Coping with being left behind

For most people on this site you are patients with an illness that leaves the ones who love you behind. Not many people understand exactly how this happens or how this has no cure; but most of all what I never understood was how bad it could get and that is because the person I loved dearly never spoke out about what is going on with her for proctecting thoses of us who needed it. However now that your gone I feel like I would have perfered tohave known we all would have liked to have known so that we could have inderstood and worried more and been there more for you.

I think this appeals for all of us who are left behind tell us how you feel even if you sound like a broken radio let us know about the pain and the fatigue and the horror this is why we are friends to help in every situation possible because otherwise you leave us behind in more shock and unprepared and hurt with alot of hatered to people who we believe should have saved you. instead we have to find out you knew you were dying and you knew no one could help you but you chose to let everyone else believe you were ok. You were not ok we are not ok and I am not ok. I cant help but feel empty last and tortured with questions that havent got the chance of being answered with memories that should of been filled.

You were meant to be at my wedding to hold my child at his birth to be the god mother and spoil him as I now you would have. Now I have to raise a child with no god mother because no one is as perfect as you I have to have a wedding with no maid of honour because I could never replace you. I actually do not care about any of that all I want is a hug a last chance to tell you I love you I need you and I miss you so freaking much.

I cant help but feel I let you down I didnt come because you told me not to but I should of read between the lines I should of known you would need me and that he couldnt do it on his own it is unfair that Ant had to hold all the terror on his own I should have supported you both I should never have let you leave me behind.

You gave so much good to every place you decided to call home you did so much good to all the people you called friend and you were incrediably selfless in every descion you made. You once saved a family from a car wreck and put your own life at danger for complete strangers you gave the clothes on your back to the cold and poor; you protected everyone even till the end. You did what you thought was best and protected thoses you thought needed it. I just wanted once to protect you; to save you; to help you and yet even in the end you fullfilled that wish by helping me protect you by protecting me from seeing you leave. Even with every part of you giving up and shutting down you still gave love and peace to thoses of us who needed it. And though I am numb and angry I want to thank you for always being my friend.

I love you my dear Carmen may you find peace and rest where true angels are meant to be.

RIP 12January 1989- 6June 2012

Hello friendleftbehind,

Carman added pictures on here of herself on cliffs spreading her arms wide as if she was free besides beautiful shots with Anthony bless him also and i know your hurting deeply.

There's so many Lupus patients pass away and alot of family's and friends don't get it discussed how really bad they are because they've been ignored and told you look ok because the threads we've had over so many issues of Lupus member's at desperate states of wanting help from family and friends as been terrible, that should be given no matter what the cost.

Carmen was'nt like that but knowing the site and discussing feeling with friends on here may have come to think it's best i live life to the full and did'nt go on instead climbed the hills on better days although she hurt badly afterwards.

Lupus affects we all so deeply in different ways and in thinking...lupus is an hidden disease that disguises itself well to other's but we get the dirt from the disease, that's how i feel i want to explain lupus...as a dirty, plaqueing disease that puts so much on us to cope with mentally besides physically.

You may be angry but she's in a beautiful world of peace and the peace came on the 6th but the final the 15th, she'll be loved and cherished well. xxxx