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Love And Marriage Plus Narcolepsy


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#1 ayesart

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Posted 28 October 2009 - 12:19 PM

Humans and animals have been adapting to their environment since they climbed out from the soup of creation.
There have been natural disasters along the way and our ancestors have survived them to go on to propigate future generations. One can say we have become quite expert at adapting to the stresses and lessons within nature.
Our ancestors didn't have degrees handed to them and their knowledge on how to survive was derived from observation, instinct and common sense. Common sense thinking means taking the observation beyond the box of the norm.

A successful marriage shows that both parties have been adapting to each other's emotional states of being, anger management also plays a big role therein. Love that is uncompromising and hanging very free of control and limitations. Trust is a very big factor. And a willingness to stick by the other person no matter what - this means supporting them through the hard times and encouraging them to go beyond their personal box of positive potential without nagging them to death.

I am hearing impaired, colour blind and have had Yag Lazer surgery to correct closed end glaucoma in my eyes.
My wife is Narcoleptic. We compesate on behalf of one another when it comes to our challenges.

1: I give her the space she needs to go shut down when she needs it.
2: Narcolepsy in its advanced stages hampers memory. I've become quite adept at being my wife's memory repository.
This means I have to observe her every move to see where she has placed her keys, cell phone, when to pay her bills, when to keep her appointments, when to go to sleep, (a narcoleptic shows classic signs of when they are fighting sleep and their eyes droop and their words begin to slur. Their motor responses become very slowed from the norm. Lastly I help her to recall her medication schedule. She has volunteered to show me what pills she is going to take so I can remind her not to take them again.

3: She was taking a sleep medication that wasn't quite working for her. I say that because she would get up in the middle of the night to cook food. That is part of her automatic behaviour. She also experiences auditory phenomenon as well. One night she heard my voice asking her to cook some food. (I didn't ask that. I was fast asleep next to her.)

4: I am her watch dog when it comes to doctors prescribing medication for her. I have to be there listening and asking questions of them regarding drug interactions, blood pressure pit falls caused by a specific drug etc.
I use the internet a lot to research the potential negative effects of drugs on the human body. I have to because if she has a reaction I have empowered myself to speak on her behalf to the doctor regarding that reaction.

What she does for me.
1: She listens to other people speaking to me and often has to translate to me what they have just said when I have trouble hearing them. My hearing comes and goes even with hearing aids.
2: She's my eyes on the road and helps me to navigate safely for both of us.
3: She speaks up at my doctor appointments when I forget to inform the doctor about what's nagging me health wise.
4: She is my art eyes. I am colour blind and her sight and imput lets me know that a specific colour I am using has been worked properly. Sometimes when she's sharp as a tack and I become forgetful and fret about it she helps me to find that which I have lost.

When my wife started having problems with her memory she was going through a very hard time at her job. As a result of her new memory challenges she was forced to step down from her co-ordinating position. I supported her through that hard time and encouraged her to step down because the position was a high stress one. A narcoleptic cannot take stresses because it worstens their condition. She now works for the same company in a less stressful environment and now she is much happier as a result. It took five years for her to realize that her job was hurting her. She would listen to me but she wouldn't act accordingly until she was forced to do so by her superiors.

I have taken over the task of driving her around. Her condition has presented challenges that have to be accomodated once in awhile. My que comes from observing her physical state in the morning. Her body language and mannerisms tell me when I have to drive her to work. She drives only when I observe her body language and mannerisms to be energetic enough to handle the task of driving. Narcoleptics have very specific mannerisms that tell us a lot about their present state of being. Her vocalizations become more confused and her sentences become incomplete and there is a definite struggle to finish them. I often have to finbish her sentences for her so one could say I have become a bit phychic.....

Another important key I can share with you today is living within the here and now. Being there today. Living in today. Thnking and breathing today. Every momenmt every action within those moments determine what is to come tommorrow. We all have been graced with that power. We also have been graced to learn from our past mistakes.
We have been graced with the empowerment that is within common sense thinking. That mode of thinking can take you very far when it comes to surviving and adapting yourself to different situations. In order to think outside the box using common sense thinking one has to be very observant of one's situation within every moment of one's life.
If one is fretting over trivialities one loses the moment that might contain a very unique opportunity. Common sense thinking can open many doors for opportunities to begin happening for you. If one sits around doing absolutely nothing to enhance their own lives then opportunities never come to you. We have been empowered to create opportunities and there is no limit to how many you can create. If you miss one you learn from that loss and begin creating a new environment for it to come to you again.

