This is my post I put on the Narcolepsy Network FB page I posted just a moment ago... I dont know what the outcome will be come tomorrow as far as the comments go, but I was hoping for a few good stories and was wondering if anyone on here could read this and respond with their silver lining moments.
I joined several of these N groups because I have N with C. I have always had it but for some reason it has gotten harder to keep under control lately and I recently reciefed a formal diagnosis. I also have a page on livingwithnrcolepsy.org (under Princess Notso Bright) and I like to learn about resources. What bugs me on most of these FB pages is it seems like it is full of negative comments, questions, or remarks about N and N with C most of the time. I dont find my struggles of having N with C pleasant by no means, but I want to know about other peoples successful moments about dealing with their diagnosis's. When we look for the silver lining in our hard times, it helps us to better appreciate life. For example: Took my son and guy friend to the Idaho State fair today. I got most the way through it and I suddenly got hit hard with a sleep attack. It was embarrassing because people were staring at me and my poor autistic son kept asking me loudly if I was ok which was drawing some much unwanted attention to me. But the silver lining was I got to spend time with my son, I got to teach a few people about N with C, and I had a good friend there who was willing to help me get through the exhausting moment and keep from turning this into a bad thing. We cant change or fix or find the miracle cure for our difficulties, but we can change our attitudes and our perspectives. I want to hear what your silver lining moments are!!!! Please keep this positive!!! Granted there will be some people who like complaining but please keep the complaints to yourself for a moment. Thanks!!!
It's much too late to write but I cannot resist commenting. Yes, thank God there are Silver linings in our clouds.
Tonight thinking about dealing with a very difficult disease and thankful that I have been set free from the "life of quiet desperation".... That life I see in people pretending to like "their job", "spouse and life" just passing time, but not living authentically. So few do live authentically and in the moment. We do live authentically, no choice, live moment by moment because that's all we have. It doesn't get more real than this. We can't pretend anymore "everything is "alright", we are who we are, and no denying that any longer. Looking on the bright side, the Silver lining - we are on the cutting edge of all that is true, real and authentic. Yes, it's hard, but would I choose to just let time fly by instead of cherishing each special good moment like my last? Never, if we see the special calling and the special choices each one of us takes, when we choose to make the best that we are dealt or given by the moment.
I'm astounded and joyfully overwhelmed by what you write of what you do choose, to do in spite of the disease. You are all the most amazing people I've never met personally. I look at you as the bravest and most courageous people on Earth. That alone helps me day by day deal with the things I don't still don't want to deal with but must.
Thank God for the gift of "now", of "an authentic life" that I never wanted to choose! And I mean that. Choosing to look for the Silver lining...it is there and it makes us free in a special way!
I wish today that you all can see a Silver Lining, because we see what we look for.
Sincerely,
Ranger
(PS: Writing is very difficult for me now the words, thoughts and even letters or words at times are gone, gone, gone. Reminding me of times past...but If I can't dance, should I not walk, if I cannot sing, should I not talk? Clear moments to get out some words in a somewhat sensible manner without gross errors means the world to me...)
I donât have N but I do have Silver Linings.
I am a little overwhelmed at the moment with jobs to get done to a deadline. Last night I was forced out of bed half an hour after I got into it, really tired, and was then up for two hours after I had taken medication to help me sleep. Because I am cruising on autopilot when this happens I never know what I will find in the morning and this morning, like the cobbler in the story âThe Elves and the Shoemakerâ, I found one of my jobs all done and tidy. I was just telling my daughter about this Silver Lining to my difficult and very short night when I put the iPad on and read your post Princess Notso Bright. I love your post; we should all search for the good in our lives.
