You know, folks, we've been filling out forms, which I've been all for. I think they are a wonderful idea and I really hope they do some good!!! I've filled out my questionnaire to the best of my ability and I think Jumpy, Nadia, and everyone else has done an exemplory job in getting all that magnitude of work completed!! Now, I think they are working on another one, and I'm all for that, too!! And, I've written my own Lifestyle Change for Becat, which, although not as dramatic as other's were, I'm sure, was quite meaningful for me. But, I've been doing some thinking. I've been going through some tough times. All of us do, now and then. Life ISN'T a bowl of cherries, is it? But, how much easier would those tough times be if I could only get some sleep--some rest--not be in pain? I know there are people who are much worse off than me. I have a friend who is fond of telling me about people who have leukemia, or whose children just died in car accidents, or who have people who have lost limbs--like that's supposed to make me feel better. I'm sorry, it doesn't take my pain away! I feel for those people, but I still have pain, I still don't sleep, I still don't get rest--I still fall asleep at the wheel, can't cope with life like I used to be able to, can't make the simplest decisions, forget to lock the door at night, hear my husband constantly "remind" me that I've forgotten to do something as if I were a six year old, can't walk up the stairs in the morning without having to hold onto the rail. And, most of all, can't cope with a traumatic incident in my life without completely falling apart where before, I would have held my head up high and been the strong one in my family. I wasn't a weak person--now I am. I was the glue that held the family together--now I NEED support and sometimes I don't get the support I need because everyone is used to ME being the giver, not the taker. I've had to listen to my husband tell me that I'm not the housekeeper I used to be. That hurts!! I don't FEEL AS GOOD as I used to. My house used to be immaculate. It isn't anymore. I look at a pile of clothes in the laundry room and I can't decide which load to do first. I have lost ME. I'm sorry (I tend to say that a lot now)--I just had to get this out. I know I've "vented" before, but this seems to be one of the few places left to me anymore. My "friends" don't want to hear me, my children aren't as understanding anymore because I'm not the same mom and my husband is going through his own thing. I've got my dog, but he doesn't talk back. Ha! RLS has completely changed my life and it is changing rapidly--like a big snowball going down the side of a mountain. Not to mention the problem in my own family. I'll continue to be a "greeter" on this forum. I seem to be a little bit good at that. I've taken so much, I try to pass it on. I just had to get this out today. Thanks.
Jan
SICK AND TIRED-LIFESTYLE CHANGE? UNDERSTATEMENT!!!
SICK AND TIRED-LIFESTYLE CHANGE? UNDERSTATEMENT!!!
No one is alone who had friends.
Nope, won't ignore it.
Jan,
You have every right to be sick and tired of this crap, and if you can't let it out here, where can you? Please don't be embarrassed, you're with friends who understand.
Our lives, our personalities are dramatically changed when we lack sleep and/or are in chronic pain. We can't handle the stuff we used to, we go into survival mode where having a clean house is pretty damn low on the list of important things to deal with when we just need to get through the day.
I watched my personality change horribly when I was sleep deprived for 6 weeks; my partner was/is thankfully understanding, yet baffled at this disease.
I'm so sorry you're struggling, and I wish I could offer more than a sympathetic ear. Know that we understand and wish you relief. Take care,
Heron
You have every right to be sick and tired of this crap, and if you can't let it out here, where can you? Please don't be embarrassed, you're with friends who understand.
Our lives, our personalities are dramatically changed when we lack sleep and/or are in chronic pain. We can't handle the stuff we used to, we go into survival mode where having a clean house is pretty damn low on the list of important things to deal with when we just need to get through the day.
I watched my personality change horribly when I was sleep deprived for 6 weeks; my partner was/is thankfully understanding, yet baffled at this disease.
I'm so sorry you're struggling, and I wish I could offer more than a sympathetic ear. Know that we understand and wish you relief. Take care,
Heron
Sick and Tired and Not Ashamed Anymore!!!
