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#1 Heidi L

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Posted 23 July 2009 - 01:40 PM

This is what I have learned from hanging out on internet forums for Narcoleptics:
Narcoleptics are whiners.

I understand it, really I do- I know you're not thinking properly- I know you're exhausted- I know you are hypersensitive- I was a world class whiner myself- but shut up and listen a minute-

I can't believe so many of you won't try the gluten free diet or even get tested. Your symptoms are debilitating and the reported results are pretty consistent. You are so lucky to have a possible alternative. Even if it doesn't work, you haven't lost anything. Yes it's kind of inconvenient, but not nearly as much as disabling brain damage! What exactly is your goal? To prove to the doubtful that you really are sick? Well, you are right about that...

Women- You don't fool me. I know you've been on every other diet ever invented- eating disorders come with the territory. Low fat, low carb, calorie counting, vegetarian, fasting, purging, diet pills, laxatives, yadda yadda yadda. I know you're sick and tired and everything you've tried has just made you sicker and tireder. It's so much easier just to order a pizza. Funny thing though, maybe if you tried just one more diet you might feel better and have the time and energy to put into shopping for the right stuff and cooking again. You keep saying you wish you could care for and play with your kids- but just not enough to modify your recipes? It's likely that your kids are gluten intolerant too. You want them to suffer your misery? Or worse? I was too much of a wreck to ever have kids...

Men- I don't know why this idea makes you feel less vital. That somehow not being able to eat anything and everything lowers your status in that insane universal ranking competition between men. It's possible what you're eating is doing exactly what you're trying to avoid. Frankly I think it's much less awkward to say I'm allergic to wheat than to fall asleep in a meeting. What would you do if you were diabetic? Go blind and lose your toes so you don't have to admit a limitation? Damn, I'll never understand that. That's crazier than I am.

All you narcoleptics who have been tested for celiac and are negative-
One more time- it's a different antibody. IgA produces the acute intestinal symptoms. You must be specifically tested for IgG antigliadin. You went and got tested for a reason, you suspect it's your diet, your family has it, now just stop rationalizing and give up the gluten...

And You- you know who you are- the college student who keeps saying you can't possibly give up gluten because bread and pasta are the only things you like to eat: Stop complaining about your terrible fatigue and embarrassing cataplexy and your stomach-ache and irritability and your autoimmune disorders and depression and drug side effects and medical expenses and how nobody understands you and there's nothing you can do and Get A Freakin Clue! You're a wheataholic, and more obnoxious and in denial than all the alcoholics and addicts I know. If I could, I would duct tape you to a chair and detox you myself.

________________________

Yeah, yeah, I'm being a total b*tch. Whatever.

This is important. Just pay attention one more minute.

There's a reason you're a whiner. Narcolepsy is rapidly progressing brain damage and misery is the primary effect. You aren't depressed because of the symptoms- depression IS a symptom. In addition, you flat out don't have enough neural bandwidth to deal with everyday life. I'm telling all of you: Gluten is not worth it. There were times in my life when I would have cut off my own arm to know the information you are dismissing. Sooner or later it will get to the point that it's bad enough to try my horrible experiment. But maybe by then some other really useful function won't recover. Or worse.


I've seen the end-game and you need to know you're going to lose this one.
Eventually you will not be able to do or remember anything. At all.
That is, if you're lucky and the depression doesn't kill you first.
Panic, suicidal thoughts and impulsive behavior manifest decades before the dementia.
Desperate. Excruciating. Decades.

______________________________

I have been in remission for two years.
Come read my story and research.

#2 sunrisemoon

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Posted 23 July 2009 - 09:09 PM

I understand where you're coming from. I tend to limit my time here, because some posts do bring down my mood. I come here more for information than anything else. However, that is the site serving its purpose - allowing people a safe place to vent their frustrations. I also find your post rather insulting and offensive as a whole.

You've tagged every single person on this forum as a whiner and assumed most of us are so inept that we're purposefully not looking after ourselves because we can't be bothered. And the comments about diet etc? Totally disrespectful, in my opinion.

I certainly have no doubt there is no part of me that will become panicked, suicidal or impulsive due to my narcolepsy or any related depression I may or may not have. I may get pissed off from time to time, but hey, so does everyone else on the planet.

