Lupie Talk - Starting Women Only Chat Group & Book/Film Group (Men and Women)

[Bellaflowe]

Good evening, everyone.

I've written a few posts over the last few years whilst undergoing diagnosis and treatment for CNS Lupus. I've had lupus nephritis for 14 years and after dealing with that as an 11 year old, I just got on with everything. I had my flares, my dark days and my days when I felt like I could finally be 'normal', although that never lasted long! I've been in denial so many times, pushing myself to breaking point when I should have listened to my body instead of my pride and my friends. But, it's hard isn't it? When you want to do something and you simply can't. It's tough and it's painful and it's heartbreaking. The last few years have been hell, and I mean real hell. Being so terrified of suffering that badly again, that it feeds your anxieties and insecurities like a three course meal. I've been in pain that I can't even describe. My personality completely changed. I had migraines so excruciatingly painful that I couldn'the open my eyes for days on end. I spent every day doing nothing and feeling like such a failure. I've been there and I know that so many of you have been there, too.

I want to open up a platform to talk about our daily lifes. Our illnesses and first world problems. Our friends and family who may think they know better or who have supported us and deserve praise. Our failures and our achievements. AND MOST IMPORTANTLY - Something every day which makes us smile or laugh. Be it a cup of tea first thing in the morning or your child saying something funny.

First of all, I want to ask - Does anybody live in Edinburgh, The Lothians or in the surrounding areas?

Secondly, I want to ask - Would anybody be interested in starting up a girlie chat group on here or a Facebook page to share our daily lives? The bad, the good and the funny? (As well as still being able to share on here, of course! I'm not trying to redirect you from this wonderful site! Facebook is a bit easier to access for some people to talk, share photos and have scheduled daily chats with all of us!)

- Just wondering if anyone would be interested in starting up a page for women with lupus. I don't mean to exclude men and I do apologise for that. The reason I want to begin a 'girls only' group, is because there are certain health problems caused by lupus (or 'sister illnesses') that are a bit sensitive for some of us to talk about around men, like being unable to have children. I want to form a group where we can talk about everything that troubles us, healthwise or otherwise, in a safe and supportive environment. Women together. Please do let me know if anyone would be interested.

Also, if everyone is not already asleep due to the essay-like length of this post, I would like to propose another idea. Due to my lupus, I have a lot of time of my hands. On my bad days, my joints are too swollen to walk or the butterfly rash on my face makes me too insecure to go outside (due to people pointing and staring when I do!) I've always loved reading and watching films, and when I'm having a bad day (as described above), I love to lose myself in a good book or film. So, would anyone like to join a book/film group if I set one up? I was thinking of beginning the book group with a book I've been meaning to read for ages. It also happens to be one of my all time favourite films. STARDUST. Any other suggestions welcome! Let me know if you'd like to join and I'll happily set up a group. When life gets tough, travel to another world filled with mystery and magic. Yes, I did just say that extremely cheesy line.

So girls, please let me know. If you have any ideas you'd like to propose, please do! I'd love to hear from you. Even if you don't want to join anything, just chat with me. I'm always looking to meet new friends!

All my love and hugs,

Suzy. Your fellow lupie sister. X

[Author_ink]

Wud luv 2 join u. We need all the support we can get. U R amazing

[Bellaflowe in reply to Author_ink]

Hi! Thank you so much for your reply, it's so kind and it made my day. Just to say, I've whipped up a Facebook page for us all to have a good chat on! It's called 'The Butterfly Sanctuary - Women with Lupus UK'. Please join the page, it would be lovely! If you have any friends with lupus, please invite them too! Look forward to chatting with you soon Suzy xxx

[lonelyone in reply to Bellaflowe]

Hi. What if your not in the UK?

[Bellaflowe]

Hi Ladies. Just to say, if anyone else would like to join my facebook group, please do! Search 'The Butterfly Sanctuary - Women With Lupus UK' and you'll find it. If you have any friends with lupus, please invite them to join the group also! I haven't written any posts yet - didn't really want to have a conversation by myself since I'm the only member at the moment! Haha! Please join in and we can all introduce ourselves When you join, perhaps just write a wee post about yourself, so we can comment and chat, however there's absolutely no obligation to do so. Thanks so much ladies, look forward to chatting soon!

Suzy xxx

[Author_ink]

Where is the link to join

[Penguintaz]

Hi I don't know how active this still is? I found the page and would maybe like to join

[Bellaflowe in reply to Penguintaz]

Hi there!

Thanks for your message. I did actually set up the group and people joined, but noone replied to my post. I would still love to get this group going (as I still haven't read Stardust...) so if you would like to join, please do. I'll send you the link for the group. I'd love to get things going again.

This is the link - just copy and paste it into Google and it will come up:

@thebutterflysanctuaryLupus

Would love to see you there! Please don't feel shy - write a wee post to say hi! I realise that just rhymed... It would be lovely to talk to you!

Speak soon!

Suzy

[Penguintaz in reply to Bellaflowe]

Thank you Did a quick reply, it will be nice to discuss, I liked stardust the movie but have not read the book! XX

Oh also I am part of Lupusuk, it is very active not sure if that would help you reach more people

[Bellaflowe in reply to Penguintaz]

Hi Tazmin! Have just replied to your post on Facebook. Thanks so much for that! Will need to check LupusUK as I'm not sure if I'm a member on that or not, and if so, whether I wrote a post about The Butterfly Sanctuary. If you're friendly with a few people on there, it would be much appreciated if you could tell them about it too. Looking forward to chatting with you more!

Love and hugs,

Suzy xxx

[Penguintaz in reply to Bellaflowe]

You don't have to be a member of LupusUk to join the health unlocked forum I will see what I can do though! All there are very friendly, the word shall be spread.

A bit weird to talk to you on two social platforms but to seems to work for now! Xx

[Bellaflowe]

Hi,

Not sure if anyone will still see this post, but if you have previously joined 'The Butterfly Sanctuary', I'd really love to get things started again and begin our wee group where we can chat and talk about anything AND have a wee book group, as well. Please reply if you're an existing member or new member. Would love to chat. To find the group, simply copy and paste this (or type it) into Google:

@thebutterflysanctuaryLupus

Hopefully see you there!

Suzy x

[Hidden]

Hi! I’m only 15 so I am aware that the group may be for older women but I would love to join! I feel it would be good to be involved with people who are experienced this longer than I have and maybe help me out Abit. Amazing suggestion and everyone with lupus is grateful for support!

[Bellaflowe in reply to Hidden]

Hi there,

Lovely to meet you I did set up a group and quite a few women joined, but I found that the most of them didn’t want to join in (which is absolutely fine, of course), so when I was too ill to contribute to the group it meant that nobody else would. The group page is still active and I have been thinking of trying to get it going again, but I am also available to talk with you one on one, if you prefer. I know how difficult it is to have lupus when you’re in your teens - I was 11 when diagnosed - and I’m 27 now, so I have 16 years of experience with it. I’m very happy to chat with you and answer any questions you might have I actually met my best friend on Health Unlocked and it was when she sent me a message after seeing one of my posts. Having someone to talk to who understands what you’re going through is invaluable. Do you go to a lupus support group? I’m Suzy, by the way