So I am not sure how much "N" affects each of your lives in here, but fro my own personal experience I want to acknowledge straight away that this is a debilitating disease. People may not necessarily understand this so easily, as all they think is you are "tired" and should "get more sleep," right? It is frustrating and can sometimes feel like you are in losing battle with the world. I know how this feels.
I was only "diagnosed" with "N" last year, but I have had it my entire life. I was misdiagnosed as a child with ADHD. Yes, that wonderful thing they like to throw at children they do not understand instead of trying to figure them out. The problem people don't take into consideration, when a child is that young and that tired, of course they will be hyper active. How else are they going to fight through the impending sleep without doing so? I think before any child is diagnosed with ADHD a Narcolepsy Panel should be done. I tested positive on mine, which means I was born with the genes to develop "N" and had someone paid attention, instead of throwing the easy things at me then my life would be much different.
I could go into so much more, but for now, I will leave ti at this. Has anyone else been wrongfully diagnosed or feel you have been? What about your children? Have you had them looked at for "N" yet?
I just typed out a very very long response and hit reply and it seems to have disappeared lol. So I type a brief one now and will try again in more detail tomo.
I was misdiagnosed for 20 years before it was finally agreed to allow me to go to a sleep clinic and get tested - it was a long battle but by my early 30a I was finally diagnosed With a very severe form of narcolepsy, which I have had since age 12.
I have a 2 yr old boy and have been doing the single mom thing from the day I found out I was pregnant. I had noooooo idea how my narcolepsy would present after I had my baby … Wow !! That’s another story.
What I repeatedly come across is that narcolepsy can hit hard in a lot of us at age 26. That gives you some time to make a plan & I wish I had been able to access this vital piece of info a decade or so ago for myself If you have child and you have genetic N in your family like me, get your child into college & university immediately after high school. Start having discussions with your children right away to get them thinking about what sort of a career they would want to do. Careers in which one has a Masters or PhD will allow a great deal of flexibility in being able to dictate your hours of your work day (daytime or nighttime) & your schedule - it gives you a lot of freedom in those ways & narcoleptics need that.
I do not have a PhD or masters.
Another other option is to find a suitable for your child’s interests form of self employment. There are limitless careers based in self-employment.
I have had to find more creative career paths :such as fashion design, sewing, teaching yoga, working in massage, & a huge variety of arts / things I can do at any time of day that I’m awake and then go back to sleep and wake up and dive back into my arts. I’m giving you this just as an example but I think the best bet for narcoleptic children is to be self-employed as early as possible and own companies and work hard when they still have the energy so that your son/daughter is the boss and are successful by the time narcolepsy starts getting more intense (age 26 it seems is a turning point) as we get older. Get your kids into school as soon as you can and help them in anyway you can to find their life purpose and what makes them happy and hopefully they can base a career around that
Wow Moonsmiles and Kristin, both with 2 year olds. Do you have family to help Moonsmiles? How on earth do you manage if not. Your ideas on employment with narcolepsy make sense but I am hoping against hope that if your children have inherited from you they have a milder form and there will be drugs better at controlling it than are available now.
One of our children was adopted. She had some big problems and needed 24 hour care and people would say ‘You are so brave’ but I wasn’t brave at all. Had I known what was coming then the decision to adopt would have been brave but it wasn’t what I expected - as it was I was just doing what I had to, dealing with the situation as best I could, making mistakes, almost despairing but keeping going. As parents we find the strength from somewhere. She is the light of my life, as I am sure your little ones are too.
If you have child and you have genetic N in your family like me, get your child into college & university immediately after high school. Start having discussions with your children right away to get them thinking about what sort of a career they would want to do. Careers in which one has a Masters or PhD will allow a great deal of flexibility in being able to dictate your hours of your work day (daytime or nighttime) & your schedule - it gives you a lot of freedom in those ways & narcoleptics need that.