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Frustrated With Family


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#1 AnamCara

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Posted 16 January 2010 - 05:13 AM

I'm new to this forum and hope to find out how some of you deal with the "no-so-sympathetic family" issue...

I have yet to be diagnosed with Narcolepsy, but have already been diagnosed with Sleep Apnea and am struggling on a daily basis to deal with the interrupted sleep and the anxiety that causes me.
My dad had both severe sleep apnea and narcolepsy and his behavior was identical to what mine is.. I am waiting to make an appointment with my doctor to find out more about getting tested/diagnosed.

I suffer daytime sleepiness to the point i'm barely able to function for it.. My sleeping schedule is a bit turned around from my other family members and this is causing arguments and tension. I am a day-sleeper and seem to function best on a grave yard type shift.. Literally cant function normally during the day, I battle sleeping attacks, fall asleep sitting up WHILE family members are talking to me, anytime i sit down on the couch and get comfortable i fall asleep instantly. I cant get halfway through a tv show before sleep overtakes me. My family members have tried yelling at me when i fall asleep and say sometimes ill respond to them verbally but they cant shake me out of the "stupor" as they call it.. They blame it on the fact that I sleep all day and am up all night. It DOESNT matter with me if i get 4 hours of sleep or 12 hours of sleep the result is the same every day. I sit down somewhere and get comfortable and I'm asleep. Even in the middle of conversations with friends or while riding in the car. I am very frustrated and hurt that my family refers to my grogginess and sleep attacks as "stupors" and complains at me about night time hours.. Ive tried to explain to them that I have anxiety attacks if i sleep early in the evening, im unable to sleep until the first light of dawn, and attempts before that ALWAYS lead to hidious nightmares and waking with severe anxiety attacks. I've been this way for years and years, and family insists that a regular sleeping schedule will cure everything.. It really does hurt.. they think im doing this to be rude to them, ignore them, or avoid doing the various chores around the house. I'm currently on blood thinners for having had blood clots in my lungs earlier in the year so i have to be careful what I take medication or remedy wise.. I've been looking for something to help wake me up, since i get no end of complaints regarding my excessive daytime sleepiness.. the more they nag at me about it the more irritable i become.

My dad had narcolepsy and sleep apnea, he fell asleep constantly like i do, in convos, the car, watching tv, didnt matter how much sleep he got either.. but the thing that hurts more than anything is my family didnt nag at him about it. they were accepting of his problems..

sorry for rambling but i've had nowhere else i can speak of this, and no one who seems to understand

#2 ohiolor

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Posted 16 January 2010 - 12:07 PM

Hi AnamCara....and welcome to the NN forums. I'm sorry to hear that your family is being so "non-understanding" of your sleep issues (especially since your dad had this diagnosis). My husband was initially diagnosed with OSA as well, and ultimately diagnosed with Narcolepsy. Are you currently on a C-PAP for the OSA..and are you compliant with it? I know that you'll need to be under C-PAP therapy for a while before the Drs will test for N if your EDS continues. As far as family issues...that's a tough one. Perhaps your family is thinking that you are just using your dads diagnosis to have an explaination/excuse for your own sleep "oddities". Regarding the day/night flip of sleeping...you might want to research Circadian Rhythm Sleep Disorders which could give you some insight.

Lorrie

#3 Mee

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Posted 18 January 2010 - 10:09 PM

Hi Anamcara, I know how you feel.
I do all the things that you described. Before to my diagnosis, I fell asleep during a performance review with my manager! Everyone blamed it on something that *I* was doing wrong and that if I would only do the right thing that I would be fixed. My parents were not so understanding and not supportive -- partly due to the cultural difference (they are immigrants) but mostly due to them not understanding the disorder as many other people don't either. To be honest with you, I gave up trying to get them to understand a long time ago. It was too hurtful so I decided to just not show it if I can help it. I am only here to share my experience so don't take this advise! I had really good friends that helped me through my post-diagnosis early years. I would hide the fact that I slept during the day by sleeping at my friend's place and at night I'll read quietly in my room if I can't sleep.

