So, I hate to sound like a broken record and hopefully no one is too annoyed that this is going to be another "just diagnosed" post. I LOVE reading those posts, but again, I'm newly diagnosed, and it's still fascinating to me that A.) I'm narcoleptic and B.) this completely fantastic site is here and I'm not the only one, even though in day-to-day life, it certainly feels that way.
Anyway, let me just say first off, I'm just venting here - I'm really not normally a pessimistic person, so thanks for 'listening' because I've got a lot bottled up. My family knows of the diagnosis, but no one gets it, which makes it so I have no one to really talk to. I don't expect them to understand how I feel and have felt the last 15 years, however, it would be nice of them to read up on the subject so their opinions at least have some value to me. I know, it sounds snooty and cold, but seriously, their opinions are expressed in the most arrogant way (about treatment options, etc.) but they know nothing about narcolepsy so how can they say 'this treatment is bad, this treatment is good' when they can't begin to comprehend the scope of what I've gone through/am going through?
Besides that, the diagnosis alone is infuriating!!! When it was first brought up as a possibility, I felt AWESOME! Like, YES, there's a possibility that I'm not crazy?!?! And then I just thought it was kind of funny. And then came the thought of "wt****", because long ago, I saw parts of a ridiculous (and seriously stupid) movie where a narcoleptic fell asleep while trying to roll a bowling ball down the lane and she went with it (I'm sure some of you know what I'm talking about). So then a few weeks later, after I had really started to understand what this was, I became super, um, mad, to put it nicely. I've gone through a lot, as I'm sure everyone else dealing with this has and I feel absolutely robbed. Don't get me wrong, after a ton of idiotic mistakes and stupidity on my part in my teens and 20's, I found an awesome church support system (or was - in one way or another (long story) - court ordered), I tightened up, and I now have an awesome family, job (that I really do love), life, etc. I'm truly blessed, I recognize that, and I'm not trying to undermine or undervalue any opportunity that has been undeservedly and freely given to me. At the same time, when I think of everything I did prior, everything went through, everything I didn't do, the constant and everyday judgement I've endured, etc., I can't help but just sob.
There is so much I still don't understand and so much that makes so much more sense now.
- I totally don't get cataplexy. There are so many different symptoms considered to be cataplexy from the extreme to the barely noticeable, why don't they just say "we don't know either". It's with the very subtle symptoms, I'm just not convinced there yet.
- Do I tell my employer, don't I?
- Xyrem scares the crap out of me, but I have to give the doc a treatment decision very soon.
- Is this an issue for a sleep specialist to treat, a neurologist, a psychiatrist? As in the follow-ups.
Okay, I suppose that is enough now. Again, thanks for listening. I'm sure I'll think of a billion more questions after this. And first impressions are everything so I'm sorry the first one I'm making is so whiny sounding... This site truly is awesome. I love that all the feedback I've read in every post is so positive and encouraging. You all are a genuine, empathetic, and wonderful group of people and thank goodness for you!!!