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 Posted 6/29/2010 11:57 PM |
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Group: Forum Members
Active: 6/1/2012
Posts: 4 |
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Will someone please share a success story of living with narcolepsy and functioning as a successful contributor to society? Everything I have been reading on the internet has me extremely scared and depressed about my husband's recent narcolepsy diagnosis. We have two small children and I've been holding it together over the last month since he has been a vegetable on the couch unable to work or function, and I am scared that our life is over. He has had signs of the disease for a while, but it has not been debilitating until recently. I have been pouring over the internet trying to research ways to help him. He is frustrated and unhappy and so am I. We have an appointment in a week with a neurologist that specializes in sleep disorders, but I need information now. We desperately need some encouragement and would like to hear from someone who is living and working with this disease and enjoying life. If anyone could share their success story and/or some tips for living with this disease I would greatly appreciate it! |
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Group: Forum Members
Active: 8/11/2010
Posts: 2 |
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| Please take a deep breath and hold on till you talk to the Neurologist/Sleep specialist. There are medications out there which can help. He may need to make some adjustments but there is help and you are on your way to one who can do it. He can and I am sure will be a productive member of society again, as well as a much happier member of the family. Please hang in there. |
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Group: Forum Members
Active: 7/16/2010
Posts: 5 |
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Hi Uberbusymom,
I have had narcolepsy since I was 15 (29 now) and I am able to live a reasonably normal life without too much hassle. I fall asleep around 4-6 times a day (just woke up from an unscheduled 1 hour nap ) and my nights are usually quite chaotic. My memory is hopeless and I am notoriously battling overweight. I cannot read books or stay awake attending a seminar (yet I just attended a 3-day conference promoting my startup, quite the challenge  ). I didn't study much in life because I couldn't stay awake in classes or study for extended periods of time.
I think life is great and I enjoy every second of it. My narcolepsy is a b*tch, but that's just what I have to live with. I choose to not use any medication because I don't believe that putting chemicals in my body every day for the rest of my life is a good idea. I tried several medications when I was younger, but I found them to do more harm then good. A drug like ritalin is an amphetamine, which means you get physically hooked to it. I refuse to lead my life as a junkie 
I have worked sucessfully for 6 years in office environments, which was very difficult from time to time. I didn't tell my co-workers in most of my jobs, because I found that it made me push myself more to stay awake. If I needed to sleep (usually 3-4 times a day on a normal working day) I would go to the toilet and sleep there. Let's just say that by now I'm a master at a) keeping my body in balance while falling asleep and b) falling asleep without pretty much anyone around me noticing it
The best thing to do in my opinion is realise that everyone has something in this life. Your husband might have narcolepsy, but you have to deal with that (and for partner's it can suck hard, I had a relationship for 6 years and we managed, but it was tough sometimes). Your kid might be bullied in school (independent from his dad falling asleep), your neighbour might have high financial debts, your milkman might have a messed up knee. Your boss might have diabetes. We all have to fight our own battles in life, and we all think ours is the biggest. It's not!
I have been leading a nomadic life for the past 3 years now, currently based in Kuala Lumpur for 5-6 months probably. I have travelled all over the world, couchsurfing and hitchhiking as I go. I am running my own company to keep myself alive, and I just started a new startup last week (and I am super-excited about it!). I find that being an entrepreneur of a completely virtual company allows me to work when I can, and sleep when I have to. I never meet any clients face to face, so I don't have to lie to anyone anymore (I hate laying and I'm bad at it )
Anyway, before I ramble this into book-size, what I wanted to say is: if your husband truely has narcolepsy (and I mean is holding the diagnosis in his hand, there are many related conditions) you better start adjusting your life to accomodate his specific needs. Trying to fight it is pointless and will cost you a lot of energy and frustration. People with narcolepsy can live decent lives, just as people with any other mental, physical or life-inhibited difficulties can. Look at the positive aspects, and it will become much more easy to deal with the negatives, trust me (been there, done that )
Hope this will cheer up your day a bit!
