This is ugly! My best intentions, I swear.

For everything and anything else not covered in the other RLS sections.
sugbrendas
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Post by sugbrendas »

thanks lynne,
am i one of the offenders? Don't be afraid to answer honestly.
I try to always say what works for me,or you gotta find your own RLS cocktail.
let me know
Finally able to sleep on average 9 hours a night!
Brenda

Neco
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Post by Neco »

No no, no no no NO

Ruby, what happened to that woman was in NO WAY your fault, even if something terrible had happened and she died, it would still have NEVER been your fault. Please do not think things like that about people who have gone to a Doctor and been prescribed something. This was TOTALLY the physician's fault and you should not project the blame onto yourself.

Look at it this way, if you tell someone that Tylenol works great for headaches, and then they take half a bottle - are you really going to feel like it is your fault? It's the same principle here. I don't know, I guess I am shocked at the way some people are willing to accept blame for some things when they shouldn't..

I went through adolescence and into adulthood with a severely guilty conciense for no reason other than I had conditioned myself to think that way (it was my job to spend less than my siblings on clothes & gifts because we were not "rich" like everyone else; It was my job to feel guilty when expensive computer hardware/other gifts didn't work right and needed the trouble of "returns & exchanges", etc ). In fact I still have problems with it but I'm way more realistic than I used to be..

Nobody on this board should feel like it is their fault for sharing what they take and answering calls for information. Unless someone blatantly tells another member not to worry about the doctor, or to take more than they should start out on, and something bad happens.. When people consult a doctor, you have absolved yourself of any further responsibility related to their health, in my eyes. Of course it is OK to be concerned for someone, but to blame yourself for injury or death after responsibly giving out information is just wrong. Please don't.

becat
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Post by becat »

Brenda my dear, please, no.
Honestly, I swear.

Zach, I understand why Ruby felt that way, I also know we can take on others pain or choices for the most part. I might have said the same thing to her, as a support group leader I am held to a different standard, than when I am on here, just posting for myself. As is Ruby. And yes, it would scare me too.


I would think, though, that if we are advocating to be careful what we type in other threads, we should be careful what we type in this thread as well. To some people, these posts (the collective of them) might make people feel that they are not providing a caring and supporting place because they are talking about drugs. Or that they were responsible for turning this wonderful place into a horrible one. That would make them feel oh-so-bad. And I can't think anyone deserves that.


I agree and that is why I only posted it here instead of each thread.

I did not say this had turned into a horrible board. I did not post this to hurt anyone, but it needed to be said. I'm knew full well that some people might not like this, thus the title of the thread. However, I think I don't make a habit of trying to make others feel bad, so I'll go on my record with that. I have and did, write from my heart, that is all. I don't regret that. It did raise the issue and we are talking about it at least.

I responded to what I have been reading and what I have been told by several others. Yes, medications are an important part of RLS, but we also need to also share the Education part of this disorder.

EX: Why read the Algorithum? I haven't explained the why in a while and I don't often see the WHY answer from anyone else. I'm changing that part of my answers from now on. You need to read the algorithum to understand why there is a way they treat RLS to begin with. It's you best defense to know why docs (our community experts) start us out on certain meds and yes, try, try again, because each of us is different. And, if your educated you'll know if a doctor has no clue what he or she is doing with your case.

Please. I'm not blaming anyone asking anything, I asked questions when I got to this board.......I asked everything. However, I got full answers and a huge dose of be careful to proceed with caution, as well. By full answers, I mean that the poster made sure that I understood the facts or his or her own experiences.

This is not a bad thread and it's not about making the board different. It's not about any one of us feeling bad about posting. I knew when I wrote it, I knew that it would cause a stir, but I have wanted to write it for a while now.
I thought it was time that the issue was talked about. And we are!

Hugs Lynne

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Post by ViewsAskew »

becat wrote:I agree and that is why I only posted it here instead of each thread.

I did not say this had turned into a horrible board. I did not post this to hurt anyone, but it needed to be said. I'm knew full well that some people might not like this, thus the title of the thread.
Hugs Lynne


If you felt I was singling you out, I was not. It was the general tone of the collective posts that made me uncomfortable. That, along with some private emails to me from people upset that they were "bad" members and wanting to know if they did anything wrong, concerned me enough to post that there is an alternate view and that, in my opinion, neither are right or wrong. They just are. They are personal and based on each person's value system. Of course, that's just my perspective. And, I hope a welcome one.

