Hi Everybody, I thought I would show this video. It may make your understanding a bit clearer what some people go through with cataplexy. I watched quite a few this morning, there was one lady whom was so depressed by her condition. No there is no cure.......My advice to anyone with Cataplexy is that once you get past the point of wanting to be your old self, like you used to, and you realize your not broken but that you have to live differently than you did before. I know it is hard to face change, but in many ways my life has improved on the fact that I can appreciate the days when I don't fall down, I appreciate the laughs that I can have with friends, so my head falls forward, and sometimes I can't move for a few minutes, I just make sure I am sitting down. Because with Narcolepsy there is so much uncontrolled sleep, I sure take advantage of the waking moments....There are 135,000 people in North America that have this. I have Severe Cataplexy and when it got its very worst there were very few moments in a day that I would not be having an attack, that meant no walking, no going out, no working, no holding children or babies, no going on escalators or stairs, or watching comedy shows, for some no cooking, and the list went on and on......Luckily I am on the right medications that my life has become much more bearable......I know everyone is different and deals with things on different levels....If you do not have a good doctor, keep looking until you find one, and I believe we know our bodies the best.....so if you are put on a medication that is not helping or you feel depressed please get them to try something else until they find what is right for you. We choose whether we are going to try and live our very best life or if we are going to be a victim. There are different phases one goes when they have a chronic condition, fear, anger, embarassment, humiliation, frustration, acceptance......I also when I was diagnosed I tried to find out why I got it........but truth be told there are no reasons for why.......but there are many reasons why you try to do your best with the cards we are dealt. I am only offering my opinion and everyone is different....Thousands of people are living with this condition undiagnosed for twenty years. If you have any symptoms the best place for information is the Mayo Clinic. Only with acceptance will you be able to live a good life.....these are my opinions and are not meant to hurt anyone. I hope this answers some questions which I have been asked lately. May we all have the very Best of Days, I thank you for your interest. take care, Cinner
HI CINNER-
ReplyDeleteI SO understand the complexity and uniqueness of your condition and I really appreciate your shared wisdom and insight in to how it effects you. MS is also very unique to each person with varying degrees of severity and no known cause either. I understand and I love you.
Gail
peace and hope for us all
Incredible .....
ReplyDeleteI've seen it many many many times.
Bless your sweet heart.
Very informative video, Cinner. I knew Cataplexy presents numerous problems one has to learn to live with, never realized the complexity of those problems.
ReplyDeleteGosh, it makes one put everything into perspective cinner. So glad you have a medication that helps, you are a very strong lady. I didn't know very much about this disease until I met you, I love how you are informing people. Stay warm my friend....:-)Hugs
ReplyDeleteDarling girl. I too knew of your disease but this video made it really real. And so very touching. My grandfather had narcolepsy but never suffered with cataplexy.
ReplyDeleteThis is a fabulous post. You are doing a great service to those who need encouragement and guidance and those of us who need to be made away of what you and others suffer through each and every day.
Thanks for your honestly, your heart and your strength. The Olde Bagg, Linda
You are such an amazing woman! Your spirt shines though this post. There is a little girl at my school (6years old) and she has to take a nap everday. From what I understand she has Cataplexy.
ReplyDeleteoh Cinner what a brave and remarkable woman you are. this is so sad for you but you seem to continue on with such grace and hope I just adore that in you. You really make me want to get out and do everything I possible can with the life i have. i feel for you my dear wonderful friend. i do hope that one day there is a cure and a way for you to return to the way you were before cataplexy. you are strong and wise and have so much to offer to those around you. love and blessings to you hugs
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Your attitude about your Cataplexy is truly amazing Cinner. I just don't know how you do it. I just think that you are a strong and amazing woman!
ReplyDeleteLove Di ♥
I had never heard of this before but your post definitely sparked my interest in doing a bit more research for myself.
ReplyDeleteI would say something like "that's so terrible" or "I'm so sorry," but those things don't make it better.
I prefer positivism and blessings.
You're a strong person for going through it and just loving the moments you have. That's the best you can do. I hope you keep your solace and despite whatever circumstantial lapses your laughter might bring you that it never makes you afraid to laugh.
It is the best medicine, in any situation. For that, I am sure.