Happy Sunday everybody
Nel
At 4o I made a bucket list 101 things to do before I drop dead or go insane. The plan worked well for a whole I even lost 100 lbs .At 42 some days I couldn't even function ,but kept trying to do the bucket list. Dec 23 2002 I call this the Merry bleep bleep Christmas, got a name for what I have N with C sudden drop attacks ,memory loss. No fixing it ,just help. Sleep study test so bad could be in a wheel chair in 1 to 2 years . I became a candidate a for Trail study Xyrem. At the end of the first 6 months , my dr and I new I realized that I was one of the patient that received the fake drug ,my condition got worse.You see I made to the wheel Chair a few times during that 6 months, each time after a few hours I refused to stay in it. Out of the wheel chair shaking and half falling I crawled down the hospital for floor ,it took awhile to get to my destination.I didn't even care who saw me I was determined never to be in that wheel care until I was grey and old ,like 105. For a while things in my life needed to be adjusted.The hardest part being the one in the family everyone relied on.My family found it hard to realize I need to say no when I should be resting.There adjustment more difficult than My own. The issue was my body was giving out in other ways and at 46 I seemed to have had a lot of @ parts removed, my children now take care of me at times , but still walking a blessing .Still trying to do bucketlist showing my children ,that life still moves on and enjoy it as each day comes. Started to design again ,costumes for a theatre company ,being around your adults helped a lot. They also recognized after awhile when a sleep attack or a catalpexy was on its way before I did . No worries they would say will just pick you up and dust you off, and they did. The thing that might have done me in that year was all in one week My husband and I separated ,found out I Have more tumor 3 days later my mother past away suddenly.I thought that I wasn't the type of person to have a nervouse breakdown ,but I did .This took awhile to see any silver lining ,so the bucket list got put away.The cancer battle was long and at 49 more tumor s And more cancer. We were 5 years old when we met and that year she also was diagnosid with cancer. This however gave us the courage to battle together. The year 2011 Thank God no sign of cancer for me gone ,but for my friend the battle end with her passing in. 2013 .I am 54 years old this year ,most of th100 lbs is still off my body. Christmas is great myoldest daughter takes care of this now ,we have added a few more people to our family ,a grad daughter and one more arriving in Jan 2014, 2 son in-laws ,one daughter in-law,and and can adopted daughter for me. Getting a fake drug on the Drug Trail Study, was a bellsing it gave even more determination ,xyrem has become a blessing. My children were diagnosed with a different disease, my life has made them stronger as adults and able to cope very well with their diagnosis ,as they put it I can Handel it because it was easier than being a N with C. My oldest daughter told one of her friends to stop complaining, take a look at mother .She gets out of bed each day and lives her life to the best of her ability. I have discovered ,that people may not understand what's wrong ,but they will care of you care about them.My husband and I Live together now . It's not perfect, but a work in progress.I will always remember my mother accepting sport that not matter what it is all good and life goes on.Every once in a while I meet a young person ,who is hurting. I tell them It's OK! Lots of people have a nevouse breakdown and that I had one. Its OK it will can make you stronger if you get help.I have won my battle with cancer and have been cancer free since 2011. My friend Eunice's daughter now has been adopted into hour family.The best thing this summer was I took out my bucket list and renamed it my not so bucket list ,bucket list. I managed to cross of 4 more on the list . Next weekend go on a sail boat will be crossed off soon . After, that find a hot air balloon to try .This may take sometime got to find a hot air balloon. My 105 year old grand mother always said never ever give up she never did .She lived at home walked here dog 5 times a day,shopped for her own groceries with here debit card ,cooked here own meals.,up until 2 weeks ago.She deceived she was lonely and went to a old folks home. They tried to give a wheel chair ,she said I don't need that I am 105 ,but I still walk. I went to visit her yesterday, she was playing the panio and singing Happy Birthday to one of the residents. She is happy.
Wow Shan, what a story! There should be survival medals for people like you. I have never made a bucket list. I am happy just planning to still be here next year and still smiling! I can hear in your writing that you have a lot of love to give and there is much love surrounding you.
How joyous to hear your 105 year old grandmother playing the piano.
My silver lining is that having N (with C) has encouraged me to learn which things in life I truly need to do, which things I genuinely want to do, and that everything else is merely 'should-do,' and who on earth has time or energy for those? :-) I'm no longer so hard on myself about having a less-than-spotless home, for example. It simply doesn't matter as much as spending time with loved ones or pursuing other meaningful activities (I just registered to become an adult literacy tutor - the time commitment is only three hours a week, and it's something I decided I can't NOT do! :-)
I see my 'healthy' friends filling their lives with activities they begrudge the time for, but they do them anyway. Because of N, I feel more free to say, "sorry, no can do!" It's very freeing, in a way that I am grateful for. This doesn't mean I let myself off the hook for anything I don't feel like doing! It only means I take the time to carefully consider whether a given commitment is going to be 'worth' the time and especially the energy I'll need to give to it.
