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rob
12-30-2008, 12:24 AM
Tonight, for whatever reason, is an awfully long, and dark night. Once again, I can't sleep. I do everything I can to fill my days with things that I can do. I try to accomplish whatever I am able to on any given day. Some days I'm in the plus column, somedays I break even, and somedays I lose. Today, I guess I was in the losing column.

I don't feel any better, or any worse today. The fog, and the joint pain are as they usually are. Barely tolerable. But today, they remind me of who I used to be, and prevent me from accepting who I am now. For whatever reason, all I can think of is how things used to be. How I had, for one brief moment, the world in the palm of my hand. All those years of school, mixed with dreams that knew no boundaries, were the stuff my life was made of. Add to that mix, a love that I thought would last a lifetime, and you have the makings of a dream come true. For one short moment, I had that, and then it was taken away. I fought to keep it. I fought to keep her, but it wasn't to be.

I tell myself that 364 days a year, I can deal with it. I can get past the thoughts, and broken dreams of what might have been, and get on with my life. Well, I guess today is day 365. The one day I allow myself to think about these things. So many of us have lost so much because of this stupid thing called lupus. I know I'm not the only one who hurts tonight, but I thank you for listening. I hope the morning can bring a better day for all of us.

Rob

sits_inthe_corner
12-30-2008, 03:58 AM
Gentle hugs to ya Rob,

I'm not going to write a "pep" talk. Quiet dark thoughts happen to us all from time to time. They are what they are.

Some times they swirl around and start to boil. I just acknowledge mine and let them wash over me like a wave and let them go. Leaves me feeling empty for a while. But then life pokes it's nose in and there are things that need to be done and I get my butt moving again.

Hope life pokes it's nose in on ya :lol:

SandraC1983
12-30-2008, 09:06 AM
The lights go out all around me
One last candle to keep out the night
And then the darkness surrounds me
I know i'm alive but i feel like i've died
And all that's left is to accept that it's over
My dreams ran like sand through the fists that i made
I try to keep warm but i just grow colder
I feel like i'm slipping away

After all this has passed, i still will remain
After i've cried my last, there'll be beauty from pain
Though it won't be today,
Someday i'll hope again
And there'll be beauty from pain
You will bring beauty from my pain

My whole world is the pain inside me
The best i can do is just get through the day
My life before is only a memory
I'll wonder why God lets me walk through this place
And though i can't understand why this happened
I know that i will when i look back someday
And see how you've brought beauty from ashes
And made me as gold purified through these flames

After all this has passed, i still will remain
After i've cried my last, there'll be beauty from pain
Though it won't be today,
Someday i'll hope again
And there'll be beauty from pain
You will bring beauty from my pain

Here i am, at the end of me
Tryin to hold to what i can't see
I forgot how to hope
This night's been so long
I cling to Your promise
There will be a dawn



I know how you feel Rob and Im sorry you feel that way. I also had dreams. I wanted to do so much in my life. I thought my marriage was great, but I was wrong. Its like everything slipped through my fingers. Everything just lingers, but I get through it. I don't want you to feel alone and sad. It hurts me and probably everyone else that you feel this way. I get in my Dark Holes often and sometimes I find no relief. Which caused me to do something stupid. I don't know what else to say. I just hope you feel better.

Smile Sunshine :) :wink:

Sandra

NoodleMom
12-30-2008, 09:23 AM
Wish I had something I could say but I just cant find it within.

It is about accepting ones reality isnt it?

Sorry your are in this place of.....

K

KathyW1958
12-30-2008, 10:05 AM
Hi Rob,
I am sorry you had such an awful night. I know the feeling very well. I hate this illness called Lupus, it truly is like a wolf. When you think you have it under control you get hit with a sneak attack. I hope that tomorrow for you will be a better day. I had a good Christmas that was painfree, but now the Prednisone is tapering down and shoot the pain is right back in my wrists and knees again. I hate that with a passion. I don't want to be on long term Prednisone, so I just don't know what they will do now. Oh well.

Hugs,
Kathy

Angel Oliver
12-30-2008, 10:40 AM
Sending you hugs in hope you know you are not alone :)

Love Angel.xxxxxxxxxxxxxxxx

(tooth breaker OUCH!!!!)xxxxxxxxxxxxx

Numpty
12-30-2008, 03:00 PM
~leaves a whole bundle of hugs for you~

I'm sorry you're hurting so badly, Rob! Just remember that we're all here for you and we can still all make new wishes and dreams together!!!

Pretti in Pink
12-30-2008, 03:15 PM
Rob,

Sorry you're in this low place, but this too shall pass. You're doing the right thing by not keeping it bottled in and expressing how you feel. Please continue to come to us, share, and allow us to go through it with you.

hatlady
12-30-2008, 03:28 PM
gentle hugs from me as well, rob, and gentle hugs all aound.

We all understand "the dark night of the soul," and sometimes can see the light of dawn more sweetly because of it. May the knowledge that you are not alone help you through the dark nights. We are here - from each other we gain strength.

gentle gentle hugs ~

Rastagirl
12-30-2008, 11:54 PM
Rob,

I am so sorry for your long dark night. For your stolen dreams. Lupus is a dream stealer of the worst kind.

