that have been going on since February and now it’s August.  I need my life back.  Why isn’t there more info on adults?

Us adults are rare…that is why when we finally bring KLS up to the doctors, they are hesitant to even acknowledge we have KLS.  They forget, just because a certain population (age group for example) is the most common, they forget most common doesn’t mean EVERYONE…there is always at least 1 in every group that does not fit the norm (and you and I are not in that “norm”).  Also with KLS being so rare, I can see where docs are hesitant.  But you never know when your patient will be that 1 in a million…use it as an opportunity to learn from.

I can also relate to KLS ruining your life.  I have lost friends, used up all my paid time off at work, feel like co-workers have given up on me (really shows you how the medical field views KLS…being in the medical field…), and lost so much money that as of today I paid rent (next month who knows), about to have car insurance cancelled, have electricity shut off in a few weeks, have cable and internet shut off, bank threatening u cause u can’t pay car loan, and credit score hitting the $hitter, and loan companies for student loans threatening you.  I can’y go buy food or gas for car cause need the money for the co-pay to see sleep doc next week.  I don’t have any kids, am single, live on my own, but have cats and an iguana.

I feel so helpless and lonely sometimes.  Even worse lately, my KLS is so out of control, in the past month or 2 I have only a few good days, been able to work maybe 3-4 days, the other days I was either too sick, unable to drive, or sent home from work cause they (work) thought I was “too sick” too work.  My world is crashing around me no matter how hard I fight.  I also have not dated in 2 years (who wants to date a girl who they can take out 1-2 a month).  I don’t go out with friends much (the ones I have left)...either too tired/sick, can’t drive, no money, etc…

I hear ya.  I just showed the video from last night’s airing to my son who’s 16.  He hasn’t been any help at all.  He told me I haven’t slept like that and totally denied I’m having this issue.  I told him he’s so rapped up in his Xbox and friends that he doesn’t notice me sleeping for 18 to 20 hours.  When I found out about KLS my sister got very angry at me telling me I was depressed and I’m lying to my doctors about my symptoms.  It’s hard to push the Dr’s for the tests I need, deal with my son who refuses to help with chores or anything and I don’t have the energy to deal with it.  I’m so tired, so broke, I’ve taken out loans and ran up as many credit cards as I can get and that just feeds the depression.  All the videos that are shown have parents or spouses to help them.  I can’t pick myself up and go to get tests done when I’m sleeping so deeply.  I can barely take care of the stuff going on.  My daughter is 19, her boyfriend has been living here for 10 months; she’s 6 months pregnant and wants me to do so much for her but I can’t.  She works and going to college and her boyfriend works.  My daughter does some chores but not much.  Although my episodes are getting shorter and less strong, my body is so weak from months of either sleeping or laying around.  When I’m not in an episode, I don’t have the strength to do much.  I’m not sure how much more of this I can take.  My daughter and her boyfriend move out next month to their own apt and I’m thinking of sending my son to live with his dad.  Then I can get a small apt and start paying off some of these bills.  I too am having problems getting money for the dr visits.  My mom died several years ago and no one comes around as I’m either sleeping or don’t talk much.  My best friend is supportive but moved about an hour away so I rarely see her.  I pray a lot.  I’ve even prayed that God take me to heaven but obviously that’s not in my cards as you don’t die from this, just suffer.