Speaking down to people, preaching and patronising them won't get your message heard.

I for one am very healthy, physically and mentally. I am a personal trainer. I eat well. I exercise daily. I also have narcolepsy. I know what I do that increases my symptoms and I don't whine or complain when I stuff up. I'm human. Sometimes life just gets in the way. How dare you assume I, or anyone else, lacks such control or intelligence that they are purposefully self harming by eating the wrong foods or not getting the right tests.

You may have some valuable information to offer and people may learn and gain something from what you have to say...IF you present your information respectfully and with a little compassion.

#3 Marcianna

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Posted 23 July 2009 - 10:18 PM

Heidi,

When you can figure out how to eat gluten free, cholesterol free, and vegetarian on $125 worth of food stamps for one month THEN you may be rude to me.
Till then: be nice. Or I am not listening to you.
And I doubt other will either.

Oh BTW. Calling people with neurological disorders Zombies is ridiculous, and insulting. I suppose if I had a diet of BRAINS my whole life would be better.... No wheat in brains right?


#4 sleepless sleeper

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Posted 23 July 2009 - 10:51 PM

The only person that comes to this site (she hasn't been here in a month or so well, I say that and she's here now.) that has used a gluten free diet and stuck to it and seen positive results is dogdreams. There is a user here that I talked to on Saturday that said she was looking into diet stuff, but I don't believe that it was gluten free. I know that there are others that discuss it, and some have asked me about it. We have yet to see what comes of this. Hopefully there will be another user here that can follow through and we can see positive results. There is a definite link with neurological impairment when a person is a allergic to gluten and continues to consume gluten.

I went on a gluten free diet in Nov and Dec '08. Maybe it was also Jan. It did not help with my n symptoms, but it did eliminate most of my MS symptoms. Since those are better now, I think that I may need to try it again. I keep talking about how melanoma and 6 months in bed have devastated my body and I can't get strength back. I think gluten free may help with this, also. It definitely can't hurt because I've gained a few pounds lately. Other than when I was pregnant, I am having a very hard time getting into my pants, which are the same size that I've worn since 9th or 10th grade. I have truly become a sloth. I don't believe that there should be any offense taken by how HeidiL says what she does because she has an extremely valid solution to a horrible disease that most people on here ignore or give up on.

deleted what shouldn't have been here Heidi has done this herself and has completely changed her life for the better. She was diagnosed with narcolepsy and parkinson's. She's been free of symptoms for quite a while now for both diseases, and she's done it by eliminating gluten. I know of several people on here, including myself, that have contacted her for help, and none of us has followed through. I think that she has a valid point considering a number of people here have asked her for help and are still having problems because they don't follow through. I'm sure not everyone, but the majority of these people fall into this category.

Marcianna, I know that sometimes it is offensive to hear jokes or comments about our condition from others as well as pwn's. Please try to remember that HL is/ was one of us. I know, it is still offensive to some. If it helps any, she calls herself that same term, or at least did. Check out her website, which has "zombie" in the title. There have been others on this site that have used that term, though. You are usually one that is tolerant of much, and I find it difficult to defend anything that is offensive to you.

I hope that everyone could at least try to understand the reason why HL speaks the way she does. Please refer to her past posts and see that she has never spoken this way before. She has what has PROVEN 100% to CURE her. Of two awful diseases, one of which does deteriorate your mind/body which then leads to a quicker death. I know her, and I know that she has a good heart and wants to help us. She has probably gotten to the point that she just wants to shake some of us into listening to her. I know it's because she cares. I hope that this helps some of you put this into a better perspective. HeidiL definitely deserves another chance if you consider who she is a person and that she sincerely wants to help.

#5 sunrisemoon

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Posted 23 July 2009 - 11:05 PM

The only person that comes to this site (she hasn't been here in a month or so well, I say that and she's here now.) that has used a gluten free diet and stuck to it and seen positive results is dogdreams. There is a user here that I talked to on Saturday that said she was looking into diet stuff, but I don't believe that it was gluten free. I know that there are others that discuss it, and some have asked me about it. We have yet to see what comes of this. Hopefully there will be another user here that can follow through and we can see positive results. There is a definite link with neurological impairment when a person is a allergic to gluten and continues to consume gluten.

