I just stumbled on this thread and, Ann, your post was so much like I've felt for so long. The past that really got me was your DH taking a picture of you sleeping--how you used to smile in your sleep but now you look miserable. It made me want to cry.
I used to love to dream--you know, the kind of dreams that took you places you couldn't go in your wide awake world. I had such fantastic dreams, my husband would ask me first thing in the morning, "Where'd we go last night?" My dreams were so real that there were times I actually thought whatever I dreamed about had happened.
Now--well, if I dream at all, it seems to be a dream filled with anger, or I dream I'm in pain--something like that. I have an occasional "good dream", but, for the most part, they aren't good.
And, although I get a lot of these kind of statements or questions from people: "Do you feel all right?" "Are you mad at me?" "You look so tired."
Ann, I was always the optimistic person in the room. I loved life and loved to laugh. I was so excited about everything--I even got excited when I got a new haircut, for Pete's sake!
Now, I don't sleep. No matter what, I just don't sleep. Not good enough, anyway. And, I can see little pieces of my life chipping away. One thing after another keeps cropping up with me. I know some of it is because i don't sleep. I just know it.
I don't know what we can do about it. I don't know what I can do about it. I muddle through life--just got home from the show and, once again, I slept through the whole thing. First, my legs went crazy, then I fell asleep. I can't tell you the last time I paid $ for a ticket to the movies and actually saw the movie.
Things can always be worse. The could be worse for most of us. But, let's face it--RLS is sucks the life out of you--bit, by bit, by bit. I don't know how much life I have.
Jan
Laughing
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ViewsAskew
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what a great experience you had with your dreams! I've never remembered them like that. But, like you, they have changed. I wonder if that is common? Mine have changed too - they are not fun....
I wish everyone would take the, "You look tired," comments and stuff them! Ok, if it's someone I don't know, fine. But my family?????? Like, DUH - yes I look tired. Worse, I feel tired. Constantly.
What you wrote about sleeping and not knowing what to do is what scares me the most. Like Lynne's thread about going to the doctor, I don't ever tell my doctor that I'm not sleeping well. I went through the worst time in my life to simply get medication that keeps the RLS at bay. And, don't get me wrong, it is great that I did find something that would stop the 24/7 RLS. I am grateful beyond anything.
I don't know what's interfering with your sleeping or why I'm exhausted after I did sleep for ten hours (I have my guesses about mine), but who is going to find out for either of us? What will we have to go through to find someone and what will we have to go through to get to any decisions? Who will we have to convince to listen to us, that this isn't normal, that it IS important?
And, even if we convince someone, what options are there? I've been through at least two drugs in every class used for RLS, and in two classes, I've been through 4 and 5 drugs respectively. Um....I guess I'll just stay tired.
All the while, as you said, it chips away at you. For me, it leaves me feeling as if I'm stuck. Completely stuck. Can't move forward, backward, sideways....
I watched my grandmother go through this. For 60 years, she had pretty severe RLS. It wasn't until she was 75 that there was any treatment for her that did anything. I watched her in the 30 years before this, night after night, trying to deal with it, staying up until 3, 4, 5 AM....gettting up in the morning to do what she needed, such as cook breakfast for my grandfather.
And, she did it. She never had relief, but she always managed. I think that is what is even harder about this, this ability to just keep going. We think we just can't take it....but soon it's a few years later and we managed. I don't know how, but we always manage.
I don't know if this ability to manage is good or not. It keeps us all alive....but without joy in our hearts or in our lives.
I wish everyone would take the, "You look tired," comments and stuff them! Ok, if it's someone I don't know, fine. But my family?????? Like, DUH - yes I look tired. Worse, I feel tired. Constantly.
What you wrote about sleeping and not knowing what to do is what scares me the most. Like Lynne's thread about going to the doctor, I don't ever tell my doctor that I'm not sleeping well. I went through the worst time in my life to simply get medication that keeps the RLS at bay. And, don't get me wrong, it is great that I did find something that would stop the 24/7 RLS. I am grateful beyond anything.
