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#1 AssociatedWithFire

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Posted 24 November 2008 - 09:02 AM

monday morning, november 24 2008. My name is Mickey. Here I am known as associatedwithfire. I am sitting on the couch with my oldest daughter Aurora who's 4 and we are watching the Wiggles. Truth be told she is watching it and I am here. I am on this page, talking to you. Thankful you are here to listen to me and give me a shoulder to lean on. It has been 32 hours since my last failed attempt at getting rest in the prone position and probably like you it seems as though its been 32 years since I have been able to reach that particular goal.
Yesterday (Sunday) was typical as it led into the evening. The usual confusion and uncertinty as I waded through the hours of the day. Finally around 10pm I was able to retire to my office which is in a little barn I built just off the side of my house. I close the door behind me, slide the latch lock into place, check the fridge for my supply of power bars, pop tarts and creamer. Check the freezer to see what microwavable culinary abortions are stocked for the night, throw some wood in the wood stove, and arrive at my desk. I adjust the position of my laptop so its angled just right, put the typical desk implament back in there obsessive compulsive positions, take a long hard look around the room locking the notion in my mind that everything is in its correct place. Turning toward the computer on my well worn swivel stool my eyes shift slightly out and then back into focus on my new home page here In the world of my mind. Home. Narcolepsy Network. Untill right now, this very moment I have been waiting for the sandman and his paralyzing friend to jump out from some hidden location. Now I know where I am and I feel safe. My breathing has a slow full rythm.
10:22pm, I am downloading AIM, Yahoo messenger and windows live messenger as I understand these are common means of regular chat within my new community. I get easily frustrated by these download items. I have decided to put off learning how to work them untill I really need to know. I wish I was in bed with my wife, Sleeping.
11:07pm, Surfing the halls of NN looking for a familiar face or a new response in the stadium of conversation in day by day. No responses yet to some of mine and some responses to others. slowly I am learning my way around.
12:13am, A knock at the door? Yes. Who is it?! It's me, open up it f'ing cold out here. My wife has come out to tell me our youngest daughter Anika (2yo) needs to go to the hospital. She is having a hard time breathing and she has a fever. My wife sensed before I did my mind starting to short circut and skip the groove. "Its ok hun" she says to me, I need you to stay inside and listen for Aurora while I take her, ok? Ok. I seem to have to solve all problems my ears absorbe when Im having a ruff spot, and when my wife has the next few steps planned for me (especially in hi stress moments) it seems to help me hold on to consecutive thoughts and fall back into whats normal for me. I grab the computer look frantically around the room and follow her into the house.
12:30ish am, wifes off with Ani, Im in the kitchen. I have no idea what to do with myself now. I keep looking around the room and I see many things I can do but my mind refuses to lock on to anything and give me the next step. Ok The computer I still understand. To the couch I go. I am back. Home again. Here again.
A short time later I have managed to work out NN enough to make contact with Marcianna who has given me her yahoo name. After a little fighting with my computer It works. Marcianna is graciously spending time making conversation with me and lasts for what must have been 2 or so hours. My older daughter has also woken up and is now lying at my side on the couch watching me silently type on the computer. when we say our goodnights I am thankful for NN and for the willingness of a relative stranger to offer a sholder to lean on. Thank you so much Marcianna! for the next several hours Aurora and I play on the computer. She on the tablet pc and me on the laptop. I spend my time doing random searches from google as in time like this where I am stressed, tired, scared etc. I cannot focus And Aurora sees fit to demand my attention every few minutes to show me the princess she has redressed for the umpteenth time with no apparent lack of enthusiasm.
around 7:30am my wife calls to let me know she is returning home with Ani, as Ani's tempurature has returned to normal the hospitol has no desire to keep her there. Aurora and I are happy with the news. "Mom, I love you in my heart" Aurora says into the receiver. I well up but maintain my composuere pretty well I feel.
8:15am Megan (my wife) and Ani are home. Smiling my wife tells me breifly of her events and I inform her the coffee is on and ready. Ani sits on the couch next to me and Aurora and sings the wounder pets theme song.


Im not exactly sure why I wanted to type all this out but there you are. Thank you again Marcianna for listening.
I can feel a sleep attack comming on and my arms and legs are tingeling in the really uncomfotable way so I need to leave now.
i wishwll go to right down more latder but tired to now so latermabey.

#2 greatbig47

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Posted 24 November 2008 - 09:23 AM

Mickey,

Is there any feeling worse than the feeling that your child is sick...without ANYTHING you can do about it? I know this is the absolute worse sink of emotions a parent can feel! Parents have this unique desire to make things better. To kiss the booboos and and make sure they take the medicine. When parents are stuck in that unclear and helpless moment, nothing feels worse.

I'm so glad to hear she is okay!!!! That is worthy of celebrating in some manner, even if that celebration is as simple as realizing the next day ahead of ANY of us might not come.

Makes today the best day ever, don't ya think?

love and prayers

-Stu

#3 sleepless sleeper

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Posted 24 November 2008 - 09:25 PM

It has been 32 hours since my last failed attempt at getting rest in the prone position
Is this a normal routine? I do understand no sleep, and I can empathize with the number of hours spent in zombie mode. Do sleep meds help?