I feel stongly that no one at all did anything wrong and I do not want anyone to feel that way. This is a matter of opinion and we are all welcome to our own perspective. This is a board made of many members with diverse needs and views and we can (and have and probably always will) have differing opinions at times. As Lynne noted, this is one of those times.

I hope no one feels badly or thinks they have offended anyone or feel they did anything wrong. That's the part I'm concerned about. Think about what Lynne and others said. If you feel you should change how you post, please do. If you do not feel you should, please don't. But, please, please do not feel guilty even if you do think you should change how you post.
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.

Rubyslipper
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Post by Rubyslipper »

There are NO "bad" members on this board. I'm glad we have the private email opportunity because sometimes things get settled that way that can't on an open discussion thread. So for anyone who pm'd Ann and were afraid this thread was about them, please dismiss that fear. The fact that anyone shoud be afraid they are doing something wrong on this board is both good and bad. Good in that no one wants to cause pain to someone else, even if unintentional. Bad that they thought anyone was singling them out. Zach, thank you from the bottom of my heart for making me feel better about the situation I was in. I, too, am one of those people who feel guilty over everything and really haven't been able to change that. We have a good and open board, the ability to exchange ideas and thoughts, and yes, not agree with each other. It is also a good thing when something that is troubling to us can be discussed and brought out for inspection. No, we don't always agree. Yes, sometimes feelings get hurt or messages get misinterpreted. But that doesn't make anyone bad. We're people who share a disorder and need each other to get through it. Concerns of any kind need to be brought out in the open. This one was and there is good discussion going on. Don't let it get to be something that people take sides on though. It's just a concern that new people don't expect us to have all the answers or that we try to give them answers we aren't qualified to give. That sounded harsh and I didn't mean it to. I just mean that we aren't experts in any of this. We are just people who have come together to give support to others, who care about the welfare of those who suffer like we do. We are all still looking for answers of different questions and can share what we find. I agree that most people who come here are looking for whatever will make them feel better. And yes, that does usually evolve into support for each. But I just think we have a responsiblity to be very careful about giving advice on meds. None of us has said "Don't do it", we've just said be careful. Ann, for my own understanding could you clarify what you meant when you asked for people to think about what Lynne and others said. It's so hard sometimes to get a clear understanding of a statement. I know from my own postings I just ask for caution, in myself as much as others; not a change in posting. As for every post on this subject, I for one welcome each one as it helps us all in the long run.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ViewsAskew
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Post by ViewsAskew »

Ruby, just that, to think about it and determine how you feel about it. To see if there is validity, from your own perspective, to the concerns. Not just Lynne's, but to yours and Jan's also. If there is, act accordingly. If there is not, act accordingly. And then let it go.

As you, and others, have eloquently said, this shouldn't be a divisive issue, and as you, I don't want anyone feeling singled out or that they have done anything wrong. Or that they should be afraid to post because they will do something wrong. To me, it's sort of a personal ethical issue. Of where responsibility lies and how we feel about it. Then to act according to our internal guidelines.

Lynne's post shared that she had concerns about her internal compass and wanted us to see where we stood on the issue. It wasn't in any way a call to sides, simpley a great way for us to check in with ourselves and see where our internal compass is. Maybe we haven't thought about it in that way. Maybe we have and we have decided the same; maybe we have decided something different. To question it, decide, and then act in accord with our own compass seems to me to be the most important thing here. And if anyone should decide to change (alter, moderate, err on the side of caution - however you want to word it) how they post because of it, to not think that what they did before was wrong, incorrect, or bad. It just was. And now it is different.
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.

sugbrendas
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Post by sugbrendas »

I have a idea, is there anyway to make a disclaimer as part of registering?
You know- "I accept these terms".

I don't know what exactly happened but would like to know.

I have to confess i have a hard time reading long posts where there aren't any breaks for the paragraphs. It must be ADHD or something.
Finally able to sleep on average 9 hours a night!
Brenda

ViewsAskew
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Post by ViewsAskew »

Unless I am remembering incorrectly, when Lynne and I were talking to one of the Foundation angels, she said that there is one. It certainly protects the Foundation, I would think, but my guess is that most of us don't remember it, since I sure don't remember it from when I signed up :( .

Me too on the text without paragraph marks, Brenda! And those with all caps, or colored text. . .I think I'm old :roll: The ones with all caps? My brain just can't make it out - I want to read it, but I just can't get through it.
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.

