Hello, I just want to say thank you to those who supported me when I needed it and made me feel welcome. I only been here for a lil over a month and just recently been diagnosed. I appreciate those who have supported me it means more to net fan you know. It really hurt me though when I had posted something in one of the groups and I was really going through a really bad flare and no one reached out to he at all:( I was really disappointed and discouraged about it. It makes me think different about this group and the Support that I thought it was good to give. Forgive me but it’s kind of disappointing. Also I tried to talk to a couple people because I needed someone to talk to and I just was ignored. Just think if you were in my shoes and how you’d feel. Do into others right the way you would like to be treated. Again Thank you to all that care and God Bless.
As I understand it, the Main Room or Chat Room has a list of folks on the left in an outlined box who are online. It doesn't mean to say they are in the Main Room & ready to chat.
I hardly ever go to the Main Room. I usually am on here to answer questions if I feel I can.
Ask a Moderator they know a heck of a lot more than I do,
Thank you so much! I appreciate your help.1 Like
Hi Janelle,
I'm sorry that you were disappointed with responses to one of your postings during one of your bad flares. FYI: the groups are offshoots of this main discussion area and are not frequented nearly as much or as often as the main discussion page. Sometimes people go for weeks or months at a time without posting on them or checking them for messages. That's one of the down sides of having offshoots of this discussion board, but they really are meant to be ancillary to it; in other words, they are kind of like the icing on the cake, very yummy when you get in and find someone to talk to but not nearly as popular or busy as the main discussion board. The frequency, etc., is entirely up to the folks who go there and there really is no set time for people to come on and read your posts.
As for the chat room, that too is voluntary and open to whomever wants to be on it but it doesn't mean that people will necessarily be on it at a given time. Although a person may "show up" as being "on" the chat room board, it only really means that they are somewhere on the fibromyalgia site and have not disconnected from the chat room. Moderators are not necessarily on there as it is a voluntary site, as is the rest of this entire place.
I find that sometimes I have to try again if my discussions go unnoticed. So I will bump it up to the top of the page by posting a comment to say "bump, looking for comments," or something like that. But at the end of the day, we're all going through exactly what you're going through, the pain, the fatigue, the depression, the flares, etc., etc., so we can only do the best that we can do. And as you know, that can be quite limited by our illness.
I hope this makes things a little clearer so you don't feel so bad. I think sometimes people forget that we're not a big site underwritten by a corporation, with paid moderators and bloggers, and can be disappointed when we aren't responding as one would on one of those websites. The good side of it is that no one's paying us to be here so we're not pushing an agenda!
Hugs, kiddo,
Petunia
Thank you for helping me understand this site a lil better:) my apologies if I went off the hook. Thank you for being there I appreciate it.
No problem! I think maybe some of the places should have a brief explanation of how they function as you enter them but am not sure how to do it. I am not a techie at all! But I wanted to make sure you knew that we really are just a Mom and Pop site - which has a lot of ups and some downs. I know that people are so used to corporate sites that can do everything except feed the cat that it seems odd to come to a site that is run strictly by volunteers. The thing is that this is one of the best run fibro sites I have found and we make it SEEM like it's a corporate site because it's so well run. So when people come across one of the "speed bumps" on the site, they are surprised as heck! But this is why things are as they are here.
Hugs,
Pet