Heronak, it's Jan
First of all, thank you so much for responding! Yes, I was embarassed and ashamed, at first, for posting what I did. I was definitely SICK AND TIRED on Sunday (and still am), but today is better, and, even though you have good days, and bad days, what I said still stands. Even though I was embarassed at first, I'm not anymore, because I've decided that I'm not alone. I'm not going to apologize anymore for airing my feelings, and I really appreciate your response, Heronak! I think I probably speak for a lot of you out there. Maybe everything I said isn't the way a lot of you feel, but I imagine, some of you can see yourselves in a few of the things I have said. I've always been a "half glass full" kind of person, a "cock-eyed optomist", someone who was always ready to meet each day head on. I've never been a complainer--always had a fairly high threshhold for pain. Never really been sick much. I've been blessed. Maybe that's why I was embarassed after I wrote the first post. After all, there's always someone worse off than me. But, I'm going to be honest, I AM tired of not sleeping, I AM tired of feeling sore and being in pain. So, I had a moment and, instead of "putting it in drafts" as a dear, dear friend of mine suggested to me, and, by the way, I should listen to that friend more often, I posted what I felt. I may not get any more responses, and that's okay. This really may not need a response. People may not care to read it (except Heronak and Sara, who replied to me in private--thanks Sara). But, it made me feel better, and as Heronak said, isn't that what this forum is for, too? Thanks!
Jan
First of all, thank you so much for responding! Yes, I was embarassed and ashamed, at first, for posting what I did. I was definitely SICK AND TIRED on Sunday (and still am), but today is better, and, even though you have good days, and bad days, what I said still stands. Even though I was embarassed at first, I'm not anymore, because I've decided that I'm not alone. I'm not going to apologize anymore for airing my feelings, and I really appreciate your response, Heronak! I think I probably speak for a lot of you out there. Maybe everything I said isn't the way a lot of you feel, but I imagine, some of you can see yourselves in a few of the things I have said. I've always been a "half glass full" kind of person, a "cock-eyed optomist", someone who was always ready to meet each day head on. I've never been a complainer--always had a fairly high threshhold for pain. Never really been sick much. I've been blessed. Maybe that's why I was embarassed after I wrote the first post. After all, there's always someone worse off than me. But, I'm going to be honest, I AM tired of not sleeping, I AM tired of feeling sore and being in pain. So, I had a moment and, instead of "putting it in drafts" as a dear, dear friend of mine suggested to me, and, by the way, I should listen to that friend more often, I posted what I felt. I may not get any more responses, and that's okay. This really may not need a response. People may not care to read it (except Heronak and Sara, who replied to me in private--thanks Sara). But, it made me feel better, and as Heronak said, isn't that what this forum is for, too? Thanks!
Jan
No one is alone who had friends.
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dmkm
Jan,
I few observations from a newcomer...It appears to me that you respond to many of the e-mails that are posted and have been able to give moral support to many of us, myself included when I posted for the first time yesterday. You also offer good advice. Every now and then you need to "be encouraged" instead of always "encouraging". Does that make sense?
Many of us just keep our frustrations bottled up inside because we don't know anyone else who would understand us. It looks to me like this is one place where you DO have people who understand what you're going through.
dmkm
I few observations from a newcomer...It appears to me that you respond to many of the e-mails that are posted and have been able to give moral support to many of us, myself included when I posted for the first time yesterday. You also offer good advice. Every now and then you need to "be encouraged" instead of always "encouraging". Does that make sense?
Many of us just keep our frustrations bottled up inside because we don't know anyone else who would understand us. It looks to me like this is one place where you DO have people who understand what you're going through.