I adjust the position of my laptop so its angled just right, put the typical desk implament back in there obsessive compulsive positions, take a long hard look around the room locking the notion in my mind that everything is in its correct place.
Is it as common to meet people with OCD in the "normal" population, or am I right in thinking that a large proportion of people on this site have some bit of OCD?

I am downloading AIM, Yahoo messenger and windows live messenger as I understand these are common means of regular chat within my new community.
What happened to the "shout out" or whatever it was called that was at the top of each site page?

I need you to stay inside and listen for Aurora while I take her, ok? Ok. I seem to have to solve all problems my ears absorbe when Im having a ruff spot, and when my wife has the next few steps planned for me (especially in hi stress moments) it seems to help me hold on to consecutive thoughts and fall back into whats normal for me. I grab the computer look frantically around the room and follow her into the house.
It's amazing how N can reduce intelligent people to cattle, but then I'm sure cattle are the very best at being cattle so please forgive the analogy.

I cannot focus And Aurora sees fit to demand my attention every few minutes to show me the princess she has redressed for the umpteenth time with no apparent lack of enthusiasm.
Thankfully we have these wee ones to keep us grounded, although, it is tiresome to consistently shift our attention. My three year old son never tires of Spider Man. There is such a difference in the way boys and girls play even at such a young age. If I could just find a way to pick up their enthusiasm and maintain it...

"Mom, I love you in my heart" Aurora says into the receiver. I well up but maintain my composuere pretty well I feel.
These are beautiful words. Thank you for sharing them.

Aurora and sings the wounder pets theme song.
Cody's (our 3 yo) all time favorite.

Im not exactly sure why I wanted to type all this out but there you are.
I've had the same need, and it's wonderful to have a place to post our thoughts.

I can feel a sleep attack comming on and my arms and legs are tingeling in the really uncomfotable way so I need to leave now.
Sorry it's uncomfortable, but thankfully the sleep came. Hopefully, it was restful. Sweet dreams.

By the way, great job building the barn.

#4 AssociatedWithFire

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Posted 24 November 2008 - 11:26 PM

QUOTE (sleepless sleeper @ Nov 24 2008, 09:25 PM) <{POST_SNAPBACK}>
It has been 32 hours since my last failed attempt at getting rest in the prone position
Is this a normal routine? I do understand no sleep, and I can empathize with the number of hours spent in zombie mode. Do sleep meds help?
unfortunatly yes. For example as I type this Monday Nov 24 11:08pm I woke from my last attempt Sunday Nov 23 1:35pm and I dont expect I will be off again untill somtime late Tuesday night Nov25 into early morning Wed Nov 26.
I am supposed to take zyrum but my insurance doesnt cover it "in NY State" and I cant afford $590/mo. I was supposed to get an application from NORD but nothing has arrived and my doctor is being and unempathetic son of a bludger.

I adjust the position of my laptop so its angled just right, put the typical desk implament back in there obsessive compulsive positions, take a long hard look around the room locking the notion in my mind that everything is in its correct place.
Is it as common to meet people with OCD in the "normal" population, or am I right in thinking that a large proportion of people on this site have some bit of OCD?
I cannot attest to this but I can say I beleive I developed my OCD due to apparent forgetfullness, inability to recall things I am supposedly an expert at and the ridicule received due to this. all as an undiagnosed and now I see the truth in it.

I am downloading AIM, Yahoo messenger and windows live messenger as I understand these are common means of regular chat within my new community.
What happened to the "shout out" or whatever it was called that was at the top of each site page?
I just found this shoutout like 5 minutes ago. Live people. SWEET! I guess it was right in front of me where I couldnt see it.

I need you to stay inside and listen for Aurora while I take her, ok? Ok. I seem to have to solve all problems my ears absorbe when Im having a ruff spot, and when my wife has the next few steps planned for me (especially in hi stress moments) it seems to help me hold on to consecutive thoughts and fall back into whats normal for me. I grab the computer look frantically around the room and follow her into the house.
It's amazing how N can reduce intelligent people to cattle, but then I'm sure cattle are the very best at being cattle so please forgive the analogy.
Moo?

I cannot focus And Aurora sees fit to demand my attention every few minutes to show me the princess she has redressed for the umpteenth time with no apparent lack of enthusiasm.
Thankfully we have these wee ones to keep us grounded, although, it is tiresome to consistently shift our attention. My three year old son never tires of Spider Man. There is such a difference in the way boys and girls play even at such a young age. If I could just find a way to pick up their enthusiasm and maintain it...

"Mom, I love you in my heart" Aurora says into the receiver. I well up but maintain my composuere pretty well I feel.
These are beautiful words. Thank you for sharing them.
When she first said this I had a few tears because it was so beautiful. my wife and I didnt try to correct her to the more standard with all my heart, instead we felt it was more true to adopt the words of a child. god they are good arent they!

Aurora and sings the wounder pets theme song.
Cody's (our 3 yo) all time favorite.

Im not exactly sure why I wanted to type all this out but there you are.
I've had the same need, and it's wonderful to have a place to post our thoughts.

I can feel a sleep attack comming on and my arms and legs are tingeling in the really uncomfotable way so I need to leave now.
Sorry it's uncomfortable, but thankfully the sleep came. Hopefully, it was restful. Sweet dreams.

By the way, great job building the barn.


thank you for your kind words. unfortunatly I havent been rested in so long I literally cant remember the last time it was.