Happiness. What is it? How do people get it? Right now, I really don't know. I know how to pretend to be happy. I know how to lie about being happy, to myself and others. But how can I be truly happy?
This week marks 2 years since I have been officially ill. I quit working as a RN 2 years ago this week. Shortly there after my dysautonomia/POTS symptoms kicked in hard. So, I mark this week as my official start date of my illness because it was when I started getting really sick and because that was when my whole life turned upside down.
Needless to say, I'm not dealing well with this "anniversary". When I quit working, I never expected it to be permanent. I never expected my illness to be permanent. I have thought that I have accepted my illness and all of the life changes that come with it. However, with this anniversary, I realize that I haven't.
Part of me is still waiting for my life to return to normal. I still feel like my life is just on hold. For instance, I used to keep up with the pictures I take of the family, special occasions, etc. Meaning that I would go through all of the digital pictures we have taken, delete the bad ones, order prints of the good ones, and organize them by year in photo boxes that I have. I addition to that, I would make sure there are up to date pics of my daughters framed on the walls. However, I have not done any of that in the past 2 years. Subconsciously, and maybe even consciously at times, I am waiting until I am better to take care of our pictures.
That's just one example. I catch myself sometimes thinking "When I get better, I'll..." But I'm not going to get better. That's still so hard to say. I have gone through the stages of grief, because, as you may already know, the stages of grief are not just for dealing with death. They're for dealing with loss of any kind. I suppose, in a way, I am dealing with death.... the death of my old life. I thought I had reached acceptance. However, recently, I have regressed. I have been back in the stage of denial with a little anger and depression mixed in.
Why? Why did this have to happen to me? I had so many plans for my life. I'm ready for this to be over now. I've dealt with this mito crap long enough. I'm ready to move on. I'm ready to go back to work. I'm ready to be a good mom again. I don't want to be the sick person. I want to take care of sick people. I'm ready for my parents (and others) to be proud of me again. Hell, I'm ready to be proud of myself. I'm ready to be able to do something with my life again.
I want to get out of this chair, bed, or couch. I want to do the things that I love doing. I want to enjoy life. I want to smile. I want to make plans for my life again. I want to have self esteem. I want my life to be something other than sickness. I want to be known as something other than a woman with mitochondrial disease. This feeble, useless, sick person who relies on others to take of her. I want to be known as the strong, intelligent, and kind woman who helps others and is a wonderful friend, mom, and wife. I'm no longer any of those things. I'm no longer strong, I'm weak. I can no longer consider myself intelligent. My mind has been hit by mito and my daughters finish my sentences for me. I am no longer a wonderful friend, mom or wife. I can't do anything for the people I love. They have to wait on me all the time. I require so much from my relationships that I could never return the favors and love I've received.
I want to help people instead of people helping me. I hate it. I love helping people. Just knowing that I did even one small thing to help someone makes a difference in my life. But I can't do that anymore. Instead, I have to rely on others helping me.
All I want for Christmas this year is a cure. I know, there's no way in hell. Okay, how about this... What I want for Christmas is for everyone in my life to truly understand what I'm going through. Just one day in my head and in my life. I just want everyone to understand why I act the way I do sometimes. I want everyone to understand why I am so needy... so needy of love and support.
It's been 2 years, and I'm ready to go back to my old life. However, instead, it's 2 years down, 50+ to go (I hope).
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