I went on a gluten free diet in Nov and Dec '08. Maybe it was also Jan. It did not help with my n symptoms, but it did eliminate most of my MS symptoms. Since those are better now, I think that I may need to try it again. I keep talking about how melanoma and 6 months in bed have devastated my body and I can't get strength back. I think gluten free may help with this, also. It definitely can't hurt because I've gained a few pounds lately. Other than when I was pregnant, I am having a very hard time getting into my pants, which are the same size that I've worn since 9th or 10th grade. I have truly become a sloth. I don't believe that there should be any offense taken by how HeidiL says what she does because she has an extremely valid solution to a horrible disease that most people on here ignore or give up on.

sunrisemoon, HeidiL knows what she's talking about. I understand that you're not attacking what she is saying but rather how she is saying it. What you are saying to her is not much different than what you've said to me about a couple of things. And the "no whining" that she's talking about? Not much diff from what u'v said to me in other words, but she is and has placed info here several times to help people. She's done this herself and has completely changed her life for the better. She was diagnosed with narcolepsy and parkinson's. She's been free of symptoms for quite a while now for both diseases, and she's done it by eliminating gluten. I know of several people on here, including myself, that have contacted her for help, and none of us has followed through. I think that she has a valid point considering a number of people here have asked her for help and are still having problems because they don't follow through. I'm sure not everyone, but the majority of these people fall into this category.

"Speaking down to people, preaching and patronising them won't get your message heard." This is exactly what you've done to me. Go back to your post regarding dex. And btw, you never owned up to the toilet flushing in the opposite direction comment that you made to me. You were SO OFFENDED but when I pointed out that you first thought it was funny when someone else said it, you never apologized. You made a comment about people (me) not educating themselves, um... what are you doing here? How did you know what i have and have not done. You never apologized. Most of the comments I've made a couple of months ago regarding depression, etc? Half geared towards you. Maybe now is a good time to "sit on your hands" because you should have asked why HeidiL was making this comment the way that she did. What HeidiL says is with good intentions, but what you've said to me in the past has just been mean spirited. I say things sometimes that seem inappropriate or mean, but it is because I have lost the ability to communicate in a way that seems to be understandable by others, which only gives more creedance to what HL says and also to me trying the diet again. I have tried to explain this many times, but instead you choose to attack. Just the same here. Granted, HL should have prefaced what she had to say with the fact that others have contacted her, etc., and oh, now I see what Marcianna wrote. Yep, HL should definitely prefaced what she had to say considering how she said it, but it doesn't make what she says less valid.

Marcianna, I know that sometimes it is offensive to hear jokes or comments about our condition from others as well as pwn's. Please try to remember that HL is/ was one of us. I know, it is still offensive to some. There have been others on this site that have used that term, though. You are usually one that is tolerant of much, and I find it difficult to defend anything that is offensive to you.

I hope that everyone could at least try to understand the reason why HL speaks the way she does. Please refer to her past posts and see that she has never spoken this way before. She has what has PROVEN 100% to CURE her. Of two awful diseases, one of which does deteriote your mind/body which then leads to a quicker death. I know her, and I know that she has a good heart and wants to help us. She has probably gotten to the point that she just wants to shake some of us into listening to her. I know it's because she cares. I hope that this helps some of you put this into a better perspective. HeidiL definitely deserves another chance if you consider who she is a person and that she sincerely wants to help.


I didn't realise I had reason to apologise for anything. Nor am I going to apologise for anything I've said above. Making sweeping statements about everyone with narcolepsy being a whiner IS offensive. This forum is a collective group of intelligent people in various circumstances. To put down the group as a whole is simply not cool, in my opinion, no matter the intent.

SS you and I have very different perspectives on life. I won't take it personally if you choose not to read or respond to my posts in future.

