I’m sitting in the hospital foyer with the display my hubby and I set up last night. I’m not allowed to place a donations box on the table (hospital policy) so it is information only. When I arrived this afternoon I found several leaflets have gone already along with 2 badges and 2 car stickers, so that’s great. Three people have stopped to talk to me so far and Kirsten who is in charge of the table bookings came to meet me and has asked if she could put a picture of the table on the hospital’s Facebook page! 👍🏻 She sure can!!😁 I declined being photographed with it however as I’ve had a stalker in the past and who wants to see me anyway?
The table is booked from today until tomorrow evening but as nobody else has it until Monday I’ve opted to keep up the display until Sunday afternoon when it will be easier to park at the hospital too.
I’m so pleased it is raising awareness as we have no local support group here so those with Lupus are probably those who are taking the leaflets entitled “Need to talk about Lupus? “
I’ve been suffering a lot of fatigue the last few weeks but this display and the interest has given me a sudden boost.👏🏻
I just hope I have enough leaflets etc now to keep it going until Sunday. 🤞
Merry Christmas to everybody! 🥳
Written by
Spotty-ewe
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Thanks Carol. I was just talking to an 87 year old lady in a wheelchair and her daughter who says the old lady had Lupus in her 50s with organ failure but miraculously recovered and has never looked back!! There’s hope for us all!!
Thanks Kevin, I’m enjoying the experience. I’ll be back for another 3 hours tomorrow. 👍🏻👍🏻
Spotty (😉) you definitely are an inspiration! 👏👏👏👏 Will you be there yourself all week? Ok, you definitely should have been in the picture! You would have shown the world that beautiful people get Lupus!
Ok, we need to hear more about this stalker! 👀
But great work Spotty👏👏👏
Can you come to California and do the same🙏 I wouldn’t be brave enough (plus, mine is only ‘pre’ or latent Lupus.) and you’d have a place to stay for free 😁. Kidding aside, seriously such a great thing you are doing.
Aww Brook, you say the nicest things! 😘 I’m blushing now or is it a rash?😂😂
I’d love to come to California to do the same thing, but I’m sure you would manage it yourself.😉 I’ve found the hospital staff very friendly and supportive, and the people passing by all glance at the display even if they don’t stop to talk. 👍🏻👍🏻
Give it a go if you possibly can, it is SO rewarding. 🥰
You are so right CCW about raising awareness and also providing information. The most common comment so far has been “I’ve never seen information displayed about Lupus before!” I’m so pleased to have been the one to provide it courtesy of Lupus UK. 😁😁
Thanks Lily. Yes it did feel a bit of an uphill struggle locating and collecting the display board I borrowed from our village hall, and getting it all set up with the help of my long-suffering hubby who is awaiting ablation of his heart. BUT we’ve enjoyed meeting so many people who are grateful for the information the display is providing and it is very rewarding hearing all the positive comments. Merry Christmas Lily and I hope you have a happy and healthy 2020. 🤗😘
Thanks Stiff. Yes it has been very rewarding. 🥰 I’m glad nobody has commented on the crumpled tablecloth which has been so many years in my cupboard and never used I hadn’t realised how creased it had become until I spread it on the table!🤭 Oops!😳 Never mind luckily people seem more interested in the information and leaflets, bookmarks etc they can take away with them.😁 I even had a complimentary e-mail from my rheumatologist about the display, so that was encouraging too. I hope you are feeling a little better lovely Stiff. 🙏🏻 Take care. 😘💐
Table cloth looks fine 🤗 you showed your artistic side as it looks great, you did a grand job🙌🏻 Also glad to hear your rheumatologist complimented you 👍👌
This sort of thing can make the world of difference , others are right you are inspirational , I know you put a lot into this and arranging it so WELL DONE 👍🙌🏻💐🤗😍x
Thanks so much for the reassurance Stiff.👍🏻 You are an inspiration too battling on with all the ailments and symptoms you suffer and producing such wonderful works of art with your felting and other arts and crafts.👌👌 Keep soldiering on lovely Stiff, and have a wonderful Christmas! 🤗😘
😂😂 Thankyou lovely spotty, not done none for a while but will always try and do when I can for some sanity😂 hopefully the new year will bring some answers 🙈
Don’t go over doing it , and wishing you a great Xmas and best wishes for the new year 🎉Good luck for the rest of your display , Enjoy 🤗💐👍❤️
