Just come across a post from years ago about a new diagnosis and there was a link to all the lupus publications. The one referred to in the post was 'my lupus, what you need to know' and was recommended as being a good one to give to family etc so that they can begin to understand - not easy to explain as a newbie when you don't really understand yourself yet so very useful, I thought. However, I have just had a look at the list of publications and can't find this one. Am I looking in the wrong place? Does it still exist? If so, where can I find it, please?
Thank you.
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Whippet_lady
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Yes, it is very hard to explain, but LupusUk is great for resources, and you'll find someone on the forum willing to lend a hand most times of the day!
No, I still can't see it. I can see one called 'My lupus, what I need to know. A young person's guide' but that's not what I'm after. I want the one called " My lupus, what YOU need to know" - something I can give to my kids, elderly parents (who don't do internet so I'd have to print out and post somehow), husband or anyone else who wants/needs to know/understand more about the condition.
The lupus.org.uk search engine doesn't come up with anything either. And the Living with Lupus: Family and Friends tab has a couple of short youtube clips, which are no good for my parents, or very portable, but nothing else. I just want a leaflet I can hand to anyone who wants/needs to know so that I don't have to try and explain something I'm still coming to terms with myself ad infinitum.
Also, I've looked at the spoons thing. I think it's a good way of explaining how you feel to some people but you have to be of a certain mindset to take on the concept and my no-nonsense, straight-talking, stiff upper lip parents in their late 80s, who don't do emotions or 'flowery thinking', wouldn't get that sort of analogy. Come to think of it, I don't think my husband or kids would take something like that seriously either. We're a cynical lot!
So, still looking if anyone can point me in the right direction. Thanks.
If you contact Lupus UK we can send you a free hard copy of any of our booklets. If you provide your parents address we can post the booklet to them directly. Best wishes Kevin
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