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Post by Ms B. on Apr 12, 2010 12:35:56 GMT 10
Hey everyone!  I'm so sorry I haven't been around and it's been such a long time since I let anyone know what is going on. I've missed you all and would love to catch up on posts right now, but I'm mainly dropping in for a quick post and to put something to you all. First though, I see we have some new members. I'd like to say welcome to you and I hope you have gotten something out of this forum  Secondly a little update on where I'm at - I'm very much not interested on being online that much. I've been plodding along and been dealing with life the best I can. I also just feel I need to focus on other things. I'm one of those people who get to a certain point where I start focusing on my life and living for myself rather then having anything to do with anything that focus on my illness (a good example is I made friends with someone on a social network site who has a chronic condition and it's all she ever talks about so I never talk to her anymore) which is probably why I have no friends with Diabetes. Anyway, I'm not saying I'm going to ditch everyone. Of course not. Majority of my friends have ME and FM and they're wonderful people. They're the most genuine friends I've ever had. What I'm saying is ME is not my life and as a result this forum and everything to do with it isn't my life anymore. I'm really sorry everyone for not focusing on it anymore because I know that not everyone acts like I am and we are all at different stages in our life and illness. I know people still need to talk about these things and to have support. So I'm making this suggestion - I have a forum which is fairly new. It's a general entertainment/discussion forum that I created for my friends because we're not in contact online that much and I want to avoid places like facebook as social interaction because to me it's very lazy (posting is different). I was considering making a special category on my other forum especially for ME and for anyone on here who wants to discuss it. You could also go into the other areas of the forum, but all the ME stuff would be concentrated in the one place. I also wouldn't be an active poster on the ME boards because it's too much for me, but as I'd be managing the board on a general scale I'd still be around. So basically I'd have an extra area for you all that no one else could see unless they joined that group, I wouldn't be managing it, but would accept help from anyone who wanted to. And then I'd eventually close down this forum and try to figure out what to do about the blog and all that. Please let me know what you think. If you need to message about it please do so. I would really appreciate your thoughts because this is your forum. I may have created it, but at the end of the day I'm not apart of it anymore and I want to offer you all somewhere to go where you can talk about ME and FM and have somewhere a bit more active. Ok, I'm going now! Sorry for the long post and I hope everyone is doing well. I'll pop by after a few days |
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Post by Fae kitty on Apr 12, 2010 14:28:38 GMT 10
Hey Ms B In the first few years of my illness i was very pro awareness and quite open about my ME. Then i started to get quite disillusioned with some of the awareness groups, forums etc that i was involved in or a member off. I also became quite disillusioned with "healthy people" and completely sick of their judgements. I got to the point where i refused to talk about ME with anyone who didn't have it or a similar illness. I also stopped having anything to do with awareness and became quite secretive about it all. It's only over the last couple of months that i've reconsidered this. Whilst i'm still not very forthcoming with "healthy people" i am slowly (albeit warily) gettting on the awareness bandwagon again. I guess what i'm trying to say is we're all at different places with this and i absolutely understand that there comes a time where you don't want to focus on illness and you want to live life. I think your suggestion about about adding a ME section to the other forum is a good one. Personally i find it hard to keep track of more than one forum so it would suit me very well. I'd be happy to manage the ME section. I'd also like to apologise to everyone for being absent the last few weeks. Spoons were low & then my laptop died so i was offline for a bit. I've missed you guys & hope to catch up with you soon |
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Post by ArgyrosfeniX on Apr 13, 2010 7:35:59 GMT 10
I've called this little section of the web my second home for a few years now. It has been the most welcoming and best method for me to go through "CFS/ME Therapy". It is a part of my life and has a good deal of my history in it as well. CFS/ME life is like most everyone elses' in that it is cyclic. We all have periods where we can't stand to talk about what we have to anyone and want to rip their heads off as we know that they don't and won't understand... But then, eventually, most of us roll back to finding someone where the effort to explain and offer insight becomes important. That, I believe, is a main part of of ME cycle. Being active with others with ME and being "pro awareness" (thanks Kitty) are other cycles too. Overall, if this site were to be moved to another location - all the people followed - all the posts moved as well; it would still be missing some of what has made it special to me and I'm sure others too. If the posts weren't moved and ended up being deleted - lost in cyberspace - I think that a valuable resource will have been lost. I also feel that some of the acceptance I have with my CFS/ME will be lost as well. I came to this site when I was in pain - needing to find acceptance and others like me who understood what it was like to be called lazy to their faces. To have no one - not even their families and spouses understand what was going on or what was needed... You all have been my support and my therapy for a good long time. I am a better and healthier person because of this site and all its members' support. |
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Post by Fae kitty on Apr 13, 2010 9:33:04 GMT 10
Reading Argy's post has gotten me thinking about a few things i hadn't considered eg:
Also, whilst i agree that it's nice to have a forum that is just for those with ME & it has it's advantages eg: complete understanding, no judgement or disbelief etc, i think we have two issues.
