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Posted 9/15/2008 5:12 AM (GMT 0)
sad  Having a real problem staying out of that deep dark hole. I know my brain doesn't work the way it use to. I use to have a very sharp memory. Now sometimes I not sure what was real and what may have just been a dream. In talking with my brothers and sisters. I have whole times I have no memory of what happen. I don't like having to depend on others, not being able to take care of things. I do feel all alone. How do you fight the battles of the darkness. I'm on meds for depression but sometimes
Posted 9/15/2008 12:00 PM (GMT 0)
((((( Hippy Rebel )))))) Oh dear!! I'm literally sending you a hug! That is such a tough spot to be in! But you did the first best thing . . . you got it into words!! 1) Talk to the doctor who prescribes your anti-d . . . about upping or changing it. When I took anti-d's (for several years) I had permission to tweak the dose. It was amazing what a tiny bit up or down did for my moral. Sometimes I just added an extra pill every couple days. 2) Remember, the daylight is getting shorter fast. This means that our brains are receiving less seratonin (and other brain chemicals that give us a sense of well being). These brain chemicals also help our brains to properly process information. To get the most out of the short days . . . we need to be up at first light . . . the light can't just be in the room . . . you have to have your eyes open. The shorter days is what causes some animals to hibernate . . . the eat a LOT and they sleep a LOT. 3) Have your thyroid levels checked . . . that could be causing ALL of the things you mentioned . . . and I think you mentioned in an earlier post that you have thyroid issues or you had yours removed. Sending you a flashlight and lots of batteries to light your way sis!! Blessings!
Posted 9/15/2008 4:03 PM (GMT 0)
I'm so sorry your are going through this. I don't have much to add to the great advice Rosie has given you. Please do talk to your doc about what is happening. The doc might also want to refer you for some neurological testing since memory problems are so severe. Hang in there and know that we are here for you.
Posted 9/15/2008 8:04 PM (GMT 0)
I have had periods of time where I was sick and under great stress plus working 3rd shift with preschoolers at home, that I do not remember any part of a vacation we went on. I have pictures, but absolutely no memory of the entire trip. It is very scary when my brain "blips" and I lose all the thoughts that were there a second ago. The Dr.s treated it as add for a while then checked me for epilepsy, but saw no problems in the EEG.

I journal now. I try to write every week, but is you are having daily issues, just jot something down. it gives you some solid ground to hold onto.

I wish you the best.

Marie
Posted 9/16/2008 12:36 PM (GMT 0)
I journal now. I try to write every week, but is you are having daily issues, just jot something down. it gives you some solid ground to hold onto.

ever since I read that thing in Lupus resources, telling us to keep a log of our symptoms, I have done this.  evey day I write down what I am feeing that day.  and now I will add what I am thinking, how I feel emotionally an intellectually.

I just assumed the sleeplessness was part of my depression.  all this time, years, I have believed this to be true.  It is good to know that it isn't.  easier to accept for me.  there is always that chance that Lupus will go into remission, and maybe this part of my being would be gone too.  and maybe it won't go into remission, and I will stay the same as I am now.  but even that is easier to accept than it all being in my head.

The deep dark hole for me comes after the period of being unable to sleep.  And at those times, I just tell myself to hold on for one more minute, one more day, that the dark hole will not last forever, it will go away, and when it does I will be able to think well again, even though I won't be able to sleep.

Hester

Posted 9/17/2008 12:25 AM (GMT 0)
I've never been one to write things down, especially my feelings. This is a little different here, you all don't really know who I am. so I feel a little safer saying things here, that I can't say in the real world. But there are things I think about while in that dark hole that I can't bring myself to even say here. Years ago when I was very young I tried more than once to end the pain I felt. But GOd or something else keeped it from ending. Once I got really sick and threw everything up for a couple of days and the other time someone found me and my stomack got pumped out. But then I had a long hard look at who would take care of my son if I wasn't around, and there was no one that I could trust so I had to get out of that hole to raise him. But he is grown and lives out on the west coast.
Posted 9/17/2008 10:31 AM (GMT 0)
But there are things I think about while in that dark hole that I can't bring myself to even say here.

Old hippie rebel,

Maybe some day you can allow yourself the relief of getting those thoughts in the open.  setting them free to fly away.  and maybe you won't.  One thing I have noticed about this group in the short amount of time that I  have been here, is thier openness.  It gave me more courage to be open more myself, which has always been hard for me to do.  I was under the impression that my thoughts about myself needed to hidden not shared with anyone.

Time to lay back down.  thank you for sharing all that you have old hippie rebel.  I really do like your name yeah

Hester

Posted 9/17/2008 2:45 PM (GMT 0)
Hippi Rebel,

That deep dark hole you describe sounds like something serious enough that I hope you will consider seeing a specialist who could help you with something more than an antidepressant. What you describe sounds so painful and solitary and my heart really goes out to you. You shouldn't try to handle this alone. Would it be possible for you to print off this page and hand it to your doctor for him to read? I understand how hard it can be to talk to a doctor about personal feelings but perhaps your doctor doesn't understand how dark your darkest days really get. Does he know that you've tried to hurt yourself? I pray that you can get some help Hippi Rebel. Thank you for sharing this with us.

We're here for you and we care.