I don't know what's interfering with your sleeping or why I'm exhausted after I did sleep for ten hours (I have my guesses about mine), but who is going to find out for either of us? What will we have to go through to find someone and what will we have to go through to get to any decisions? Who will we have to convince to listen to us, that this isn't normal, that it IS important?
And, even if we convince someone, what options are there? I've been through at least two drugs in every class used for RLS, and in two classes, I've been through 4 and 5 drugs respectively. Um....I guess I'll just stay tired.
All the while, as you said, it chips away at you. For me, it leaves me feeling as if I'm stuck. Completely stuck. Can't move forward, backward, sideways....
I watched my grandmother go through this. For 60 years, she had pretty severe RLS. It wasn't until she was 75 that there was any treatment for her that did anything. I watched her in the 30 years before this, night after night, trying to deal with it, staying up until 3, 4, 5 AM....gettting up in the morning to do what she needed, such as cook breakfast for my grandfather.
And, she did it. She never had relief, but she always managed. I think that is what is even harder about this, this ability to just keep going. We think we just can't take it....but soon it's a few years later and we managed. I don't know how, but we always manage.
I don't know if this ability to manage is good or not. It keeps us all alive....but without joy in our hearts or in our lives.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
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Polar Bear
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This thing about 'just keeping going no matter what'. I wonder is this a 'woman' thing.
I find this is me, all the time, I was poorly about 5 weeks ago (not rls) then had vertigo for about 3 weeks, now a bad head cold but not like I've ever had before, I am totally shattered and not sleeping good. To top it all I now have some red itchy lumps on one leg and one arm. Don't know if its hives, or bites?? or a rash. But its like... well none of this is major, but it is debilitating on top of rls. I haven't taken time off work, and I have continued at home to do all that I normally do.
I ask myself WHY ??? Everyone else lies down when they have ahead cold... Is it cos we don't want to look weak??? (of course its difficult for us to lie down with rls !!!) Then we get resentful and feel sorry for ourselves.
What I mean is, in my case, hubby is not pushing me looking for meals, etc. etc. not seeking clean shirt.....He can do this perfectly well himself. So what is it that makes us not take a step back, why do we work on through feeling poorly.
Is it a woman thing, or is it a personality trait where we don't want to give up control ????
Betty
I find this is me, all the time, I was poorly about 5 weeks ago (not rls) then had vertigo for about 3 weeks, now a bad head cold but not like I've ever had before, I am totally shattered and not sleeping good. To top it all I now have some red itchy lumps on one leg and one arm. Don't know if its hives, or bites?? or a rash. But its like... well none of this is major, but it is debilitating on top of rls. I haven't taken time off work, and I have continued at home to do all that I normally do.
I ask myself WHY ??? Everyone else lies down when they have ahead cold... Is it cos we don't want to look weak??? (of course its difficult for us to lie down with rls !!!) Then we get resentful and feel sorry for ourselves.
What I mean is, in my case, hubby is not pushing me looking for meals, etc. etc. not seeking clean shirt.....He can do this perfectly well himself. So what is it that makes us not take a step back, why do we work on through feeling poorly.
Is it a woman thing, or is it a personality trait where we don't want to give up control ????
Betty
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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Betty
You raise a good point. You said:
I think it is a woman thing. But, I think our families expect us to keep going, as well--probably because we always seem to be able to.
However, I will say this. Since my back surgery, I have had to learn to let go of a lot of that control. It was very difficult, but because I couldn't physically do things I used to do. And when I was fully recuperated, I was told by my surgeon not to do some of those things. So, I have had to learn to let others do them--even if they don't do them "the right way" or as quickly as I would. That was one of the hardest things I've ever done in my life.
I recently went back to work after being retired for 5 years. I'm telling you, I just get absolutely worn to a frazzle! As a result, my house suffers. This weekend, my husband and I cleaned house thoroughly and it looks great. I can't believe I let it get like I do now--that was not me at all. But, again, I've had to let go of some of that control.
So, yes, I think it is a woman thing. But, I think many of our families enable us. And, you are right. We go and go and go, then get resentful and do start feeling sorry for ourselves.