Rubyslipper
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Post by Rubyslipper »

Sometimes my thoughts and fingers get going and I forget proper English guidelines. Yes, I agree it makes it hard to read, my attention span isn't too long sometimes. But you can choose to read it or not, whatever you want to do. It's easy to miss something important (or not!) just because it isn't written in an easy way to follow. I'm guilty as charged on both accounts. I'll try to do better in the future :D

It's so hard to get your thoughts across anyway sometimes because the written word can't compare to actually speaking with someone. It's caused some hard feelings at times that weren't meant. I think some people can feel hurt about an imagined slight for a long time just because what was written didn't come acoss the way the writer intended. But that's way off the subject here, so feel free to disregard. :?
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

fulltimemartins
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Post by fulltimemartins »

Please allow me a moment on this topic. There have been many good things said in this thread...it is quite obvious that no one has meant to hurt anyone else deliberately. The great thing about this board is that we all have one thing in common and that is our agony over rls. Everyone here knows how terrible it is and the agony that goes with it. It is one of the few places we can go and not feel alone in this battle...knowing that others feel the same way has comforted me SO much during my long nights of walking the floor. I also remember when I read the posts that it is personal opinions and experiences that I am reading and advice from people going through what I am, not medical advice. Although I will admit, sometimes the advice IS better than what I have gotten from the medical field at times. But more importantly, learnng about some of the meds others have used has definitely opened dialouge with my doctor and even at times caused him to search out more info on some meds.

To close...thank all of you that contribute to my learning, who share my pain and for the respectful way this thread has been dealt with. Wouldn't the world be a better place if all differences of opinion could be handled as well as this??

Thanks for letting me share my opinion. :D

sardsy75
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Post by sardsy75 »

Ditto on all Martins' said ... got to the end of the thread, read his post and thought "yay! someone summed it up all for me!!!" ... thankyou Martins.

That's all I can muster up right now ... which is pretty cr@ppy since i'm member numero uno on this board.

Its been a {extremely unmentionable word} of a fortnight ... Troy and I have agreed to forget that the Easter weekend ever happened ... i'm in extreme pain ... i've had no sleep for going on three weeks now ... i move to Gladstone next week so i'm existing in the middle of a wasteland that once resembled a neat and tidy house ... i cry for no reason, sometimes for good reason.

I'll post again when my sanity (or maybe that should be INsanity) levels have returned to normal.

PS ... I MISS MY CAT, Fidget, SOOOOOOOO MUCH!!! He's been at the cattery for two weeks now, since i've been away visiting specialists, doing training and packing up my house. He's my baby boy, always there to say "hiya mum ... when's dinner?" or "mornin mum ... when's breakky?" or "hey mum .... you dont look so good so i'm gonna keep you company by sittin right here on the arm of the reclyner chair and then in bed tonight whether you like it or not". Think I might go out and visit him tomorrow...
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!!!

ViewsAskew
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Post by ViewsAskew »

I'll be looking forward to that post when sanity returns Nadia. I hope it's soon.
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.

ViewsAskew
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Post by ViewsAskew »

[quote="Rubyslipper"]Sometimes my thoughts and fingers get going and I forget proper English guidelines. Yes, I agree it makes it hard to read, my attention span isn't too long sometimes. But you can choose to read it or not, whatever you want to do. It's easy to miss something important (or not!) just because it isn't written in an easy way to follow. I'm guilty as charged on both accounts. I'll try to do better in the future :D quote]

Ruby, Ruby, Ruby. . .may I ask why you thought that was directed to you???? I can't recall you doing that at all. It just happens here and there and it just a comment in general - not directed at anyone in specific.

I have a tendency to take everything way, way, way tooooooooo personal. Maybe that's why we are here. My skin is often much thinner than it looks. Maybe it's that old adage, "you spot it you got it" or maybe it's projection - me worrying about you when I should be worrying about me. If so, ignore. But, if there is any truth to you being worried about something that you shouldn't be worried about, please, please, please don't. It's definitely the small stuff. The big stuff is how wonderful, caring, and supportive you are.
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.

Neco
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Post by Neco »

Go look 2 posts above Brenda's, Ann ;)

Rubyslipper
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Post by Rubyslipper »

Yes, I assumed it was directed at me because my post was long and without any paragraph breaks. The next two posts were about how hard those are to read (along with a few other things that make it hard to read posts). So it was a natural assumption. Did I think anyone was trying to be mean? No. Was I trying to be rude? No. That's what I mean by saying that sometimes what we write isn't the same as if we said it in person. Thanks, Zach for catching on to the same thing I had. The timing was just too perfect. Yes, we are a caring, supportive board and that's what makes this all work.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

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