LUPUS UK
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Hi ya :)

Hey my names Emma I'm 32 and was diagnosed with sle at the age of 14 . even now after all these years I'm still learning about it and how differently it can affect people and still even now its hard to accept I have something that will be with me for the rest of my life.. I think the hardest part is when I'm having a flare up and the realisation that I'm limited to what I can do unlike others who don't have lupus...so I'm hoping that I can share my thoughts with others who know exactly what im going through :)

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Welcome Emma!

Look forward to hearing more from you :) Hope you find support and help here

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Yep I know what you mean Emma. Ive had it for quite sometime now and the fatigue and stuff becomes the new normal. But when Ive had a run of what I think is better health, I then look of something like Fb and see old colleagues, who are still working, running etc and I have to sit down after putting the washing in, I think that could have been me.

But I could have been worse as well. I also sometimes on the rare day I wake up and pain is minimal and I think, Its gone. I wish.

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I feel and think exactly as you have said , I still yearn for who I was and what I could be doing and struggle to move on from that ! It is worse when I might of had a few days of better feeling and health so a reminder of how I could be feeling full time - I agree FB can be something that makes me feel down and I did come off it for quite a while and even now only look on it when I feel strong enough . I know I could be worse and have to be thankful for what I have but do still have dreams of a pain free energetic life again - best wishes

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Hi Emma32xx,

Welcome to the LUPUS UK HealthUnlocked Community!

I am glad that you have found this forum as this will allow you to connect with other people who have lupus as well as help you share your thoughts and emotions with others. We have a lovely community who are always supportive and ready to help!

If you live in the UK, you may be able to join one of our Lupus Support Groups where you can attend social events, make friends and spread awareness lupusuk.org.uk/regional-gro...

If you would like someone to speak to, I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk .

We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

Please keep us updated, wishing you all the best.

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Ah thank you hun that would he great :) I am from uk its nice to be able to talk to others who completely understand what I'm going through x

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Welcome Emma!

I joined this group around the time of my diagnosis (November last year) or maybe just after - and it’s the most wonderful collection of caring people I could ever hope to “meet”. We all know what you’re going through and everyone respects everyone else’s various symptoms. You won’t find a kinder bunch of people. Whenever I feel hopeless or hard-done-by I come on here and am always humbled by everyone else’s experience of this cruel disease.

Lots of love

Betsy

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Ah that's exactly what I need...it really frustrates me that some people who don't have lupus can be so ignorant because in their eyes I don't look unwell so I can't be ill...wish people would just take the time to look into lupus and maybe they'd be a lot more understanding x

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Ah I’m sorry that you have lupus .I do understand as I have lupus plus other problems and yes I’m still angry at the world that I have it ! and yes I still find it very hard to pace myself. We as lupies tire very easily and it’s not easy but you will have good days inbetween the bad ones and I think you must focus on those instead.. if you can. It does take practice but you will get there. It’s great you have found this site because it will bring you into contact with so many others who maybe can help you in some way . Hang in there and keep writing it’s great to get down in writing how yr feeling it’s a good therapy and will definitely help you . Take care of yourself and chat again soon. x

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