Guest tabster1

Do Your Parents Take N Seriously?

21 posts in this topic

Mine are completely ignorant. My dad doesn't even believe my doctor, and says I'm making myself think I have it. It is so frustrating, because he thinks I'm just lazy and if I just "tried harder" I could stay awake.

Share this post


Link to post
Share on other sites

Mine are completely ignorant. My dad doesn't even believe my doctor, and says I'm making myself think I have it. It is so frustrating, because he thinks I'm just lazy and if I just "tried harder" I could stay awake.

When I was diagnosed as a Celiac my parents put gluten in my food without my knowledge to "prove" that I was making things up. Some people are messed up and selfish. The best thing that you can do, in my opinion, is distance yourself as much as you can and seek out people to spend time with who are more sane and caring. This course of action has the added bonus of making it clear to the offending party what they risk by being such an uncaring jerk.

Share this post


Link to post
Share on other sites

at first my parents openly mocked me for answering "yes" that i " felt like i would drop what was in my hands when laughing" and said other malicious things about N to me. they have since confessed to forgetting that i have N completely and only rember when i try to talk to them about what im going to do when i try to get my drivers license. what baffles me is that my mom continues to have me take my medication but makes no effort to get into contact with the sleep specialist and says that "its my dads problem" but i can never locate my dad due to his job. i

Share this post


Link to post
Share on other sites

I think mine too, I just dont know to what extent they understand how it affects my life.

Share this post


Link to post
Share on other sites

My parents have been very supportive. I don't think they quite understand how I feel (how could they?). My mom said that I might look into a job like the at home call center she does so I don't get tired out standing and walking all day. I'm learning to just appreciate the concern and her trying to be helpful even if she doesn't quite get it right.

This is all very new to us all.

Share this post


Link to post
Share on other sites

In a word, no. My mom has suggested I work a desk job if I'm "so tired all of the time", and my Dad thinks I was misdiagnosed simply because my sleep studies have had "other results" in the past (mild sleep apnea and idiopathic hypersomnia). Even explaining that a desk job might worsen the urge to sleep, and that a past diagnosis of idiopathic hypersomnia isn't negated by a diagnosis of narcolepsy hasn't helped either of my parents accept that I have this disease and/or understand what I'm going through. I'm not sure they ever will, either.

Share this post


Link to post
Share on other sites

My parents are very good about it, they are very encouraging to me and are always looking out for my well being. They saw the change narcolepsy caused in my life and in my body, and they know its a struggle for me, but they keep me positive and keep me praying for good days!

Share this post


Link to post
Share on other sites

My parents take it quite seriously. My father also suffers from narcolepsy so, I have someone to talk to about it.

My older brother thinks that I am faking it and just overplaying whatever symptoms that I might have.

Share this post


Link to post
Share on other sites

A DESK JOB IS THE WORST IDEA EVER!!!!

When I started mine was when I realized I had a problem and needed help! I used to work in the restaurant industry, I got to be up on my feet talking to people and moving around... the hours were also great... sleeping in the day up at night...

If you have any choice in the matter never ever settle for a boring Desk job, The only way I am handling mine is coming onto this site!!

As far as parents go, I would consider mine close to the worst :( no support, no sympathy, call me a lazy bum when I need to go to bed at a certain time, change the subject if I say anything, laughed when I fell down the last few steps of stairs when my brother scared me (not on purpose). Some days I am fighting a sleep attack most of my drive home from work... I get home and let it take over me on the couch... just a few minutes and then I can function again... how can they be rude to me about that?

I have met some amazing people on the NN, and I find that this is the only way I will ever get support, understanding, and suggestions to do things better. Its hard to be strong on your own... when the people who should be in your corner "forget" that we are indeed different and need a different lifestyle.

Anyhow I feel your pain, and those of you who do not have this problem should do something special for your loved ones, and truly thank them for their support... make sure they know you appreciate them!!!!

Share this post


Link to post
Share on other sites

My parents take it quite seriously. My father also suffers from narcolepsy so, I have someone to talk to about it.

My older brother thinks that I am faking it and just overplaying whatever symptoms that I might have.