Silly, isn't it?
Jan
You raise a good point. You said:
What I mean is, in my case, hubby is not pushing me looking for meals, etc. etc. not seeking clean shirt.....He can do this perfectly well himself. So what is it that makes us not take a step back, why do we work on through feeling poorly.
Is it a woman thing, or is it a personality trait where we don't want to give up control ????
I think it is a woman thing. But, I think our families expect us to keep going, as well--probably because we always seem to be able to.
However, I will say this. Since my back surgery, I have had to learn to let go of a lot of that control. It was very difficult, but because I couldn't physically do things I used to do. And when I was fully recuperated, I was told by my surgeon not to do some of those things. So, I have had to learn to let others do them--even if they don't do them "the right way" or as quickly as I would. That was one of the hardest things I've ever done in my life.
I recently went back to work after being retired for 5 years. I'm telling you, I just get absolutely worn to a frazzle! As a result, my house suffers. This weekend, my husband and I cleaned house thoroughly and it looks great. I can't believe I let it get like I do now--that was not me at all. But, again, I've had to let go of some of that control.
So, yes, I think it is a woman thing. But, I think many of our families enable us. And, you are right. We go and go and go, then get resentful and do start feeling sorry for ourselves.
Silly, isn't it?
Jan
No one is alone who had friends.
Some heart-breaking posts, thank you all for sharing. Ann, you are the expert so little hos will still offer something though. You think there's some old meds that stopped working in the past could be taken again? Maybe the last time you tried them they started you on a dose that was too high or the starting dose was too low, etc.
I went back on Mirapex after being off of it for a few years. I joked with my dr that it wouldn't work, but it did.
Jan and Betty, Yes, women (generally speaking) do have too high of expectations and a phrase around my house is being a "martyr mom." I think it is built into most women that they have the duty to go on no matter what.
Men? I confess if I have a fever I might as well be non-existent to the world.
I'm happy to hear that you are giving up on some of the daily duties when you need to, you are worth it and it shouldn't effect how anyone sees you, or most importantly, how you see yourself.
I went back on Mirapex after being off of it for a few years. I joked with my dr that it wouldn't work, but it did.
Jan and Betty, Yes, women (generally speaking) do have too high of expectations and a phrase around my house is being a "martyr mom." I think it is built into most women that they have the duty to go on no matter what.
Men? I confess if I have a fever I might as well be non-existent to the world.
I'm happy to hear that you are giving up on some of the daily duties when you need to, you are worth it and it shouldn't effect how anyone sees you, or most importantly, how you see yourself.Dear Jan, Your post nearly broke my heart and left me spechless(imagine that) Never have I read any of your posts that sounded so hopeless at the end. I read it about 2or3am who knows the time anymore.
I so clearly remember years ago my husband and daughters told me they could not feel comfortable in their own home because I had to have everything just right.....................well I stopped it right there and then.
I wanted to post you when I first read it but I have to say I was feeling hopeless and my heart was so heavy I could not even figure out what I was doing here on earth. This rls monster is life stealing without a doubt.
I know for me I lost my family because of it, I self medicated with drugs and alcohol and lost it all. I got an email yestreday and photos of my daughter Breeze she will be having the twins within the next 10 days. She is huge. Another life changing moment that I will not be a part of or not even wanted there. I will be lucky to get a call even when they are born until someone thinks to do so.
I know I have myself to blame for the choices I made, but the pain of those choices never leaves me NEVER!!! My heart hurts worse than my rls or they are two in the same I dont know anymore. My husband use to take such good care of me and now it is up to me to do everything. It doesnt matter how sick or how bad I am hurting if I dont take care of it no one will.
I pray to GOD all the time to take a little of the heartache away and it works for a while. Do I want to give up?? OHH yeah......ALL THE TIME. But I cant not until my time comes and then I will go gratefully. That is one of the reasons I work so hard is so I dont have time to think what if..........and how am I ever going to be someone that someone else might want to be with when I am falling apart here?
