When my doctor gave me an official diagnosis (of sorts) after six or seven years of tests and frustration, he gave me one instruction.
“You’ll have to start making to-do lists–”
“I do that already!” (I’m a very organised person, in spite of the clutter)
“–and tear them in half. Some days you’ll have to tear it in half again.”
He went on to explain that the hardest part of the illness for most people was the gauging of how much you could do without overdoing it. Overdoing it is a huge no-no because you can send yourself into a flare. That means excruciating pain, fever, nausea…essentially giving yourself something that looks and feels like the flu from hell.
It’s been about three years now that I’ve been tearing my list in half, and I’m pretty accustomed to the shorter list, as it were. Fairly used to having to nap every afternoon if I plan to spend time with my husband in the evening. Fairly used to resting for thirty minutes after every hour of housework.
But now I’m working on a document layout for my mother’s Family history project. (Something that will probably be read by four of five people unless one of us becomes famous. Then the biographers will have a field day.) It’s the kind of work I used to do before I became ill. I would be able to throw nine or ten hours a day at it, come home and fix dinner and do stuff around the house. No problem. Then I’d go to bed, get up the next day and do it all again.
I can now only put in two hours a day, separated by a good chunk of downtime, without becoming seriously ill.
It’s one of the few times that I can hold a mirror to my old life and get a one-to-one comparison of How It Used To Be to How It Is Now. And it’s both daunting and incredibly sad to me. To have lost this much ability this quickly. When I told my mom I would take on the project I said I could have it done in a week. That was a remembrance of things past, apparently. Well, that and the fact that I had other people doing image cataloguing, so I’m doing two jobs instead of one here. Nevertheless, I feel sad to see how far I’ve slidden.
There is an upside, though. Last night my husband came home from work and we sat in the livingroom. Just talking, just watching the sun stream in from the west-facing windows, leaving lacy bits of gold and leafshadow on the walls. It was true peace and love and living of life. Contrast that to the frustrated conversations of office politics we’d have in years past as I’d come home and dissect missed deadlines, sales that had fallen through, co-workers who believed in two-hour lunch breaks. Our evenings are nicer now, to be sure. I only wish I brought more to the world, that I was still the soldier I used to be.