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At My Breaking Point (Part 2)


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#1 AnonPerson

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Posted 26 December 2013 - 02:18 PM

First topic: http://forums.narcol...breaking-point/

 

EDIT: Need help reading new situation:

Also, question to everyone, my dad and mom has decided to take it upon themselves to call my doctor (I'm 21, so I don't see how they did this without my permission when I didn't give them consent in any paperwork), and make an appointment to "talk" to him about what I need to do, and to tell them that when I told him I try to go to bed at 11pm and I try to wake up at 7am, that I don't really do that (I told the doctor I tried, seeing as how I work at 8am, and school at 830am on other days). And that I smoke e-cigs sometimes. And I don't exercise that much at the moment (but I did in the past). They are only going to try to prove the doctor wrong, and that I don't really have it. I think I am going to cancel the appointment, or at least express to the doctor that I want all my information to remain confidential and not be discussed. What should I do? I emailed my parents, and told them that I think I am going to cancel it, but that I will see a counselor, and afterwords they can see that same counselor. Would that be appropriate?

 

/END EDIT

 

So, here I am again. I'm very bad at keeping things brief, so I apologize if this ends up being longer. I'm tired now, so my thoughts might not be as connected either. I'll try.

 

As of recently, I feel a little better. I lost my job at the doctor's office without a warning. I guess it was just one time too many. But, he / she was also scamming patients and I refused to cut lenses / charge patients' amounts that weren't correct, so there was that tension at the end of my line of work with him / her. It's hard for me to just sit by when stuff like that is happening. But the main reason was probably being late on a busy day. I tried, that's what counts.

 

In terms of my mood, I've been sort of in the same spot as last time, but I feel less sick. So I am happy about that. I see a highly ranked psychiatrist soon, and I am trying to make more appointments as well with neurologists and such.

 

Here is why I come to post this new topic.

 

I just received an email that really upsets me. I can't remember if my last topic had stated, but I am 21 years old. I did live by myself from 18-20, and moved in when I switched universities as the university I was attending didn't have my major. Seemed like a good way to make money. I live with my dad, and my mom lives with my brothers about 30 minutes away. I have been staying there mostly, now.

 

But, I digress. I just received an email from my dad stating that he thinks I could be manipulating school, doctors, and family members, into thinking I am narcoleptic for certain advantages, when I really don't. In fact, my parents recently had a meeting with me in which they told me that they know I don't have narcolepsy, and that the sleep studies are not accurate at all. I am not a rude or rebellious person, and you'll have to take my word on that. I've been praised for my manners all my life. I hate disrespecting others, and it hurts to think that now my family members, dad specifically, thinks I am faking narcolepsy. I don't know what to do. My mom bought me a shirt saying I'm only lazy when I'm awake, and I think / know she meant it to be funny, but I can't laugh at it when I know she doesn't take anything I say seriously in terms of anything regarding narcolepsy, sleep studies, and the like.***

 

Is there some good links to provide to help educate my family (nicely, not in a rude way?). They seem to think that all sleep studies are bogus, and don't tell anyone anything in terms of medical conditions. The only one who believes me in my family is my closest in age brother (older than 18). 

 

I never saw myself in a situation where certain family members would be against what I am saying so much.

 

AnonPerson.

 

*** = Nothing was found conclusively in my overnight test. During the 5 nap test, I had an average of 4.6 sleep latency but only because I had a MAJOR headache on the last nap which boosted up. Otherwise, I would have a 2.5 sleep latency. And I entered REM sleep instantly in 3/5 of my naps. 



#2 Hank

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Posted 26 December 2013 - 05:21 PM

Well, the overnight test is not where the Narcolepsy diagnosis is made- it is the REM on the MSLT. There is simply no way to fake that and your results speak for themselves.

 

As far as educating your family- or some magic pamphlet- it won't make a difference. If any of them were interested in learning, they could keep themselves busy will medical journal articles or even on this website.

 

The unfortunate reality- especially at this time of year- is that they are simply not interested enough to learn. When and if they do, you could certainly help them then.

 

My best suggestion would be for you to get some personal counseling to help you come to terms with the fact that your family is not interested. Once you have done that, it will become less important to you that they do not. Of course, that will change some relationships- and that can be a good thing. And change promotes change.

 

Happy New Year.



#3 Ferret

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Posted 26 December 2013 - 10:25 PM

It's too bad that your family isn't backing you up. Their loss not yours.