1. Our active members seem to be dwindling. Don't get me wrong, i'd love to see BB's continue, but how long can it be kept going if no one (or very few) people post anymore? I do however think this can be changed with a little effort. I also think i may be able to attract a couple of new members.
2. I think the more pressing issue is Ms B wants to move on. Let me be clear, that i have nothing against her for this & i can understand her feelings as i have had similar feelings myself at different times & i believe we all have to do what is right for us. I think Ms B has done a fantastic job keeping BB's running as long as she has & has given us a great tool here & for that i congratulate & thank her.
Is there a way for you to leave BB's without shutting it down Ms B, or as the creator will BB's cease to exist if you remove yourself from admin? Is there a way for Argy & I to take it over? If that is possible i am willing to take it on (as i suspect Argy will. Correct me if i'm wrong Argy lol). If that can't be done my offer to manage the ME section of the other forum still stands.
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Post by Ms B. on Apr 13, 2010 11:09:33 GMT 10
I think your suggestion about about adding a ME section to the other forum is a good one. Personally i find it hard to keep track of more than one forum so it would suit me very well. I'd be happy to manage the ME section. Thanks for that Kitty Overall, if this site were to be moved to another location - all the people followed - all the posts moved as well; it would still be missing some of what has made it special to me and I'm sure others too. If the posts weren't moved and ended up being deleted - lost in cyberspace - I think that a valuable resource will have been lost. I also feel that some of the acceptance I have with my CFS/ME will be lost as well. I understand your feelings toward things being moved or posts being lost because as it is I wouldn't be able to actually merge the posts and threads into the other forum (at least I don't think I could), but I would move some threads manually myself that everyone thought was a much needed subject. Why do you feel that some of the acceptance will be lost? Is it because it will be apart of another forum not catering to ME and FM? The ME/FM, while being part of the board, will also be separate. Unless you're in the Blue Butterflies group settings than no one will see it or be able to participate in the BB's boards. It would be your own little hidey hole. 1. Our active members seem to be dwindling. Don't get me wrong, i'd love to see BB's continue, but how long can it be kept going if no one (or very few) people post anymore? I do however think this can be changed with a little effort. I also think i may be able to attract a couple of new members. 2. I think the more pressing issue is Ms B wants to move on. Let me be clear, that i have nothing against her for this & i can understand her feelings as i have had similar feelings myself at different times & i believe we all have to do what is right for us. I think Ms B has done a fantastic job keeping BB's running as long as she has & has given us a great tool here & for that i congratulate & thank her. Is there a way for you to leave BB's without shutting it down Ms B, or as the creator will BB's cease to exist if you remove yourself from admin? Is there a way for Argy & I to take it over? If that is possible i am willing to take it on (as i suspect Argy will. Correct me if i'm wrong Argy lol). If that can't be done my offer to manage the ME section of the other forum still stands. Those are the issues that are my main concern. I don't want to be actively discussing or making this my life anymore (issue 2) which would happen if even I was an active Admin and didn't post (looking for research, keeping the blog up to date, finding new books and other resources for ME and FM, just talking about it to others). My main concern is the dwindling activity and the forum dying. I don't want anyone to think I don't care about BB's anymore. I've put a lot of work and energy into this baby and I don't want it to go down the crapper, but there is one thing that common knowledge amongst admin's and veteran forum users - without active staff including admins, activity dies and without activity the forum dies. I'd be willing to completely hand it over to both you and Argy because I trust you both, but I also don't feel completely comfortable asking someone to take on that responsibility. It's not that I don't think you can do it at all, it's just that a lot of people don't realise how much comes with running a forum full time and I feel really bad asking anyone with ME to even consider it. To not only run it, but to get the place going again you'd have to be active almost daily and post new threads. Then there's the other little things - the constant advertising (I have old advertising threads on other boards), keeping up with the affiliates, making sure all the members are happy, dealing with member complaints and issues and the other more technical stuff plus then there's the blog. The shelf is fine, but the blog might be a problem. I've joined the blog from my other account as a contributor, but seeing as I'm not looking up research and news articles I have made one post. I was considering changing it so the blog would be a community thing and people could contribute posts to it. Anyway, the blogs something we can worry about later. I'll leave it at that for now because I don't want to overload anyone, myself included  |
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Post by Fae kitty on Apr 13, 2010 12:15:06 GMT 10
