Kleine-Levin Syndrome

Last night I met my brother in the city . I called him to meet up and travel home together.. instead I get invited up to the after party and we drink some more, and my brother is not acting himself . His usually a very stable person and has control of his drinking when going out. (not an addict, nothing , his healthy and working ) anyway we finish up and go out , and my brother decides to take a ride on my kickscooter and of ours ends up flying 5feet landing on his back / neck....... He immediately appeared severe injured and couldn’t breath couldn’t speak and wasn’t on this earth at all. Me freaking out and police arriving because the medical team felt threatened by me, but i was just FUCKING upset over disabling my brother for life. Bye bye realtor, bye bye career... I walked an hour to the hospital to check on him (around 2 am) . He was ok, but his previous shoulder operation was ducked up. But his pulling thru. Now my family blames me, I blame me ofcourse, and I don’t know how to make it right... he crashed so hard that the kickscooter was destroyed and I no longer have the opportunity to travel to my family because it’s too far to walk for me.. I just don’t know what to do now. My family broke me off , my brother is the only one I know for sure doesn’t feel that way, but even tho I know that it’s my fault and my brother said he is the one to blame, I still feel like shit and ‘blocked ‘ from the family .. this stupid shit was a major set back for me.. I did all I could to help him after the accident but I am just being stone walled af and maybe I deserve it maybe I don’t , but it makes me anxious and extremely concerned that I might just go ahead again🥵 no family no life. I’d like to know if I’m being crazy or if I should just end it. I can’t relate to Norms and social normality or whatever and it confuses me so much already feeling like an awkward LIFE NOOB. Set me straight or kill me great. Joke. I see now all i written seems wrong when i read it,but it felt rightwhen i wrote it . #DepressiveDisorders #KleineLevinSyndrome #Anxiety

The latest post on my KLS memoir finally brings us closer to a properdiagnosis of hypersomnia and Kleine Levin Syndrome. klsproject.org/things-get-worse-the-year-when-our-lives-fell-apart #KleineLevinSyndrome

The third poem in a series from 2017 explores that feeling that KLS takes our own children from us and leaves us to care for someone who isn’t quite the child that was there before. Parents of children with Kleine Levin Syndrome express this sentiment in conversation and our online support group.
The experience of caring for our son has brought Barbara and I closer these last few years, but a bitter custody battle stood out as the only accessible metaphor I could connect with, regarding how KLS episodes affected our home and me in particular. From my blog,  klsproject.org

Visitation rights?
That bitch, KLS took them.
Visits are a gift.

But my visits are
Unscheduled and infrequent.
I never get long.

I miss him between
The episodes of sleep and
Foul moods, some violent threats.

Sometimes, he’s childish.
I just wish I had more time
Spent with my sweet boy.

The one who visits
And talks to me about life,
Doing stuff with me.

Can I keep him here?
My son belongs at my side
Before he grows up.

Before life wedges
Itself between our dreams and
Our family’s time

Maybe this time I
Can keep him just for myself.
I don’t want to share.

Maybe this time I
Can abscond with him in love.
Taking him with me.

She’s a metaphor
And this disease that takes him
Won’t give me visits.

I need to savor
These lucid moments now
Or they slip away.

I can rail at the
Heavens but they don’t answer
Or pay me mind.

No one knows a damn
Thing to get a real treatment.
All we do is hope.

What good is our hope?
It doesn’t give us a cure.
But we can’t give up.

We have our seats in
Limbo. Watching and waiting
For him to wake up.

Worried that he will
Slip back into his dreams and
Then it starts again.

My son’s greatest challenge every day is waking up. Kleine Levin Syndrome (KLS) changed my family’s life. Kleine Levin Syndrome is a poorly understood disease that’s marked by recurring episodic symptoms of hypersomnia, derealization and mood changes that are not yet fully explained. klsproject.org/an-introduction-to-kleine-levin-syndrome

••••I learned this through supporting my friend in NA. This helps me with my chronic illness every time I want to give up.•••••

“JUST FOR TODAY
I will live through this day only. I will not brood about yesterday or obsess about tomorrow. I will not set far-reaching goals or try to overcome all of my problems at once.

I know that I can do something for 24 hours that would overwhelm me if I had to keep it up for a lifetime.

JUST FOR TODAY, I will be happy. I will not dwell on thoughts that depress me. If my mind fills with clouds, I will chase them away and fill it with sunshine.

JUST FOR TODAY, I will accept what is. I will face reality. I will correct those things that I can correct and accept those I cannot.

JUST FOR TODAY, I will improve my mind. I will read something that requires effort, thought and concentration. I will not be a mental loafer.

JUST FOR TODAY, I will make a conscious effort to be agreeable. I will be kind and courteous to those who cross my path, and I'll not speak ill of others. I will improve my appearance, speak softly, and not interrupt when someone else is talking. Just for today, I will refrain from improving anybody but myself.

JUST FOR TODAY, I will do something positive to improve my health. If I'm a smoker, I'll quit. If I'm overweight, I will eat healthfully -- if only for today. And not only that, I will get off the couch and take a brisk walk, even if it's only around the block.

JUST FOR TODAY, I will gather the courage to do what is right and take the responsibility for my own actions.”

- Abigail Van Buren

#IdiopathicHypersomnia #sleepdisorder #sleepyheads #justfortoday #Narcolepsy #KleineLevinSyndrome #Anxiety #Stress #Depression #SuicidalIdeation #ChronicFatigueImmuneDeficiencyDisorder #ChronicFatigue