beyond frustrated
I have heard it said that there is a light up ahead if you just keep on the track and take each step one at a time. I have learned that the light up ahead is a freight train headed my way.
I don't have many wants. I don't wish to win the lottery. I don't wish for a big expensive vacation or a fancy car. The only wish I have is to have one day...just one...where I wake up in the morning able to jump out of bed, run and play with my kids like I used to. Do all the things they want...... for just that one day!!!
I am tired and my joints hurt. The edema is so bad that a gentle touch on my arms and legs leaves an indent in my skin for a long time.
I still work full time (mostly because I have no choice since I make more money than my husband does and am the reason my kids can still eat). But, I don't know how much longer I can do this. After working my shift, I am so tired and hurt so bad that I can barely make it out of my car and into my house. There have been plenty of nights I sit in my car and cry because I just don't have the strength to get out of the car and fear walking up my steps because the pain is so bad. I am a nurse in a pediatric ER and sometimes it is hard to take care of others when you feel so horrible yourself!!!
My children are scared to death. They are watching their mother fall apart right in front of their precious eyes and there is nothing I can do to calm their fears except fake a smile every once in a while and tell them everything is ok. When I see the fear in their eyes, it breaks my heart!!! When my 10 year old daughter cries because I fell and she can't help me get up, when my 12 year old son and 5 year old son see their mother wet her pants because she can't get to the bathroom in time, it tears me up inside. When my youngest looks me in the eyes and says "mommy, why did you have to get sick", it is more than I can take. I know he does not mean to hurt me and is just asking out of the sweet innocence of a child who does not understand that mommy did not choose this.
My husband has not dealt well with my diagnosis since the beginning. As the disease progresses, his anger and resentment just gets worse. What used to be an every weekend drinking binge has now become a daily occurrance. He has said more than once that he hates his life and I know that I am the reason for that. I find myself falling asleep every night knowing that if I did not wake up in the morning his life would be so much better. I pray for that almost nightly now. In one breath he tells me not to go on disability because I would be giving up and the disease wins but then says that I need to stop working these long hours and be home with my family. I tell him I want to take the kids to the zoo but will need to rent a wheel chair and he tells me I don't need one and we should not spend the money on that stuff so I don't go.
I don't want to be the reason for the failure of my family, but I know I am.
I don't have many wants. I don't wish to win the lottery. I don't wish for a big expensive vacation or a fancy car. The only wish I have is to have one day...just one...where I wake up in the morning able to jump out of bed, run and play with my kids like I used to. Do all the things they want...... for just that one day!!!
I am tired and my joints hurt. The edema is so bad that a gentle touch on my arms and legs leaves an indent in my skin for a long time.
I still work full time (mostly because I have no choice since I make more money than my husband does and am the reason my kids can still eat). But, I don't know how much longer I can do this. After working my shift, I am so tired and hurt so bad that I can barely make it out of my car and into my house. There have been plenty of nights I sit in my car and cry because I just don't have the strength to get out of the car and fear walking up my steps because the pain is so bad. I am a nurse in a pediatric ER and sometimes it is hard to take care of others when you feel so horrible yourself!!!
My children are scared to death. They are watching their mother fall apart right in front of their precious eyes and there is nothing I can do to calm their fears except fake a smile every once in a while and tell them everything is ok. When I see the fear in their eyes, it breaks my heart!!! When my 10 year old daughter cries because I fell and she can't help me get up, when my 12 year old son and 5 year old son see their mother wet her pants because she can't get to the bathroom in time, it tears me up inside. When my youngest looks me in the eyes and says "mommy, why did you have to get sick", it is more than I can take. I know he does not mean to hurt me and is just asking out of the sweet innocence of a child who does not understand that mommy did not choose this.
My husband has not dealt well with my diagnosis since the beginning. As the disease progresses, his anger and resentment just gets worse. What used to be an every weekend drinking binge has now become a daily occurrance. He has said more than once that he hates his life and I know that I am the reason for that. I find myself falling asleep every night knowing that if I did not wake up in the morning his life would be so much better. I pray for that almost nightly now. In one breath he tells me not to go on disability because I would be giving up and the disease wins but then says that I need to stop working these long hours and be home with my family. I tell him I want to take the kids to the zoo but will need to rent a wheel chair and he tells me I don't need one and we should not spend the money on that stuff so I don't go.
I don't want to be the reason for the failure of my family, but I know I am.
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