dmkm
DEAR JAN WHATWOULD WE ALL DO WITHOUT YOU??? I KNOW WHAT YOU DID FOR ME WAS SAVE ME FROM GOING TO THE ER AND SPENDING HEEPS OF MONEY I DONT HAVE, AND CALLING ON ME ON THE PHONE AND STAYING ON THE PHONE WITH ME FOR OVER AND HOUR UNTIL THE PANIC PASSED. I CANT EVEN THINK OF WHAT I WOULD HAVE DONE WITHOUT YOUR KIND WORDS AND UNDERSTANDING.I DONT THINK YOU GET HOW MANY PEOPLE YOU HELP EACH AND EVERY DAY. IM WRITTING THIS IN CAPS SO YOU WILL HERE IT (((WE LOVE AND NEED YOU))) IF I COULD TAKE SOME OF YOUR PAIN I WOULD. NOT GETTING SLEEP IS ONE OF THE HARDEST THINGS I HAVE EVER GONE THROUGH. SO I HERE YOU LOUD AND CLEAR. I JUST WISH THERE WAS SOMETHING I COULD DO FOR YOU I FEEL SO HELPLESS I HEAR THE PAIN IN YOUR WORDS AND AND I WANT TO MAKE IT BETTER FOR YOU.I WILL SAY A PRAYER FOR YOU TONIGHT AAND KNOW THAT YOU HAVE A SPECIAL PLACE IN MY HEART. THIS SYNDROME REALLY DOES MAKE ME FEEL SRACED AND HOPELESS BUT WITHOUT YOU I WOULD BE ALL ALONE SO PLEASE KNOW THAT YOU HAVE ALOT OF PEOPLE HERE WHO LOVE YOU AND FEEL YOUR PAIN GOD BLESS YOU LYNDARAE
Lyn
I started to answer this as soon as I saw it last night, but I kept falling asleep (which is unusual for ME) so I quit, deciding to wait until this morning, and now it's 3:52 am and here I am. What can I say?--Your words mean so much to me. You were one of the first to get to know me when I first joined this forum. I'll never forget our phone call either--It meant a lot to me, too, but, Lyn, I received as much from that call as you did. Thank you so much for your supportive words. I need them right now. Again, this is for all you "newbies", another great benefit of this forum is not only receiving knowledge about RLS, but, if you're lucky, really lucky, you'll meet some of the best friends in the world. That's an unexpected, but very wonderful bonus, and, as busy as this world seems and as uncaring as you think people are, you can see that people do care. I've got proof in black and white. Thank all of you so much!!! Jan
I started to answer this as soon as I saw it last night, but I kept falling asleep (which is unusual for ME) so I quit, deciding to wait until this morning, and now it's 3:52 am and here I am. What can I say?--Your words mean so much to me. You were one of the first to get to know me when I first joined this forum. I'll never forget our phone call either--It meant a lot to me, too, but, Lyn, I received as much from that call as you did. Thank you so much for your supportive words. I need them right now. Again, this is for all you "newbies", another great benefit of this forum is not only receiving knowledge about RLS, but, if you're lucky, really lucky, you'll meet some of the best friends in the world. That's an unexpected, but very wonderful bonus, and, as busy as this world seems and as uncaring as you think people are, you can see that people do care. I've got proof in black and white. Thank all of you so much!!! Jan
No one is alone who had friends.
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bradyferguson
- Posts: 74
- Joined: Tue Sep 21, 2004 1:29 pm
Brady,
An excellent post, thanks. I particularly like the part about not becoming the disease or defining ourselves that way. We are all so much more than our illness(es)! Best to you,
Heron
PS And on that note, I am a great partner, compassionate, funny, love to hike, workout, quilt, fish, cook and drink good wine, am a wonderful cat mom, love my home and my friends, and YES, life is good!
An excellent post, thanks. I particularly like the part about not becoming the disease or defining ourselves that way. We are all so much more than our illness(es)! Best to you,
Heron
PS And on that note, I am a great partner, compassionate, funny, love to hike, workout, quilt, fish, cook and drink good wine, am a wonderful cat mom, love my home and my friends, and YES, life is good!
Brady, this is Jan
Heron is absolutely right. You wrote a wonderful post and you are exactly right. RLS DOESN'T change our lives! It changes our personalities! I DO have a wonderful life, also. I have many wonderful things happening to me. See, I had such mixed emotions when I wrote the second post asking everyone to ignore my first post. That's why I felt a little ashamed about airing my frustrations because I DO have so many GOOD things in my life. And I KNOW that I have been so blessed. For instance, since I retired almost 2 years ago, I found a new outlet that has grown so much. I have become an artist and you wouldn't believe what has happened to me!! I'm not Michangelo, but I'm doing pretty darn good!!! (And, I'm not bragging--a higher power has a hand in this!) I have a wonderful family, a great husband and a great dog (Willie--a JRT who owns our home, he just lets us live here!). Life, in general is very good to me!) But, some days, like Heron said, you just have to get it out! So, in the end, I guess I don't feel so bad "getting it out", especially to people who know what "it's" like. You are right--this is exactly the place to come. If we didn't have a place like this--a place to share where people REALLY understand what we all go through, because no one really could unless they "walk a mile in our shoes (and believe me, if they had RLS, they probably could) LOL. BTW, I think you are actually better than Dr. Phil!!
Thanks Brady!
