I can honestly say from reading the posts and talking with people who have lupus and my own experience, that this condition is a pain in the a**. on one hand there is similarities with all of us, on the other hand there is so many differences and individual " quirks". how can being so ill be so hard from start to finish, not just the illness, firstly you have to get the medics to understand your ill, get the tests, get diagnosed then get treated and hope it helps and you don't get a new doctor who does not agree what was said by the first doctor. then theres the emotional stuff, some of us get depressed, some anxious to the point you don't go out, or in my case have your mobile with you when you go to the bathroom because your scared to death you will collapse on the bathroom floor and be there for hours. learning to accept that the life you once had has gone, this is a new you and new life. then you have all of the family stuff, you worry about them, not being able to look after them as you used too, provide for them and make sure they are all ok.
then you have work, not sure whether im lucky still being able to work, no I am lucky as many of you guys cant work, and yes it is bloody hard.
then you have all of the other stuff in your life friends, trying to explain that what you once did you cant do any more, damn trying to explain what the illness is in the first place, having the possibility that they cant accept the new you or the illness.
and just to give you that last kick in the guts its sunny and beautiful outside and many of us cant go out because the lupus will flare.
as you can probably tell im not feeling my best at the moment, but I am Lucky, I am here, with a good support network and have good medics looking after me, and options for treatment.
it could be a whole lot better, but for sure it could be a lot worse hope all the lupies are ok. mark.