How Do You Exercise When Your Meds Aren't Working And You Can Barely Get Out Of Bed- LITERALLY?
I totally understand what you are all talking about. It easy to stay in bed or on the couch because you don't feel like doing anything. Growing up when Narcolepsy was not something people knew much about. I thought people just thought I was lazy. When my brothers and sisters wanted to find me I was usually asleep in a corner somewhere. I hate sleeping. School was tough no one understood I went to sleep a lot.
My family did not understand. Life was rough. In PE class playing softball was really bad. If I hit the ball I'd be so shocked it took every thing in me to keep myself from falling in a pile. I'd have Catiplexies back than I didn't understand what was happening. Life gets better stay positve. Ask your doctor questions no question is a dumb question. Don't give up life gets better just more of a challenge for some. They have so much more knowledge about Narcolepsy today . I have had Narcolepsy with Catiplexies since 1969.
Pay attention to your body you know it best.
LORD HELP US !!!
I UNDERSTAND you completely..
And I have not gotten that one figured out yet …
I FEEL the same way ..
For me, the more I can physically stay upright and move, the better. Once I stop, whether standing in the kitchen or in a line, sitting to eat or drive or take a work break, lay down...It's completely OVER. The more physical exercise, the more I can continue. Movement is also essential for mental health. That is the hardest part with cataplexy and narcolepsy, waiting for your brain and body to communicate and work together. I do not have a regulated system and no balance yet despite years of medication trials. I don't know how I have been able to do it, and just want to be mush all the time. Yet, breathing requires me to participate as a mother and human being or responsible citizen. LOL. There is so much we do too often prepare and become organized to move around all the symptoms and unexpected situations we face with Narcolepsy. I wouldn't wish it on anyone.
Same here my people family ain't supportive at all everybody think I'm just sleeping to be sleeping
You are so very right.
Anyone Ever Been Diagnosed With Narcolepsy Type 2 Then Later Experienced Minor Cataplexy-like Symptoms. Like Uncontrollably Sleeping??
Do Any Of You Have Bad Automatic Behavior, And How Do You Deal With It ? What Combats It ?
Siblings