So to you all I hear your pain and I feel it too.. But for those of you who have someone who loves you enough to stick around and live this way and run you a hot bath or go to pick up your meds ect.........you really dont know how lucky you are. Even at the bad times, you go through them together trust me there is nothing worse than dealing with rls alone.
I have a couple of good friends here that are close enough I can call for help if I get too bad but they have no idea, and it is very uncomfortable for me and them. My meds have been working(somewhat) for me for some time now and I too will not say anything other than that to my doc. He ask me how I am and I put one of those fake smiles on and say I am fine..........because once I start complaining he starts changing my meds and I cant do that right now. I hurt and I cant stay on my ladder like I could last summer and I am getting new pains all the time but I am not getting any longer either and I am beginning to believe that most of my pain comes from my heart.
So for me my only option that I can see right now is to trudge on day after day, slower with each day and more hopeless with each hour. That is why this board is so important to me, I read your posts and it takes me out of myself and my worries for a while. I would be totally alone without all of you. You are my family and I love you and feel your pain and dispair with every post I read. But it also gives me the strengh to carry on and do what I need to do.
But when one of you hits that dark place it scares me to death because if you go there I go with you. And I am getting tired and wearing out, I am having a hard time keeping up with it all. My body wont let me. But my faith is strong, my faith comes from GOD and all of you and reminds me that I am not alone in this, and as tough as it is I am tougher. I have been through so much pain in my life that it is my life. I would not know any other way.
So if you all will hang in there so will I. With each other we are powerful alone we are weak. Around every corner there is something good we just have to not forget to look for it.............Thanks for reading this and I am thinking of you all and wishing your day finds some beauty in it. I am looking hard to find some here GOD BLESS~~~~~~Lyndarae
I so clearly remember years ago my husband and daughters told me they could not feel comfortable in their own home because I had to have everything just right.....................well I stopped it right there and then.
I wanted to post you when I first read it but I have to say I was feeling hopeless and my heart was so heavy I could not even figure out what I was doing here on earth. This rls monster is life stealing without a doubt.
I know for me I lost my family because of it, I self medicated with drugs and alcohol and lost it all. I got an email yestreday and photos of my daughter Breeze she will be having the twins within the next 10 days. She is huge. Another life changing moment that I will not be a part of or not even wanted there. I will be lucky to get a call even when they are born until someone thinks to do so.
I know I have myself to blame for the choices I made, but the pain of those choices never leaves me NEVER!!! My heart hurts worse than my rls or they are two in the same I dont know anymore. My husband use to take such good care of me and now it is up to me to do everything. It doesnt matter how sick or how bad I am hurting if I dont take care of it no one will.
I pray to GOD all the time to take a little of the heartache away and it works for a while. Do I want to give up?? OHH yeah......ALL THE TIME. But I cant not until my time comes and then I will go gratefully. That is one of the reasons I work so hard is so I dont have time to think what if..........and how am I ever going to be someone that someone else might want to be with when I am falling apart here?
So to you all I hear your pain and I feel it too.. But for those of you who have someone who loves you enough to stick around and live this way and run you a hot bath or go to pick up your meds ect.........you really dont know how lucky you are. Even at the bad times, you go through them together trust me there is nothing worse than dealing with rls alone.
I have a couple of good friends here that are close enough I can call for help if I get too bad but they have no idea, and it is very uncomfortable for me and them. My meds have been working(somewhat) for me for some time now and I too will not say anything other than that to my doc. He ask me how I am and I put one of those fake smiles on and say I am fine..........because once I start complaining he starts changing my meds and I cant do that right now. I hurt and I cant stay on my ladder like I could last summer and I am getting new pains all the time but I am not getting any longer either and I am beginning to believe that most of my pain comes from my heart.
So for me my only option that I can see right now is to trudge on day after day, slower with each day and more hopeless with each hour. That is why this board is so important to me, I read your posts and it takes me out of myself and my worries for a while. I would be totally alone without all of you. You are my family and I love you and feel your pain and dispair with every post I read. But it also gives me the strengh to carry on and do what I need to do.