#6 Mike M

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Posted 23 July 2009 - 11:44 PM

I am sorry that this thread is hurting many people, particularly because I believe that everyone who has posted here has good intentions. I often find it difficult to remember that every PWN that I have met (in person and online) has had a radically different experience of this disease. We all have faced many of the same types of issues, but one person's wonder drug can be another person's nightmare. I desperately hope that we will all work to refrain from lashing out at others, particularly in ways that lump huge numbers of people into one category. That said, I found myself shocked when I read the initial post here. I am a person who has attempted for two and a half years to eat a gluten-free diet. While I do fail on a consistent basis, I am well aware that I feel better when I am better about completely eliminating gluten. But, even when I am perfect in my abstaining from gluten, I still experience the symptoms of narcolepsy. Things are better, but my disability is not gone - not by a long shot. I have also been tested, repeatedly for celiac's and gluten sensitivity. And, I have been tested for IgA and IgG repeatedly. Thus, I struggled with the initial post, particularly because I HAVE done everything in the post and still experience the impact of narcolepsy. My point here is not to disparage Heidi or anyone else who has posted here. Rather, I am attempting to point out that no blanket statement about ANYTHING (in terms of narcolepsy - or anything else) is correct. And, instead of affecting change, such actions can utterly alienate the very people who the well-intentioned individual is hoping to help/motivate. I am grateful that we PWNs do have a forum that allows us to exchange our thoughts openly and passionately, but it is also vital that we are all magnanimous enough to forgive one another when we are swept away by our own insights and passions.

#7 sleepless sleeper

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Posted 24 July 2009 - 12:02 AM

It was a bit shocking, but I guess I had the background to what she is saying. I know a few others on here do also, but it is not everyone by far. She definitely should have prefaced what she said, but she probably didn't think about it at the time. There is no other reason that I can think of because she is an extraordinarily helpful and compassionate person. I can imagine that from her point of view that she is a bit fed up with being asked for help when the people that ask for it don't keep it up. I'm sure that it must be difficult for her to see others still having problems because she does care. She was fortunate to have her symptoms for both diseases clear up 100%. I bet she thinks that if she could help just one of us then the badgering is worth it. Of course, I don't know this for sure, but I'm basing it off months of contact that we've had with one another. And I'm like you, gluten free was not the answer for me, and I was 100% strict and faithful. Also, like Marcianna touched upon, it is expensive to eat gluten free if you want any kind of grain in your diet, and if you're on a restrictive budget, it is awful to try to make ends meet.

Just to let everyone know: A gluten free diet is helpful only if you are allergic to gluten. Unfortunately, you must be very strict and 100% faithful to the diet. Any amount of gluten at any time will void all progress. Just think of other allergies, and this will make sense to you. Some people that are allergic to peanuts cannot eat foods that are processed in a factory that also processes peanuts. Sometimes even dusty remnants can render them in the ER. What is most frustrating about going gluten free is that there are so many foods that should be gluten free but are not placed in the gluten free category because of where they are processed. One thing that made me feel like the diet was futile was when I emailed a company to ask if or which of their canned foods (which wasn't that many) had gluten. The response stated that I had to send an email for each individual product that they produced. Now, multiple this by every product that you want to find out about that isn't on a small, publicly available list. Is it worth it? I think so if you are one of the fortunate ones that it can help. Once I was on the diet, it got easier with time.

#8 Marcianna

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Posted 24 July 2009 - 10:04 AM

Im glad it is working for her. I really am. good for her!

But that is no Excuse for her to come here and call us whiners and tell us to shut up and listen. There was absolutely NO reason to be rude the way she was and attack us trying to make us feel like idiots based on her opinions and research. I also think that the Gluten free diet is worth looking at ( for those who can afford it) I know people who do very well with it. So I am not disagreeing with her actual point at all. But she really should have found a better way to make that point. FLAT OUT RUDE... was not her best option.

I am a huge advocate for not doing brain drugs, such as Provigil and Nuvigil and Ritalin.... but you will never ever see me come on here and tell people they are WRONG for their choices. Or they are inept in any sort of way. Because they are their choices and I absolutely respect them. It is their bodies and they can chose the treatment they wish.

#9 sleepless sleeper

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Posted 24 July 2009 - 11:27 AM

I posted this on my fb page. Somehow I missed the part where she directed her comments to a specific person. That crosses the line for me. The fb posting is now removed.

