2010 was a very interesting year to say the least. It had some really good times and some really nasty ones. I think what is strangest of it all is the fact that I am right now exactly where I was at this time last year. I guess it goes to show that even though things change they still somehow stay the same. Mind you I'm not complaining. My health was so stable last summer that I was able to go vacationing with George and the boys, make some new friends and attend several concerts in Toronto. I had a fantastic summer, one I will always remember. I just hope it's not the last one. If I have to, I'll wait a few years for another one like it. I just want that hope that it may happen again. People need things to look forward to right?
I've come to realize that I will always have periods in my life where I will be basically useless to those around me and will completely depend on them to meet my needs. When you think about it it's a lot to ask those who love you. It really makes you think you know. Is it fair to ask them to live this way? I know I have no choice in the matter at all but they do. So really what is fair? I don't know. I have to remember that if the tables were turned I would do the very same for someone I loved. That thought doesn't stop me from feeling needy and useless though and that's a horrible feeling especially when someone is used to being able to take care of themselves.
Pain. It scares most people and with good reason but believe it or not pain can become like an old friend. I guess that sounds really strange and I really have no way to explain it, not verbally anyways. For the last 4 months I have been living with pain daily. Some days it's a dull throb and burning sensation. Most days it's strong enough to bring tears to my eyes. It's frustrating, depressing and exhausting. The worst part believe it or not is the boredom. My brain is crying out at times for something to do. Some days I can get up and putter around a bit, do my dishes maybe even sweep. Then there are days like today when I need someone sitting outside the bathroom while I wash and clean up in case I fall down because I would not be able to get back up. Where someone has to follow me around in case I topple over and where sleep is a distant memory, something I hope to be able to achieve sometime in the next few days.
I have to keep reminding myself that I have a good life, that there are so many people out there who are so much worse off than I am. I have hope for better days something others do not. I am grateful for what I have. I am happy to be alive. I am blessed in so many ways. This disease is my cross to bear and carry it is something that I will do. Mind you I am only human and being so I need to bitch every once in a while. I guess that is what this note is in a way.
I don't want anyone's pity. I don't want anyone to feel sorry for me. I don't want to be avoided. Sometimes I just want to scream out to the world... look at me I'm over here! I'm not a dirty secret that needs to be hidden away!!
People really don't know how to deal with me when I am like this and I really don't blame them. Years ago before all this happened to me I would have probably avoided someone suffering as I am as well. Well not totally, but it would have taken great thought to go visit them when they were ill. I guess people figure when you are sick that you really don't want someone around. Nothing could be further from the truth. Boredom sets in rather quickly, then loneliness and finally depression. It's like you become a social outcast rather quickly. The loneliness is the worst. But then I don't want anyone to feel uncomfortable around me either. One of those "damned if you do and damned if you don't" situations. *shrug* I may feel lonely but seeing the looks of frustration, helplessness, and unease in my friends is even worse. See what I mean?
I think more than anything I'm just screaming inside for someone to just understand. Please just understand who I am, what I am going through, the frustration, the boredom, the loneliness and of course my old friend, the pain.