But when one of you hits that dark place it scares me to death because if you go there I go with you. And I am getting tired and wearing out, I am having a hard time keeping up with it all. My body wont let me. But my faith is strong, my faith comes from GOD and all of you and reminds me that I am not alone in this, and as tough as it is I am tougher. I have been through so much pain in my life that it is my life. I would not know any other way.
So if you all will hang in there so will I. With each other we are powerful alone we are weak. Around every corner there is something good we just have to not forget to look for it.............Thanks for reading this and I am thinking of you all and wishing your day finds some beauty in it. I am looking hard to find some here GOD BLESS~~~~~~Lyndarae
You cant be brave if you have only had wonderful things happen to you
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Polar Bear
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Lynne.. Your post makes me very thankful for what I have.
Hubby made breakfast this morning and even stuck a carnation bloom in a little glass ...
Hos... Mmmmm 'martyr mom' !!
No one has ever said or even hinted at this but to myself it rings a bell.
Thanks folks. Betty
Hubby made breakfast this morning and even stuck a carnation bloom in a little glass ...
Hos... Mmmmm 'martyr mom' !!
No one has ever said or even hinted at this but to myself it rings a bell.
Thanks folks. Betty
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
Yes I can relate to what everyone is saying. Jan I agree with Lyndarae it nearly broke my heart reading your post and hope that you are doing much better.
Lyndarae I am so sorry for what you had to go through in the beginning and hope that things do get better for you.
As far as sleep, I have to say it does suck and I do not really like that word but that is the best that I can come up with. I do go to sleep right away but then I wake up about every 1 - 2 hrs and for the last couple of months I have been waking up at 4 am and may go back to sleep and may not. I feel like I am between a rock and a hard place.
I know when I see my neurologist he always ask if I am sleeping better and I will not tell him what he wants to hear as I know he will just try giving me a sleeping pill and I do not want that. It has been years since I have slept through the night. I always said if I slept for five(5) straight hours, I feel like I died and went to heaven LOL.
I also have the weirdest dreams and alot of times they are nightmares and I never had as bad as dreams as I do now I know that it is the meds but without them my rls would be raging 24/7 and I have had that before and do not want that back.
I want to keep this thread going as I feel it is so important.
Just a reminder for Chat Night
We will be chatting tomorrow night at 6pm az. time which will make it either 8 or 9pm your time depending where you live in the states.
Lyndarae I am so sorry for what you had to go through in the beginning and hope that things do get better for you.
As far as sleep, I have to say it does suck and I do not really like that word but that is the best that I can come up with. I do go to sleep right away but then I wake up about every 1 - 2 hrs and for the last couple of months I have been waking up at 4 am and may go back to sleep and may not. I feel like I am between a rock and a hard place.
I know when I see my neurologist he always ask if I am sleeping better and I will not tell him what he wants to hear as I know he will just try giving me a sleeping pill and I do not want that. It has been years since I have slept through the night. I always said if I slept for five(5) straight hours, I feel like I died and went to heaven LOL.
I also have the weirdest dreams and alot of times they are nightmares and I never had as bad as dreams as I do now I know that it is the meds but without them my rls would be raging 24/7 and I have had that before and do not want that back.
I want to keep this thread going as I feel it is so important.
Just a reminder for Chat Night
We will be chatting tomorrow night at 6pm az. time which will make it either 8 or 9pm your time depending where you live in the states.
Charlene
Taking one day at a time
Taking one day at a time
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Polar Bear
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I know what you mean. 5 hours straight sleep is unheard of.... what bliss that would be.
Betty
Betty
Betty
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ViewsAskew
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Hos wrote:Ann, you are the expert so little hos will still offer something though. You think there's some old meds that stopped working in the past could be taken again? Maybe the last time you tried them they started you on a dose that was too high or the starting dose was too low, etc.
I certainly am not the expert any more than any of you. I've always thought (hoped) that what you said would work, though was doubtful. A few months back, I cycled through some of the drugs that did work initially - I had augmentation just about immediately again, so the DAs are not going to work for me. Oh, they work in the sense of resolving the PLMs, but they cause instant side effects that make the RLS worse.
