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Any1 W/ Family That Refuses 2 Understand N:


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#1 sleepless sleeper

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Posted 29 March 2009 - 04:11 PM

One of my aunts called yesterday. I didn't tell her to stuff it, but I really wanted to. When my mother died I was upset not just b/c of mama dying, but also because I had dear, dear beloved family members doing some super nasty sh1t. Such as taking things from the house. I'd get upset about it, and I'd be told that I was getting upset for nothing and that I needed to talk to my dr to change my meds.

I would say that what was happening wasn't right, but I be told that I was making big deal out of nothing. I'd like to add that this time period ended up being the straw that broke my N back. I've said plenty of times that my 2nd pregnancy made my N really bad, but it was the stuff that other family did during the time of my mother's illness and afterward that started symptoms similar to MS. My family (not my parents) has never wanted to believe that I had N. Even during my mother's death many of them would tell me to change meds. Yeah, sure, I'll get my self drugged up so I won't care that my loving sis is trying to get my mother to change everything to her name, take every nice piece of artwork, family photos, things that belonged to my children (we lived there almost a year, and my son would stay with her afterward which is why his stuff was there). Yesterday my mama's oldest sis (my mom was the oldest of 6 kids) called to see how I was. I could not talk because I had a lot of problems yesterday and day before with electrical pain, and my eyes and my thoughts were doing this electrical jumping thing. Hard to explain. I told her why and I'd call her back. Lo and behold the truth comes out. After SOOOO many years have passed I learned that NO ONE that says "i love you " to me has had a clue what N is, and they never bothered to believe me or check the references that I gave them. They have thought that it was a mental illness all these years. They did n't even want to believe how serious my melanoma was. This same aunt said that she had a small bean size amount of skin removed fro m her leg for melanoma and she was 'JUST FINE'.

Should we try to cram our health conditions down people's throats? I've never thought it was a good idea to get into it anymore than saying whats wrong, explain the problem, and leave it at that. When the problem presents itself, then reiterate. I do not want to be a person that whines all the time, but I'm not going to be completely silent. Should I be a whiner so these dumb f's will listen? NO, actually, they've heard enough. It's now blatantly apparent that they chose to not listen. It makes me so upset to even talk to these people. It was just a few months ago that I realized that my mama's coat wasn't around. I asked a few people about it, they thought that I was horrible to ask. Sure enough another aunt had it and said that she "knew" that my mama would've wanted her to have it so she took it. If she would have said something, I wold have given her the stupid coat. A coat. This lady is not poor. She could have had more than that if all she would have done was ask. My parents house was so stuffed with crap that it took a year and a half to empty. We had to end up donating a lot of nice stuff. Well, enough ranting. My aunt truly floored me yesterday. I told her I'd call her back today but I don't want to. Her daughter took a piece of artwork that was my son's, which is worth thousands of dollars. My aunt said that it would hurt my cousins feelings if I took it back. I just said ok because that is what i always do. I honestly want these people to burn in hell. I never had feelings like this for even my ex-husband or his mother.

I know that there are other users on the site that have difficulty with close people understanding N, but does anyone here want another person to have eternal suffering? I have ignored family members, but there are a few that try to stay in contact. Out of respect for my mother, I don't tell them to stuff it, but after yesterday I'm not sure if it's okay for me to not take up for myself. I'm so upset even after 24 hours of hanging up the phone, that I just don't think it's healthy to hear even from the one's that haven't taken the hint. On the other hand,..... they are family. I grew up with everyone together and close by. Blood is thicker than water, etc. But if that's the case, then why don't they STILL understand what N is? Would any of you tell your family to stuff it if your family made you this upset? If they still didn't understand N? If it has become painfully obvious that they have not even TRIED to understand N? That they would rather have you as the person to point to for all things wrong in the world?

#2 malachi777

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Posted 29 March 2009 - 10:17 PM

QUOTE (sleepless sleeper @ Mar 29 2009, 09:11 PM) <{POST_SNAPBACK}>
One of my aunts called yesterday. I didn't tell her to stuff it, but I really wanted to. When my mother died I was upset not just b/c of mama dying, but also because I had dear, dear beloved family members doing some super nasty sh1t. Such as taking things from the house. I'd get upset about it, and I'd be told that I was getting upset for nothing and that I needed to talk to my dr to change my meds.