P.S.: Shan, after breast cancer, divorce, losing my home, and other big hits, I had a nervous breakdown too! Nice to know I'm in good company. :-)
Well said, Ranger - my silver lining is very much like yours! :-)
Ranger said:
Hello All,
It's much too late to write but I cannot resist commenting. Yes, thank God there are Silver linings in our clouds.
Tonight thinking about dealing with a very difficult disease and thankful that I have been set free from the "life of quiet desperation".... That life I see in people pretending to like "their job", "spouse and life" just passing time, but not living authentically. So few do live authentically and in the moment. We do live authentically, no choice, live moment by moment because that's all we have. It doesn't get more real than this. We can't pretend anymore "everything is "alright", we are who we are, and no denying that any longer. Looking on the bright side, the Silver lining - we are on the cutting edge of all that is true, real and authentic. Yes, it's hard, but would I choose to just let time fly by instead of cherishing each special good moment like my last? Never, if we see the special calling and the special choices each one of us takes, when we choose to make the best that we are dealt or given by the moment.
I'm astounded and joyfully overwhelmed by what you write of what you do choose, to do in spite of the disease. You are all the most amazing people I've never met personally. I look at you as the bravest and most courageous people on Earth. That alone helps me day by day deal with the things I don't still don't want to deal with but must.
Thank God for the gift of "now", of "an authentic life" that I never wanted to choose! And I mean that. Choosing to look for the Silver lining...it is there and it makes us free in a special way!
I wish today that you all can see a Silver Lining, because we see what we look for.
Sincerely,
Ranger
(PS: Writing is very difficult for me now the words, thoughts and even letters or words at times are gone, gone, gone. Reminding me of times past...but If I can't dance, should I not walk, if I cannot sing, should I not talk? Clear moments to get out some words in a somewhat sensible manner without gross errors means the world to me...)
I only have a few grey hairs. It must me because I take so many naps.
I donât need a âsleep numberâ bed. All I need to do is look at my futon and zzzzzzzâŚ
If I fall asleep in my clothes I can take the garbage to the curb in the morning when I hear the truck approaching. It will look like Iâm awake at 7AM.
Family rule: A decision Iâve made while falling asleep does not count.
Making a habit of discovering silver linings is a nice habit.
Carol that is a brilliant idea to look as if you were up really bright and early. I was just saying to my daughter a propos my 3 granddaughters who are all visiting for a month that kids pyjamas these days look good enough to go out in. I need to sleep in something that doesnât make it so obvious that I am still in my nightie when the postman calls at 7.15.
As for silver linings, I see lovely moments all the time with so many kids around (4 under 8s living in the house) but I canât say they are silver linings to my condition which frankly is a pain and stops me doing so many things I would like to. Perhaps the silver lining is that I am just about always available for cuddles.
Hey everyone, I'm new and finding this site is a big silver lining for me. I've been having some rough times but it pushed me to find this group. I have N with C and lately I've been starting to feel like an oddball - the one that doesn't fit in. I can't tell you how comforting it feels right now knowing that I'm not alone.
When the symptoms of N really first hit my personality and interests completely changed. I used to be so interested in math and science and I didn't really like talking to other people, but after N hit I became more interested in arts and all kinds of creative things and I love talking to all kinds of people. I see the world so much differently now and C gives me the opportunities to really take notice of the things around me.
A lot of people complain that they have the hardest time falling asleep and they can't sleep just anywhere. I love that I don't have that problem. Long car trip and stuck in the backseat? I just fall asleep and the trip feels like it was only minutes for me.
I never thought about the car trips, DayDreamer. That could be an advantage. As long as you are not the one behind the wheel, anyway. I'm glad finding the site makes you happy. Post about anything you like. We would love to hear your stories.
Princess Notso Bright, what an amazing post! So many things you have pointed out are so true and you are so right. A lot of the time we get so caught up in the bad, myself included, that we do lose sight of the simple things in life that bring us happiness. Those little things that quite literally "wake us up" each and every day! You are inspiring love and I love your outlook on your journey.