But, it's not so much about whether they will or won't. It's the road you have to take to get there. Even the last few months when I've been doing little experients - it's more tiring than when you just feel tired. Because it saps you of any hope. Each time something doesn't work, you feel more hopeless.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
OH, guys.... I'm so sorry if I sounded like "poor me." I KNOW how lucky I am, Lyndarae. And, I do think of you often, sweetie. I have a husband who helps a lot around here. I have friends who really seem to understand (a few do, anyway). I'm way ahead of the game in that respect.
I guess what I'm referring to (for the most part) are the people who don't understand--the "I'm there when the sun shines" friends. We all have them, don't we?
And, I'm also talking about sleep deprivation and the damage it does to your body. I truly believe that some of what I've been diagnosed with is a result (or has been expedited by) lack of sleep.
I know there are many people (some right here on the forum) who have it WAY worse than I do as far as medical conditions go. However, it seems like I can't go even a few months without another "condition" cropping up. It just seems like it's one thing after another. And, my friends, I 'm just tired.
I'm tired of having another thing to worry about, to watch, to wonder about. As I said, it could be worse--far worse. And, I'm grateful it isn't. I guess I'm just venting. As I said, I'm just tired. I look back on my life and wish I had appreciated what I had more. I'm not saying I didn't appreciate it, but I didn't stop to think about things. I just lived a busy, full to to hilt, lifestyle. I have even said this to Lynne (and probably to some of the rest of you)...I wish I had enjoyed cleaning house the way I used to. I can't do that anymore. I wish I could run again or do aerobics. I wish I could swim or just reach around for something without thinking "Oh, I can't do that.'
I wish I could eat a piece of pecan pie or a handful of popcorn without fear of having a severe attack of diverticulitis (or a tomato or a pickle). I wish I could dream one of my goofy dreams again.
BUT, I can WALK! If I hadn't had back surgery, I would be paralyzed by now. I can do a lot of things.
Lyndarae, I am so sorry, SO SORRY, that you miss out on so much. Your heart is so huge, your daughters and your grandchildren are missing out on so much. I wish life wasn't so hard for you and I wish you didn't have to spend time alone.
I am just being silly today. That's all--just plain silly. All of the things I've listed are just silly. Have a good laugh over it! LOL I'm fine and very, very grateful, even though I don't sound like it. Like I said, I think it's just one of those days.
Jan
I guess what I'm referring to (for the most part) are the people who don't understand--the "I'm there when the sun shines" friends. We all have them, don't we?
And, I'm also talking about sleep deprivation and the damage it does to your body. I truly believe that some of what I've been diagnosed with is a result (or has been expedited by) lack of sleep.
I know there are many people (some right here on the forum) who have it WAY worse than I do as far as medical conditions go. However, it seems like I can't go even a few months without another "condition" cropping up. It just seems like it's one thing after another. And, my friends, I 'm just tired.
I'm tired of having another thing to worry about, to watch, to wonder about. As I said, it could be worse--far worse. And, I'm grateful it isn't. I guess I'm just venting. As I said, I'm just tired. I look back on my life and wish I had appreciated what I had more. I'm not saying I didn't appreciate it, but I didn't stop to think about things. I just lived a busy, full to to hilt, lifestyle. I have even said this to Lynne (and probably to some of the rest of you)...I wish I had enjoyed cleaning house the way I used to. I can't do that anymore. I wish I could run again or do aerobics. I wish I could swim or just reach around for something without thinking "Oh, I can't do that.'
I wish I could eat a piece of pecan pie or a handful of popcorn without fear of having a severe attack of diverticulitis (or a tomato or a pickle). I wish I could dream one of my goofy dreams again.
BUT, I can WALK! If I hadn't had back surgery, I would be paralyzed by now. I can do a lot of things.
Lyndarae, I am so sorry, SO SORRY, that you miss out on so much. Your heart is so huge, your daughters and your grandchildren are missing out on so much. I wish life wasn't so hard for you and I wish you didn't have to spend time alone.