I would say that what was happening wasn't right, but I be told that I was making big deal out of nothing. I'd like to add that this time period ended up being the straw that broke my N back. I've said plenty of times that my 2nd pregnancy made my N really bad, but it was the stuff that other family did during the time of my mother's illness and afterward that started symptoms similar to MS. My family (not my parents) has never wanted to believe that I had N. Even during my mother's death many of them would tell me to change meds. Yeah, sure, I'll get my self drugged up so I won't care that my loving sis is trying to get my mother to change everything to her name, take every nice piece of artwork, family photos, things that belonged to my children (we lived there almost a year, and my son would stay with her afterward which is why his stuff was there). Yesterday my mama's oldest sis (my mom was the oldest of 6 kids) called to see how I was. I could not talk because I had a lot of problems yesterday and day before with electrical pain, and my eyes and my thoughts were doing this electrical jumping thing. Hard to explain. I told her why and I'd call her back. Lo and behold the truth comes out. After SOOOO many years have passed I learned that NO ONE that says "i love you " to me has had a clue what N is, and they never bothered to believe me or check the references that I gave them. They have thought that it was a mental illness all these years. They did n't even want to believe how serious my melanoma was. This same aunt said that she had a small bean size amount of skin removed fro m her leg for melanoma and she was 'JUST FINE'.

Should we try to cram our health conditions down people's throats? I've never thought it was a good idea to get into it anymore than saying whats wrong, explain the problem, and leave it at that. When the problem presents itself, then reiterate. I do not want to be a person that whines all the time, but I'm not going to be completely silent. Should I be a whiner so these dumb f's will listen? NO, actually, they've heard enough. It's now blatantly apparent that they chose to not listen. It makes me so upset to even talk to these people. It was just a few months ago that I realized that my mama's coat wasn't around. I asked a few people about it, they thought that I was horrible to ask. Sure enough another aunt had it and said that she "knew" that my mama would've wanted her to have it so she took it. If she would have said something, I wold have given her the stupid coat. A coat. This lady is not poor. She could have had more than that if all she would have done was ask. My parents house was so stuffed with crap that it took a year and a half to empty. We had to end up donating a lot of nice stuff. Well, enough ranting. My aunt truly floored me yesterday. I told her I'd call her back today but I don't want to. Her daughter took a piece of artwork that was my son's, which is worth thousands of dollars. My aunt said that it would hurt my cousins feelings if I took it back. I just said ok because that is what i always do. I honestly want these people to burn in hell. I never had feelings like this for even my ex-husband or his mother.

I know that there are other users on the site that have difficulty with close people understanding N, but does anyone here want another person to have eternal suffering? I have ignored family members, but there are a few that try to stay in contact. Out of respect for my mother, I don't tell them to stuff it, but after yesterday I'm not sure if it's okay for me to not take up for myself. I'm so upset even after 24 hours of hanging up the phone, that I just don't think it's healthy to hear even from the one's that haven't taken the hint. On the other hand,..... they are family. I grew up with everyone together and close by. Blood is thicker than water, etc. But if that's the case, then why don't they STILL understand what N is? Would any of you tell your family to stuff it if your family made you this upset? If they still didn't understand N? If it has become painfully obvious that they have not even TRIED to understand N? That they would rather have you as the person to point to for all things wrong in the world?


It is very difficult for others to understand since they do not know how it feels to live with this condition. They do not realize what TIRED really is. My mother always calls when I am sleeping and she says, "get up, lazy bum" and I just grin and bear it. It does get quite frustrating at times but just learn to relax and realize that they will never understand us.

I do not tell anyone I have narcolepsy because I look too healthy. I am muscular and enjoy bodybuilding, so when people look at me, they think I am a hypochondriac. I have given up and have conditioned myself to try understanding those who do not understand what I am living with. They will never understand. When you accept that, you will be more at piece.


#3 jenji

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Posted 29 March 2009 - 10:19 PM

QUOTE (sleepless sleeper @ Mar 29 2009, 05:11 PM) <{POST_SNAPBACK}>
One of my aunts called yesterday. Would any of you tell your family to stuff it if your family made you this upset? If they still didn't understand N? If it has become painfully obvious that they have not even TRIED to understand N? That they would rather have you as the person to point to for all things wrong in the world?


First of all Sleepless it is more than clear that you and I are somehow related, as we very clearly have the same freakin Aunt, umkay? I avoid many family members b/c it is simply not emotionally healthy for me to maintain contact with them, as they are disconnected, self-centered and completely incapable of reality and so... the last time my Aunt (who is also my Godmother, so talk about the need to remain faithful and tolerant) rang me, I saw her number on my cell and thought: huh. I hadn't spoke to her since Christmas and so like an emotionally optimistic amnesiac I answered, wherein she subsequently proceeded to suck the ever-livin life out of me. Dry.

And so, when you screw with an artist, you may find yourself the topic of a blog entry, film et al., perhaps under a generalized guise, but the topic none-the-less. Not that these type of individuals would ever consider such an entry/piece of work could be about them b/c well, such is the ignorance and empathic inabilities of said individuals.

