I have only been diagnosed for seven months. I have had a lot of ups and downs, but the one thing I learned is that I cant sit around and feel sorry for myself. My doctors all said that my positive attitude and young self is keeping me out of the hospital. I broke down in my PCPs office and he saw me bounce back and said youre young and can bounce back. Its has been really hard as I was only in my second semester of my freshman year of college and was just starting my adult life. I am slowly learning to adapt to my new life. This is definitely not what I expected my life would be like. I look back though and see how things I was blaming as "my back is out" "im just to lazy to get out of bed" "I am working to much thats why I am so tired" was actually symptoms of the lupus. After taking 19 credits, working full time, teaching piano, on top of family stress my body finally just shut down. The thing that is keeping me going is just trying to do my best to accept my limitations. :)
This is a very good question !! Today I am accepting my diagnosis, last night I cried for the first time in two years. I saw a picture of my daughter when she was 17 she is now 35 and all the dreams of what I thought my life would be... I have been carrying so much anger and disappointment. I realize by crying and letting the anger out I am sad, disappointed, and probably disillusioned. I think this is part of dealing with lupus, it is accepting what I don't want, what I can no longer do as I use to. My dream of owning my own business, I am exhausted a lot of the time. I think it is coping, it seems to me my symptoms come and go as they please. How I respond determines my mood and how my day with be.
Wishing you all a wonderful Sunday!!
I went through the "grieving" process for quite a long time. It hit me the hardest when I couldn't go to Seattle for my grand daughter's graduation. Her other grand parents got to enjoy this but not me! I was there when she was born and for other special occasions in her life but lupus crept up on me. The pain and fatigue became so severe that I just had to accept finally that was the way my life was now. I have finally accepted this and have changed my life style to enjoy my good days and cope with the bad days. So to answer your question, accepting and coping are the answers for me. I guess each person has to find their own way of living with lupus. I hope this makes sense.
To misty and flower- I can relate to both of you who are commenting on grieving... it is very hard. I am still grieving very much for the life that I have lost and the future I will not have... it is a heavy burden to carry and I think that each day I am learning to let a piece of it go. Crying certainly helps get it out... Sending my heart out to both of you!
misty said:
I went through the "grieving" process for quite a long time. It hit me the hardest when I couldn't go to Seattle for my grand daughter's graduation. Her other grand parents got to enjoy this but not me! I was there when she was born and for other special occasions in her life but lupus crept up on me. The pain and fatigue became so severe that I just had to accept finally that was the way my life was now. I have finally accepted this and have changed my life style to enjoy my good days and cope with the bad days. So to answer your question, accepting and coping are the answers for me. I guess each person has to find their own way of living with lupus. I hope this makes sense.
It never hurts to cry. I have even screamed. Then when that has passed, I become determined that I will live in spite of lupus. My heart and prayers go out to all of you who are so very young with lupus.