I understand your feelings toward things being moved or posts being lost because as it is I wouldn't be able to actually merge the posts and threads into the other forum (at least I don't think I could), but I would move some threads manually myself that everyone thought was a much needed subject. Why do you feel that some of the acceptance will be lost? Is it because it will be apart of another forum not catering to ME and FM? The ME/FM, while being part of the board, will also be separate. Unless you're in the Blue Butterflies group settings than no one will see it or be able to participate in the BB's boards. It would be your own little hidey hole. I misunderstood. I didn't realise that the ME boards would be restricted to BB members only, i thought they would be visable to everyone. I will wait to hear Argy's thoughts re: taking on BB's. Personally i'm willing (if you're happy with it B) to give it a go. I realise it would require checking in more frequently than i have been & that it will be a bit of a mission to get things going again, but i'm happy to try. Perhaps give it a few months & if things haven't improved then we'll go with your suggestion of merging with the other forum. I don't know much about the advertising or affiliates stuff so some more info on that would be appreciated, but i think simplifying things a bit by letting the blog go & focusing on the forum itself & perhaps getting the facebook group functioning again to try & attract new members would be a good way to go. |
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Post by ArgyrosfeniX on Apr 13, 2010 22:46:57 GMT 10
I, personally, would have no problem taking on the BB as a website... I'm currently webmaster for 2 other forums and a Moderator for a third. Ms B - The acceptance loss I think would come from the change... It's like having a favorite shirt. You wear it frequently, have history with it, may even know where each of the minor stains and tears came from. It's almost a part of you and who you are. Sure, a new shirt would work just as well to cover my body, and may even look similar or the same. But inside the heart and the head - you know it isn't the same, and that something has been lost. What would be lost? Memory mnemonics of good times; posts of my and our struggles with this retched disease; posts about life, laughter, loss and pain. The comfortable feel to the site - like coming home to loved ones... That is the part of me that would be lost. Sure - it could eventually fade and be replaced with something else. But for me. Right now. I need this site to be here for me. For the support and the warm fuzzies when I click the Bookmark - knowing that I have equal understanding and acceptance. I'm headed somewhere right now with my CFS that I have really no right to even be considering, let alone attempting! What happens if my body gives out before I reach that lofty goal? What happens when my world comes crashing down around me (knowing as I write this that it is a very real possibility)? I'll need you then. All of you - the only ones who have ever understood... At the place that has always been there for me since I found it. (and pulled myself up from the depths of self inflicted hell...) So yes. I'll be willing to take on any task, pay any fee, work any code, spend hundreds of hours... To keep this site here. For me. And for everyone else who dreams of having a favorite, well-worn shirt. |
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Post by upnorth on Apr 14, 2010 7:22:23 GMT 10
Hi Ms B.
I've been thinking a lot about your question on the forum and in what format or how it might continue (or not).
While I am one of the people who have petered out my attendance lately, at the same time I would be sad if this forum was gone. It has been a real help to me throughout this illness.
Like Argyro mentioned, it's the one place I can come where I know they'll be people who understand. The people I've met here feel like real friends to me. I've tried to be part of a really busy forum before and due to illness (lack of energy) and lack of a friendly feeling that I get here, I quickly disappeared. I think we will all go through periods of being more busy on a forum due to health and life, but I hope that this group continues in some manner.
That being said, I'm not the one doing all the work to keep it going. So if it's too much, you should pass it on, or let it close down. We can find another way to be in touch. However, if Argyro and Fae Kitty are offering to help maintain it, I'd still be a member and gladly stick around. Maybe there is something I could do to help manage/monitor the forum as well? I would be totally willing to do this!!
I'm really grateful that you started this in the first place and given me a "home" where I can share some of my struggles with this illness without being judged. Thanks.
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susana
My Second Home
If I can build a bridge to somewhere, its better than a fast train to nowhere.
Posts: 511
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Post by susana on Apr 18, 2010 4:04:19 GMT 10
Greetings, Ms. B, Fae Kitty, Argyrosfenix, UpNorth, and all of our newer members and anyone I left out. (Still miss you, BEN.)
So sorry I've been away for a while. Extra responsibilities caring for elderly in-laws plus all of the gardening tasks that come with Spring have had me a little swamped. (Don't worry, I have help with the in-laws... wouldn't take that on by myself!!!)
I agree totally with Argy about this site and what it means to me in coping with my illness. Also understand totally about your need to be out from under it, Bons. But if Argy and Kitty can take it over, I would certainly be willing to help in ANY way I can, and Upnorth said she will too.
All I can say is, if the site goes away, I have GOT to have a way to stay in touch with everybody, be it e-mail, IM, Facebook, or whatever. Sometimes there is just no substitute for the understanding, caring, and feedback of a fellow Butterfly.
Ms. B. if you move the site to your other forum, even though it will be less for you to upkeep, it will still not be letting go of responsibility for it, which doesn't sound like would be in your best interest.
It's a BUTTERFLY... LET IT FLY.
Love you lots, and much gratitude for all that you have done here. - - - - -Susana
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Post by Fae kitty on Apr 18, 2010 7:56:57 GMT 10
No need to apologise Susana. Sounds like you've been very busy indeed! Great to "see" you again though |
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