Brother's being skeptical seems to be a recurring theme. I think it's because you shared so many experiences and so much DNA that they figure, "Well I'm ok, so I don't know what the hell his problem is?"

Share this post


Link to post
Share on other sites

My parents take it quite seriously. My father also suffers from narcolepsy so, I have someone to talk to about it.

My older brother thinks that I am faking it and just overplaying whatever symptoms that I might have.

I admire your father. It sounds like he has raised a great son. I am interested to know how your N was first detected and how your father responded.

I am a father and recently diagnosed with N after living with it since childhood. Our three children are 12, 12 and 8. I have been relieved that none of our children have displayed symptoms.

Not to hit the panic button, but this morning one of my daughters (identical twins) went back to sleep after I woke her up. She has been having a hard time getting to sleep and then hard to wake up, but still gets 9 hrs/ night. I asked her if she dreamed when she went back to sleep and she said yes, but couldn't remember what it was about- just random.

So, I am curious and will watch closely and learn as much as I can.

Any comments would be helpful from your experience. Thanks.

Share this post


Link to post
Share on other sites

Brother's being skeptical seems to be a recurring theme. I think it's because you shared so many experiences and so much DNA that they figure, "Well I'm ok, so I don't know what the hell his problem is?"

I see where you're coming from and agree with you. He is also the complete opposite of me. He joined the military at eighteen and has served several tours in Iraq. His idea of being disabled is you lost a limb in a firefight. Otherwise, you have to tough it out. We ceased speaking about it because it was beginning to put a wedge between us. The cataplexy he flat out denies existing at all. He feels it is literally impossible.

I admire your father. It sounds like he has raised a great son. I am interested to know how your N was first detected and how your father responded.

I am a father and recently diagnosed with N after living with it since childhood. Our three children are 12, 12 and 8. I have been relieved that none of our children have displayed symptoms.

Not to hit the panic button, but this morning one of my daughters (identical twins) went back to sleep after I woke her up. She has been having a hard time getting to sleep and then hard to wake up, but still gets 9 hrs/ night. I asked her if she dreamed when she went back to sleep and she said yes, but couldn't remember what it was about- just random.

So, I am curious and will watch closely and learn as much as I can.

Any comments would be helpful from your experience. Thanks.

Well, looking back, I think that I may have actually suffered quite a bit from it even as a child. I slept everywhere, all of the time. It has been a running joke in my family that I can fall asleep in a two minute drive to the gas station. My father didn't even mention his narcolepsy to me until I had my confirmed diagnosis. Him and I are very alike in the sense that we thrive in structured environments. We both have our days planned out down to the minute. I think this trait has helped us both adjust.

In regards to how it was first detected, my group of friends at college would take pictures of me sleeping everywhere and post them on facebook. It just became a joke amongst everyone that I sleep everywhere. Then someone mentioned that I may actually have a serious condition and should check it out. I looked into it and asked for a referral to have a sleep study done. My father responded by explaining that he has it too and that was something we were actually able to bond over. We discuss all the symptoms and it is nice knowing that my own father understands.

I can see how that would be a red flag in regards to your daughter. If I had children I would certainly be watching vigilantly for any signs of narcolepsy.

Share this post


Link to post
Share on other sites

Brother's being skeptical seems to be a recurring theme. I think it's because you shared so many experiences and so much DNA that they figure, "Well I'm ok, so I don't know what the hell his problem is?"

My brother is also skeptical which is really freaking annoying. "they're quacks, you're fine" It's pretty frustrating.

Share this post


Link to post
Share on other sites

My brother is also skeptical which is really freaking annoying. "they're quacks, you're fine" It's pretty frustrating.

Completely understandable. It can be very difficult to sway their opinion, even with the overwhelming evidence in your favor. I feel that to make my brother believe me I will end up having to have an attack in front of him when I visit my family for the fall break.

Share this post


Link to post
Share on other sites

My mom is very understanding. Even before I was diagnosed, my whole life pretty much, my mom has been really accepting of me and my excessive need to sleep. My mom has some weird disorders too so I guess it's easier for her to empathize with me.

