The war within

When I was diagnosed with SLE followed by Sjogren's, I was relieved to have an answer to the cause of my symptoms. I had no idea the impact it would have on my life in just a few short years.
My symptoms started out very vague. Edema in my legs, fatigue, sun sensitivity and a rash across my cheeks that gave me a rosey glow. I could cope with these symptoms and daily life did not change much. Little did I know the changes that would occur with age and time. I seem to be progressing faster than I expected despite my own strong will to not let it take over my life.
I kept thinking that if I just keep pushing through, I would be ok. If I learned to ignore the screams coming from my body to slow down, I could overcome. If I believed in my own inner strength, I would continue to thrive.
I started to focus on finding a reason for having these diseases. What did I do to cause this. I read books, did research, looked at my past and saught forgiveness for all I had done wrong in my life in case this was some sort of karma.
Time is progressing and so is my disease. Things I used to enjoy doing I can't any more. I used to be an avid paranormal investigator. The pain in my joints prevents me from walking around potentially haunted locations in search of answer to where we go after we die. So, I have since given it up. I used to love to sun bathe and play in the water with my kids. Pain and the disease prevents me from being in the sun to long and too much activity in the water or cold water temperatures make me feel even worse. SO I sit in the shade and watch from the sidelines. I am no longer an interactive part of my kids lives. Just an observer.
This past week, my family and I took our annual summer vacation together. We used to tent camp every summer but a few years ago I realized I could no longer sleep in a tent so we invested in a pop-up camper thinking that would be the answer. This last week we took the camper out to our usual camping location and what I found was that walking on uneven ground, sleeping in a hot camper, packing, unpacking....well, it is just too much. We got home Thursday and I am still recovering. My body is screaming and me and it very angry!! I tried to make it momorable for my kids, but I feel like I made it a lousy experience for them. Yes, they did get to do all the things they wanted to do. My older two kids went on a horse ride. All of my kids and my husband went go-carting. My kids swam in the river and even took a few rides down the river on their rafts. We took a family raft ride but because I was in the sun too long, I broke out in hives and felt absolutely miserable the entire next day. I was exhausted and in pain. I sat from the sidelines most of the trip and watched. No longer active in their lives. Just an observer now.
This is driving me absolutely crazy. I have given up everything I love to do all because of these two diseases!!! I hate my life!!!
When you have a disease that is progressive and painful, there is a war going on in your body. As if that is not bad enough, you also have a war going on in your mind. How do I choose what must be done versus what I want to do? I must do the laundry. I must continue to work in order to provide for my family. I must prepare meals every day to feed my young children. I want to run with my kids for just one more day. I want to go on just one more ghost hunt. I want to be able to jump out of bed and start my day pain free. I want to be able to sleep through the entire night without waking up in pain. What I MUST do has taken over and what I WANT to do has lost out completely. The war is far from over and eventually I will not even be able to do what I must do. What kind of life is this??? Eventually I will be just a lump of flesh sitting on the sidelines and completely worthless to everyone.
I have absolutely had it with people telling me to keep fighting. This war is no longer worth the fight because there is no way I can win the battle!! Just like my body telling me one thing and my brain and heart telling me something else, people around me are telling me to keep fighting while my heart is saying just give up, it is not worth it any more. In response to people telling me not to give up, I smile and say that I am not but inside I am crying constantly. I try not to show my tears to my family so I hold it all inside. It scares them to see me in weak moments. It is breaking my heart to see them see me. It crushes my spirit everytime my kids ask me to play with them and I just don't have the strength to pull from. In the war of what I must do and what I want to do, the "must" side has won...for now. At least until that is gone too and the dark forces of SLE and SJS have won.
I go to bed every night and pray that I don't wake up in the morning. I search for answers on ways I can help that along. My body is weak. My spirit is crushed and my heart is broken. The only release I have is writing my feelings in this journal because I know that no one in my family can read them and feel sad or disappointed. I am truely sorry if you are reading this and was having a good day and are now feeling sad and lost because of me. I have to write this out before the tears come to fruition and my family sees me cry.