My prayers are with you. :)
Thank you so much for educating us with this video and a little of your own story. I have seen people fall asleep suddenly on the train or bus and wondered if they have narcolepsy, and I had heard of catalepsy but knew nothing. You've taught me today. Looking forward to more from you.
ReplyDeleteKathryn I am so thankful that people like yourself show an interest. When I first was diagnosed nobody knew about it, doctors, nurses, etc....with you being so environmentally conscious I have read stories that it is more prone in Japan. I think it may have something to do with the Mercury spill years ago, but of course, no sound proof, then I read that there was concern over amalgan being in fillings in our teeth . funny that there is a ban on this material being sold now and toys etc have been pulled from shelves, but they could put it in our mouths. some doctors believe it may have something to do with it, others think there is no correlatin......what they do know is it has to do with the hypothalmus in the brain,,,,so will see what happens one day. hugs to you, hope you are well.
ReplyDeleteJennifer thank you for your interest. No need for I am sorry, I just carried on once I realized there was no fix....for the first six months I just wanted it fixed and my life could go on as before....I am one of the lucky ones, after many medications it has become very liveable for me, although I very seldom go very far alone. I carry a card too that explains what it is if I was ever in a situation and I have an alert necklace. All I know is that I am truly blessed because there are such worse illnesses and conditions out there....I don't even have a right to complain. My friend asked me once if they could fix all of this, if it meant I could never laugh again, would I want that....I can not imagine life without laughing, so I just keep living the best I can. hugs to you for your very kind message today. all the best.
Diana, I have become used to it, you just walk a slightly different path than before. I have the best sister and husband. without them things would be Quite another story maybe....hope you are feeling well. We are snowed in so I want to get by and visit everyone between shoveling snow...that is no laughing matter, so I can do it a bit at a time. hugs to you. thank you for your kindness.
ReplyDeleteKim, your a darling you know. I watch all these young children that are ill, they are the ones I can learn a lesson from. They are so brave facing cancers etc....and then to have me complaining that I fall down....just does not seem to be that serious of a condition. and besides you never know what you can do or not until it happens to you. I don't consider myself a strong woman....you just figure out how to make the best of your life. who knows maybe God has a purpose I have yet to learn. are you getting the rains there that I have been hearing about. hugs to you, hope you are well and the holidays are so close.much love to you.
ReplyDeleteGayle if she has Cataplexy, those naps help her to not have any spells...Cataplexy has different triggers too....for me it is laughter, being startled, being surprised, for others it is anger, etc, The cataplexy is one of the symptoms of Narcolepsy. Cataplexy also lasts fpr different lengths of time,, and in different levels of severity. It is most common in children and I did not get mine until age 39. There is no known reason why....I have only ever emailed two people that have had cataplexy, and have never met one in person....are you ready for the holidays, I bet your grandson is excited. I do think of you often....hopefully I can get more on track again, my schedule has been out of wack, not sleeping the best, so I am having a hard time getting around to everyones blogs. Hugs to you, hope you and your family are in good health.
ReplyDeleteLinda, do you know if your Grandpa had his Narcolepsy all his life. some don't get the Cataplexy, others get all four of the symptoms. I have just felt so little is known about it so I hope I do make a difference in awareness. Thank you so much for your lovely comment. hugs and love to you all.
ReplyDeleteBernie, knowledge is everything. I watch the Extreme Makeover Home Edition all the time and I think there are so much people deal with, things I have never heard of...makes my problems look so miniscule......my biggest problem right now is the snow.....I can not believe how we are blown in. you must be too Bernie....stay in and stay warm. hugs.
ReplyDeleteWanda, different levels for sure, my life is pretty easy because of my medications. If I get my scheduled rest that is the best treatment for me.
ReplyDeletelife is good, I have learned to adjust to the changes. afterall what choices do we have. we are never given anything we can not handle, at least I have learned that and believe it whole heartedly. You must be excited for the holidays. They are coming so quick. take care, hugs.
Anne, you have, maybe someday I can ask you some questions. think about it and let me know. Thanks God for nurses like you, I think that everyday. My little American hero. hugs.
ReplyDeleteGail, I so know you know. we just do what we can and some days are better than others. we are snowed in here....many vehicles in ditches today, I let the dog out tonight and he just turned around and came right back in....I totally understood. lol. hope everyone there is well, Tomorrow I want to catch up on some blogs. love you much. hope you are feeling okay. hugs.
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