I was able to read over the shut up and listen comments and the whiner comments because I believe that I can see it from her point of view. Making blanket statements to men and women in general was OK with me for the same reason. I was able to focus on the last paragraphs, which make valid points that should get people's attn. And that is what this whole thing is. EXCEPT it should never have been made personal. At first I thought that it was "students", but now I see that it was not. The statement regarding duct taping this person to a chair is mean and name calling is not justified. I understand her frustration but not to this point.

The other stuff? Well, it got everyone's attn, didn't it? You should see the responses that I got on facebook. Very interesting. I think that the responses possible validate her point a bit.

#10 Bafflegab

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Posted 24 July 2009 - 11:23 PM

It seems to me that Heidi's post is much angrier than I would imagine anyone being after two years of living symptom-free. If I were symptom-free for that long, I can't imagine I'd be so militant. Heidi's anger seems to be out of proportion. I think it's great that she is passionate about her beliefs, but I think it's misdirected.

#11 eww

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Posted 25 July 2009 - 04:37 AM

As a woman who is pretty ok with her own body and whose only previous memorable attempt at dieting was one week five years ago in support of her father, I find the constantly-dieting-female stereotype mildly insulting but laughable. After one week on the "South Beach Diet" I went to a friend's birthday party, got drunk and gorged on fruit and snacks. LOL. So that is flawed logic right there.

I'm currently eating gluten-free. I still have accidental naps. And I smacked my face on a table giggling last week. Is eliminating gluten helping? Maybe, probably. Is it very expensive for someone on a budget? Undoubtedly, I don't imagine it will be sustainable long-term. Is it a cure? For me, no. I have looked into your "Theorectical Zombipathy" and there are some very good points. There are also some kinda sketchy aspects that I'm on the fence about or disagree with.

I have no problem putting my money where my mouth is. However I'm not thrilled with the idea of putting non-existant money where your mouth is. Though I do find it intriguing that you're whining about not wanting to listen to us all being whiners. Personally I say join the club. I hope you feel better after your rant. I know I usually do.

#12 2muchcoffee

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Posted 26 July 2009 - 08:19 PM

Wow... I've been trying to figure a response to your rant. I at first had some pretty nasty words for you, Heidi, but I always try to go by the old saying of 'If you don't have anything nice to say, don't say anything at all.' .
I'm assuming by the way you went off on all of us people/whiners who suffer from narcolepsy (apparently we suffer needlessly, because we want to watch the world pass us by) that you're trying to encourage us to all go for the gluten free diet. Well, you didn't prove your case very well. It seems that this gluten free diet has some awfully harsh side effects; moodyness, irrationallity and becoming a total *BEEP*. Those are some side effects I personally could do without. It's great that this theory worked for you, but as proven by ones with an actual medical background, narcolepsy is a very hard disorder to understand and treat, let alone cure. It's amusing to me that you think you've found the one cure that nobody else has been able to pinpoint... I look forward to hearing your cure for all other diseases like cancer, heart disease, HIV... you might be a real hero! Until you can attach MD to the end of your name, keep your expert opinions for all of us whiners in your gluten free mouth.

#13 greatbig47

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Posted 27 July 2009 - 10:32 AM

Not too crazy about Hiedi's methodology. Coming on the forum and making a generalization of all of us takes a lot of cojones.

I'm not a whiner.

There are some people who haven't figured out what works for them might not work for everyone else.

Thanks for starting the conversation...I guess.

#14 merrymom1013

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Posted 27 July 2009 - 05:44 PM

Not too crazy about Hiedi's methodology. Coming on the forum and making a generalization of all of us takes a lot of cojones.

I'm not a whiner.

There are some people who haven't figured out what works for them might not work for everyone else.

Thanks for starting the conversation...I guess.



#15 Irishhh

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Posted 27 July 2009 - 06:19 PM

I'm glad gluten free worked for you.

I don't really have much to say right now. I feel I need to put my point out there that I am a VEGETARIAN, and it is not a diet. It is a way of life for me, not about losing weight or anything of the like. I love animals and don't want to eat their face. That's it. and I've been trying the gluten free thing, the only difference it really has made for me is that my stomach doesn't feel so full. Which by the way, I am not fat or lazy or a whiner. I'm 115 lbs and exercise and eat healthy. Not to mention I push myself to my limit and beyond daily. You shouldn't speak so condescendingly to others, it isn't nice.

