LUPUS UK

New and Alone

naziamuhd
Posted by naziamuhd
5 Feb 2013
9 comments

The funny thing is that I am 22 and male. I was diagnosed with lupus a year ago and have become the laziest person you ll ever see. People dont understand me. Nobody knew my condition. The worst thing is that even my family dont understand me. People jst dont get it.
Im new here and I just want to meet ppl who knows what Im going through.
PS: I have never met a person with Lupus. So it is just only me all this while.
I lived in Nigeria but have now moved to North London for studies.

I would like to meet ppl who are close to me.

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9 comments

luppychick
luppychick
5 Feb 2013
Your not alone now sweetie welcome. I look forward to your posts and would love to know more about you.

Luppychick x

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wood
wood
5 Feb 2013
No you are not alone and I understand what you mean when you people dont understand you its difficult for us to understand us but we are here for each other with support and understanding and speaking for myself Im glad you found us.
I look forward to hearing from you and yes would to know more about you ,WELCOME
Judith

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Paul_Howard
Paul_Howard LUPUS UK
5 Feb 2013
Hiya,

If you're interested there is a group of young people with lupus (16-24) that meet in London every couple of months. There are a couple of other young men with lupus that go too. You'd be more than welcome to come along to one of the meetings. If you'd like more details, please either email me at paul@lupusuk.org.uk or check out this link - lupusuk.org.uk/young-people

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Silvermyst
Silvermyst
5 Feb 2013
Hi there, I think we can all empathise with this, we look OK so people presume we are OK, when inside we most definitely are not OK! Raising awareness of Lupus and Lupus related conditions is so important...

Please contact Paul at Lupus UK and he will be able to point you in the direction of your nearest meeting, and have a look through all of the facts sheets on the Lupus UK website as there may be some information there that you can use.

The isolation that you feel is something that every person on this site will have experienced at one time or another, and that why we are here. To help, support and be a sounding board for people to offload.

Welcome to the site :)

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naziamuhd
naziamuhd
5 Feb 2013
Oh, thank you guys. I am sooo glad I found this site. Will be looking forward to knowing you all. Thanks

@Paul - That was a really nice site. Thanks. Will be joining in no time.

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Paul_Howard
Paul_Howard LUPUS UK
7 Feb 2013
Hi. I'm glad that you like the site and hope that you'll continue to use it and find it helpful. :)

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uzi41
uzi41
6 Feb 2013
Hi... Getting friends and family to understand is very difficult. Especially when they turn around and say u need to get to bed earlier or if u are putting on weight, they will say you should try exercising......its good to talk to people on here, u learn so much too. Take care.
Uzi

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JJKANE
JJKANE
6 Feb 2013
You are not alone .. I am in bed more than out of it ... the fatigue is the killer for me... I had a very sharp mind but now I cant remember even the word shoes sometimes, you have to laugh or dry... I do both !!
Lupus is an unlucky dip of what will it be this week or today ... people don't inderstand ...
But it is difficult for us the loupies to understand let alone someone who has never heard of it ,,,
Sleep when you need to , walk if you can and just go with the flow of ...trying to fight it causes stress and makes you worse.

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naziamuhd
naziamuhd
6 Feb 2013
Thank you guys

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