Thank you all to your responses!!! I love hearing the positive side of ones story!!! The more we focus on the positive, the better this journey seems to be. There are o many negative people out there and we are at a disadvantage as it is and we do not need others weighing us down. If you get the chance, look up on YouTube for a short movie called THE BUTTERFLY CIRCUS. My favorite quote is, "The greater the struggle, the more glorious the triumph!!!" Keep that in mind and it will help you to better appreciate your trials. Good luck to you all and know that my prayers are with each and everyone of you!!!
I have never really commented on here before. Because of my illnesses I use speech recognition so punctuation and capitalization are not at all accurate. So please please forgive me. but I have a few things that are positive to say about many illnesses as well narcolepsy. So here goes. I was medically diagnosed with narcolepsy in 2009. Before that I have been disabled since 2002, before that in the 80s and 90s I was extremely active in construction work, owner of my own maid service with other employees underneath me, a mom to 1 beautiful girl that was a gift from God, a wife 1988 and Thank God still today. In 2000 I sold the maid service and went into mobile home sales then in 2001diagnosed with rheumatoid arthritis osteoarthritis and fibromyalgia by 05 from steroids I was over 365lbs. In December 05 did the Lap Band surgery. Iâve been taking medicine and felt they weâre gonna start controlling all my illnesses and was no longer on steroids. Thank goodness. I thought to myself. âGreat Iâve got this under controlâ and with all my illnesses. I knew I couldnât go back into physical labor work. So I decided to get my GED and immediately started college for a bachelors degree in business management. By 2008 my daughter was graduating from high school.
I always tell others `God allowed me to become ill to slow me down. So I would pay attention to my daughter and get her through the difficult years of Jr high and high school. he could be successful in college herself. I was very active with her high school and I was losing weight tremendously she started college in 2008. Just a few months after that I was diagnosed with narcolepsy. The upside was I had been losing weight but I was still in the 200 range. The doctors put me on 20mg Ritalin not just 3 pills that is normal dosage. But my studies revealed I needed at minimum 5 pills a day of instant release Ritalin. now by 2009 my wight was 124 pounds. I was keeping all the other illnesses at obey and enjoying my college life and working at the animal shelter that I had been volunteering at and they loved my work so much they asked to hire me. Without me even applying. Wow life was going goI am disabled but it was all being managed very well. now I was always trying to figure out new ways to help lower my dosage of all my medicat. And back in 2003 to 2004 I head 3 or more foot surgeries. One of my doctor said if I didnât want to have any more surgeries start wearing Justin fat bottom boots. and he was 100% correct on that. I still stand by that in 2014. Now with wearing boots I wanted to pull the outfit together one day. so I but a cowgirl hat on. Thin realized I looked pretty dang good in it. Then one day driving my medicine started wearing off and as I started nodding my head back the brim of the hat hit the back of the seat it was enough stimulation to wake me up. I realized I needed to pull over make my phone call to a friend or family member to let them know where I was at and that I needed to close my eyes for a while. At that moment I realized my cowgirl hat I was wearing saved my life that day as well as other people. Because when I nodded off I was on the freeway driving over 75 miles an hour on a very hot summer day. So needless to say now any day I go out anywhere I have my cowgirl boots and hat on. Plus now I stand out even in a dark room. Lol when I go into the city theyâre asking me is the rodeo coming. Are you in the rodeo. and any hat I put on has a cross in the front and in the back along with several angels pins in the front and back. My local friends and family know what each of these mean. Stands for that I believe in the blood of Jesus Christ I have angels watching out around my head at all time. God encouraged me to wear boots so no matter how deep life depressing crap might get. I have the boots on and I have the hat that keeps the crap out of my eyes so I can keep my eyes opened and keep walking towards God. Sorry so long winded nothing small about me.
Well that brought a smile to my face. Thanks KathyJo for sharing. It can be difficult to see the silver lining when the direction of our life is radically altered by illness but in time something good comes out of everything. I have a lovely picture in my head of you in your cowboy outfit!
Nel
the cowboy/cowgirl hat and outfit is my everyday wear. I am all country girl 
.
