Hi there - just found this site after hunting on facebook for a lupus group who weren't into marathons!! (with no success)
I found out that I had SLE in '96. I was in hospital for a couple of weeks to try and get to the bottom of what had been wrong with me for the last year.
(lack of mobility, aching joints, low mood, sleeping as if there was a prize for the person who could sleep the most in the world, no interest in food etc)
During a shift hand over, two nurses stood at the bottom of my bed, nurse 1 told nurse 2 that i had SLE and was in for obseveration.
My first reaction was, "great this thing that's wrong with me has a name" - quickly followed by "what the **** is it"
not long after that my consultant said those magic words "we know you have a problem and were are going to help you" what a wonderful man.
So here I am 13 years later still trying to work out how to deal with this, tried ingnoring it but thats difficult when every days starts with a pic'n'mix from my tablet box - the strategy i went for was to try and make sure as few people as possible knew - didn't want to come over as a drama queen, looking back this was a mistake, cause now i'm the one at work who always needs time off to recover from holidays and the staff don't know why
do you think it's too late to "come out"??
Maybe it's time i controlled the SLE rather than the other way round...
it must to good to talk right enough i feel better all ready
look forward to chatting some moe
xXxXx
I found out that I had SLE in '96. I was in hospital for a couple of weeks to try and get to the bottom of what had been wrong with me for the last year.
(lack of mobility, aching joints, low mood, sleeping as if there was a prize for the person who could sleep the most in the world, no interest in food etc)
During a shift hand over, two nurses stood at the bottom of my bed, nurse 1 told nurse 2 that i had SLE and was in for obseveration.
My first reaction was, "great this thing that's wrong with me has a name" - quickly followed by "what the **** is it"
not long after that my consultant said those magic words "we know you have a problem and were are going to help you" what a wonderful man.
So here I am 13 years later still trying to work out how to deal with this, tried ingnoring it but thats difficult when every days starts with a pic'n'mix from my tablet box - the strategy i went for was to try and make sure as few people as possible knew - didn't want to come over as a drama queen, looking back this was a mistake, cause now i'm the one at work who always needs time off to recover from holidays and the staff don't know why
do you think it's too late to "come out"??
Maybe it's time i controlled the SLE rather than the other way round...
it must to good to talk right enough i feel better all ready
look forward to chatting some moe
xXxXx