Oh dear

I have only posted a couple of times on this site, when I have I have been heartened by the responses I have received, I much prefer to read through threads and postings as I do not feel confident enough to contribute, I am sadly considering my membership to this forum, as helpful as it has been to me as it does not feel like a safe place at this moment to be sharing such emotional stuff, and maybe that is the problem it is so emotional , pouring hearts out, sharing joy and sadness . Oh gosh I don't know anymore.

31 Replies

  • Really sorry you feel bad am newish to the site myself. Hope you are ok take care x

  • Thank you x

  • Please don't let this put you off staying, there are far more positives than negatives here. I have learnt to look past the negatives and focus on all the help and support you can get from this site. I shall continue to stay as I take courage & hope from a lot of the posts. Xx

  • Please!! Let me point out to you, there are hundreds of people here on this one site, from many countries, England, Scotlan, Ireland, Australia, so many I can't remember them all, and the USA. That's me for one.

    We don't always say where we are unless someone asks. Everyone is free to confide their innermost concerns about RA and how it relates to you and yours particularly. You can ask anything. You will always get an answer from someone, often more than a couple.

    You can moan, you can complain, whatever it is bothering you, we will help. You are also encouraged to say happy thoughts, good results, nice weather..we love positives too.

    You will find you develope friendships, that's just natural. It's so great to feel that so many people seem to like you and care about you, all in one place:)

    It's all worth far more than the nonsense generrted by only a couple people. Hang in thre, come back nd tell us how tings are it you. OK? Loret aka Lorann

  • Please forgive.my keyboard is drpping letters again!!

  • Lorran thank you. You have a big heart, you've dried your tears and you are looking forward, so shall I x

  • I agree with everything that has been said. please stay. any trouble like this is very few and far between.

    Lorann, I looked at the members page, there are an astounding 3493 members :)

  • Thanks Luthien, I know you are right, I guess that for me I read the posts daily and every single one of you mean something to me, I identify with you all and feel for you and with you, secret family, people who know exactly how I feel, where I can feel free to cry or smile or laugh out loud without upsetting my own family, who try as they might do not understand the daily struggle of not knowing who you are any more.... so when things go wrong here in this safe place it's unnerving makes me feel a bit wobbly x

  • it is unnerving lbtabby, but like any family or group of people who work or socialise together, people fall out. Thankfully, on here, this is fairly rare.

    I hate to read of people being hurt or upset, and of those who leave,

    other than trying to remind people of the guidelines that are put in place to keep us safe,there isn't a lot we can do.

    as others have said this is a great site where people support & encourage; share info, fears, worries - and positives! laugh and question.

    I have met so many wonderful people on here and found them very helpful.

    I would encourage people to stay.



  • Thank you Sandra, it's a new day the world is still turning and full of gorgeous people like you x

  • Ibtabby,this is the safest place to be.If there is anything amiss the Nras team will root it out and take it off and they will tell the offender why they have removed it.You sound like your going through the wringer at the moment,but don't let that stop you from posting on here,or replying to someone,if you feel happier just to read the posts well then do just that. There is nothing to say you have to post. As Loretta has said and she has put it better than i, and i have made some friends with some lovely people and some i will probally never meet as they are too far away from,but that friendship is very firm indeed. So don't leave just do what suits you best.xxxx

  • I will stay Sylvi, faith in the world restored, thanks to all of you , I would have missed you all badly, so thank you so very much for making me feel a part of you x

  • Good i don't like to think that some small minded people are driving good people like yourself away.xxxxx

  • Great decision :-) x x

  • TABBY, so glad you stayed.....this is an important site.....I'm hoping to become more known to others, so they can trust my comments, and become a valuable person on here, like the people that have replied on here to you.....I'm from the UK......East Sussex ....had RA for like ever .....will catch up with yu all on other posts xxx

  • Jill you are a valuable person on here, we all are. We all have valuable experiences and stories, funny or sad to share and my experience of this forum so far (I'm a relative newbie too, July) is how wonderfully kind everyone is Rx

  • Do come in..I've only been on it a few weeks..is reminds me that there are many others who suffer far worse than I. We all try to held and it is good to find someone else suffering a great deal,,,it is also very funny at time...I mentioned I like Eddie Izzard, I received May email telling me he was theirs'. So it's a race . So do try and join. It tools me weeks to decided. But am very happy that I did...you can go under a different "name) mine is truly fed up!!!! Do join dear x maryx

  • So glad your staying. Great information and support here. Super friendships.

