Respiratory Support Group

[BrianTaylor]

Afternoon 😊

There doesn’t seem to be much in the way of support groups locally, so I’m thinking of starting one in my area. There is a new IPF group starting up local to me, but I was thinking of a more general support group.

It’s hard not feeling a bit isolated. Even though I am lucky enough to have a loving and supportive family, I still come here for advice, tips and support as you all have a deeper understanding and insight to non sufferers. I’d like to organise a face to face version of this group.

I’d like to eventually be able to invite various experts along for talks and information, and I’d also like to perhaps organise trips to local places of interest.

I’ve contacted Ben our BLF moderator, and told him about my idea, and asked if the BLF could support me with leaflets etc that I could distribute

Just wondering if any of you have any thoughts on this idea?

I know the BLF were running the BreathEasy groups, but I think they are in the middle of discussing the future of these groups.

I’d love to hear any ideas that you guys and girls might have, especially a decent suggestion for a suitable name! 😉

[Damon1864 Volunteer]

Hi Brian I think it's a great idea, Worksop where I live has the same problem with support groups. Good luck hope you get it off the ground. Have a lovely day and take care of yourself 😊 Bernadette xx

[BrianTaylor in reply to Damon1864]

Thank you Bernadette. I already run a small Buddies group on Facebook, and we try and meet fairly regularly. I’d love to meet up with others in a similar situation as me. They’d be welcome to bring family and friends along (not much support available for them either!) fingers crossed. Take care xx

[sassy59]

An excellent idea Brian and I do wish you well with it.

What about Take a Breath, Breathe, or something along those lines.

Good luck and hope you’re well.

Carole xxxx 😘💖

[BrianTaylor in reply to sassy59]

Hi Carole, thanks for your support. As I just told Bernadette, I already run a Buddies group on Facebook so I am tempted to link it to this? Maybe Breathe with Buddies or something. I dunno! 🤔😂

Best wishes to you and to Pete xxxxxx

[sassy59 in reply to BrianTaylor]

That sounds ok Brian, whatever you think. 👍

Very best wishes to you and your family. Take care xxxx 😀😘

[HungryHufflepuff]

What a great idea. I know what you mean. I too have a great family, and friends, yet I'm here most days hanging out with you all. It's not only for the practical advice and information, but also for the friendship. It's like here I don't have to explain things or hide things or justify or quantify things. There's like a shared deep understanding that sometimes you never find even after years of friendship with a person. So I think it's a wonderful idea to create a group where you do general stuff because all the getting to know and understand each other is done before you've even met. Wishing you success 😊

[BrianTaylor in reply to HungryHufflepuff]

Thank you so much for the support HH 😘😎

[Pam1952]

It sounds like a wonderful idea. The very best of luck with it. XXX

[BrianTaylor in reply to Pam1952]

Thank you for the support Pam 😘 xx

[Hacienda]

Hi Brian, Yes, it's a Great Idea. We are now well a established "Breathe Easy" Group in our local area, Created almost 5 years ago to support those of us who finished our Rehab 6 week course and finding Nothing to continue, we as a group of 6 set up By having a our meetings firstly in a Café, then Progressed to Asking our Local Tesco to use their Community Room, we don't pay, but we do gift them with a Donation from a Takings of Table Top Sales, and Collection/ contributions. We meet up first Tuesday each Month, Have 2 Exercise Classes each Week, we all pay £3 for this and that Pays our Instructor. It is very Successful. This Sunday we all go on a Day Trip to Whitby, Partly paid by our Breathe easy Collections. I am right Now organising a River Cruise with a fine Dining Meal on Board for September, we have done this Trip Before, Also we contribute towards the cost, for all members. The saying goes from "Little Acorns" . The group are like Family and very good Friends there is a Very Good Comardery . If you want to ask more, or even come along to Nottingham, you would be more than Welcome. Good Luck xxx

[BrianTaylor in reply to Hacienda]

Hi Hacienda. Thank you for your support. It’s really heartening to hear that you are doing something similar in Nottinghamshire. I have spoken to BLF through Ben and they have kindly offered their support. I would love to come to one of your meetings to see how you do things but I’m about 2-3 hours from you. I’ll definitely be in touch for more info if I think of anything. Thank you so much 😊😎 xx

[Hacienda in reply to BrianTaylor]

Good Morning Brian, Your Very Welcome. I'm always Here. love n Hugs xxxx

[Fleurbaby]

I would love to have one, locally in Auckland, New Zealand, but, kiwis don't really understand the disease (out of sight, out of mind), they don't like to open up and talk about things like this! Hence why I am on here most of the time.

It is a fallacy, about the generosity of kiwis! They are the stereotypical N.I.M.B.Y.s.

I know from absolute experience!

[BrianTaylor in reply to Fleurbaby]

Ah Fleurbaby, that’s such a shame. A visit to NZ has always been on my bucket list - in fact at one point some years back Sara and I considered emigrating! I’m really sorry you there isn’t much support available for you. At least you have us to share your thoughts and worries with. Take care 😊