#16 NarpocalypseNow

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Posted 29 July 2009 - 10:56 AM

As a new member here, and as a newly diagnosed lucky winner of a narcolepsy disorder, I found this post to be both interesting and slightly offensive.
First off, I've never heard of the connection between gluten and narcolepsy, in fact, i don't even know what gluten is?
Does that make me an idiot? I don't think so.
I can replace the flyback transformer on a G07 arcade monitor, replace the carb on my Jeep with a throttle body fuel injection system, and write computer programs (my day job). Does that make Heidi and idiot because she doesn't know how to do these things? I think not.
An educating post would have been much more helpful than insulting members that may not even know what gluten is (me). I've never cared about my diet, so I don't know what a carb is (unless we are talking about engines), or a calorie, or anything. I've never been overweight, so it wasn't important to me.

I don't know anything about the test involved to find about this, etc. Althought the post was midly offensive, at least I now know there are some more questions I can ask my doctor.

#17 Mr BluBerry

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Posted 04 September 2009 - 05:40 PM

hi all, been a long time since ive been here

im gonna go out on a limb and say that i agree to a certain extent to Heidi L.

sure nobody likes being called a whiner and the way she said what she said was pretty harsh, but instead of actually looking at what shes trying to say, everyone more or less has attacked her in return and complained more.

i stopped coming on this site cuz i felt it did more damage that good for me. when im around non narcoleptics, i have to bite the bullet and use all my strength to behave as normal as i can, cuz i know that everyone has problems some way or the other, and most people just get on with it. but when im on this site, i feel as though i have an excuse to be depressed, that i have an excuse to feel how i do, and then i sometimes get confused and i dont know whether or not im behaving how i am because i actually feel very ill or because i feel as though i have an excuse to feel ill.

ive been gluten free for a few months now, and ya know what, if any of u who have been on temporary gluten free diets actually did it correctly, you would have different responses. going gluten free has actually been extremely beneficial. in no way am i cured of N, i still get EDS, mild C, SP etc but when i have gluten, my symptoms are much much worse.

also, let me tell you all how easy it is to go gluten free: eat RICE or POTATOES instead of bread and pasta, and u can eat any meat u want, and almost any vegetable u want.

it is not expensive AT ALL and its so simple. i know that specifically made gluten free products are expensive, but why pay for it when u have cheaper alternatives?

whenever i go to a restaurant, i just ask the waiter 2 speak 2 chef and find out whats gluten free, and if u live in a economically developped country where health and safety are as high priority, u will get a clear cut, straight forward answer. plus, most places will happily replace any bread or pasta or anything with wheat in for rice instead.

but one thing that i agree with, is that even the minutest bit of gluten makes you feel ill all over again. every now and then i get really bad C and N out of the blue, and i know its becuase i mustve had some gluten by mistake, but its just a minor set back.

you just need 2 feel confident and strong enough to go gluten free. its not even hard, but one thing you need 2 bear in mind is that u will need 2 be on a gluten free diet for at least a month or even 2 months before you notice a proper change. if u go a week or 2 weeks without gluten, it will not really help and you will not really notice much of a difference because you need 2 have time for your body to get rid of all the bull*BEEP* that was in it from before.

what i beleive heidi l was trying to say was that u shud all at least try a proper gluten free diet for a reasonable amount of time and to identify that our depression is part and parcel of our N, and that its a vicious circle that keeps us locked in this illness. since ive gone gluten free, ive not really been depressed anywhere near as much as i used to be. if ive noticed a change in myself, and she has noticed a change in herself, if dogdreams has noticed a change, then maybe the rest of you may notice a difference aswell. but still it comes down to how dedicated you are to the diet, because like i said, even the smalled amount of gluten triggers N.

anyways, sorry for the long ass post. im in my narco rambling mode lol. and it feels quite refreshing to be back :P

#18 sunrisemoon

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Posted 04 September 2009 - 09:47 PM

hi all, been a long time since ive been here

im gonna go out on a limb and say that i agree to a certain extent to Heidi L.

