This blog is to keep our family and friends updated on my husbands condition. This is also a place for me to get some blog therapy. My name is Amanda and my husband is Ron. He was diagnosed last year with Central Nervous System Vasculitis and our entire life was turned upside down. Thanks for reading.
Monday, June 2, 2014
I know i just posted an update a few days ago however, i have had a lot on my mind since the last post. Being a caregiver is hard work and working on top of being a caregiver is even harder. I was blessed with a job that has a perfect schedule for me and one that allows me to still feel fullfilled. Ron has a condition called communicataion apathy or something like that. Basically he no longer follows the script of normal conversations. His responses are typically just a few words long and he rarely has the ability to strike up a conversation. He has been this way for several years and now I find it difficult having conversations with others. I am working on it but it is a diffuclt habit to break. The funny thing is, Ron and I have wonderful conversations in text with Ron. It is so amazing to me how easily we can communicate with each other thru our text messaging. I feel like I have found a tiny piece of the man I married. I am even getting over expecting the same easy conversation when we are together. My new job affords me the oppurtunity to meet and share with many new people. I was terrified at first but as i enter the 3 month mark from when I started, I am getting better at conversating. I have also realized how much our lives are defined by his illness. I cannot tell you how many times I have said "before he got sick" or "after he got sick". I still miss our old life very much but I have accepted our new life for the most part. Acceptance is one of the final stages of grief so I guess I am making progress. That is all I have to write for now. Thank you for reading. Never take anything in your life for granted. Change is not preventable and forward progress should always be counted as a success. I am borrowing my mom's computer and it won't let me edit so I apologize for all the errors.
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