Trev--
I sensed your discomfort in your first post to this thread, and I understand it. You don't know me well, but if you did, you'd know that what I said I did not take lightly-- nor did I enjoy it in any way.
But neither am I ashamed of it.
From your use of the term "playground" and the phrase "real people have been hurt", it sounds as if you feel that I've acted childishly and irresponsibly. I'm sorry if that's how you feel about it, but I respect your right to your opinion.
I am afraid that you and I, respectfully, will have to "agree to disagree" on that. In my opinion,, I think that it would be much more childish, and much less "adult", for us to take this to e-mail. I said what I said in open forum because we ARE all adults, and I felt that discussing things in the light of day would give other members a chance to make their own judgements about the merits of the discussion.
It concerned me (and not for the first time) that points I thought were worth posting (by myself and others) for the possible benefit of the group were being publically discredited and patronized, to the POTENTIAL disadvantage of the membership in general. I could have "gone behind the scenes" (well, actually, I couldn't because I'm not a member and cannot use PMing)...but most forums (rightly) discourage members approaching eachother in private with controversial subjects. There's too easily developed a feeling of being harassed in the privacy of your own inbox. Any legitimate disagreement -- if it's apropos to the "business" of the forum-- is better aired in the light of day.
But beyond that, Trev, there were specific issues here that could be important for the membership to "hear both sides on"--- not the tension between us, certainly, and I did express my regret for that--- but the RLS-specific issues. I believe that since we ARE adults here, and this is NOT a playground, each member AS an adult now has the opportunity, if they even care, to decide for themselves about those issues, and about how we present what we present here.
I've been on many different types of forums, and this is not my first medical support forum. I hate more than you'll ever know any type of tension on a forum, most of all on one designed for medical support. We certainly have enough frustration and hurt to deal with just from RLS. One of the reasons I seldom post here anymore is because of dynamics here that made me uncomfortable (consistently) in the past. But I believe in the group's role, and occasionally I do feel that there's something I have to say that's worth saying, in case it will help someone else.
I've watched my own and other people's comments sort of pooh-poohed, and I understand why usually no defense is made. Part of it is a feeling like yours (and mind) that we all want to "play nice"; another part may be that when challenged we begin to doubt our own opinions/observations. But that was the very reason why one of my early comments in this was that we need to be extra respectful of one another here. The world outside, the medical community, etc., are NEVER GOING TO "GET" WHAT WE GO THROUGH.... unless they LITERALLY "get" it.
And frankly, I'm not all that impressed or encouraged personally by the latest research. I feel like MOST of the efforts "in our direction" are aimed at finding new medications to try on us, which, if they stop working in a couple months or a couple years-- or if they cause us dangerous side effects-- the pharmaceutical companies and doctors can just say, "Ooops... but don't worry, we have ANOTHER new drug you can try."
If professional recommendations about this condition we share are, for example, made based on
4 decent test results out of only
8 to begin with-- how much MORE POTENTIAL is there for knowledge, perspective and understanding of the presentations of RLS if we HERE..... hundreds of us.... feel free to speak openly and share our own experiences and our own knowledge of these, often uncomfortable, bodies WE live in???
WE are REALLY the "RLS experts", and as much as I both understand and am interested in the scientific work on this condition, science history has proven OVER AND OVER that what the scientific community has at one time taken as gospel has later on been found to be either wrong or only a part of the "puzzle". There's MUCH yet... a HUGE amount of information actually... about our bodies, illness, nature, etc., that science has just cracked the surface of, just barely come to ANY elementary understanding about.
So my main point here was, as much as anything, that the "least" of us (and some of us have felt we've been treated as "lesser" here) have both a right and a responsibility to participate when we feel we have something potentially useful to add. And Ann WAS right... what doesn't pertain to any one of us, can and SHOULD probably just be ignored.
I've said OVER AND OVER that I REALIZE my condition is not as severe as others here. I'm TREMENDOUSLY sympathetic of those who suffer SO horribly. I'm THRILLED for those who can get by with only soap in their bed ... and for those who have found medications that ease their suffering even a little. I count my blessings every night that I AM able to get to sleep relatively well, if earlier than I might prefer... and every day that getting up and moving around DOES still reduce the intensity of my sensations most of the time.
But I don't want you and I to e-mail back and forth about who was "right" or "nice" and who wasn't. I don't want to do, what I feel would be even more "schoolyard" than what I did, and have some sort of private and then public "making up" with Ann as a token of "solidarity" or whatever.
ANN, if you're still reading this-- Some here will think that I "said my dirties" and "got my licks in" at your expense, and now I want to just move on like it never happened. That's not how I see it. When I felt that I and others were disrespected by you, I tried to make that point. When I felt you lectured me in your response to that, I felt I needed to clarify some issues and make my point more directly. I have NO idea what your intent was, as I realize you cannot read my mind. That's why I tried to be specific, rather than just railing on emotionally from blind indignation.
Personally, I feel that at this point, we both "had our say", and that now, frankly, you are probably the more sympathetic figure. I'm fine with that. You work very hard on this forum, and you've suffered horribly from RLS--- you've earned a level of respect, and even to be cut some slack if what you mean doesn't always come out the way you meant it.
You and Trev both, I believe, have the capability, to remove this whole discussion, and make this not only "end" but disappear completely, if you choose to. And I've realized that from the beginning. If you choose to do it now, I respect that choice.
Trev, I know this is not what you wanted to hear, but just as it's not your way to speak publically, it's not MY way (and I think it's potentially MORE damaging) to treat this as if it's something shameful and to try and fabricate some back-alley "truce". I personally don't feel I need a truce of any kind with Ann, because I'm just as able today as I was four days ago to read and consider Ann's posts objectively. IF I'm reading your feelings right, and you think that's a childish and irresponsible attitude, the good news is that probably you're not the only one, and my comments will (if left alone, or removed, your choice) fade quickly into the obscurity that they may, indeed, deserve. We ARE all adults here, and the other people who have read this thread have probably already made up their minds as to the merits, or lack thereof, of anything I've said.
I really meant it when I said, I mean no offense to you (or to anyone else), but now I've tried to explain why. If I've failed, I can only fall back on what you yourself said earlier, I guess. It's hard to "feel" what people mean sometimes from non-verbal communications.
Sara