(((((Hugs)))))

Pat
Posted 9/18/2008 3:46 AM (GMT 0)
Thank you all for the support. I can't tell you all how much it means to me. Some of the folks that I have talked to in the past are having their own problems now and I just can't add any more crap to their own problems.

I haven't had time to be on here like I would like but I'll try and get here more often. Very busy week 3 Dr. appointments. I hate it, But I don't want any more drugs, I want to try and come off of them. Every thing. But I know I can't right now but I can hope, can't I.

Hester, thanks so much for the kind words about the name, I thought it said who I'm really am. I'm an old hippy and I was a bit of a rebel. There for oldhippyrebel seemed to be the only thing to go by.
Posted 9/18/2008 4:37 PM (GMT 0)

you are welcome old hippie rebel;) 

I do not know if I could even get online at all if I saw 3 doctors in the same week.  I have a problem just seeing one doctor, and getting his lab work done.  so I have scheduled thier appointments to fit my schedule.  Financially I cannot afford but one doctor and one lab work to do each month.  can't afford the gas for several trips to where the doctors and labs are in the same month.  So far this has worked out.

I tend to be a rebel too, a nonconformist that started in my early teens.  I didn't have the opportunity to be a hippie.  too busy having babies and figuring out how to provide for them.  But I listened to them.  Felt good too.  because they reflected my own position at the time.

Hester

Posted 9/18/2008 5:55 PM (GMT 0)
Hello Hippi Rebel: I had a parital hysterectomy 4 yrs. ago and it thew me in deep depression alot of pain with and a great deal of flares. I to couldn't remember any thing, all I did was cry.That deep dark hole is where I think I was.. one night I was out side don't even remember going out but my neighbor ask what I was doing out so late it was 1:00 in the morning I don't know where I was going or doing, he walk me back home my husband was asleep and didn't even know I was gone they kept a close watch on me after that, it went on for months. I also think I had mixed emotions about my life and what was going to happen next. Well here I am talking about this and never told anybody but my doc. I went on anti d and still on it. There is a way out and people who care so don't give up go to your doc. and let him know you need help. There is treatment out there for you. many hugs.
Debbie
Posted 9/18/2008 8:35 PM (GMT 0)

Hey Debbie,

I too have hesitated to tell some people about my own diagnoses and at the moment I am questioning it.  The missing time that some of you have, just like me, and doing things that you do not remember doing, leads me to believe that maybe I was misdiagnosed.  But maybe not.  And I guess that it does not matter anyway.  What matters to me is that I am not the only one that is having these same kind of symptoms.

The deep dark holes for me are the bad days when I can sleep, but can't think clearly, forget things, do things and don't remember doing them, can't speak well.  and it seems the cycle is not as dependable as it used to be.  the good days do not last long now.  In the good days, I feel lots of shame and guilt, and there is nothing to be ashamed of.  In the bad days I do not feel much of anything.  The bad days do however have suicidal thoughts.  and a plan.  It just seems too much to bear sometimes during the bad days.  And I tend to tell myself, just one more day, hold on for one more day.  It doesn't last.  It never does.  It will change.  However it is changing to include more bad days than really good days.  Asked my doctor one time to give me lithium and let me see if it is bi-polar that is making me the way I am.  It wasn't.

Sometimes I just get so tired of being me.

thank you for sharing

Hester

Posted 9/18/2008 10:45 PM (GMT 0)
HIppiRebel,

 

I'm so sorry you're in this dark place.  I've been there too.  Not too long ago.  With everthing we deal with every day it's so easy to fall into that place. You're not alone sweetie.  My mom said something to me last week.  She said, " What doesn't kill ya, makes you stronger".  I agree with that, but it doesn't make dealing with this any easier! 

 

Do you have a strong support network at home and in the community?  I found it very helpful to attend some of the local lupus foundation support meetings.  Got to meet other men and women with the same issues. 

 

We're always here for you. 

 

Ginny

Posted 9/19/2008 12:06 AM (GMT 0)
sharky456 said... This is probably my biggest complaint with prednisone- ie feeling like I have pms times 8 million and blowing up at everything. Please make sure you take stock of your moods and I have become suicidal for no apparent reason on a dose of 15mg. What has worked for me is lexapro. Thanks to work done by OBGYNs re: antidepressants and pms/mood disturbances etc, it has been found that you can take antidepressants for a short period of time and they can help stabilize your moods. For me, if I am on a higher dose of prednisone I am given sample packs of lexapro and I increase my dose for 5 or so days and usually that is enough to level me out. Best of luck! sharky Hey Old Hippy, Sharky posted this in another topic . . and I think it was meant for you. Just wanted to make sure you saw it, as she has a REALLY good point. I hope you have to your doctor. Keep us posted!!! Blessings!
Posted 9/19/2008 1:28 PM (GMT 0)

oldhippyrebel said...
sad  Having a real problem staying out of that deep dark hole. I know my brain doesn't work the way it use to. I use to have a very sharp memory. Now sometimes I not sure what was real and what may have just been a dream. In talking with my brothers and sisters. I have whole times I have no memory of what happen. I don't like having to depend on others, not being able to take care of things. I do feel all alone. How do you fight the battles of the darkness. I'm on meds for depression but sometimes

I learned how to quote yeah a post now using copy and paste.  i can do it like the rest of you do it.
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