In closing:

Realize that your mate is very special because there is only one true soul mate you can really love and share life with them. Regard the latter as a very unique priveliage. If you are just coping you're not adapting.

Respectfully:

Ayes

#2 sleepless sleeper

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Posted 29 October 2009 - 01:28 AM

I am honored to meet you. God bless you. If you aren't religious or if you don't believe in God, then please get over me saying that. I don't think I've ever said that to anyone on here before. Out of all the posts that I've made -on here- I think that was a first. I was compelled by you. who you are. Thank you for that post.

#3 ayesart

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Posted 29 October 2009 - 07:24 AM

I am honored to meet you. God bless you. If you aren't religious or if you don't believe in God, then please get over me saying that. I don't think I've ever said that to anyone on here before. Out of all the posts that I've made -on here- I think that was a first. I was compelled by you. who you are. Thank you for that post.


I've do believe in the Great Mystery.
I also do beleive that we are all Created Creators.
If one has been born with specific challenges, then we have to begin to look at why.
One must consider that the challenges are positive ones instead of taking a negative view upon them.
If we were all meant to be "perfect" then it would have come to pass.
Its all about how we view things that come to us in our life time.
If my wife didn't have N, and if I wasn't an undiagnosed N, then I wouldn't have been led to here where I am now sharing this with you, interacting with you.
I plan to write a lot here. Presently I am working on a writing project that concerns the possible co-relation
between Narcolepsy and Machado Joseph's Disease.
You will find it here within "Shout".
It will be an ongoing work because as I find more data on the internet I will post links to them within that article and others like it.
I do promise you that any data I share on DNA will be translated into the King's English, so that everyone will have a clear understanding of what has been said in research papers.
I have committed myself to learn everything I can about the human condition by way of DNA studies.
There was a philospher who once said: "Know thyself...." Knowing myself helps me to understand others because we all come from the same place because we are all interconnected to one another.

Respectfully

Ayesart

#4 sleepless sleeper

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Posted 02 November 2009 - 05:35 PM

there seems to be many pwn w/ other autoimmune diseases.

i am hving a really hard time typig again. getting my thoughts out. i want to say a lot but there is a muddy pool at the base of my brain that my expressions must pass through before being expressed from my hands to the keboard.

we need a skype conference chat. we = other pwn

i'll post on this.

so hard to type sometimes.

#5 AssociatedWithFire

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Posted 06 November 2009 - 05:42 PM

this is a brillient post! Im printing it out and hanging it on my fridge!

#6 sleepless sleeper

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Posted 06 November 2009 - 08:35 PM

I came back to read this and looked at my post. Perfect example of problems with typing and communication on my part: "please get over me saying that."

Ayesart, thank you for not taking that negatively. I would have. It is not what I meant, and it appears that you understood that. Thank you.

#7 SureSleepsalot

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Posted 10 November 2009 - 07:06 PM

Ha. Notice how this is all good. A nice write up for those who are currently married... but; For those of us that have lost all hope, its just a glimpse of what never was; and never will be. YOu let the wrong one go and now you're hatin it.
Smile in my face but you're fakin it.
I'm always half baked, like a jamacian spliff taking me for a riff how long since taking it?, is there a disconnect b/w time and space?

Watch this, you can actually feel your soul lift, into the air admist the smoke from the bowl its
Mostly air sustaining you... Breathe deep, Comfortable seat, keep your comments brief...
To be honest, and well, Posted Image least its not Posted Image

#8 ayesart

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Posted 12 November 2009 - 09:03 AM

Ha. Notice how this is all good. A nice write up for those who are currently married... but; For those of us that have lost all hope, its just a glimpse of what never was; and never will be. YOu let the wrong one go and now you're hatin it.
Smile in my face but you're fakin it.
I'm always half baked, like a jamacian spliff taking me for a riff how long since taking it?, is there a disconnect b/w time and space?

Watch this, you can actually feel your soul lift, into the air admist the smoke from the bowl its
Mostly air sustaining you... Breathe deep, Comfortable seat, keep your comments brief...
To be honest, and well, Posted Image least its not Posted Image


Oh Wad the Giftie Gie to us to see oursels as others see us.

Those who have really lost at least have tried.

Those who haven't are always sure to cry. Be alone.

Its all about working very hard to make a thing that would fail, work.

One has to be very stubborn to flow with the mow.

There are those sitting around waiting to drag you down....

But down that path I refuse to go.

Because I know, it can work...despite the physical challenges.

With a little determination....

And quiet declaration....of knowing what I want

Out of life....what's rightfully mine. Joy, sharing and love.