Jan
Heron is absolutely right. You wrote a wonderful post and you are exactly right. RLS DOESN'T change our lives! It changes our personalities! I DO have a wonderful life, also. I have many wonderful things happening to me. See, I had such mixed emotions when I wrote the second post asking everyone to ignore my first post. That's why I felt a little ashamed about airing my frustrations because I DO have so many GOOD things in my life. And I KNOW that I have been so blessed. For instance, since I retired almost 2 years ago, I found a new outlet that has grown so much. I have become an artist and you wouldn't believe what has happened to me!! I'm not Michangelo, but I'm doing pretty darn good!!! (And, I'm not bragging--a higher power has a hand in this!) I have a wonderful family, a great husband and a great dog (Willie--a JRT who owns our home, he just lets us live here!). Life, in general is very good to me!) But, some days, like Heron said, you just have to get it out! So, in the end, I guess I don't feel so bad "getting it out", especially to people who know what "it's" like. You are right--this is exactly the place to come. If we didn't have a place like this--a place to share where people REALLY understand what we all go through, because no one really could unless they "walk a mile in our shoes (and believe me, if they had RLS, they probably could) LOL. BTW, I think you are actually better than Dr. Phil!!
Thanks Brady!
Jan
No one is alone who had friends.
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bradyferguson
- Posts: 74
- Joined: Tue Sep 21, 2004 1:29 pm
OK ... off topic first ... for those JRT owners, us cat owners know how you feel about your pets owning your home and merely letting you stay!
Fidget (4yrs) and Pickles (2yrs) are my children and I'd be lost without them. They instinctively know when "mum" is having a bad day and won't leave me alone for a minute ... to the extent that if Fidget "falls asleep on the job" he'll make sure he's as close to me as possible, if not touching me
Back on topic tho ... wonderful post Brady and I totally agree with you wholeheartedly. When my RLS hit I was so down in the dumps it was beyond a joke, to the extent that the only way I was looking at life was from the point of view of how RLS had managed to totally ruin it for me.
However, as those in here who know me best, I have done a complete turn around and although I still have my "I hate my legs and life in general" days, I look at all the positive things that are still on offer to me in life. Nearly everyone cops my motto at some stage or another: Take it one step at a time, one day at a time, and most importantly Stay Positive!
I've received comments on this board from people who know that I have such a chronic form of RLS. as well as a myriad of other things, saying that my positive outlook on things is a ray of sunshine. Staying positive and simply getting on with what you CAN do is the main objective of keeping on track.
WHO AM I? I am a 29yr old wife/daughter/sister/grandaughter/niece/cousin and most importantly, a Friend! I'm "mother" to two very whacky cats. I've successfully set up my own bookkeeping business and have not yet had to advertise for clients simply due to my reputation preceding me and good old word of mouth doing the advertising for me. I have a wickedly warped sense of humour; love reading thriller crime novels and discussing books/authors with fellow bookworms; I love going to the movies; I love the beach and the country and am itching to go overseas again.
Fidget (4yrs) and Pickles (2yrs) are my children and I'd be lost without them. They instinctively know when "mum" is having a bad day and won't leave me alone for a minute ... to the extent that if Fidget "falls asleep on the job" he'll make sure he's as close to me as possible, if not touching me
Back on topic tho ... wonderful post Brady and I totally agree with you wholeheartedly. When my RLS hit I was so down in the dumps it was beyond a joke, to the extent that the only way I was looking at life was from the point of view of how RLS had managed to totally ruin it for me.
However, as those in here who know me best, I have done a complete turn around and although I still have my "I hate my legs and life in general" days, I look at all the positive things that are still on offer to me in life. Nearly everyone cops my motto at some stage or another: Take it one step at a time, one day at a time, and most importantly Stay Positive!
I've received comments on this board from people who know that I have such a chronic form of RLS. as well as a myriad of other things, saying that my positive outlook on things is a ray of sunshine. Staying positive and simply getting on with what you CAN do is the main objective of keeping on track.
WHO AM I? I am a 29yr old wife/daughter/sister/grandaughter/niece/cousin and most importantly, a Friend! I'm "mother" to two very whacky cats. I've successfully set up my own bookkeeping business and have not yet had to advertise for clients simply due to my reputation preceding me and good old word of mouth doing the advertising for me. I have a wickedly warped sense of humour; love reading thriller crime novels and discussing books/authors with fellow bookworms; I love going to the movies; I love the beach and the country and am itching to go overseas again.
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
I GUESS I SHOULD HAVE KEPT MY HANDS OFF THE COMPUTER!!
