pain....

[julia-rowland]

is really suffereing with pain feel like a suck record tryin to explain wat is wrong with lupus sle dle in lamens terms how do u explain it

[julia-rowland]

well sorry about the spellin there my hands are bad lol x joo

[Hidden]

i try not to explain it unless i have to, it depends who is asking and why, also i dont want to be defined by my illness but i do want awarness of lupus to grow. i sometimes say its non of your business, sometime i say i have a arthertic condtion, and sometime people get the i have lupus its an auto immune disease which means my body is attacking its self and can damage anywhere, joints etc.

hope this helps.

also its your body and your business dont feel you have to explain yourself if you dont want to, you have as much right to be on the planet a anyone else, sometimes its more some else problem than yours. hope this helps

[julia-rowland]

awwww thankyou ,it gets some days that especially when i have my inr checked and the occasional nosy nurse hasnt got a bloody clue it so frustrating i just think your a nurse you should have a idea especially nowa days thankyou as some days i do feel i am out there on my own but i know im not .

[NiksB]

I agree its up to you how you deal with this. I signed up to lupus uk and they sent a load of different leaflets, I have shown the leaftets to family and close friends. I noticed when i became ill i found people wouldnt touch me or sit near me and i suddenly relised that they thought it was contagious....... Some of the leaflets are brief and others go into more deapth so i think you can decide what you think is appropriate.

Good luck hope this helps

[Thaddeus]

Have you heard of the spoon theory? Look it up on the net.

[Hidden in reply to Thaddeus]

Very good it is too !!

[julia-rowland]

thankyou for your comments very helpfull ,i never heard of the spoon theory but defo look it up as mad as it seems you feel somedays your the only one till you get on a site like this which gives positive feed back thankyou as had a hard rough time of it it nice to have positive chat x

[julia-rowland]

hospital again next monday in out again lol i wonder ?my kids hhave been amazing i be soooooo lost without them xxx