Tuesday, July 13, 2010

Narcolepsy cataplexy fibromyalgia maybe it should be in ABC order?

I have had to order stacks and stacks of pamphlets on Narcolepsy with Cataplexy. i keep them with me, I hand them out to everyone I deal with that needs to understand me. I cant keep enough pamphlets on hand.
I am realizing that so many eople dont understand or have a clue to all Narcolepsy with cataplexy takes in. Narcolepsy with Cataplexy is different than Narcolepsy. Both suck.
Since my dx things have been up and down. With new med for it, I am still up and down but my good is awesome!
I have pin pointed when it started- 12 years old. My Fibro before that. Between the 2 I am amazed at how well I did manage life for so long.
I have come to the conclusion that people need educated more on so many illness/disorders/syndrom
When people think of Narco w/C they think of people falling asleep. Its so much more. Thats the most minor part for many. I never would have thought I have it, fact is if my 16 yr old had not decided out of the blue to go to the doc with me, and insist on going into the office I wouldnt know now. When we were talking about my falling, the doc asked if it was ever related to emotions, extrem in any way. i said no, ds said Um YES it is. He then gave specific times, I was floored, no clue. The doc and I talk more. I was shocked, the more I learn the more I am shocked.
But it effects so much, memory, energy, learning, falling, clumziness, wording. Through Jr. High and High I was told I was lazy, depressed, so many mean things. No I wasnt any I had Narcolepsy! I was told I was stupid, had to struggle hard to retain things, I am not, I have Narcolepsy and it effects it. Told for years i dont express myself well cause I am stupid, and other things along those lines. Guess what I dont always, sometimes I express myself great, sometimes I dont, its due to Narcolepsy. I dont always grasp whats said, done, heard, I can go through motions of various things, look like I am awake to all around me, I am not. I am alseep. So I later dont recall or its distorted in my mind. So many things.
So its made me think about so many other disorders that are so misunderstood or not well known. How often do we look at someone and say "oh so and so has YXZ" we think we know what they are dealing with, but in reality have no clue. I know I have, I know I have said or though "its just _____, they need to get up and work through it, move on" or similar. I wont again. After this. All my health issues, I now have answers, nothing can be cured, it wont go away, but I can learn to live with them hopefully. My med for N is $1900.00 a month at the dose I am on now. I cant even start to explain all the changes it makes. It amazes me. I am no longer the clutz, tripping everytime I walk, dropping things through the day, breaking things, sounds like nothing big, but it is. I still have moments, I still get tired, I am still falling asleep, i still fall down, pass out, forget words, misunderstand whats said, loose my own words, and so much more. But I know why, and most days its better. Right now Its a rough day, missing my med for a few days and being so sick. But hopefully it gets better again. I can now drive 45 min and not fall asleep!
So my point was if family friends, Church members, neighbors, anyone you know has anything wrong, never assume you know everything, thats its simple, or that because you hear of "it" you dont need to know more. I hate handing out pamphlets but its easiest way for me. Between Narco W/C, fibro, bursitis, sciatica- nerve damage from spine down, SI Joint dysfunction I sound like a nut. But I know whats going on. I have cried many days over the effects this had over life and I didnt know why. I feel robbed in many ways, I missed Jr High, I missed a lot, I self medicated not knowing it, I was diagnosed with all kinds of emotional disorders that I do not have, Many things.
So please if someone near you has anything wrong take time to learn, find the facts. Never assume. Since my dx I have had several people refuse to see the reason for things, its bad enough before I understood, now I do and they wont listen, It hurts. Between fibro fog and Narcolepsy I spend many days feeling like my minds been stolen, like an idiot, no memory, grasping to understand simple things, feeling bad when I dont, worse when others see it.
I dont tell people the full effects I dont talk to or have visitors on the worst of it. Sometimes i wish I had, that I had not hid it, other times I still dont want people to know. There is always someone with something rude to say to me or behind my back. Then there are those who are willing to learn, and joke about it with me. I can handle that. When I end up on the floor unable to move, the best response has been to lighten it up, make it funny, after making sure I am ok. When I go to take a step and my foot stays on the floor but the rest of me moves forward(never a pretty sight) dont make fun of me, but dont make it a major issue thats the end of the world either. When I have no clue what we are talking about, or forget AI already told you the same thing 5 times, let it go. When I cant think of a word in conversation, just let me be, sometimes giving suggestions on words is irritating, sometimes helpful. i never know which
So If you have someone around you take time to learn if they have an illness, never assume you know it all.