I have spent my share of long, dark nights aching for those dreams that have been stolen and longing for the Me that used to be.

I am not a poet, but I wanted to share something I wrote several years ago. It was my first night home from the hospital after my first hip replacement surgery, and I was suffering through horrible pain and feeling very alone and very angry at Lupus and what it had taken from me.

I poured out my feelings on paper, and I sealed it in an envelope and addressed it: To the Me that used to be.

I recently found it in my nightstand.

It reads:
_______________________________
I was different before this,
I remember.

I was strong.
I had an innocent smile and a gentle spirit.

I remember I laughed more and cried less.
And I was fun.

I was eager and excited and so full of life.
I said yes to a lot more things.
And I hardly knew what Pain really was.

I was too innocent for this.

I was different before this,
I remember.

It hurts so much sometimes that I can't even
shed a tear for

The Me that used to be.
______________________________

My hope is for peace for your anguished soul, Rob. May tomorrow be a better day.

Fondly,

Lori (Rastagirl)

Saysusie
12-31-2008, 08:58 AM
Hi Rob;
You have been given warm hugs, sympathetic understanding, loving prayers and compassionate words already. I don't know that I can say anything to you that would be more eloquent or caring that what has already been said.
Just know that I understand your sense of loss and that 365th day. Long, dark nights are somewhat of a common theme for too many of us and fighting to retain something so important, only to lose that fight is (by itself) enough to send us into that long, dark night. So, yes, adding all that this disease does to you on top of that can only lead to a weary descent.
I actually believe that we must, occasionally, visit that dark place. It is in there that we take inventory of our lives, our dreams, our plans and our futures. It is there that we can sit, silently, and meditate upon all that is in our hearts. I once heard someone say that "Praying" is talking and "meditating" is listening. Often, in that dark place, when we are still and silent, we can hear the answers to some of our questions. It is here, in that dark place, where we make important decisions regarding the important changes that we are going to make in our lives. These changes include things such as: how we are going to think, react, view our place in the world, or even re-define our place in the world.
So, while being in the long, dark place sometimes seems like a step backwards, we often turn it into 10 steps forward. Therefore, there is never a need to apologize for being there. We all understand and we are all here for you..to listen, to comfort, and to support you and to let you know that you are valuable and cherished, no matter where you are emotionally!

Peace and Blessings
Saysusie

Oluwa
12-31-2008, 09:09 AM
Head hugs Rob....

I agree with Saysusie who put it so eloquently. Dark days, a time to inventory our life.

When I mediate, pray I hear answers like Saysusie said...for me, I believe those answers are from God, talking to me...and times God is quite matter of fact like with me. Times He reminds me I don't need to be apologetic for my disease but to have compassion and sympathy for myself as I would another....

Hope this day is better than the last....

Squueeze...
Love,
Oluwa

rob
01-01-2009, 09:47 AM
Thank you all for all of your kind words, and all the support. It's new years day. I hope this new year can bring good things for us all. There are alot of good ideas and thoughts in all of your answers and responses. Things I think can help me. Night time is the worst for me it seems. So many memories come back and visit me. Sometimes they are good, sometimes not.

Most of the time my somewhat self imposed isolation serves it's purpose well. It keeps people away. People who I fear may become friends with me. Once they got to know what I'm like, what my life is like, they would most likely do what the other 95% of people in my life have done. They go away and I never hear from them again. Loneliness is easier to deal with than losing friends. Being single is far safer than risking loving a woman and having her abandon me. So I guess it's all a tradeoff I have to accept. Open up and risk loss and rejection, or be alone, and lonely. Alone is the safest option.

The only people I feel comfortable opening up to these days are other people with Lupus. In other words, all of you. I know I'll be accepted, and that people understand what this is like. Thank you all for being my friend. Although my head isn't in a very good place today, my body feel pretty good. It's semi warm out, and much of the snow from the big storm has melted. I think I'll go for a walk, and get a little fresh air. Thanks for listening, and happy new year everyone.

Rob

sits_inthe_corner
01-01-2009, 10:28 AM
Rob, you are soooooo lucky I don't live close enought to cuff ya on the ear.

You're a sweet beautiful man who has a heart of gold. Not everyone you meet is going to walk away from you.....OooOoo if I was close enough you'd get such a pinch.

Just kidding...well sort of :P

I could just smack ya for having your snow melting off so soon. It's 1:48 pm new years day and I am snow bound. On the up side I still have power.

Enjoy your walk. Hope you meet a beautiful woman while you're out on your walk and she sweeps ya off your feet ... so there :P

iseedeadmonkeys
01-01-2009, 11:04 AM
Rob,

will yoou move over plz i wanna sit on your chair in your dark place too, and dont put the lights on or turn the heating up either, make this pain go away and the heartache, here take these pills and flush every single last one of them and delete everyones numbers off my phone, infact throw the damn phone away or hide it in the snow, dont answer the door to anyone, put do not disturb up on the handle or just lock it and throw away the key, lets crack open that bottle of whatever and chat about our wacky worlds and best of all we dont get sick from drinking ourselves into oblivion cause in our world we are all cured and, AND we have never heard of the word lupus we dont know anyone who has it, this forum dosent exsist because neither does lupus, the ppl still exsist but we have all grown to know each other thro diff circumstances like........at a theme park yeah, you are a entertainer who meets and greats ppl at the entrance im a barmaid who is also a sucessful film maker and we all meet on the horse thing tht goes round and round, and we make a film about each others lives, hmmmm

sits_inthe_corner
01-01-2009, 04:51 PM
Okay, so I don't want to cough your ear :D cuff it....YAH.