Truly Sleepless, I think you could relate with this entry. So here is the link: jenjiworld. Feel free at your leisure.

Also, know that I have cut out life-long friends who have been less than supportive, as well as family members, this is just a step you are going to need to eventually take. Abandon your need for acceptance and understanding b/c they will never change. It is what it is and the only one who can make the change in your relationships with them, is you: by denying them opportunity to suck the life from you. These adjustments have been some of the best decisions I have ever made, although not easy to navigate at first, in the end my health has thanked me for it. Genetic loyalty is a scam. Genetic loyalty should be earned, not expected. They're not earning it, why should you?

Oh and before I forget, regarding another post, have you been scanned (MRI) for MS? B/c your symptoms sound very MS ish. I have a friend with MS and you describe some of her symptoms to the letter. Just wondering, b/c the MRI can be quite definitive in MS diagnosis, although a very small percentage of individuals with the disease can still scan negative; but we're talking a very minute percentage.

That's all.
Oh and remember, narcolepsy network is the unconditional family that understands for all of us, so keep spilling it b/c like I always say, we get it.

be well,
jenji

#4 Marcianna

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Posted 29 March 2009 - 11:22 PM

Jenji, Thank you for saying that I am glad that so many of you are here and have the time and energy to help each other out. Narcolepsy Network is not just a resources for knowledge but a resource for understanding also. It makes me so happy to see so many of you come together like now for support. Even though, usually there is nothing we can actually do about our situations.....


Enough with the professional babble...

Sleepless, I understand you want to be nice out of respect for your mother I really do. But I believe she sees this and knows that you are being walked all over, perhaps something she would like to see you do is stand up for yourself. They clearly dont listen and clearly dont care so why show them any sort of decency? If they are literally stealing from your children then put a stop to it. Really. Is the world going to come to an end if that cousin returns the painting that belongs to your son? will that cousin shrivel up and die from the loss? Doubt it. If you can prove it is his then get it back. And if they really want to be jerks about it then write them off. You do not need to spend time and energy on people who dont give a hoot about you and are only out for themselves. We have so very little of it as PWN why waste it like that. Just quit talking to them it does not matter what they think. Get an answering machine for when they call and if they really have something important to say then call back.

You would be surprised how many people I quit talking to simply because they dont respect me enough to try and understand or listen.
And if they cant respect me, then I have no time for them. ever.

I believe we are all stronger than we think. Sometimes we need to reach inside and and find that energy that enables us to "grow a pair."
It isn't easy, but it can be done!!!

I wish you luck!

((((((hugs!))))))

#5 loki

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Posted 30 March 2009 - 08:36 AM

I've pretty much stopped interacting with my family at all. I got tired of the disrespect.

#6 sleepless sleeper

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Posted 30 March 2009 - 09:17 AM

Okay, I should drop this, but it just happened last night:
I added a facebook account, and as many of you probably know, the moment that you register you are inundated with "you may be interested in adding this person to your friends" suggestions.
My sister was the first one. I ignored, found a good friend, added him, and lo behold every message that he's had going pops up on my home page. There in plain sight was a message to him from my sis saying that she would send him to Cancun anytime to stay at their condo.

???????????

WTF?
2 months ago she acted like she had no money so I sent her $1,500.00. Okay. I'm done.

Thanks everyone. I cannot express enough appreciation for your support. My facebook account is Shanna Metzger.

Kisses to all.

#7 jenji

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Posted 30 March 2009 - 11:55 AM

Innundated...

precisely why my facebook name is not my true name. I control who I want to "find" and speak to.

My friends all understand.

jenji

#8 sleepless sleeper

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Posted 30 March 2009 - 11:47 PM

QUOTE (malachi777 @ Mar 29 2009, 09:17 PM) <{POST_SNAPBACK}>
It is very difficult for others to understand since they do not know how it feels to live with this condition. They do not realize what TIRED really is. My mother always calls when I am sleeping and she says, "get up, lazy bum" and I just grin and bear it. It does get quite frustrating at times but just learn to relax and realize that they will never understand us.

I do not tell anyone I have narcolepsy because I look too healthy. I am muscular and enjoy bodybuilding, so when people look at me, they think I am a hypochondriac. I have given up and have conditioned myself to try understanding those who do not understand what I am living with. They will never understand. When you accept that, you will be more at piece.


Yeah, thanks Malachi. excellent advice

#9 sleepless sleeper

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Posted 30 March 2009 - 11:48 PM

we very clearly have the same freakin Aunt

OMG Jenji. You are so freakin awesome! You rock, girl

Oh and before I forget, regarding another post, have you been scanned (MRI) for MS? B/c your symptoms sound very MS ish. I have a friend with MS and you describe some of her symptoms to the letter. Just wondering, b/c the MRI can be quite definitive in MS diagnosis,
This friday. being put to sleep. I went two fridays ago, and guess who FREAKED in the tube with valium?

