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 Post subject: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Wed Apr 16, 2008 7:41 am 
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I was diagnosed with Narcolepsy almost 3 years ago. Yet now I feel like I have gotten the diagnosis all over again. I saw my Sleep Doctor last week. He told me that the meds cannot make me "normal" and that I'd waver between not sleeping enough at night and falling asleep during the day. It all depends on how I take my meds.

So I feel like I've been handed the diagnosis all over again. I have to learn how to deal with this. My T told me that I should not change my life-style. That I should still do the things I want, and that if I fall asleep, I fall asleep. He said my friends would understand and not hold it against me. I said it's embarrassing to fall asleep at events, but he said that's just the way things are.

I also told him that I sometimes think that I'm "making this up." Of course that's not true - I have a real diagnosis. I have sleep studies to back it up. But part of me still thinks it's "not real."

So I have to radically accept that I have this illness and it's not going away. That I will be tired and fall asleep at inappropriate times. It's just the weirdest thing to me.

Do I just sit here and say over and over "I radically accept I have narcolepsy and that I will fall asleep at various times."? Will it eventually sink in?

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Wed Apr 16, 2008 10:17 am 
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In my own opinion, a better way to start out might be by identifying and self-validating the feelings you have about this diagnosis and how it feels to live with it. Then you can radically accept the whole package, rather than trying to use radical acceptance to turn off your feelings, which is a mistake I've made in the past (not saying you are, just giving another POV).

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Wed Apr 16, 2008 11:09 am 
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I do think self talk is a good thing. But I'm thinking perhaps say something a little different. Like, don't say "I accept..." if you don't yet accept. Just say "I have narcolepsy and will fall asleep at various times.".

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Wed Apr 16, 2008 3:04 pm 
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Thank you Ellen and Ann. I like the idea of saying that I have the illness and that I fall asleep. I can say it a few times a day. That doesn't necessarily mean I accept it - it just means that I know I have it. Then maybe acceptance will come in time. That's a good idea. It's better than pushing my feelings away and not accepting them. Thanks!!!!

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Wed Apr 16, 2008 4:28 pm 
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Bordergirl wrote:
That doesn't necessarily mean I accept it - it just means that I know I have it.

That's actually the point of radical acceptance. I think the word "acceptance" throws us off. Radical acceptance is looking at things as they truly are. Without judgment and without denial. If it works by taking the word "acceptance" out of the equation, then hell, go for it!

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Thu Apr 17, 2008 2:08 am 
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I love both of those ideas and plan to use them myself. Thanks, guys. :D

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Thu Apr 17, 2008 9:06 am 
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Thanks Trinity! So it's like saying "I know I have narcolepsy" and not judge it. Just know that I have it. I think putting the judgments on things is what throws me off. When you judge, it's like you're saying you don't accept it, it's a bad things, etc. etc. It's like saying "it's raining out today." You're not saying it's bad because you can't go for a walk or anything like that. You're just making a statement as to how things are. It's like walking on a tightrope and trying to keep your balance, not falling off. Just focusing on WHAT IS. That's pretty cool.

I actually slept until 9:30 today. I must have been really tired! But I woke up with a headache - maybe I overslept. But at least I got the sleep I need. That's nice.

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Thu Apr 17, 2008 10:53 am 
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And let me point out that ACCEPTING something does NOT mean that you have to like it!

For me, acceptance is much more of an acknowledgment of the facts.
I can't do a darned thing about ANY problem if I'm not willing to open my eyes, see what is really going on and accept that "it is so" at this moment. Trying to cope with something that I refuse to admit leaves me fighting shadows. There can be no solution to a problem "I don't have".

Once I AM clear on the situation I have options.

You do not have to like something to radically accept it. We may choose to accept the truth about some person, place or situation but that does not mean that we find that truth acceptable. My XBF used to tease me and insult me and make all sorts of "dead cat" comments. I tried to ignore it and go on like things were just fine. That didn't work out so well...I finally had to accept that he's not always a nice guy, and that sometimes he can be downright mean. I don't find the behavior acceptable at all (!!), and I don't tolerate it anymore. I couldn't change the situation (him), but once i accepted that there was really a problem, I could change my response to that situation.

With this "new" diagnosis, you could try to pretend it isn't real but that won't stop the symptoms. You could try to pretend that it's taken over your whole life, but that isn't really true, is it? Narcolepsy's not really a new part of your life - it's been there for a while. It just has a name now. Managing it may require some adjustments to your routine, but you've already been living with it. It is. It just is.

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Thu Apr 17, 2008 6:30 pm 
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Yes Minx, narcolepsy has been a part of my life for almost 3 years now. I think I always thought the medication would make me "normal" but I see now it's not possible.

