Wednesday, May 4, 2011

Moving through

I spent some time this afternoon catching up on my favorite RA "good reads". There's so many people out there with fascinating stories and important things to say. We share the experience of autoimmune arthritis, and yet our lives are so different. We are all somewhere along the road in our raggedy machines, prone to stall and break down, coast along with empty tanks, navigate dangerous turns on bald tires. I never get tired of other people's stories. And it's always healthy to step out of my own from time to time.
I noticed today how all the rain we've had recently has made things grow here. The grass is almost long enough to mow now, our daffodils are in full bloom, my Jekyll lavender is showing new leaves. The weeds are returning in cracks along the driveway. There's a lot I could do in our yard now. And I feel stuck because I have been so ill that I haven't been able to do it. This yard begs for new garden beds, lettuce plants, a new bird feeder. I'm inside the house looking out at all of it and wondering when I will be well enough to tend to it again. I said aloud to myself "I will feel better and it will all get done at some point". But will it? Or am I kidding myself about the nature of this disease?
Last week I noticed things about my body that I had not before. I began to feel pain in more joints now---the large ones at my hips, my knees and shoulders. I started to worry that the medications are not working.  And the fatigue makes me feel crazy at times. This was the hardest week yet at work because I felt so lousy so much of the time. I'm still suprised by this disease, more often than not, shocked at the swiftness with which it has moved in less than a year. Even more bewildering are the brief periods in which I feel somewhat "normal"---I notice that I begin to think and plan my life again, like Norma Desmond in "Sunset Boulevard" plotting her big comeback. First, I'm going to update my gardening blog and stay current with it. Then, I'm going to use my yard as a creative incubator and test out all kinds of plants, organics, and growing techniques. And then, I will use my gardening and writing to springboard me back into my career.
Uh-huh. I've been setting myself up this way for as long as I can remember, getting so far ahead of myself that I feel completely overwhelmed and like a tired animal, I just sit down. Do nothing.
Let's face it. My control is somewhat limited at this point. I can plan all I want and reality is that more and more often, my body needs. My body has no qualms about demanding that her needs be met promptly. If my hands hurt and I continue to push them, they will eventually hurt so much I have to pay attention, or just stop working and freeze up. RA is a trickster, a shapeshifter. When you think you have it beat, when you're getting used to feeling pretty normal, it reappears in a different joint. Just a few weeks ago, I went to a concert in an old hall downtown. The building is well over a hundred years old, with four or five stories and a rooftop deck. My pain that week had been manageable, and I think I forgot to be aware of my joints. My friends and I climbed from one floor to the next, up and down again several times and I didn't think much of it. The next morning, I was so stiff and sore I could barely walk. Yet I'm still always suprised, and I spend a good couple of hours denying there's anything hurting. I guess that's progress---at onset, I spent literally several weeks telling myself it was nothing a couple of Motrin and some ice couldn't fix.
I was raised in a working-class, midwestern German household. Life revolved around work, school, and household responsibilities. Physical illness, injury, or disease were all a figment of one's imagination. No excuses, you were expected to "pull yourself up by your bootstraps", suck it up, and get back to work. I can recall my mechanic father cutting his hand on a piece of sheet metal, and stitching it up with a needle and thread. These people were hardcore. Needless to say, when my ankle is killing me or my knee is swollen, I tend to delay dealing with it until the joint gives out. I barf up my medication and drive to work anyhow. It's what I know, and a hard habit to break.
So I'm trying to find a balance between the familiar ways I've moved through the world and how I will going forward. Looking out the window at the backyard, I feel overwhelmed with the work that I need to do to build a garden here. Pissed off that we left a place where we'd established such beautiful beds, overflowing with blooms and ornamental grasses from spring to late fall. I have more room to grow here, but I have to start over again. I have to figure out how to modify the work to make it easier on my body, use adaptive tools, ask for help with the really heavy work. It can be done---but in stages---small digestible bits I can manage. It's not just the garden, it's everything now---work, taking care of the house, laundry, even down time must be adapted to make room for present circumstances. I have to change the way I look at all of these things, how I define "success" and "failure", and what it means to be really engaged in my life. Maybe it means I won't go back to working a sixty hour week, maybe it looks different than what I'm familiar with. Maybe it means finding a soft place in the middle to land. If I can't dance four days a week because it hurts too much, then I will start by swimming one day. Or two, if my body allows. I can't beat myself up for falling short some days, because as we all know, some days are just like that. I will adapt, edit, modify my life and just keep moving forward. I've got to stay flexible. RA may be devouring my body, but I'll be damned if it will eat my soul too.

1 comment:

  1. I really enjoyed reading this said very well many of the feeling I have been feeling today.