How was your walk?

I'm feeling gross, and tired and rashy lumpy and sore. Completely snow bound at the moment but that's okay cause I don't want to go anywhere anyway.

Hope you're feeling better.

Gentle hugs to ya.

rob
01-01-2009, 11:20 PM
Hi SITC,

I didn't walk. The weather site was wrong. It was in the 40's according to them. It was actually minus 15 today. Right now, it's minus 20. Kinda chilly. Right now the words and grammar are running really slow. it's hard to compose a sentence that makes sense. I'm so tired. I can't sleep more than an hour. I wake up, or I have bad dreams, then wake up. i just want a little sleep. Gonna go try to get some shuteye now.

sits_inthe_corner
01-02-2009, 02:44 AM
Gentle hugs to ya rob.

Sorry you're having trouble sleeping. That seems to be all I want to do right now.

I could sleep all day and all night :?

Hope you had a good nights sleep.

rob
01-02-2009, 04:11 PM
Well, I'm seeing some light at the end of the tunnel. I got out of the house today for a few hours. Went and saw the movie "Valkyrie", and it was excellent. I'm also a WWII history buff, so I found it especially interesting. Then I went and hung out at the hobby shop for awhile. Bought a new R/C plane to work on, as my current plane is almost finished, and there's still alot of winter left in which to build. I build a couple of big projects each winter, and go out for the maiden test flights as soon as spring hits. I've been asked to put on another display and flight demonstration at the local airshow we have here in June of each year, so that gives me something to look forward to. And the months of preparation and practice for that will keep me occupied.

I don't know why I suddenly found myself so depressed. It just came out of nowhere. And I don't know why I woke up this morning feeling as though it was finally letting up. It's like it has a mind of it's own, and I'm just along for the ride. Whatever the reason, I'm just happy to feel human again. Strange stuff. Thank you all again, for all of your words of friendship, and encouragment. I've read every single reply multiple times, and your words have really helped. I hope everyone is having a good evening. Thanks everyone.

Rob

Gisèle
01-02-2009, 05:33 PM
*hugs* to you, Rob. I'm not sure how much this will help, but I try to always remind myself that everything happens for a reason, and ultimately, it all works out in the end. One of my most favorite quotes is "Everything is okay in the end; if it's not okay, then it's not the end."

I know it's hard, but try to remember that things will get better, and you are not in this alone. Try to do something relaxing that you enjoy - watching a movie, going for a nice walk, etc.
I hope you have a better day, Rob.

Edit: I just saw your most recent most, and I am so happy for you! I am glad things are better. =)

karli1238
01-03-2009, 12:39 AM
Glad that you are feeling better Rob!!! Hope it last for a long time.

Danica01
01-03-2009, 01:31 AM
Sometimes I think those nights are the toughest to get through. The pain can be dealt with but when the pain you feel is in your heart, that is a different pain that can not be eased with medicine. I have had someone walk out on me because they couldn't deal with all of it and after many long dark nights....oh, and therapy......I realized that know matter what I am who I am and this is not going to go away and that is something the people in my life will have to deal with :!: I also had to work on my dealing with it :?

I want you to know that I think you are amazing :!: You know so much about everything we are going through and always have a positive thing to say to everyone :) On our long, dark nights you come in holding the lantern so that we can see the light again :wink: I know that I am truely blessed that you are here and in my life. Hopefully, we all can be the lanter for you on those long, dark night :angel:




Tonight, for whatever reason, is an awfully long, and dark night. Once again, I can't sleep. I do everything I can to fill my days with things that I can do. I try to accomplish whatever I am able to on any given day. Some days I'm in the plus column, somedays I break even, and somedays I lose. Today, I guess I was in the losing column.

I don't feel any better, or any worse today. The fog, and the joint pain are as they usually are. Barely tolerable. But today, they remind me of who I used to be, and prevent me from accepting who I am now. For whatever reason, all I can think of is how things used to be. How I had, for one brief moment, the world in the palm of my hand. All those years of school, mixed with dreams that knew no boundaries, were the stuff my life was made of. Add to that mix, a love that I thought would last a lifetime, and you have the makings of a dream come true. For one short moment, I had that, and then it was taken away. I fought to keep it. I fought to keep her, but it wasn't to be.

I tell myself that 364 days a year, I can deal with it. I can get past the thoughts, and broken dreams of what might have been, and get on with my life. Well, I guess today is day 365. The one day I allow myself to think about these things. So many of us have lost so much because of this stupid thing called lupus. I know I'm not the only one who hurts tonight, but I thank you for listening. I hope the morning can bring a better day for all of us.

Rob