Want to say thank you and I'm grateful.

[BetsieBoo]

I recently posted a question, as I often do when things get bad. I'd like to say a big thank you to everyone out there who replied and try to help.

I often feel very alone with the constant battle with lupus. Even after almost 15 years I still don't understand it - and so how can I expect my family too!!

I wish the NHS would recognise lupus for what it is and give us suffers some more support - just someone who can empathise and answer some questions would be a good help to me.

Whoops sorry gone into moan mode!

Again thank you all of you guys out there. Take care of yourselves and stay pain free xxx

[Thaddeus]

I think we can all relate to what you have said. A lot of illness's make their sufferers feel isolated, and Lupus has added dimensions with so much of it being invisible or difficult to convey. As you say, we cant get our heads around it, so how can those around us grasp what we are going through.

It took me 15 years to get a name for it. Before that it was something or nothing or whatever symptom I was dealing with on a particular day. Lots of pain and lots of self doubt.

This internet thing is a great boon for all of us with health issues, not least because we now know that we are not alone.

[BetsieBoo in reply to Thaddeus]

Yes I agree whole heartedly theddeus.

As lupus seems to be taking over my life I feel more and more isolated and alone. I rely entirely on my family - friends gave up on me a long time ago - I need soooo much rest and am in pain so often that a social life is impossible.

How do others cope? I think I need some major support - feel like I'm drowning and no one can see me!

[caldecote in reply to BetsieBoo]

Hi BetsieBoo, I have joined a facebook page called mctd which has really helped me it is from people all round the world and we say what is worrying us someone has bound to have had something similar and its good to chat with other suffers! Mixed connective tissue disease, is when you have one or more connective tissue disease ie, lupus, sygeons, r.a and all the other syndromes we suffer from. Please don't feel alone, we all get bad days and feel beat by the condition but with a good chat to some like minded people we can all help each other!

[Thaddeus in reply to BetsieBoo]

A good facebook group can go a long way. I have one if you want in. - Let me know.