I had a long good cry this morning, angry that I'm not who I used to be. I'm 58 years old, was diagnosed 5 years ago and I don't want this!!! I know better than to go there, I work hard on acceptance and take a positive attitude toward life. I'm usually grateful for all the good things in my life ....
My wonderful husband wanted to go to Indiana to see his brother for his 60th birthday. I have been stable. I told him to go and that I would spend one night alone and my friend would spend the rest of the weekend here. No big deal for a normal situation. But we all know this disease isn't normal. Stable to Me, isn't stable to the rest of the world. As some of you know I had two surgeries in the last six months and I'm in physical therapy twice a week. I work at building strength every single day but I walk in the hallway of my building as it's air-conditioned and outside my door. Yesterday after darling husband left, I had to mail a baby blanket I made, so I walked outside in the 95° weather the half a mile to the post office. I don't walk to the post office in normal circumstances, never mind when no one is home and it's 95° . I barely got to the post office and sat on the bench wondering I was going to do. I was so frustrated, most normal people can walk to the post office and mail their item and walk home .... why can't I.
As I was pondering what to do as I sat on the bench in tears and a bit confused. a friends teenage daughter was driving by and she stopped to show me her new car. I didn't recognize her at first, but then she told me who she was again and I was so grateful. It truly was a God moment for me. I asked her if she would take me to the post office and take me home and she said sure, no problem.
Today, I was upset that I had received text messages from my husband, but he hasn't called me since he left yesterday. How could he leave and not check on me? He is my total support system, the one I share all my life and fears of this disease with. Not realIzing that when he left, I felt like someone had pulled the rug out from underneath me. He texted me so often that this morning he thought he called me. I am formed him that he didn't and he felt terrible. I felt so alone, alone in my disease, alone in life with no one to turn to ...
Yes, there are people I could call, but I am not good at reaching out and asking for help. People only see me when I'm doing well, they don't see me when I can't leave the apartment because I'm afraid, they don't see the fear I have of going to the pool alone. Sometimes I feel like I sit and watch the world go by.
Today I got up and I made coffee. I did my half a mile walk in the hallway, I did my leg exercises and my stretching, my prayers and my meditation. I did laundry....Right foot left foot I moved forward. Almost with the determination that the disease won't get me. But I know that's not true becauss it already has ....
My wonderful husband wanted to go to Indiana to see his brother for his 60th birthday. I have been stable. I told him to go and that I would spend one night alone and my friend would spend the rest of the weekend here. No big deal for a normal situation. But we all know this disease isn't normal. Stable to Me, isn't stable to the rest of the world. As some of you know I had two surgeries in the last six months and I'm in physical therapy twice a week. I work at building strength every single day but I walk in the hallway of my building as it's air-conditioned and outside my door. Yesterday after darling husband left, I had to mail a baby blanket I made, so I walked outside in the 95° weather the half a mile to the post office. I don't walk to the post office in normal circumstances, never mind when no one is home and it's 95° . I barely got to the post office and sat on the bench wondering I was going to do. I was so frustrated, most normal people can walk to the post office and mail their item and walk home .... why can't I.
As I was pondering what to do as I sat on the bench in tears and a bit confused. a friends teenage daughter was driving by and she stopped to show me her new car. I didn't recognize her at first, but then she told me who she was again and I was so grateful. It truly was a God moment for me. I asked her if she would take me to the post office and take me home and she said sure, no problem.
Today, I was upset that I had received text messages from my husband, but he hasn't called me since he left yesterday. How could he leave and not check on me? He is my total support system, the one I share all my life and fears of this disease with. Not realIzing that when he left, I felt like someone had pulled the rug out from underneath me. He texted me so often that this morning he thought he called me. I am formed him that he didn't and he felt terrible. I felt so alone, alone in my disease, alone in life with no one to turn to ...
Yes, there are people I could call, but I am not good at reaching out and asking for help. People only see me when I'm doing well, they don't see me when I can't leave the apartment because I'm afraid, they don't see the fear I have of going to the pool alone. Sometimes I feel like I sit and watch the world go by.
Today I got up and I made coffee. I did my half a mile walk in the hallway, I did my leg exercises and my stretching, my prayers and my meditation. I did laundry....Right foot left foot I moved forward. Almost with the determination that the disease won't get me. But I know that's not true becauss it already has ....
