After a few weeks of being just plain angry. I definitely moved into being sad, grieving for the life I thought I could live. I did not want to take time off; I truly enjoy my work. I love teaching psychology and pursuing research. I was working with great individuals and learning so much! I finally had an income and was contributing to our household. I had just started my PhD and was immersed in the literature. But now as I reflect on the past year, I was absolutely exhausted. Despite loving my job and school, I was beat when I was at home. I could barely hold a conversation with my husband. And DIGITS, well completely uncontrollable. Honestly, is it any wonder I was so run down and ended up with line infections? That is painful to admit, what was I thinking? I know what I was thinking, I can do it, I can outsmart my illness. If I keep running, DIGITS will not catch up with me. Foolish I know, but I had to try.
So my husband and I had made some decisions to help make our lives easier with all of the health accommodations I need. While on our house pursuit, I ended up having mulitple lines put in and removed which also included much time in the hospital. This made the house hunt much more difficult as I was not able see homes with my husband. While we were looking, I realized how I continued to hide that I have an illness in my own living space. I kept all of my daily medical supplies hidden in places that were difficult to access. When I needed to use them everyday. While hooked up I was restricted to one area of the house. I was not only hiding part of my life to those around me but to myself. If I didn't see it, it wasn't there to remind me. I didn't want to live like this anymore, feeling ashamed of needing medical equipment and support.
So we refined our search. We decided to move to a smaller, bungelow style house. This decision helped in many ways: less maintenance, while I am hooked up to my IV I can access all areas of the house, and eases finances with me not working. This has proved to be a wonderful move. We love the house we are in! It is cozy and easy for me to move around in while hooked up for hydration. Deciding to move has been the easiest decision that has been impacted by health. My husband's continued support and understanding is truly amazing!
Feelings of guilt and being a burden continue to surface in me. He works long hours. I always think, if I were working he would be working less and we would be more of a team. Instead, I am at home and he continues to have long days.
I try to do as much around the house as I can. It just doesn't feel to me, that I do enough. It is exhausting feeling this way and I know that I am the one who can't accept it. When people as what I do, I say I work from home. I have already made the mistake of saying I am not working and we do not have children. People look at me like, "what could you possibly do all day". But then I was thinking how am I empowering the lives of those with DIGITS and other chronic illnesses, if I cannot admit that getting healthy is my priority. So I first step is admitting, right? When I was recently asked what I did, I said, "Right now I am focusing on getting healthy".