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Re: living with narcolepsy

Posted by sleepykitty on August 04, 2002 at 20:20:19:

In Reply to: living with narcolepsy posted by doggie groomer on August 04, 2002 at 17:07:41:

Yeah, I know the story about docs not wanting to believe the "miracle drug" has not been what was hoped for. I had the same problem w/ my doc who thot that the impairments I was suffering from it were signs of sleep deficit and stress. I'm sure those played a part in the Provigil problems but I'm not sure that the Provigil wasn't what led to the deficit and I know it played a big part in my inability to work like I had in the past, which in turn caused stress. Best thing to do to educate drs is to do a search here in some of the forums and print what you find that shows others experienced the same problems on the drug that you did (goes for any drug). Show him/her and if that doesn't cause them to back up and start looking for a better method of treatment, you need to find a different doc. It seems for some that effective treatment is possible and you should try to gain back what you are losing before giving up and deciding that the fight can't be won in life. Having an understandind doc is of utmost importance in not fighting it alone.

As for trying to educate others on how N is different than any sleepy they have ever felt... give up. Even as a PWN it is hard for me to believe that I can feel the way I do at 35. It is not often that you will find people who can relate well enough to our plight to not want to offer trite solutions. Consider their attempts to be sincere in wanting to help and forgive those who need it for their ignorance. You don't have enough energy to try to defend yourself to such people. Instead spend it on trying to find quality to life. At times having N may feel like the end of the world, but it truly is not the end.

Best Wishes. Know you are not alone. And neither are you old : ) ! If you were grooming all N dogs, you might have an easier time being accepted : )

Sleepykitty


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