Well I've taken advice from my ten year old nephew...
"It must be so hard living with lupus, don't you just want to cry all the time?"
Yes I do, but scared if I start I won't be able to stop
"Well I think you should have a good cry, cry a river and get over it, every day if it helps"
How can a ten year old understand that Lupus means having to get over it every day to carry on and thinks it's ok to allow yourself those tears every day...he's my inspiration and already he carries me more than anyone I know and with no effort, just by being himself.
I posted this because I'm so proud off him and know how lucky I am. My family love me and they have all suported me at some time, but none have taken the time to really dwell on how it feels to be me.
People do care and they try to understand, but as adults never seem to take themselves out of the equation;
My wife is in so much pain, it's really stressful (for me)
My daughter is so poorly, it's exhasting(for me)
We were supposed to go to a party, but I had to go on my own (poor me)
What those around us feel is real and justified, but sometimes, just sometimes I wish they would just shut uo and really think what it means to be me. I have my nephew and he makes it all better.
I hope everyone has someone in their life, even if you only see or speak to them once a year, someone who has really taken the time to understand you and your tears and realise that shedding those tears can help you carry on.
Love, hugs and boxes of tissues wished to you all.