My dad, on the other hand.. I remember living with him for some period of time when I was a young teenager and fighting with him constantly because he would come in to wake me up for school and I'd be having sleep paralysis or some kind of hallucination and he would either pour water on me or just grab me and throw me out of bed.. Not like.. to injure me.. but just to physically wake me up. It never occurred to him that there might actually be something wrong with me based on the fact that I went to bed around 5 pm every night and was impossible to wake up 13 hours later.

Just this past week I spent a couple days with my dad and he basically just made fun of me the whole time, and attempted to deprive me of sleep whenever possible.. And he said some b.s. about how he thinks he has narcolepsy too.. He does not have narcolepsy. He is an alcoholic. I think anyone would pass out if they drank as much as he does.

Whatever. I'm an adult now. And there's a reason I see my dad maybe once a year.

Share this post


Link to post
Share on other sites

My mom is very understanding. Even before I was diagnosed, my whole life pretty much, my mom has been really accepting of me and my excessive need to sleep. My mom has some weird disorders too so I guess it's easier for her to empathize with me.

My dad, on the other hand.. I remember living with him for some period of time when I was a young teenager and fighting with him constantly because he would come in to wake me up for school and I'd be having sleep paralysis or some kind of hallucination and he would either pour water on me or just grab me and throw me out of bed.. Not like.. to injure me.. but just to physically wake me up. It never occurred to him that there might actually be something wrong with me based on the fact that I went to bed around 5 pm every night and was impossible to wake up 13 hours later.

Just this past week I spent a couple days with my dad and he basically just made fun of me the whole time, and attempted to deprive me of sleep whenever possible.. And he said some b.s. about how he thinks he has narcolepsy too.. He does not have narcolepsy. He is an alcoholic. I think anyone would pass out if they drank as much as he does.

Whatever. I'm an adult now. And there's a reason I see my dad maybe once a year.

Man, sorry your Dad is acting like a raging bag of douches. Yeah, and I've said it before myself, it is so annoying whenever you go to try to explain N to someone and they're like "Hey, I get that too sometimes!" I know they mean well sometimes, but it still makes me want to give them a spinal tap and suck out all their orexin and see how they like me then.

Share this post


Link to post
Share on other sites

I wish my parents understood or even believed me, it would make living with narcolepsy a lot less hard. Instead, they do anything they can to make it harder for me insisting that I WANT to be this way and am in fact not sick...  I don't think anyone will every truly believe nor understand how debilitating N is.

Share this post


Link to post
Share on other sites

I wish my parents understood or even believed me, it would make living with narcolepsy a lot less hard. Instead, they do anything they can to make it harder for me insisting that I WANT to be this way and am in fact not sick...  I don't think anyone will every truly believe nor understand how debilitating N is.

 

Athena, I promise -- there will be lots of people in your life someday who will truly believe you and will understand how debilitating N is.  I'm really sorry that your parents don't get it.  Lots of people have, or have had, parents who don't get it -- who don't understand their disability, or that they're gay, or that they want to play in a band instead of go to college.  And it makes life miserable for a while.  But someday you'll be out of the house, and you'll be surrounded by people who care about you.  And you might even find that your parents have finally caught on, too.

