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

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

11 Replies

  • I super down with a Facebook page! and sharing films Ive seen. I used to be a bookworm, but not at the moment. LOVED reading your post!!! you really describe it all well!


  • just wanted to add that a face book page would really get the word out on lupus also! Lets do it!

  • Hi Marie! Thank you for your lovely comment! Facebook page all set up and ready to go. It's called 'The Butterfly Sanctuary - Women with Lupus UK'. Once we've all been introduced, we can start a wee film and book club. I'm so looking for an excuse to watch Stardust again! Look forward to chatting with you more :) Suzy xxx

  • Go with that Facebook page 😀👍

  • Thanks so much for your reply! Facebook page all sorted - details below! Look forward to chatting with you! Xx

  • Hi there! Thanks for your comment! Just to let you know I've set up the Facebook page. Search 'The Butterfly Sanctuary - Women with Lupus UK' and please join in!

    Suzy x

  • Add me on Facebook :)

  • Hi Jo!

    Facebook page all set up and ready for ladies to join! Details are below on this post. Would love to add you on fb, but don't know your name! Add the girly chat group - 'The Butterfly Sanctuary - Women with Lupus UK' first and then I can add you! :) Look forward to chatting soon! Xxx

  • Hi Ladies! Apologies for the late reply! I'm choked with the cold - fun fun fun! Just to say, I've whipped up a facebook page for us all. 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! 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. Thanks so much ladies, look forward to chatting soon!

    Suzy xxx

  • P.S. It's named 'women with lupus UK' simply because I'm based here and not to confuse it with a similarly named page in America! I'd love women from all around the world to join! X

  • Sorry but I can't find me lol