The best thing I can tell you is that you have to learn to laugh at yourself. Of course, it has to be done in the most honest of ways. I have joked about how the sound of dirty dishes sets of my narcolepsy and it can't be helped. Yeah its ridiculous but its funny. Once you get comfortable with it (well we never *really* do but you know what I mean), then others will be more comfortable around you and hopefully be more receptive to your perspective. If you can't change their attitude then change yours. It's apparent that your family cares about you but it just seems that they don't know how to help you and express it in a not so helpful fashion (from our point of view). So the only other advice that I have to share is to talk to your family members about your feelings and tell them what will help you. Don't focus on nagging but focus on things that they could do for you so that you can do for them. For example, if you had to help with household chores, offer to wash dishes (standing helps) or vacuuming - things that you can do and stay awake. And ask them to allow you to "rest" in peace afterwards for a little bit to awhile. Also, know that these things take time and might not resolve itself the way you want but that there are people here who understand and are here to support you.

Take care, M

#4 Day Dream Believer

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Posted 19 January 2010 - 02:06 AM

I'm new to this forum and hope to find out how some of you deal with the "no-so-sympathetic family" issue...

I have yet to be diagnosed with Narcolepsy, but have already been diagnosed with Sleep Apnea and am struggling on a daily basis to deal with the interrupted sleep and the anxiety that causes me.
My dad had both severe sleep apnea and narcolepsy and his behavior was identical to what mine is.. I am waiting to make an appointment with my doctor to find out more about getting tested/diagnosed.

I suffer daytime sleepiness to the point i'm barely able to function for it.. My sleeping schedule is a bit turned around from my other family members and this is causing arguments and tension. I am a day-sleeper and seem to function best on a grave yard type shift.. Literally cant function normally during the day, I battle sleeping attacks, fall asleep sitting up WHILE family members are talking to me, anytime i sit down on the couch and get comfortable i fall asleep instantly. I cant get halfway through a tv show before sleep overtakes me. My family members have tried yelling at me when i fall asleep and say sometimes ill respond to them verbally but they cant shake me out of the "stupor" as they call it.. They blame it on the fact that I sleep all day and am up all night. It DOESNT matter with me if i get 4 hours of sleep or 12 hours of sleep the result is the same every day. I sit down somewhere and get comfortable and I'm asleep. Even in the middle of conversations with friends or while riding in the car. I am very frustrated and hurt that my family refers to my grogginess and sleep attacks as "stupors" and complains at me about night time hours.. Ive tried to explain to them that I have anxiety attacks if i sleep early in the evening, im unable to sleep until the first light of dawn, and attempts before that ALWAYS lead to hidious nightmares and waking with severe anxiety attacks. I've been this way for years and years, and family insists that a regular sleeping schedule will cure everything.. It really does hurt.. they think im doing this to be rude to them, ignore them, or avoid doing the various chores around the house. I'm currently on blood thinners for having had blood clots in my lungs earlier in the year so i have to be careful what I take medication or remedy wise.. I've been looking for something to help wake me up, since i get no end of complaints regarding my excessive daytime sleepiness.. the more they nag at me about it the more irritable i become.

My dad had narcolepsy and sleep apnea, he fell asleep constantly like i do, in convos, the car, watching tv, didnt matter how much sleep he got either.. but the thing that hurts more than anything is my family didnt nag at him about it. they were accepting of his problems..

sorry for rambling but i've had nowhere else i can speak of this, and no one who seems to understand

Welcome to this forum. I just joined recently too and I am so impressed with the people on this network. We are not alone and we do have a whole host of experiences and supports to draw from. I was diagnosed 18 years ago and I am still learning about N. I have heard people with N say that it is very hard to explain how this disorder does impact us. I think this is a challenge because what we need is sleep, sleep, and more sleep and others who get regular, restful sleep must find it hard to understand why we need more sleep after we have just slept. The problem is that they are using their reference point to understand your problem. I was not very vocal about my N with my family in the past but am starting to educate them, to help them better understand. For example I was to go to my brother's for Christmas day with opening presents and turkey dinner etc etc. I had to tell him that I was just too exhausted. He got that as I am also working full time and going to school. But...before I would have just gone and endured the sleep attacks. Now I am speaking out and I plan on providing more education to my family this year. Do you think your doctor could help advocate for you? Maybe you could have a family meeting and the doctor could explain to them what is going on for you? In short I would pull in more supports like your doctor or a sleep specialist who could talk about this with your family. I know how hurtful it feels to be yelled at and misunderstood. Don't loose hope. You are not alone and there is help out there!

