Coping With KLS

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COPING WITH KLS

Because of the nature of Kleine-Levin Syndrome (KLS), it is crucial that each patient develop a coping strategy which will help them get through sick periods and best enjoy their time spent healthy. Everyone has their own personal limits and boundaries; learning these can help patients to not push themselves too far. Even while KLS sufferers lose time during episodes, it is important to remember that life is not a race. It can be too easy to feel pressure to try to keep up with everything, but it is crucial to make your health a priority. Take life one day at a time and find a schedule that works for you.

Some good KLS coping strategies:

  • Find a hobby (knitting, crafts, etc)
  • Watch television or movies
  • Talk out your feelings
  • Think positive thoughts
  • Connect with friends and family
  • Remember all the people who care about you
  • Take care of yourself when possible (exercise, shower, etc)
  • Let your brain rest and heal
  • Sleep as much as you need
  • Do not force yourself to function too soon
  • Know that you are not alone and that other people are going through the same thing as you
  • Develop a support system
  • Listen to music
  • Enroll in online education courses

Coping with Kleine-Levin Syndrome (KLS)  is very difficult during an episode. I am cared for by my mom who reassures me that I will get better and that Kleine-Levin Syndrome will go away. Many times it has been my family that’s kept me going. I am often in a frightened state during episodes, so I try to keep my environment very quiet with minimal stimulation. My parents have shut the ringers off to the phone. The blinds are drawn so that it’s not too bright in the room. My mom will frequently watch television with closed captioning so that there is no noise. I feel as though I am living in survival mode. I hate that Kleine-Levin Syndrome makes my personality change, but I know that I am not KLS and I am a good person. One of the most important coping mechanisms for me is having dreams and goals for my life. I always keep in the back of my mind that KLS will go away. I am determined to beat Kleine-Levin Syndrome which helps me survive. I have developed a KLS support system with amazing KLS friends that are always available to talk with me. I have a few very close friends that I can be real with and have accepted me as I am. Upon awakening from an episode, it is like I have to start my life over. Everyone has moved on and I feel left behind. But I am coping by making friends that understand I have an illness and they accept that. They welcome me back into the world. It makes all the difference in the world to have accepting friends. When I’m healthy, I like to keep busy, work on goals, eat healthy, exercise, and most importantly, I like to work on my relationships.

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