Hopefully others will follow....

Where others fear to tread....

There's some freedom in that...

So, my word of advice is to gird your biceps...

And put on your looking glasses...

And Open your heart....

Your soul mate is out there...Waiting for you to see Her/Him.

Are you really looking beyond the jibe?

If you aren't

You just have to look a little harder....


There was once a man from Peru

He was blinded by the hopelessness he bought into.

Couldn't see the light cause he was engulfed in a darkness

Of his own design.

So, there he lives in his shoe...

This man from Peru....

Hopeless.....waiting for a sign...

She and I were lucky....But the path at first was very hard...

Sometimes it still is....

Nothing is ever easy...I never said it was...

If someone say's it is then you're dreaming

The fool's nighmare.

Read between the lines its there...

Not only is the writing done for married persons

I was also hoping it would serve as a map for singles...

Just sitting around eating Pringles....

(Loneliness is quite salty you know. I've been there...

Looking for more than.)

Its for you who are looking for a solid relationship map.

For a little solid give and take....

So one can eventually plant a home,

stake a claim to what is

Rightfully theirs.

No splitting hairs here...

I am talking "be here now."

happiness, glad times, sad times...

That's what its all about.


You and I are made of the same fabric, the same star dust...

Know that we all have been empowered to make a heaven of hell

Or a hell of heaven....

The choice is always yours.


If its Haiku you want you won't get it here...

Cause this isn't Japan...


Know that our bodies are but things of this fleeting moment

There was never a time when you and I were not.

Nor will there ever be a time when any of us will cease to be.


Life and death

Sickness and health

are but words that are superficial aspects

of the immortal within us.


Now begins the august years of my life.

Sweet youth's blossom begins to fade.

So forgive me if a seem a bit schizophrenic now.

But my youthful mind is locked within a worn out cloak.

I know that a hundred years from now it will not matter that I

Have trod upon this earth. But I hope that someone's life

May become a little better because they have read my words.


So look behind you friend, back

Across the sands of time...

Your footprints always follow.

For whereever you go

You leave indelible traces

Of invisible ink

Like words never to be erased.

Just as the moon can never hide

Her beauty from all surrounding space

Or as the earth can never escape from the ever pulling sun

You can never run away from the trail you leave behind.


So look behind you

And ask yourself this question:

Are you happy with the path you've chosen?


I want to touch you,

To soothe with cool fingers the hurt burning places

In your mind.


To move softly behind your isolated lonely eyes

And whisper to your most hidden self:

You are not alone.


And with my strong left hand

I would support the aching trembling

Weariness of your spirit.


Yet,


I can only weep with you!


Ayes

#9 hathor

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Posted 12 November 2009 - 09:31 AM

hi ayesart. i was gonna write something but its completely gone my mind has yet again gone blank!!!!its nice to read your post tho so keep it up.

#10 ayesart

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Posted 12 November 2009 - 09:54 AM

hi ayesart. i was gonna write something but its completely gone my mind has yet again gone blank!!!!its nice to read your post tho so keep it up.


Thanks for the positive comment....

I will keep on keeping on.

Ayesart

#11 ohiolor

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Posted 12 November 2009 - 10:20 AM

Ayes,
You truely are an artist, not only with a paintbrush but with words! I wanted to reply to Sleepsalot (Adam) but just couldn't come up with the right words...you created a beautiful reply that says what I wanted to and more.

Thank you for your contributions,

Lorrie

#12 ayesart

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Posted 12 November 2009 - 11:23 AM

Ayes,
You truely are an artist, not only with a paintbrush but with words! I wanted to reply to Sleepsalot (Adam) but just couldn't come up with the right words...you created a beautiful reply that says what I wanted to and more.

Thank you for your contributions,

Lorrie


Thanks!

Ayes

#13 SleepingPhoenix

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Posted 14 January 2011 - 02:18 PM

Humans and animals have been adapting to their environment since they climbed out from the soup of creation.
There have been natural disasters along the way and our ancestors have survived them to go on to propigate future generations. One can say we have become quite expert at adapting to the stresses and lessons within nature.
Our ancestors didn't have degrees handed to them and their knowledge on how to survive was derived from observation, instinct and common sense. Common sense thinking means taking the observation beyond the box of the norm.

A successful marriage shows that both parties have been adapting to each other's emotional states of being, anger management also plays a big role therein. Love that is uncompromising and hanging very free of control and limitations. Trust is a very big factor. And a willingness to stick by the other person no matter what - this means supporting them through the hard times and encouraging them to go beyond their personal box of positive potential without nagging them to death.