PS. PM me and I will send you a link to my travel blog, twitter and my company website, so you can see that I'm not talking out of my*****here |
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Group: Forum Members
Active: 7/16/2010
Posts: 5 |
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| Oh, and one more thing: stop reading on the internet (well, after reading my post, haha). It is evil and only highlights the people having problems. Nobody ever posts their success stories online, only their problems. It is human nature, and bad for those of us doing research |
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Group: Forum Members
Active: 6/1/2012
Posts: 4 |
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Thank you both for the encouraging messages. You are so right about everyone having some kind of problem to overcome. No one has a perfect life and the challenges we face only make us stronger. I guess I don't deal well with change and I've had way too much of it lately. I will keep hanging in there and reminding myself and my husband to take one day at a time. Life is full of ups and downs, and right now we are on a down so there is nowhere to go but up. |
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Group: Forum Members
Active: 7/16/2010
Posts: 5 |
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Great! Positive thinking!
A good exercise I find to make you think more positively is this:
Every day before you go to bed (or actually at any point in the day) ask yourself: what was good about this day? What can I be tankful for that happened today? Try to not let your mind get distracted by the big horrible stuff that happens. Even on those days (example: my father died 1,5 years ago) try to find maybe just one or two tiny little things you can be happy about (on that day my whole family was closer together then in a long time, my father had no pain when he died, etc). Do that as often as possible and you'll notice how much more easy things get. |
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Group: Forum Members
Active: 7/2/2010
Posts: 1 |
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| There's a blog floating around the internet somewhere by a girl with Narcolepsy and how she manages it. Unfortunately I don't remember what its called and no longer have the link to check. :/ |
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Group: Forum Members
Active: 7/9/2010
Posts: 4 |
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It is very very discouraging and scary and depressing when you don't have a way to manage a sleep problem. You are sleepy.. soooo tired ALL the time. But there is light at the end of the tunnel. I promise.
I have had narcolepsy since I was about 14. I didn't actually get diagnosed and treated until I was 20. I couldn't keep a job, I was gaining weight, I was failing my classes at school, I couldn't exercise, I couldn't do anything. I am not a lazy person at all, but my teachers, bosses, etc, thought I was. I had always been a very active, athletic child, but was gradually becoming sleepier and sleepier every day. Through those years, through high school and my first year of college, I was very unhappy and depressed. But I finally was able to get treatment. In one month of being on medication, I lost the 25 pounds I had gained. I, immediately, had energy! I could exercise again! I felt the way I SHOULD feel and that was the BEST feeling I have ever had in my whole life!!! I'm 25 yrs old now. I'm back in college, I'm healthy, energetic, I have lots of friends, I'm happily in love, and I still feel the way I SHOULD feel. Sometimes, it is hard for me to wake up in the morning and I do tire a bit more easily than some people. But those are simple tiny things.
Some people and/or doctors may suggest treating narcolepsy without medication. I respect that, because I've never been one to even take cold medicine. However, the medication has changed my life and I think, for me, its worth it.
I know it's very scary to see your husband going through this. My mom was always very worried about me and pushed to get me feeling better. And its good to have those people in your life. I hope this has helped you. I have every bit of confidence that your husband will be awake and on his feet soon. |
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Group: Forum Members
Active: 7/16/2010
Posts: 5 |
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@LadyKathryn: Out of interest, which medicin are you taking? I tried Modafinil and Ritalin, not liking either of them. Also, I'm traveling a lot and crossign borders with medicine is always a hassle (though definitely possible )
Great to see you manage to handle your narcolepsy so well though! |
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Group: Forum Members
Active: 7/9/2010
Posts: 4 |
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| sleepynomad, Provigil is what works for me. It's expensive tho. It doesn't have a generic. But, it's what I like best... i recently got switched to ritalin because of my insurance and can't afford it if my insurance doesn't help cover it. Ritalin doesn't work as well, but it keeps me awake ok. I'm still getting used to it. And Provigil is supposed to be safer. |
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