About a year after my diagnosis, I went to the hospital for extreme anemia, a reaction to Retrovir aka AZT. This was the last straw on the camel's back and since then I've been on SSI disability. Some say great and it did cover most the bills, but being home all day, everyday is taxing. Barely enough $ to make ends meet and no where near enough to do much in the way of diversion.
Rituals, habits & patterns become important to you in ways you never considered. They're your clock & calendar. Oh, it's time to dishes, it's Thursday better vacuum, it's second/fourth Monday of the month better mow the lawn. Those things that mark your time between sleeping, week passage or next month's bills become the things that get you through the day and the things you really despise.
It's almost a crisis when something happens that doesn't fall into your daily rut. How bad will this throw me off, how much $ will this take, or just WHAT NOW!? Even if it's a good thing or something just slightly diverting, you somewhat resent it for not having the decency to be planned into your day ahead of time. In situations like mine surprises are rarely good and almost never welcome. Whenever you're dealing with someone in a situation similar; an elderly relative, a sick friend, or your sibling at home with three kids, remember you may have just thrown their entire system out of whack, so be a little patient and understanding. I know it's way OCD and limiting but it's what I/we have.
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