    So stick around and you will be able to read one of my many poems. I often post a poem in relevance to how RA is affecting me and YOU. So pleased you've stayed on board. This ship willl not sink, there will always be survivors.


  • Hi... I havent been on lately because of hand problems so tying is a problem but like you, I know everyone on here because we read of their stories and can always apply the advice, or have an empathy for what the person has posted about.

    On every forum there will those who are just opinionated and cause problems but there are so few of them compared to the compassionate ones that its worth perservering. Just try to ignore those who you find push your buttons, it becomes easier the more you post and start to engage in the positives. Its your health that is the most important thing to you and the people here have so much experience with their disease that I think we newbies are lucky to have them helping us..

    I'm sure it will be much better as you gain confidence in the forum.

  • As to the original post, it is sad that on a forum devoted to self-help, we have to suffer trolls but I think NRAS have very effective policing which will deal with the culprits quite quickly.

    To netbuddy's point about hand problems and typing, I would advise using dictation mode on your computer. Windows 7 and Windows 8 have basic voice recognition built into them and they are pretty good. If you do a lot of work then you might want to consider investing in Dragon NaturallySpeaking which is the bees knees when it comes to dictation. I used it to create this post

  • thx a lot for that pb, I have a mac so I will have a look for a compatible program. I had often wondered if that would be good to use and it would come in handy during the day. Unfortunately I have a "grumpy old man" husband who funnily enough just came upstairs to complain about the keystrokes keeping him awake (night here) so I think me talking to the laptop would be out at night ...lol.. daytime sounds good though.

  • If you have Mountain Lion then use 'Dictation.' If you have another Mac OS you can get naturally speaking for the MAC. You can use a normal speaking voice which I would hazard a guess is less penetrating than hammering away at a keyboard. If he still complains just sneak a shot of bourbon into his hot milk! :)

  • Haha I like the bourbon idea :) ... ok I do have lion so I will check it out, thx for your help!

  • I use the on-screen keyboard and click on letters with the mouse.

  • Gosh that must be tiresomely slow!? You should give dictation a go. It can really speed things up for you.

  • I have problems were my voice gets very hoarse. I tried one once and it couldn't understand me. I coughed - it translated that into "I've had enough ".

  • It gets quite amusing when my missus bowls in to the room and starts talking to me before I hit the mute button. All sorts of rubbish appears.

  • Hello lbtabby,

    I have been a member of the site for a while now and after a long absence have been thrilled to get such a great welcome back from some of the old friends who supported me through good times and bad.

    It is all too easy to demean someone else's experience of living with this disease if it doesn't match your own but virtually all the response I have had here has been positive, compassionate, amusing and heartfelt and I have never felt judged.

    I hope that this will be your experience too and I look forward to getting to know you a little. Judy

  • Well said, all of you who are encouraging to tabby! I can only repeat all the positves here, I am still heartsick over loosing friends her. They also have problems with their RA symptoms and treatments andwish they would hangin here and continue, for heir own sake.

    We are being forced to ignore the nonsene directed at some, but have faith in the system. NRAS officers are on it and will eliminate the sources of poor behaviour.

    This is an awewsome group! We can even have virtual" dance competition, and the random, spontaneous gatherings for coffee and tea and cakes, and scones etc , on my front porch, in Ohio, USA! So much lighthearted banter,we can escape and forget, for a little while, the pains and handicaps we all share. For that little bit of a day, we can imagine being normal, sipping coffee or tea, on a porch with a group of friends.

    Everfyone who wants to join in these impromptue chats are so welcome. C ome join in the fun banter and babble :). The next time somene says " I'm going over to Loret's (lorann's) porch. It s not always me who sets the day. It's just like you decde to go over and vist your next door neighbor.

    Riht now I am putting up with a keyboard who drops letters and words. Thislittle toy wll be replaced tomorrow, if I can get a rie o t get one. See?

    I'm outof here...hang on everyone, you all are what makes thi one forum so opular. :)

    Loret aka Lorann

  • I always read posts and questions, i don'nt always reply .When i do i dread the thought that i might upset someone. I try to advise and support everyone, the same as i always get support and help from fellow RA and PsA people. If i have nothing to say that is positive , then i dont say anything. I also had a message about the abuse and i hope they do sort it. I hope everyone stays on this site as the advise and support would be missed by each of us .

    Stay pain free everyone and keep your chins up.


  • I am overwhelmed by the kindness shown to me by each and everyone of you, you are all fabulous , you know how to make a girl feel special, sending love and gentle hugs to all, Karin xxx

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