For some reason, some parents take it as a personal affront when something is wrong with their child...almost like they have produced defective merchandise. I don't get it and I don't understand it but my mother was the same way. There couldn't possibly be anything wrong with HER daughter.

Fuggedaboutit!

Concentrate on your health and getting your life back on track. Enjoy the support of those who care. You don't have anything to prove, the MSLT has already done that.



#4 littlebosleep

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Posted 27 December 2013 - 04:06 PM

I was just diagnosed about 3 weeks ago with IH, though the neurologist believes it is narcolepsy. I had a full month warning before the sleep studies so I knew what the doctor was looking for and what he expected to find. I did a lot of research, and a lot of reading, and decided that when people have anything to say (especially things I don't appreciate) that it's coming from a place of ignorance. Even if your family did take the time to read and research and soak everything up, they would still never understand. Ever.

 

Anyway, it's all still new to me, but that mindset is keeping me going. Both my father and my husband have now heard my "woosah... this is just you speaking about something you don't understand."

 

I bet there's a way to reword it so that it sounds like a challenge to try to understand, I just haven't figured it out. 



#5 AnonPerson

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Posted 27 December 2013 - 05:05 PM

I was just diagnosed about 3 weeks ago with IH, though the neurologist believes it is narcolepsy. I had a full month warning before the sleep studies so I knew what the doctor was looking for and what he expected to find. I did a lot of research, and a lot of reading, and decided that when people have anything to say (especially things I don't appreciate) that it's coming from a place of ignorance. Even if your family did take the time to read and research and soak everything up, they would still never understand. Ever.

 

Anyway, it's all still new to me, but that mindset is keeping me going. Both my father and my husband have now heard my "woosah... this is just you speaking about something you don't understand."

 

I bet there's a way to reword it so that it sounds like a challenge to try to understand, I just haven't figured it out. 

 

It just hurts not being able to talk about it with family members.

"You just need to eat right and exercise."

"I am tired too."

"Just get up in the morning right when your alarm goes off, and you'll feel awake."

"You need more sleep"

"I think your meds are causing your issues"

"You need to get off your meds, and then you'll feel better."

 

And tons more, I hear every day. And I am hard enough on myself already. It's like knowing something is wrong, but being told every day that I am faking it.

 

 

 

It's too bad that your family isn't backing you up. Their loss not yours.

For some reason, some parents take it as a personal affront when something is wrong with their child...almost like they have produced defective merchandise. I don't get it and I don't understand it but my mother was the same way. There couldn't possibly be anything wrong with HER daughter.

Fuggedaboutit!

Concentrate on your health and getting your life back on track. Enjoy the support of those who care. You don't have anything to prove, the MSLT has already done that.

 

 

I can deifnitely see the "nothing is wrong with my child!" thing. I have Type 1 diabetes on top of that. And you are right for me to just focus on my health, and perhaps just ignore the ongoing messages / talks with my parents in regards to how I am dealing with it. I'm realizing more and more that this is something that only I, and others that have it, will fully understand. Beyond that, people just make ignorant assumptions.

 

 

Well, the overnight test is not where the Narcolepsy diagnosis is made- it is the REM on the MSLT. There is simply no way to fake that and your results speak for themselves.

 

As far as educating your family- or some magic pamphlet- it won't make a difference. If any of them were interested in learning, they could keep themselves busy will medical journal articles or even on this website.

 

The unfortunate reality- especially at this time of year- is that they are simply not interested enough to learn. When and if they do, you could certainly help them then.

 

My best suggestion would be for you to get some personal counseling to help you come to terms with the fact that your family is not interested. Once you have done that, it will become less important to you that they do not. Of course, that will change some relationships- and that can be a good thing. And change promotes change.

 

Happy New Year.

 

Their belief is that the REM sleep test is not accurate. I have no idea why they believe this. And that is a good suggestion, and I'll have to try and find one soon. It's so stressful everyday being talked down to because of their ignorance on the subject.

 

Also, question to everyone, my dad and mom has decided to take it upon themselves to call my doctor (I'm 21, so I don't see how they did this without my permission when I didn't give them consent in any paperwork), and make an appointment to "talk" to him about what I need to do, and to tell them that when I told him I try to go to bed at 11pm and I try to wake up at 7am, that I don't really do that (I told the doctor I tried, seeing as how I work at 8am, and school at 830am on other days). And that I smoke e-cigs sometimes. And I don't exercise that much at the moment (but I did in the past). They are only going to try to prove the doctor wrong, and that I don't really have it. I think I am going to cancel the appointment, or at least express to the doctor that I want all my information to remain confidential and not be discussed. What should I do? I emailed my parents, and told them that I think I am going to cancel it, but that I will see a counselor, and afterwords they can see that same counselor. Would that be appropriate?