#10 sleepless sleeper

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Posted 31 March 2009 - 12:00 AM

My friends are my family. I feel so at home here. It's been a long time since I've had that feeling. Too bad the Hallmark store is closed.

I have never exposed so much of myself. It is a liberating experience.


#11 Mr BluBerry

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Posted 14 April 2009 - 06:38 PM

i also have an aunt who thinks im a hypochondriac and doesnt believe i have N. she is also a doctor

good job most of my family live in bangladesh, i dont have to deal with them most of the time!

family to me is the people you love the most, not people you are related to. i think of it like this: if this person wasnt related to me, would i give 2 *BEEP*s about them? if the answer is no, i just keep them at a distance and stay polite, but i wont hesitate to speak my mind if they go too far. if the answer is yes, then i hold them closer than id hold a friend, because the blood connection automatically enables me 2 trust them because tehy would trust me for the same reasons

but, currently,i consider my family those people i keep close to me who love me despite my N and actively make an effort to help me with it.

even my dad, until last week barely knew what N was apart from the fact that i sleep a lot. he read about N on wikipedia once and thought he knew what was happening to me better than i did. he persistantly used to patronize me and make me feel like i was putting it on, make me feel lazy and inadequate just because i was tired.

he only started believing me last week when i went deep into what N actually does to me, and when i described the darker side of it, he looked genuinely shocked. i think for some people, they just need 2 be faced with the reality of the situation and the condition and understand that they will never understand, all they can do is support and trust you

#12 sleepless sleeper

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Posted 14 April 2009 - 06:46 PM

Mr. Blubry, thanks for sharing that, and it is a good thing that your father seems to get it now.

It 's good that you joined because I am SO FREAKING HAPPY that there is someone else on here that uses a naughty word or two besides me.

AWESOME UR HERE! biggrin.gif

#13 Mr BluBerry

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Posted 14 April 2009 - 08:51 PM

WOO!! YEAH!!

LETS ALL GET FREAKIN FUC-



zzzzzzzzzzZZZZZZZZzzzzz


...snore...

#14 Irishhh

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Posted 22 April 2009 - 08:39 PM

I know how hard it can be when you feel like you're screaming at the top of your lungs and no one can hear you at all. I know what it's like to feel like your drowning, gasping for air, but no one has a clue that you are struggling. I know what it is like to feel vengeful and angry. We all know what you're feeling. Every one of us human beings goes through something that not everyone can understand. We have to realize that people are only capable of so much and at that point they break, like all things.

Who knows why your aunt feels the need to act this way, what makes her not believe you... Is it out of anger, fear, maybe she doesn't want to believe you have this feeling? Maybe she is the type of person who has to see to believe? or maybe she is just mean. I think people have a tendency to try and get away with what they think they can, they'll push as much as they can until you do eventually break. Some people want to see you break, some people don't even care.


I have a problem with my mother. She has had medical problems every since I can remember. Migraines, degenerative discs, broken tailbone, on and on the list will go... and it's all true. She had a lot of physical abuse in the past which contributed to most of her pain. She takes a lot of pain medication... So sometimes she's my mom, and other times she is not. Mostly... She's not. and it hurts deeply to say that and to feel that. I usually try to ignore it all together.

If i'm without one of my medications I can't ignore things, and at that point I burn, just as you are now. Feeling enraged and on fire, as if you could blow up the world! Sometimes anger gets the best of us, emotions are so very strong. but keep in mind, that emotions can also be damaging to your health. Stress, anger, anxiety, it can all be rather tearing. You're already fighting a hard enough battle, please try not to let others ruin your happiness. I know it is hard to avoid.

I think I'm best at avoiding things, ignoring them... but I've had a lot of exp. doing this with my mother. She has always said off the wall crazy and hurtful things b/c the medications she is on make her insane half the time. I try to ignore it. The other day, she was not that off the wall when she told me that she doesn't think I have N. That the doctors are trying to fill my head with things and put me on medications I don't need. I overheard her on the phone w/ my dad when he picked me up from work one day. I don't know what she said, but it basically was that I didn't need him to pick me up... Well, yeah I kind of do. Since I have to drive 45 mins to work and barely keep my eyes open let alone the accidents I almost caused without really even realizing it til later.

So.. I really just wanted to say that we all have these issues. We all have people who don't want to listen. You have options, either cut them off completely, blow up at them, try harder to explain the issues to them, or don't say anything.

Which of those options really feels right to you?