sure nobody likes being called a whiner and the way she said what she said was pretty harsh, but instead of actually looking at what shes trying to say, everyone more or less has attacked her in return and complained more.

i stopped coming on this site cuz i felt it did more damage that good for me. when im around non narcoleptics, i have to bite the bullet and use all my strength to behave as normal as i can, cuz i know that everyone has problems some way or the other, and most people just get on with it. but when im on this site, i feel as though i have an excuse to be depressed, that i have an excuse to feel how i do, and then i sometimes get confused and i dont know whether or not im behaving how i am because i actually feel very ill or because i feel as though i have an excuse to feel ill.

ive been gluten free for a few months now, and ya know what, if any of u who have been on temporary gluten free diets actually did it correctly, you would have different responses. going gluten free has actually been extremely beneficial. in no way am i cured of N, i still get EDS, mild C, SP etc but when i have gluten, my symptoms are much much worse.

also, let me tell you all how easy it is to go gluten free: eat RICE or POTATOES instead of bread and pasta, and u can eat any meat u want, and almost any vegetable u want.

it is not expensive AT ALL and its so simple. i know that specifically made gluten free products are expensive, but why pay for it when u have cheaper alternatives?

whenever i go to a restaurant, i just ask the waiter 2 speak 2 chef and find out whats gluten free, and if u live in a economically developped country where health and safety are as high priority, u will get a clear cut, straight forward answer. plus, most places will happily replace any bread or pasta or anything with wheat in for rice instead.

but one thing that i agree with, is that even the minutest bit of gluten makes you feel ill all over again. every now and then i get really bad C and N out of the blue, and i know its becuase i mustve had some gluten by mistake, but its just a minor set back.

you just need 2 feel confident and strong enough to go gluten free. its not even hard, but one thing you need 2 bear in mind is that u will need 2 be on a gluten free diet for at least a month or even 2 months before you notice a proper change. if u go a week or 2 weeks without gluten, it will not really help and you will not really notice much of a difference because you need 2 have time for your body to get rid of all the bull*BEEP* that was in it from before.

what i beleive heidi l was trying to say was that u shud all at least try a proper gluten free diet for a reasonable amount of time and to identify that our depression is part and parcel of our N, and that its a vicious circle that keeps us locked in this illness. since ive gone gluten free, ive not really been depressed anywhere near as much as i used to be. if ive noticed a change in myself, and she has noticed a change in herself, if dogdreams has noticed a change, then maybe the rest of you may notice a difference aswell. but still it comes down to how dedicated you are to the diet, because like i said, even the smalled amount of gluten triggers N.

anyways, sorry for the long ass post. im in my narco rambling mode lol. and it feels quite refreshing to be back :P

I tried gluten free and it wasn't for me. I find just making sure I'm healthier in general (exercise, eat well), my symptoms are improved to a degree.

The aggressive tone of Heidi's post still bugs me, but I do agree with you about sometimes feeling worse when I read here. I know it's a place for support and empathy, but it should also be a place to promote positivity and encouragement about the things we can do and achieve. I posted on 25 August about the trek I did. I wanted to show that there are times when we can have more control over our body than normal, using a bit of sheer determination and not giving yourself an option of backing out of (whatever it might be). I didn't post because I wanted people to say anything in particular, but I would have liked someone else to say hmmm maybe there really are days where I can do more than I think I can, if I just want it bad enough...and how much does mind over matter really play a part in our lives? But it's been viewed 30 times and not one response. It doesn't bother me on a personal level that nobody responded - I shared something that was important to me and that's what counts. Our brains are powerful things. Sure, they can make our lives difficult with this stupid illness, but the flip side is that we can use that power for our own benefit. Who knows to what extent, but it's worth trying, isn't it?

I dunno... I want to be positive about the things I can do, in between the moments of empathy and frustration at the speed bumps we're made to deal with day to day. I'm not the only one who's felt like being too positive on this forum was/is a bad thing and it makes me apprehensive to post more often. Bit of a bummer, really.

