Frustration

I do miss my freedom to do what I want, when I want. I love Brian and would not want anyone other than me taking care of him on a full time basis. But I do miss being able to go when and where I want and not adhere to someone else’s time table. Brian is always happy to go with me places but at times it can be difficult. Getting both of us ready can take a lot of time. If I am not moving well, it takes even longer. There is no such thing as “spur of the moment” for us. And as I get worse, it will be even harder to take off and go. So I try to go as much as I can now. Brian and I both have to live in the moment, taking advantage of our time today since we don’t know what tomorrow will bring. I have been having a lot of pain in my legs this past week. Sleeping is difficult and each time that I roll over is painful. Days like this, I just want to be gone. But I can’t. Unless someone fills in for me, I am always on duty. If I had a full time job, I would only have to work 8 hours and then I would have time off. And I don’t have the luxury of just being sick myself. I can’t stay in bed on a bad day. Brian doesn’t feel this frustration as I do as he is happy to sit and watch TV. He gets lost easily when shopping with me. It is ok if I am holding his hand, but if I am in a motorized cart, he constantly gets lost. I haven’t figured it out, but I think if he takes his eyes off of me for just a second, he loses his focus. So he is just happy to stay home where he knows where his is and where the bathroom is. That is another problem...using the bathroom when we are out. Most places don’t have family bathrooms where I can be in there with him. If Brian is nervous, he has to use the restroom a lot and most of the time, he needs me there to help. I would have loved to be able to go out to the casino tonight and forget my cares. My friend, Allison called and wanted me to meet her there. She is single and can go whenever she pleases. Don't get me wrong. I don't want to be single. I would never trade my time with Brian. But lately, I have been going on Sat. evening which is not my favorite time to go but I go because I can. Frustration is probably the number one concern with being a caregiver and living with a chronic illness and that is what I am feeling tonight.