Most of you know I have narcolepsy with cataplexy. Before I knew I had it I thought it was a pretend disorder. Not because I thought that people were pretending. It was because I didnt think anyone could live that way. Then I realized not only do people live with it but I was also living with it. Over the years I had adapted to it in many ways that I thought was normal. Why I thought that Ill never know. I didnt know one person who did any of those things. Like setting several alarms and still running for the bus to school. Sleeping in when everyone else is getting up 1 to 2 hours early to get ready for school. Later I became uninterested in actvities I once loved. I never understood how people did so many things. I was plagued with horrible nightmares that were always very real and sometimes in the room with me. I would wake only to discover that I couldnt move. Seeing and hearing things that I couldnt run from. Later I would drop things for no reason. I broke many coffee pots. Sorry, McDonalds I would stop talking and just stand there. Then when the person I was talking to said hey! I would tell them I was taking a nap. Shana Patterson Little did I know I was taking a nap. I thought it was normal for people to pull over while driving to take a nap. Once again never knowing one person who ever did this. I have slept in the parking lot at work before I started work every day. My co-workers being very amused because I would put the back seats down and bring a blanket and pillow with me. Over the years I started to fall more. Especially, while pregnant, when I was upset. I didnt know about the cataplexy. Never even heard of that. When I was pregnant with Cassidy, (3 now) I thought I was having seizures again. These ones were very stange. The werent grand mal and I remembered everything. I finally had a sleep study done in August or September 2011. They told me I had Narcolepsy. I almost laughed. Almost as funny as when they tested me for lupus. Ha ha everyone knows Im loopy and all that. At least lupus isnt a fake disorder made of by screen writers. ugg!! Over the years they check my thyroid (fine). They tested to see if I was diabetic (not). Said I had low blood sugar (not). Low b12 (bingo). Fixed that didnt solve anything. Depression and PTSD...Treated with horrible medications. Paxil NEVER AGAIN! Didnt change anything except when they wouldnt give me my refills on time. Paxil withdrawal is the most horrible thing I have ever experienced (except a c-section..dont worry not going there in this story) I was more afraid than I have ever been in my life. I knew it wasnt logical the whole time. Didnt stop the feelings. One time I was hiding under my kitchen table with my back against the wall terrified. My friends Frank Wojcik and Donnie McKenzie came into my house (they had keys) and took me for a ride. I called Jeff Wyatt and made him talk to me on the phone long enough to get my shoes out of my bedroom. I was too scared to leave my living room. So anyway Paxil bad very bad. Nothing I have experienced with my narcolepsy has ever been as scary as that. So I came home and looked into what narcolepsy is. Didnt find much. I really thought that I was going to beat it. So sad was that thought! Finally, I was watching Taboo. On the show they had a man (Dee Daud) that has narcolepsy and cataplexy. I was so excited! Then terrified. Oh no this is what it is?! Then sad. I found out this amazing person lives in England. No way am I ever going to meet him. I bet he is the only person besides me that has it. Depression, real this time, sets in. So I was talking one of the normals, (thats what we call those of you who dont have N&C) my beautiful and wonderful friend Jennifer. She suggested I look for support groups on Facebook for narcolepsy. I laughed and said they are probably all sleeping. She actually told me I wasnt right. I guess its ok to joke a little about it right? RIGHT?! I mean come on! I need to laugh. At the same time I was looking at the free books for my Kindle, I found a book called Wide Awake and Dreaming. Didnt even realized it was about narcolepsy. I downloaded it because Im always wide awake and dreaming. I started to read it OMG! OMG! there is someone else that has narcolepsy! I cried the entire time I read it. This person, Julie Flygare is in the United States! Ok now Im getting somewhere. I loan the book to Jennifer. Dude, you need to read this! Now I have hope. I have two people and me. I find the Narcolepsy Network group. One of the people on there start a group thats is called Narcolepsy Friends. He wants people to add him as a friend when they join the group. I do this. He says he has videos. I go and watch them and OMG! OMG! Its Dee! Im so excited I can hardly stand it. Never in my wildest dreams did I ever think this would happen. Hes the reason I started my search to begin with! From there I join other groups. I started finding people all over the world who have my pretend disorder that no one can live with. I found Julies page for her book. I found her personal page and added her as a friend. I didnt think she would add me. She didnt know me at all. Not only did she add me but she also talked to me! She is a sweet and wonderful woman. She is an inspiration. Reading her book scared me as much as seeing Dee on TV. Now I just feel it is what it is. If it progesses it will. They deal with it I can also. This is my story I wrote this because Narcolepsy is that pretend disorder that nobody knows much about. More people need to have an understanding of what it is. We are not lazy. Most of us do more than normals because we are very creative on how we use what little energy we have. I want to tag all the wonderful people who are wonderfull and supportive in my life. Some of them arent out as we say so Ill just go with you know who you are. These are people I talked about in this post. I copy/pasted it in so Facebook is giving me issues tagging the people where I spoke of the. This is the order they appear: Shana Patterson, Don Mckenzie, Jeffrey Patrick Wyatt, Dee Daud, Jennifer VanBriggle Takash, and Julie Flygare.
Posted on: Sun, 02 Feb 2014 01:13:30 +0000
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