I am hearing impaired, colour blind and have had Yag Lazer surgery to correct closed end glaucoma in my eyes.
My wife is Narcoleptic. We compesate on behalf of one another when it comes to our challenges.

1: I give her the space she needs to go shut down when she needs it.
2: Narcolepsy in its advanced stages hampers memory. I've become quite adept at being my wife's memory repository.
This means I have to observe her every move to see where she has placed her keys, cell phone, when to pay her bills, when to keep her appointments, when to go to sleep, (a narcoleptic shows classic signs of when they are fighting sleep and their eyes droop and their words begin to slur. Their motor responses become very slowed from the norm. Lastly I help her to recall her medication schedule. She has volunteered to show me what pills she is going to take so I can remind her not to take them again.

3: She was taking a sleep medication that wasn't quite working for her. I say that because she would get up in the middle of the night to cook food. That is part of her automatic behaviour. She also experiences auditory phenomenon as well. One night she heard my voice asking her to cook some food. (I didn't ask that. I was fast asleep next to her.)

4: I am her watch dog when it comes to doctors prescribing medication for her. I have to be there listening and asking questions of them regarding drug interactions, blood pressure pit falls caused by a specific drug etc.
I use the internet a lot to research the potential negative effects of drugs on the human body. I have to because if she has a reaction I have empowered myself to speak on her behalf to the doctor regarding that reaction.

What she does for me.
1: She listens to other people speaking to me and often has to translate to me what they have just said when I have trouble hearing them. My hearing comes and goes even with hearing aids.
2: She's my eyes on the road and helps me to navigate safely for both of us.
3: She speaks up at my doctor appointments when I forget to inform the doctor about what's nagging me health wise.
4: She is my art eyes. I am colour blind and her sight and imput lets me know that a specific colour I am using has been worked properly. Sometimes when she's sharp as a tack and I become forgetful and fret about it she helps me to find that which I have lost.

When my wife started having problems with her memory she was going through a very hard time at her job. As a result of her new memory challenges she was forced to step down from her co-ordinating position. I supported her through that hard time and encouraged her to step down because the position was a high stress one. A narcoleptic cannot take stresses because it worstens their condition. She now works for the same company in a less stressful environment and now she is much happier as a result. It took five years for her to realize that her job was hurting her. She would listen to me but she wouldn't act accordingly until she was forced to do so by her superiors.

I have taken over the task of driving her around. Her condition has presented challenges that have to be accomodated once in awhile. My que comes from observing her physical state in the morning. Her body language and mannerisms tell me when I have to drive her to work. She drives only when I observe her body language and mannerisms to be energetic enough to handle the task of driving. Narcoleptics have very specific mannerisms that tell us a lot about their present state of being. Her vocalizations become more confused and her sentences become incomplete and there is a definite struggle to finish them. I often have to finbish her sentences for her so one could say I have become a bit phychic.....

Another important key I can share with you today is living within the here and now. Being there today. Living in today. Thnking and breathing today. Every momenmt every action within those moments determine what is to come tommorrow. We all have been graced with that power. We also have been graced to learn from our past mistakes.
We have been graced with the empowerment that is within common sense thinking. That mode of thinking can take you very far when it comes to surviving and adapting yourself to different situations. In order to think outside the box using common sense thinking one has to be very observant of one's situation within every moment of one's life.
If one is fretting over trivialities one loses the moment that might contain a very unique opportunity. Common sense thinking can open many doors for opportunities to begin happening for you. If one sits around doing absolutely nothing to enhance their own lives then opportunities never come to you. We have been empowered to create opportunities and there is no limit to how many you can create. If you miss one you learn from that loss and begin creating a new environment for it to come to you again.

In closing:

Realize that your mate is very special because there is only one true soul mate you can really love and share life with them. Regard the latter as a very unique priveliage. If you are just coping you're not adapting.

Respectfully:

Ayes


Dear Ayes:

Thank you for your post. You have no idea how much it helps me. I have had two divorces prior to my diagnosis, and many problems with my family and I just got diagnosed a couple of months ago. I thought I was not made for marriage, and neither for children. I used to think about my life as a loner and as dying alone. Now I know it is not gonna be easy find someone that would dare to share his life with me, but still if I manage to control it a bit, may be I can try again, and have a relationship that it is worth fighting for. I'll pray for you and your wife to keep you both strong and in faith cause I believe in marriage and I know how important is to have someone to grow old with, and someone you can trust in the worst moments. Bless you both and keep going cause you are an example for so much people.