I am just being silly today. That's all--just plain silly. All of the things I've listed are just silly. Have a good laugh over it! LOL I'm fine and very, very grateful, even though I don't sound like it. Like I said, I think it's just one of those days.
Jan
No one is alone who had friends.
Oh Jan nothing that you said is being silly. You are saying exactly how you feel and that in itself is very important. We are here for each other and always will be.
I so agree what you said to Lyndarae that her daughters and grandchildren are missing out so much.
Jan I am so glad that you stumbled across this post.
Ann, Betty,Lyndarae and Hos thank you for your posts to as I gather from what Jan said that Ann started this thread awhile ago. I hope it keeps going.
Everyone have a wonderful day.
I so agree what you said to Lyndarae that her daughters and grandchildren are missing out so much.
Jan I am so glad that you stumbled across this post.
Ann, Betty,Lyndarae and Hos thank you for your posts to as I gather from what Jan said that Ann started this thread awhile ago. I hope it keeps going.
Everyone have a wonderful day.
Charlene
Taking one day at a time
Taking one day at a time
Yeah Jan, I love you no matter what ,and your feelings are very real and understood by me, I just hate to hear it out loud you know we are all so good at being fine, as women we are always fine...... something we are taught I guess. But I agree with you totally about lack of sleep and dreams, dang I use to be able to fly any kind of aircraft and land it on a dime hahahahah loved it. NOW well I had a nightmare the other day about my mom and it might not have been a nightmare at all I think it might have actually happened.........
I am so darn happy to see your posts (any posts) I love you and there is a connection there and when i see your name I just feel safe. So laugh, cry, vent .... this is a good thread and I am glad you brought it back up, I am actually painting my livingroom today........its called honeycomb and Im thinking I like it~~~~~~~~~Lyndarae
I am so darn happy to see your posts (any posts) I love you and there is a connection there and when i see your name I just feel safe. So laugh, cry, vent .... this is a good thread and I am glad you brought it back up, I am actually painting my livingroom today........its called honeycomb and Im thinking I like it~~~~~~~~~Lyndarae
You cant be brave if you have only had wonderful things happen to you
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SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
Wow, it is heartbreaking to read about how difficult life is for so many of you! I'm going to go and light candles for each of you who is having a rough time. A candle for Ann, Jan, Lynne, Lyndarae... (Am I missing anyone?) And say a prayer for a little bit of light in the darkness, and that you all start feeling a bit better soon.
Susan
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Susan, that is a comforting, kind thing to do. When you know someone is doing something like that just for you, it really does help. I have read all these posts and it is really scary how life can change and change you without you hardly noticing. Then one day you realize that something is missing, you don't feel the way you used to, you don't have the friends you used to, you can't do what you used to. I'm like Jan, I used to dream such wonderful dreams, the kind where you just don't want to wake up because you can't wait to see what will happen next. No more.
For the first time in my life, I honestly had a fleeting thought of suicide the other night. Not really even that, just a thought of "I want to be released from all of this", Thankfully it was extremely short-lived and not even really considered so don't get all upset! I have too much to live for, too many things I still want to do and places to go. So many friends here that help me through it all.
I think so much importance is attached to research and medicine that the general day-to-day suffering of RLS patients is forgotten. We need that research but we also need help with coping with RLS. If it wasn't for the discussion board and chat room, where would we really be? There aren't many other places to find support. It's an area that needs attention and I plan to bring it up at the next BOD meeting in April. Anyway, that's the plan. Does it sound feasible to all of you?
For the first time in my life, I honestly had a fleeting thought of suicide the other night. Not really even that, just a thought of "I want to be released from all of this", Thankfully it was extremely short-lived and not even really considered so don't get all upset! I have too much to live for, too many things I still want to do and places to go. So many friends here that help me through it all.
I think so much importance is attached to research and medicine that the general day-to-day suffering of RLS patients is forgotten. We need that research but we also need help with coping with RLS. If it wasn't for the discussion board and chat room, where would we really be? There aren't many other places to find support. It's an area that needs attention and I plan to bring it up at the next BOD meeting in April. Anyway, that's the plan. Does it sound feasible to all of you?
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)