#5 amazingracie28

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Posted 24 January 2010 - 06:30 AM

Hey there AnamCara-you're among friends here for sure. It would sure be nice if family and friends would/could "get it" but sadly sometimes they just don't. I've had Lupus for a very long time and my family clearly thinks this is "real" and "legitimate". (I'm also on blood thinners btw) They'll ask how its going and show a genuine concern. Now Narcolepsy on the other hand, doesn't get brought up. Any conversations I try to have about it are more or less shot down. Or I get the "well I'm tired too". If I'm having a sleepy day my family is surely not going to suggest that I go take a nap and God forbid I use the phrase "sleep attack". That's sure to illicit an eye roll or two.
Anyway.....hopefully you can get a diagnosis and that might help your family see that you're not just "making this up". Once you're diagnosed there are a lot of treatment options. Like I said, I'm on blood thinners too and I've tried a lot of different things. What ended up working for me is Nuvigil during the day and Xyrem at night. Xyrem made more of difference than anything really.
Like I said though, you're among friends here....glad you found us Posted Image.

#6 Fly

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Posted 23 August 2010 - 04:37 PM

Hang in there. Some of your family will come around and some will never see past their own opinions. It is hard and frustrating but never forget that you are the one who you need to take care of and make happy right now. You can't do much for others until you figure yourself out. I have tried to explain to my family and have discovered that the ones who listen and seem to care are worth the explanation. The others just need get over it and be quiet about it. Don't forget it's their inability to accept not yours therefore their problem. Just do the best you can and that's all you can do.

fly

#7 narcats

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Posted 24 August 2010 - 01:12 AM

hubs side of the family been a pain for 33 years but thats another story-- lets talk about my sons 10+with cats --the other side see him as mental and a few other choice words--just found out sister in-law knows someone with nar/cats--so thoughtful all these years and suddly she remembers her friends son has this problem----wheres my b kicking boots--hubs parents have a total of 3 sons (1 died in 03) 2 daughter in-laws -5 grand kids 2 ggr kids--but for some reason treat me and my 2 kids like we don't exist-- their blood related--as my MIL stands next to me as I'm holding my son(hes heavy) from falling down the stairs total cats - I can't put him to the floor-she just stands shooting her month off telling me over and over again that hes mental etc- never offer to help or get help-as you all know during a CAT attack 1 hears everything--son hear it all and that it took longer for him to come to because of her---son has manners composed himself and went to his room--told hubs that they are not longer welcome here --for 1 year they stayed away (salking I guess) we see them ever now and them but that fake smile- we control what goes on then they are around---they play good cop bad cop- MIL shoots her month off - so sweet to others- FIL says nothing but its his body lanange that says it all --My side are their to help -action is taken as needed with out asking--nothing it said medal crazy etc---when a problem comes we all deal with it -when it passes we go on with what ever going on---our world- my sons world

#8 Saraiah

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Posted 29 August 2010 - 06:02 PM

Hi AnamCara and all,

Before I was diagnosed, everyone in my family (including me!) thought that I was so tired and slept so frequently because I was depressed, and lazy and irresponsible, and had some weird pathological desire for excessive sleep. It didn't help matters that my doctor told me for 15 years that there was nothing wrong with me physically other than (adequately treated) hypothyroidism, and that I was "too stressed" and should "get more exercise." My husband decided to leave me when my symptoms became very severe (but thankfully changed his mind before the exit date arrived), and my children eventually felt angry and abandoned when my symptoms became uncontrollable. My parents and sisters had decided I was "lazy and crazy" long before.