Sorry Nadia, it's Jan
Well, Nadia, I've always said I admire you, and I do. You are a wonderful person. I could crawl in a hole right now. And, I don't think I'm being over sensitive. I obviously should have not written what I did. I, too, am a wife, mother, have a wonderful life, I play piano, quite well actually, have since the age of six. For all of you who don't know me, I am quite an accomplished musician. I'm not one to "pat myself on the back", but I've played with orchastras and now play with the praise team at my church. I was a paralegal with state law office for 30 years, working my way up to a very good salary without the benefit of a college degree. I started working at the age of 18. I raised, with the help of my husband, three children. I have a son, who I am very proud of, who was a member of the U.S. Air Force for approx. 8 years. I have twin daughters, one of whom is a high school teacher--the other, like you, Nadia, is a CPA (I think that's what you are, isn't it?). My husband is a Special Education Administrator, helping high school students in special education decide what they want to do when they graduate. Now back to me. I lead a very busy life. I don't sit around and think "poor me". I volunteer at my church, blood drives, at a local food pantry. I am a FRIEND, a good friend. I am an artist, having just been in my first national art fair. I am just beginning to become recognized in the midwest and my business is rapidly growing. It appears that my post offended you, Nadia. I was being honest. You certainly have a right to your opinion. Perhaps I am misunderstanding your post, Nadia. Do you mean I can't vent at all? Did you read all of Brady's post? I don't wallow in self-pity. Do you see that in all of MY posts? It has been a bad two months at my house and you know why--I have told you, Nadia. An unusually bad time. That has had something to do with why I wrote that post. I thought this was a safe place to vent, but I guess not. I didn't expect this. I feel like a six year old who has just been punished. It's been a bad day here. I don't know if I'll be back.
Jan
Well, Nadia, I've always said I admire you, and I do. You are a wonderful person. I could crawl in a hole right now. And, I don't think I'm being over sensitive. I obviously should have not written what I did. I, too, am a wife, mother, have a wonderful life, I play piano, quite well actually, have since the age of six. For all of you who don't know me, I am quite an accomplished musician. I'm not one to "pat myself on the back", but I've played with orchastras and now play with the praise team at my church. I was a paralegal with state law office for 30 years, working my way up to a very good salary without the benefit of a college degree. I started working at the age of 18. I raised, with the help of my husband, three children. I have a son, who I am very proud of, who was a member of the U.S. Air Force for approx. 8 years. I have twin daughters, one of whom is a high school teacher--the other, like you, Nadia, is a CPA (I think that's what you are, isn't it?). My husband is a Special Education Administrator, helping high school students in special education decide what they want to do when they graduate. Now back to me. I lead a very busy life. I don't sit around and think "poor me". I volunteer at my church, blood drives, at a local food pantry. I am a FRIEND, a good friend. I am an artist, having just been in my first national art fair. I am just beginning to become recognized in the midwest and my business is rapidly growing. It appears that my post offended you, Nadia. I was being honest. You certainly have a right to your opinion. Perhaps I am misunderstanding your post, Nadia. Do you mean I can't vent at all? Did you read all of Brady's post? I don't wallow in self-pity. Do you see that in all of MY posts? It has been a bad two months at my house and you know why--I have told you, Nadia. An unusually bad time. That has had something to do with why I wrote that post. I thought this was a safe place to vent, but I guess not. I didn't expect this. I feel like a six year old who has just been punished. It's been a bad day here. I don't know if I'll be back.
Jan
No one is alone who had friends.
ARGH!! Rough nite again huh girl? Yup, I think you did misunderstand my post.
Noooooo your post did not offend me at all!!!!
I have read ALL the posts in here, word for word and absorbed every word and comment.
Not once have I EVER thought or said that you wallow in self-pity; NOR have I ever said that you should not come in here and vent ... you know that is what we are here for ... we are your friends, and you know that you can lean on us whenever you need us.
Heck girl, all i've done in my thread over the past couple of weeks is vent out of pure frustration .... and YOU have been there every step offering the support and courage as only a good friend who understands can do!
I love you heaps Jan!!
Noooooo your post did not offend me at all!!!!
I have read ALL the posts in here, word for word and absorbed every word and comment.
Not once have I EVER thought or said that you wallow in self-pity; NOR have I ever said that you should not come in here and vent ... you know that is what we are here for ... we are your friends, and you know that you can lean on us whenever you need us.
Heck girl, all i've done in my thread over the past couple of weeks is vent out of pure frustration .... and YOU have been there every step offering the support and courage as only a good friend who understands can do!
I love you heaps Jan!!
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!