#6 Ferret

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Posted 27 December 2013 - 06:12 PM

If your parents want to lose you, they are certainly heading in the right direction. IMHO, they are WAY out of line for even thinking that they can talk to your Doctor. You're not a child any more.

If they were my parents, I'd be moving to the other side of the planet after telling them to mind their own business.



#7 littlebosleep

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Posted 27 December 2013 - 06:39 PM

Well, advice is really easy to hand out, ya know. But I have a story! When I was 12 I thought I needed glasses. My parents said I was fine, no I don't, etc. By the time I was 14 I somehow convinced them to take me to the eye doctor. They did it so I would shut up. My father even told the eye doctor he knew I was fine, but they needed to test it so I would quit hounding them. After the exam, the eye doctor flipped his lenses, and showed my parents what my vision looks like. My mother cried, and my dad apologized for being a big fat jerk. 

 

When my daughter was 8 the school called, said she was in the sick room and I need to pick her up. I took her to the doctor to get a note and take her back to school, because that kid wasn't sick! The rapid strep test came back positive, and I cried, and I apologized for being a big fat jerk.

 

I guess what I'm getting at, is it's easy to misunderstand, misjudge, deny, and all of that. But they can't prove the MSLT wrong. Talking to the doctor might help!



#8 Ferret

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Posted 27 December 2013 - 10:07 PM

Indeed talking to the Doctor might help but it is up to the OP to give permission and for the Doctor to make them aware of that and set the boundaries.

Touching on a sensitive subject here Anon but ... what country are you living in? what country were you born in? what is the ethnic background of your parents? what is the religious affiliation of your parents? DO NOT ACTUALLY ANSWER ANY OF THOSE QUESTIONS BECAUSE IT'S REALLY NONE OF OUR BUSINESS.

But, these are all things that could influence the attitude of your parents towards your illness.

Their attitude is also probably creating an enormous amount of stress for you which is going to make the problem worse.

I sincerely hope you are able to get some good counselling to help you deal with your parents as well as some good medical advice to deal with the Narcolepsy.

Here's a hug comin' at ya! Luck!

 

p.s. the nicotine in the e-cigs is helping to keep you awake...for me it's a stimulant (aka medicine)...something else they can read up on.



#9 Potato

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Posted 30 December 2013 - 01:03 AM

Hank was correct in his statement that an individual cannot fake the MSLT results. It's possible to fake the results to make it appear as though you DO NOT have narcolepsy, but not the other way around. As such, the MSLT is your quantitative proof that you do indeed have narcolepsy without cataplexy regardless of how manipulative or dishonest your family believes you to be.

 

Your physician almost certainly understands the validity of the MSLT results. Do not shy away from him/her because your family is giving you a hard time. If anything, you should make a concerted effort to explain your situation to your physician and the troubles you're having with your family. Their job is to help YOU, their patient, and not your family.

 

And, at least among narcoleptics on this forum, nicotine usage is somewhat common and I've heard many people comment about how it helps them to stay awake. If there's anxiety in addition to the narcolepsy, it also helps with that as well. A lot of people will slam nicotine usage because it can be addicting and you can become dependent upon it, but if it helps you not feel like absolute crap all the time, that's a small price to pay. There's no reason to feel guilty for using it medicinally, especially when you're using it as responsibly as you possibly can, that is to say using e-cigarettes instead of tobacco.

 

Stay strong, don't lose sight of your goals in life, and persevere. If persons with narcolepsy excel at one thing, it's marching onwards despite the obstacles life throws at us. We're like the tortoise in the tortoise in the hare fable, charging ahead at turtle speed. Just remember, slow and steady wins the race! =)



#10 DeathRabbit

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Posted 30 December 2013 - 05:02 PM

That really sucks that your parents are being jerkfaces about this whole thing. I would suggest telling them to butt out of your business or you will remove yourself from their lives. It sucks to have to play hardball with loved ones, but maybe when they see how serious you are, it might be a wake up call. Luckily, according to an article I read the other day, Dr. Mignot's team discovered a specific T cell and antibody associated with Narcolepsy, so we may soon have a blood test for N! If that happens, you can really tell them to stuff it.