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The UKFibromyalgia Forums • View topic - Am i being too sensitive?



Am i being too sensitive?

Find a support group in your area or find out if there are others with whom you could start up a group.

Moderators: perseus, *Lisa*, FluppyPuffy

Am i being too sensitive?

Postby TJ2010 » Wed Mar 09, 2011 4:42 pm

Not sure if this is really in the right section but ive been looking round for a while and i'm not really convinced where it should be so i'm posting it here and if its in the wrong place i'm sure the mods will move it....

What should a support group be like?

I've just been to my first one and im not sure it was quite what i expected....

Everyone there was more mobile than me! i know fibro affects us all differently and it can be invisible but i didnt expect to be the only one there whos fibro was visible and it made me feel like i didnt really fit in. I found myself desperate to fit in cos they must have 'the secrets' to getting better treatment and/or managing their condition.....

The guest speaker talked at length about fibro stuff and passed literature round for us to look at whilst listening to her.... and i'm not talking one piece of paper - i'm talking booklets and booklets of stuff! Considering the speaker is also a fibro sufferer i found it strange that she was expecting us to mentally process spoken and written info at the same time??? :yikes:

The group leader had her partner with her and then her dad turned up halfway through.... Dont get me wrong, i know men too can be sufferers and that would have been fine but they dont suffer from it! Presumably they were there in support of the group leader and if it had been her first meeting i could have understood this.... I went along expecting to be in a group of fellow sufferers and the partner chipping in his two penneth was annoying because although he has experience of caring he has no experience of the actual illness so it felt wrong for him to be joining in. The dad just dominated the guest speaker until the session was over, making it impossible to ask her any questions...

Am i'm being overly sensitive? is this how support groups are? :dunno:
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Re: Am i being too sensitive?

Postby shazq » Wed Mar 09, 2011 8:45 pm

Hi
I have never been to a support group meeting but do meet up with fibro friends for lunch and a chat which i find more relaxing than the sounds of your meeting, i guess it depends on what you want out of it.
Next time you go ask some of the other people if they would like to meet up for lunch, thats always a good way to make new friends.

I met my fibro friends through a pain course at our hospital and we have kept in touch.
Dont let the 1st visit put you off, go again and just mix in. :goodluck1: :coffee1:
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Re: Am i being too sensitive?

Postby denys » Wed Mar 09, 2011 9:31 pm

As Shaz says give it another go and then make up your mind, I dont suppose they have guest speakers every time so it might be better next time :hugs: :hugs: :hugs:
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Re: Am i being too sensitive?

Postby loubie » Wed Mar 09, 2011 10:49 pm

you could have caught a bad one :yikes:
like shaz and denys says go again, it could be a lot better next time
i haven't been to one, don't even no if we have one here :dunno:
its not nice doing things for the first time on your own anyway,
like first day in new school :yikes:

hope you give it another go :hugs:
loubie xx

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Re: Am i being too sensitive?

Postby nutty1 » Wed Mar 09, 2011 11:33 pm

i not been to one ,but wouldnt of liked what you witnessed today ,maybe it was one off so like others say try again and try what shaz says :fingerscrossed: :hugs:
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Re: Am i being too sensitive?

Postby BarbaraAnn » Thu Mar 10, 2011 10:34 am

I think it's much better that there are those in a meeeting who don't have FM..the group leader may have with her partner and dad helped set up this group and I can't see anything wrong with them being present.
They obviously don't feel the pain but would have been there for the group leader during her very bad days and seen first hand what he did .
I myself would not want to attend group meetings because they would just make me stressed, I prefer to keep all stress at bay. :goodluck2: to whatever you decide to do regarding meetings. :fingerscrossed: :fingerscrossed: for you.x
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Re: Am i being too sensitive?

Postby keanolulu » Fri Mar 11, 2011 12:01 am

TJ,

I'd feel the same way as you I think. I haven't been to a support group but have found about one and was thinking of going. It's in a few weeks so there's plenty of time to talk myself out of it :wink:

You've got nothing to lose by giving it another chance to know for sure if it's something that might help you.

Personally I find it hard to mix with groups and new people, it seems to bring out my worst autistic qualities :crazy:

Maybe this forum is a more convenient and concentrated source of info and support than actual groups? Though I do worry about offending people on here too. Another autistic thing being blunt/tactless/unintentionally offensive... :twisted:
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Re: Am i being too sensitive?

Postby Ldyalb » Fri Mar 11, 2011 12:12 am

Kean - I have the same worries being on the spectrum, albeit mildly. Sometimes the internet is easier as you can delay a response but it is hard if you can't see that someone is getting annoyed. I wouldn't worry too much though, we all get brain fog so everyone will appreciate that an unusual post can sometimes happen unintentionally and I'm sure if you accidentally upset anyone or caused offence people would let you know and you can explain it was an accident. These things happen sometimes but we're a nice bunch so people will accept an apology. Plus I can only think of one incident in my time here when someone has been upset by someone else so it's very rare anyway. I think we all get along nicely, especially compared to other forums where people get absolutely flamed for offering a different opinion.
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Re: Am i being too sensitive?