You are so kind C-aches.🤗 I’m finding it rewarding and enjoyable meeting so many people with an interest in Lupus.👍🏻 I would encourage anybody who can do so to do the same in their local hospital or health centre. It is SO worthwhile in every sense. Merry Christmas to you and a happy and healthy New Year! 🥳💐
Thanks Catblue. Good to hear your local group are placing information.👍🏻👍🏻 We don’t have a group in this area and I don’t think I have enough energy to attempt to start one, but my Rheumatologist kindly left info I gave her on a trolley in her waiting room until this display. It all helps! I hope you are keeping well. Merry Christmas!🥳
Merry Christmas to you too, I'm not diagnosed and kind of feel like a fraud (though an ill one) but when I read what some people are going through I realise I'm not so badly off. Your an inspiration to me
Thanks Catblue. You definitely are not a fraud - we all have different symptoms to different levels at different times. Up and down is the nature of this disorder (SLE in my case). But isn’t it great knowing we are not alone and that even though there are many suffering on this site they are always there to support us? 👍🏻👍🏻 It is a God-send.🥰 I hope you are feeling better soon. 🤞Take care 😘
This is a great idea and well done to you for your hard work. Anything which raises awareness of Lupus can only be a good thing. I find that most people haven't heard of it and even if they've heard of it, they don't know anything about it. Congratulations!
Thanks June. Yes, I’ve had the same experience of people not knowing what Lupus is hence one lady at Bannatynes asking me if Lupus was my dog!! 😂Most people who have stopped to talk comment that hey’ve never seen a display about Lupus before, so I’m glad it is raising awareness. 👍🏻 Thanks again June. 🤗
Well done! Your stand looks amazing! I can't believe you are doing this in December, such a busy time of year. But then after being at the hospital today, it's so busy with people you might reach more than usual. Good luck and I hope that your energy levels stay high. Good work and we are all grateful of this kind of volunteering, makes a big difference to awareness, potentially people's diagnosis time and fund raising. Wendy x
Thanks so much Wendy. 🤗 You inspired me to have a go when you posted about having a table at your hospital with books to sell as well as providing info. Unfortunately my hospital doesn’t allow anything to be sold, or for even a donations box to be placed on the table, but it is certainly raising awareness and that is valuable in itself as you say. 👍🏻👍🏻 As well as appearing on the hospital’s Facebook page the display was also praised and applauded by my Rheumatologist who e-mailed me yesterday. So I was really chuffed about that.
Not as many folk around today as yesterday at our hospital but still several very worthwhile conversations with interested parties and more leaflets etc taken away. So still a great day. 👍🏻 Another 3 days to go so I’m hoping the leaflets etc will last that long! If not the posters are still informative. Thanks again for your inspiration and encouragement Wendy. Have a lovely Christmas! 🤗😘 Spotty💕
The display looks amazing. It is wonderful to hear that you had interest from people and that the hospital shared in on social media. Thank you so much for your time and effort to make this happen. Hopefully it has helped more people learn about lupus and LUPUS UK - I'm sure it has!
I have really enjoyed the experience and met a lot of people interested in knowing more about Lupus. One man after hearing what it entails even said, “It should be given to rapists and paedophiles - they deserve it!” Well I’ve never heard that comment before, but he maybe has a point.😂
A few people who had a family member or a friend with Lupus took a bookmark to alert them to Lupus UK as they were impressed with the booklets, DVD for newly diagnosed and my Progress Diary I showed them, and wanted their loved-ones to benefit from the same items and all the information Lupus UK provides. The display was up for 5 days and hardly anything was left on the table yesterday when we dismantled it. So I think it was very well received. A lot of people said they’d never seen a display about Lupus before and even my rheumatologist e-mailed me to thank me for the information the display provided.
It has been a real pleasure giving something back to Lupus UK for all your help, information, support and provision of this wonderful Forum. So thank you too Paul and to all in Lupus UK.
Merry Christmas to you all and a happy and healthier 2020.🥳🎉
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