I told my T that the reason I have trouble accepting the diagnosis is because when I was younger my mother often did not believe me when I told her I was sick. (I tried to get out of going to school a lot). So I was sort of like the boy-who-cried-wolf. So I grew up thinking that when I actually WAS sick, I was maybe making it up. So that's how I am with this diagnosis. I just doesn't seem real to me. But I know it's real.

This hasn't actually taken over my whole life. I can SAY it has, but that's not true. It can only take over if I allow it. I think I just have to learn to make adjustments. That's the rational thing to do. My T also said that like my friends need to know I have it so if I do fall asleep at inopportune times, they will know why. I find it embarrassing to fall asleep at odd times, but he said I have to get over that and just accept it. Do you know I've never met anyone who has narcolepsy, at least not that I know of? I asked if anyone here on the Board has it, and no one said they did.

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Thu Apr 17, 2008 8:59 pm 
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I actually do know someone, but I haven't seen her in a while.

It might not be such a bad thing to tell your friends. As embarrassing as it may seem, I don't think people will think badly of you - especially if they know what's up. It could even help keep things OK in the future. I mean, if I were hanging out with someone and they kept dozing off on me, I might think that I'm boring them or that they don't care. But if I know that there's a reason for it, I'm not as likely to get upset about it. And if you ever get in a spot where you might need help, then they'll already know and understand.

I'm a bit of a hypochondriac myself - never sure if I'm getting sick or not and usually overreacting. Matter of fact, I've got some joint and muscle pain along with feeling really tired. I was worried today that I might be coming down with something...or it could just be after effects from moving all the plywood and drywall last weekend. I get occasional muscle spasms which pinch my nerves and make my arm shoulder and chest hurt and I've taken that to the emergency room more than once, scared of a heart attack. Throw in a tendency for vaso-vagal syncope, which basically means that every rare now and again the signals fr my brain to my heart get mixed up, my blood pressure drops and I pass out. Afterwards I'm fine (which just makes it worse - took a while to track that down!) but it sure can scare ya!

So am I really sick, or am I just exaggerating a perfectly harmless symptom? I can really understand that line of thought...But you're OK with this. You've got the tests, the official doctor "seal of approval". You aren't making it up - there's really a reason and a name for it.

When you didn't know what it was vs. getting a diagnosis...how different does it feel? Better to know you weren't imagining things, or bad because it's another condition? Or maybe both?

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Fri Apr 18, 2008 6:12 am 
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Bordergirl wrote:
Do you know I've never met anyone who has narcolepsy, at least not that I know of? I asked if anyone here on the Board has it, and no one said they did.

My stepdad had it [he died from a heart attack about 7 years ago], so the symptoms of narcolepsy were prevalent in our household, bordergirl. He must've gotten dx'd in the 60s or 70s... and he had a high-security clearance in the government and didn't want the dx on his public records [drivers license, etc.]... so his method of treating it was pretty rudimentary. He'd take speed to stay awake - probly contributed to his volatile nature, eh? - and sleep on the couch all hours.

Besides the irregular sleeping patterns, his body would react when he experienced strong emotion - especially humor or anger. His muscles would go limp - everything from his facial expression to his legs - and sometimes he'd fall to the floor, unconscious. Do you experience this seizure-like episode as well?


~ jr

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 Post subject: Re: Need Help Accepting Narcolepsy Diagnosis
PostPosted: Fri Apr 18, 2008 7:55 am 
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JR, I've heard of that. People falling asleep and going limp from extreme emotions. No, I don't get that! I'm so grateful. I'm so emotional - I'd probably be dropping off all the time!!!! Thanks Minx for your suggestion. I have told a few of my friends. I still hope they don't think I'm "bored" when I'm with them. I usually don't fall asleep, but you never know.

I guess in the "old days" they didn't have the meds that they have now. Not that what I take works 100%. But it's probably better than taking speed. I couldn't tolerate that stuff. It would make me crazy, I know it.

Minx, I understand how you feel. Before I was diagnosed I wondered what was going on. What was wrong with me, if anything. When I went for the sleep study, I was kind of hoping for the diagnosis of narcolepsy because I knew that would confirm what I was feeling and going through. If I hadn't been diagnosed with it I would have thought I was just crazy.

It's hard to get older and have things happen to us. My T keeps telling me that a lot of what I feel is just "getting older" stuff. I got angry when he said that to me. But maybe it's true. I know you're not that old Minx. But still, our bodies change. And we do have to watch out for the scary stuff. I'm not really a hypochondriac anymore. The thing is, having fibromyalgia makes things difficult. It's like my body is not fine-tuned anymore. I get all these aches and pains and feeling like I got run over by a truck. I woke up this morning with butt-pain! It's hard to walk. But I need to stretch my muscles to get rid of the pain and soreness.

Thanks for all your replies!

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