Postby Emerald » Fri Mar 11, 2011 10:47 am

I must admit me as Chair am guilty of giving umpteen handouts sometimes, the reason we print them off and hand them out tho is so as they can read over them when they feel up to it. We send the minutes out via email and then hand out a printed copy of the last ones at the next meeting just to back that up.

I am one of the worst in my group for mobility and use a powerchair when I can crutches the rest, ive never seen that as a problem tho and if we arrange any trips etc they consider them from my point of view then the rest just slot in instead of the other way about which ive heard of others considering the majority instead of the minority, doesnt happen at our group. If you walk in tho when im sitting you wouldnt know to look at me which is what they mean by invisible illness, till I produce the crutches from under the table to get up.

We also welcome carers, friends or any one who supports the CFS or FM sufferer, they need suppoert and to learn to understand about the illnesses too and we should be praising them for taking an interest instead of so many others who disbelieve and make sufferers feel alone and like carp basically. Its nice for the carers etc to join us as members and benefit from relaxation, relaxing trips out etc too, they need support and to learn whats out there to help their loved one and to learn how to take time out for themselves too.

I hope with me explaining above why we welcome carers etc explains a little more as to why what you said I didnt bat an eyelid at about her hubby n dad turning up. Us lot at our group are kinda like an extended family and ive never met such a lovely bunch of people who least deserve these horrible illnesses.
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Re: Am i being too sensitive?

Postby bigbeartracey » Sat Mar 12, 2011 12:50 am

I am really sorry to hear that your meeting did not get what u wanted to get out of it u probaly had so many things u wanted to say or ask about and cause u could not get to ask anything it might have got u a bit up tight . I have never been to a meeting before but I would give it another go my life line is this sight been coming on here a few weeks now everyone isso careing and understanding wishing u lots of luck x Tracey x
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Re: Am i being too sensitive?

Postby TJ2010 » Tue Mar 15, 2011 5:56 pm

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Re: Am i being too sensitive?

Postby Emerald » Wed Mar 16, 2011 2:46 am

Nope not how we do it, if speakers bring things its so people can take home to read as we make sure they are aware of our problems taking things in or being able to read stuff on the spot.

As for the carer thing id ask but tbh id be glad they were taking an interest, I have no family support.

Everyone is affected in different ways, its a very personal and individual illness. I used to be the worst one in my group, it did feel a bit strange but I realised I cope a lot better than most in other ways including not being tied to medication day in day out as I have a natural high pain tollerance. That doesnt mean im in less pain than others or not in constant pain. Pain is also an individual thing and everyone copes differently with it.

When I was the newbie in an established group I felt like a spare rod for a while, when I got the chance to do summit about that so no newbie felt like I did I hope ive achieved that. 1st meet and 1st point of contact I know is vital as to whether people feel at ease and welcome to any type of support group, yes we have had the odd 1 or 2 say everyones lovely etc but groups just arent for them, usually due to other anxiety problems with getting there in the 1st place. For some getting to group meetings is a big thing, I know for me it was back in my early days, now its just 2nd nature and as for the Chairlady position it keeps me busy and takes my mind of pain, fills the void on insomnia nights like this and makes me feel in my own little way im spreading the word with each person I contact who knew nothing about CFS & FM.

We have also had people come to us after going to further away local groups because that group just wasnt for them. I just hope you find what your looking for without my support group I doubt I would be here now as I felt no one understood, everyone was just telling me to deal with it, how can you deal with it when even the Docs dont really know what IT is!
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Re: Am i being too sensitive?

Postby TJ2010 » Wed Mar 16, 2011 3:50 pm

Thanks Emerald, you have actually made me feel a lot better about it - not sure how but you have.

From what you have said think it could be that i'm being a little too sensitive about everything and not really giving the group a chance and thats probably because, if i'm honest, I dont really think i'm a support group type of person.... I really want to be cos i could do with the social interaction instead of sitting here day after day on my own and no disrespect to you guys on here cos you're all great but an online support group just cant give me the face to face contact that i desperately want.

I may give it another go and perhaps try to keep a more open mind and if i still dont like it then maybe i'll look at one further afield... I've just looked at your group Emerald and i'm only a 30 min drive away from there :o so maybe i'll turn up there if this one doesnt work out :woot:
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Re: Am i being too sensitive?

Postby denys » Wed Mar 16, 2011 4:08 pm

We all need some sort of social interaction and you are right online does not give this, sounds as though Emeralds group would be good if you can make it there and then maybe you can make friends like Shaz suggested and have people to meet up with outside the group setting for coffee and a chat :fingerscrossed: :fingerscrossed: :fingerscrossed: it goes well for you and :goodluck1: :goodluck1: with it all :hugs: :hugs: :flowers:
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Re: Am i being too sensitive?

Postby Emerald » Wed Mar 16, 2011 5:19 pm

No probs TJ glad you could make sense of me, I struggle at times but I do try lol. 30 mins away isnt much takes me 20-25mins depending to get there myself and theres a few members down this end near me. We have had people come from Sale as the group was reccommended by a GP over that way.

You would be more than welcome to give us lot a visit and see if you like us.
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