#19 eww

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Posted 05 September 2009 - 02:31 PM

I get that some people are frustrated with the tone of a great number of posts here. It makes sense to want to communicate with people who not only understand where you are coming from but also understand where you are now. Now you are at a good place. Unfortunately not everyone here is. Because NN is one of very few places where people who are struggling can come and find other who understand the struggle, those will be the majority of posts. Think of when you were newly diagnosed. Didn't you want/need somewhere to openly grieve and question what you thought you knew about yourself and the idea of normal? I know I do.

The outside world is filled with people telling me to buck up, determination will get me through, look on the bright side. There are very very few who say:

"that sucks. it must make you feel...

frustrated/sad/angry/lost/hopeless/confused/cheated/confused/relieved/scared/strange/curious/hopeful/funny...

tell me about it."

Even fewer who understand when I do tell them about it.

It doesn't mean that the negative posts on here are ALL we feel. Personally, I feel so many things all at the same time. Sunrisemoon, I read the post about your trek. It was a great post. It was just what I needed at the time and I thought of it as I went on a portage camping trip this past week. My trip was a success as well. Just because I didn't respond, didn't mean I wasn't thinking of it, of you, and bringing that positive attitude into my own life. It must be frustrating to you, wanting someone to share their joys as you shared yours but give us some time and I'm sure it'll happen.

The gluten-free thing is an idea that has been floating around here for a while. I find the idea that those of us who have found various barriers to the diet or that it was not as helpful as it has been for others have been dismissed as not doing it properly insulting. I'm not saying it isn't all that you claim, just that it isn't all that you claim FOR ME. And that others get to make the decision for themselves without blame or dismissal. I DO find it expensive and seeing as I'm the one that pays my bills I get to make that decision. I'm not sure which restaurants you frequent, but my limit is those slightly above fast food. Heidi does have some good points in her research. But coming to a site for SUPPORT and presenting her ideas the way she did will never get an overwhelmingly positive result. I'm sure you know what they say about honey vs vinegar.

I agree that trying out the gluten-free thing is a great idea. I think insulting those whose results differ is a bad idea. Especially here.

I don't want to irritate anyone. I respect the views and people posting, I just thought I'd explain some of the possible reasons WHY people reacted the way they did and some of my thoughts behind NN in general and the attitudes often expressed in the forums.

#20 hathor

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Posted 13 October 2009 - 02:27 PM

There's a reason you're a whiner. Narcolepsy is rapidly progressing brain damage and misery is the primary effect. You aren't depressed because of the symptoms- depression IS a symptom. In addition, you flat out don't have enough neural bandwidth to deal with everyday life. I'm telling all of you: Gluten is not worth it. There were times in my life when I would have cut off my own arm to know the information you are dismissing. Sooner or later it will get to the point that it's bad enough to try my horrible experiment. But maybe by then some other really useful function won't recover. Or worse.


I've seen the end-game and you need to know you're going to lose this one.
Eventually you will not be able to do or remember anything. At all.
That is, if you're lucky and the depression doesn't kill you first.
Panic, suicidal thoughts and impulsive behavior manifest decades before the dementia.
Desperate. Excruciating. Decades.




Do i have a differant type of narcolepsy to everyone else??? ive had the good luck to see some off the best specialist in the world on narcolepsy over the past 20 years and not one of them has ever told me anything like this. yes i get down in the dumps soometimes but who doesnt? people with severe depression who dont have narcolepsy die all the time, i found that sentence very offensive along with most of the rest off what heidi said. instead of coming on here and having a rant that has offended people she could have easily come on and said "hey guys!!!! ive found something that helps u should give it a try!!"
she claims that a gluten free diet has helped her but from where i am sat she seems to have a whole lot of anger going on there or could that be depression judging by the negative words she likes to use?
since coming to this site i have read lots of post from lots of different people dealing with narcolepsy and cataplexy etc, non of them have offended me like this, i thought this was a place i could come to learn or help in a civilized polite way, or even let off steam without saying harsh things like this.
when i joined this site i agreed to the terms and conditions set, and i still do. they do say not to post things that could offend.maybe heidi should have a re-read of them. speaking of heidi, she put that post up and hasnt responded to any of the replies.would be nice for her to,and to hear her response,even tho she has offended she still has an opinion and if she can choose her words more politley i would like to know more.