Grist

I want to go somewhere, somewhere away from here, somewhere I can sit on a beach, somewhere people bring me nice drinks with paper umbrellas. I surely don't need a vacation; I don't go to work at all. I surely don't need a break; my life is easy, undemanding. Yet still, I want to go somewhere.

Perhaps the real problem for me is boredom, combined with the many, ever increasing limitations in my life. I have trouble opening the doors in my apartment building. They are not designed for a near quadraplegic. I have trouble washing my head and under arms in the shower; my HCA's have to help me with it these days. I'm getting increasingly upset with how these losses are impacting me. Today I couldn't put my toothbrush away; the cup was on the shelf, too high. I ended up pulling the cup down, putting my toothbrush into it, then sliding the cup back up on the shelf where it tipped upright thanks to gravity.

I'm tired of being here, in this space, physically and psycholgically. Unfortunately I neither have the funds nor the health care aide to simply jump up and go. Furthermore, my AHS Nurse Coordinator has been off with a serious illness for the last few weeks. That leaves me with only a temporary nurse providing coverage, offering no real advocacy. It means my self-managed care application is kind of in limbo, awaiting the return of my coordinator.

There is the possibility that I am getting increasingly frustrated by how much my life patterns are in the hands of other people. It turns out that a 9:30 PM bedtime visit is considered on time anywhere from 9:00 PM to 10:00 PM. So if I am watching a show, like I was last night, enjoying a glass of wine, like I was last night, it all comes to a grinding halt well before planned because the HCA wants to slap me into bed and get home as fast as possible. I can't blame the HCA. The provider, CBI, says these are Alberta Health Services guidelines. The only person who can help me with this is my AHS Nurse Coordinator, the one off sick.

I'm feeling helpless, inadequate, angry. I feel like I am fighting the system all the time, for every little thing I need. I certainly gain victories over some of the issues; I also suffer a lot of setbacks. While people may care, the system does not. There are rules, regulations, guidelines, expectations, all set to keep the system functioning properly. I understand the need. I just dislike being grist for the mill.