About two years ago, my symptoms got to the point where AnamCara is now. I could no longer stay awake even while driving or speaking. At that point, my husband and daughters and I finally realized that there must be something physically wrong with me, regardless of what my family doctor said. It couldn't just be due to my "bad" character. When I finally got diagnosed a year after that, I did a few things that completely turned my own attitude toward my symptoms, and my husband's and daughters' attitudes, around:

One was that I ordered a used version of Marguerite Utley's 1995 self-published book "Narcolepsy: A Funny Disorder That's No Laughing Matter." It was the one and only book I could find that was written for (lay)people with narcolepsy. Although Ms. Utley wrote mostly about her own experiences with narcolepsy and its treatment, and although the book was 15 years old, there was enough information in her book that applied to me that things started to make more sense. And then, I (ahem) left the book in the magazine rack in the bathroom on purpose, figuring that my husband and daughters would eventually get bored with the rest of the selection and resort to reading the narcolepsy book. It worked, and then they understood more, and that helped.

Another vital thing I did was to do EVERYTHING in my power to find other people living near me with narcolepsy, and go meet them. When I couldn't find an active support group where I lived, I found 3 other people with narcolepsy who lived within an hour's travel of my home, and I started one. Even though those 3 people didn't end up being able to come to meetings regularly, I kept advertising the support group meetings on this message board and a couple of others - and we always had at least 3 people at any one meeting. Since that first support group meeting 13 months ago, about 35 PWN and their friends and family members have attended at least one monthly meeting, and we had our largest month's attendance ever 2 weeks ago - 15 people came that day!

The thing that has been so powerful about actually meeting other PWN in person, and sitting and talking with even a few other PWN for a couple of hours each month, is that I started to truly understand what parts of my behavior were due to narcolepsy, and what parts were about myself and my own personality. Over time, I've realized that I'm not at all lazy, or crazy, or irresponsible, or pathological, or even (at this point) depressed! In fact, I've become pretty d**n impressed with how hard I've worked over my lifetime in school and in my jobs and in my marriage and in raising my kids and in my friendships -- to achieve the things I've been able to do, despite overwhelming fatigue/tiredness/exhaustion/sleepiness, year after year. And yes, I've failed over and over again, in school and at work and with friendships and in parenting - but that was when I couldn't stay awake - and now I see that my successes were more impressive than I'd ever thought. I can't help but feel good about myself, when I admire exactly the same determination and hard work against crazy odds in all of the other PWN I've met. When you get to hang out regularly with other PWN, you start to realize that these people are uniformly phenomenal - at least, all the PWN I've met have been.

And the other super-important thing that I did was to hold one narcolepsy support group meeting at my (very messy!) house -- and I asked my husband to sit in. For two hours, he listened while about 5 other PWN and some of their family members talked about living with narcolepsy. After that, he really got it. That's not to say that our lives are now easy. Living with narcolepsy and living with a person with narcolepsy both take an immense amount of empathy, patience, problem-solving, and sometimes a lot of deep breaths. But things get a whole lot easier when everyone involved understands what the PWN is actually coping with, and what helps the PWN be more available. Like how responsible we are in choosing to take naps!!

My parents, sisters, aunts, uncles, and cousins will never get it. When I sent them all an email explaining that I'd been diagnosed with narcolepsy, not one person replied, and not one of them ever asked me about how I was, how the treatment was going, or anything else. If I bring the subject up, they roll their eyes and are silent or change the subject. If I have to take a nap during a family gathering, they don't bother to hide their snide remarks from me.

For people who can't live away from family members with these kinds of attitudes, it's got to be unbelievably hard, and is a completely different story from mine. But since I've met other PWN and started to feel a lot better about myself and my life, I've been able to feel less wounded by my parents' and those other family members' attitudes. Their perceptions have slowly become less relevant to how I see myself. My parents and siblings and extended family are choosing to act badly. I am not acting badly, and because I've seen the truth about the other PWN I know, I can finally see the truth about myself as well.

Since meeting other PWN was I think the most important thing in my "treatment" for narcolepsy, I've become an evangelist for the idea of meeting other PWN and/or starting support groups. If you'd like ideas for how to start one, let me know.