Share this post


Link to post
Share on other sites

I was diagnosed with narcolepsy about 2-3 weeks ago after 9 years of the same problems that just keeps getting worse and I have taken so many medications, had so many tests done, and even been missed diagnosed repeatedly, and I'm only 14! My mom and I have been fighting every single day since the symptoms first started at age 5 or 6, wee always fight about school things like attendance, falling asleep in class, not being able to wake up, and "being lazy/not trying". It makes me so frustrated because she will stand up for me in front of other people, but the second were alone or at home she starts trying to argue with me saying i just don't want to go to school, being lazy, and on not putting any effort in trying to get up/saying awake. Once I got diagnosed with Narcolepsy ,without cataplexy, she started researching it a bunch and was convinced I got narcolepsy from the H1N1 flu shot and pulled my medical records and she said everything matched up but she missed the most important thing, The dose that caused people to develop Narcolepsy was only distributed in europe i'm in America. I did receive 2 doses of the exact same flu shot from Glycosmith, i think was the name, that was developed at the exact came place the bad one was though. I was concerned why I got 2 doses of the same flu shot within 3 months of each other. Im off topic, so eventually I told her about why it couldn't have been the cause. When we were at the doctor she acted all supportive and super supportive but then the next day it was back to here calling me lazy, saying its not that hard to just get up, saying i just don't want to go, and saying i'm not trying at all even though i am trying my hardest. She is obsessed with thinking my 22 year old brother has it too, he doesn't even believe I have Narcolepsy, just that i'm lazy and saying I just want everything handed to me and so much more he's been the same my whole life. Im really starting to lose hope i'm failing in school every course even though I know everything there teaching before they teach it except one class, this it my second year like this and at the beginning of the school year i had been awake for 2-3 days straight and I was extremely angry and had a huge fight with my mom and brother, Eventually they had to call my friend and her mom to come and they eventually calmed me down and my mom had them made me go to the hospital and drug tested me. The drug test came up negative and then they were talking about possibly going to a mental hopital and i eventually went and i was there for 8 days before I got discharged and while in there they did "family counseling" but only ever addressed what mom said i do wrong, any mistakes i made, and saying im lazy, ect. They never said anything to her even though thats what i said was biggest reasons for being there and really the only. Im really starting to lose all hope, I don't know what to do anymore, do you guys have any advice or similar experiences?

Share this post


Link to post
Share on other sites

I was diagnosed with narcolepsy about 2-3 weeks ago after 9 years of the same problems that just keeps getting worse and I have taken so many medications, had so many tests done, and even been missed diagnosed repeatedly, and I'm only 14! My mom and I have been fighting every single day since the symptoms first started at age 5 or 6, wee always fight about school things like attendance, falling asleep in class, not being able to wake up, and "being lazy/not trying". It makes me so frustrated because she will stand up for me in front of other people, but the second were alone or at home she starts trying to argue with me saying i just don't want to go to school, being lazy, and on not putting any effort in trying to get up/saying awake. Once I got diagnosed with Narcolepsy ,without cataplexy, she started researching it a bunch and was convinced I got narcolepsy from the H1N1 flu shot and pulled my medical records and she said everything matched up but she missed the most important thing, The dose that caused people to develop Narcolepsy was only distributed in europe i'm in America. I did receive 2 doses of the exact same flu shot from Glycosmith, i think was the name, that was developed at the exact came place the bad one was though. I was concerned why I got 2 doses of the same flu shot within 3 months of each other. Im off topic, so eventually I told her about why it couldn't have been the cause. When we were at the doctor she acted all supportive and super supportive but then the next day it was back to here calling me lazy, saying its not that hard to just get up, saying i just don't want to go, and saying i'm not trying at all even though i am trying my hardest. She is obsessed with thinking my 22 year old brother has it too, he doesn't even believe I have Narcolepsy, just that i'm lazy and saying I just want everything handed to me and so much more he's been the same my whole life. Im really starting to lose hope i'm failing in school every course even though I know everything there teaching before they teach it except one class, this it my second year like this and at the beginning of the school year i had been awake for 2-3 days straight and I was extremely angry and had a huge fight with my mom and brother, Eventually they had to call my friend and her mom to come and they eventually calmed me down and my mom had them made me go to the hospital and drug tested me. The drug test came up negative and then they were talking about possibly going to a mental hopital and i eventually went and i was there for 8 days before I got discharged and while in there they did "family counseling" but only ever addressed what mom said i do wrong, any mistakes i made, and saying im lazy, ect. They never said anything to her even though thats what i said was biggest reasons for being there and really the only. Im really starting to lose all hope, I don't know what to do anymore, do you guys have any advice or similar experiences?

Share this post


Link to post
Share on other sites

My mom's 83 and she doesn't speak English. When I FINALLY got my diagnosis I wondered how she'd respond and worried about how I'd explain it in an understandable way. She said, "Oh, your dad had that, not good". She was also thrilled that it explained so much of the medical mystery that has ripped apart the last decade of my life. "Thank God" she said, "at least THAT won't kill you..... you still smoking?" God bless dear old mom!

plexicat -

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now