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.

Benched

RA is still a mystery to me. No matter how much reading and research I do, or how many questions I ask the rheumatologist, I never quite know what to expect. And in my body, the disease doesn't always act the way that the texts describe it. Symmetrical pattern of joint pain? Sometimes both hands, wrists, knees, hips, or feet. Often it seems to appear in my neck, or one shoulder, and moves in and out of my hands and feet. Low grade fever accompanies joint pain? Occasionally. Then again, the fevers can appear out of thin air without significant pain. Difficulty sleeping due to pain? Yes, that happens from time to time. Just as often, I can fall asleep easily on the couch while watching evening television. Morning stiffness and difficulty moving---also pretty typical. Only mine doesn't go away for at least four hours. Exercise is supposed to help. Sometimes I can dance through an hour-long fitness class. Some days at work I can barely walk from one end of the shop to the other, lift a potted plant, or turn a handle to open a faucet. I can only chalk this up to my dislike of rules, regulations, and my general disdain for being told what to do. Of course my RA is going to be a radical left-wing, borderline anarchist variety. My disease does not act like the textbooks predict that it will

Right now, I'm struggling to manage the basics---my prednisone and mtx. As my rheumatologist calls them, the "frontline" medications for severe rheumatoid arthritis. This stuff regularly kicks the crap out me, both body and mind. The fatigue, the stomach complaints, dizziness, headaches, muscle pain. The horrible metallic taste in my mouth. An overall feeling of malaise, like you have the worst case of the flu you've ever had in your life. It's no freaking wonder I'm having a tough time focusing, with all of this stuff going on. For example, I'm trying to shower and dress to go to work in the morning. I've taken my meds, had coffee and perhaps a little something to eat. I'm thinking jeez, I'm a little nauseous. I sure would like to sit down for a minute, but I can't or I'll be late. A little dizzy too...I hate taking a shower when I'm lightheaded, I'm afraid I will fall down. Maybe if I move really slowly, I won't feel so sick. I don't sit down and instead force myself to pull it together and dress, put on makeup and do my hair. I always make it to work, hopefully with a few minutes to spare. I never, ever call in sick.

If I'm sick, I don't get paid.

Which means I have to pull money from somewhere else to pay for prescriptions, copays, groceries, and all the other stuff it takes to run a household. There's very little room for error or reallocation. So I just don't get sick, although I am. All the time now. Of course, I don't mention this to my employer. I don't want to be one of those "problem" employees---viewed by management as unreliable or even worse "a weak link". I spend my working life trying to keep my illness as hidden as possible, and make every effort to appear normal. It's always funny how people will ask what I did over the weekend and these days, my best response is "nothing special". How can I possibly tell them I spent most of it sleeping or trying to accomplish simple tasks like shopping, laundry, or changing the cat boxes? How could I make them understand how exhausted I am by
performing such ordinary, everyday things? What on earth would they think?

Funny. A year ago, I had big plans. My career was finally moving ahead, after so many false starts and stalls. I was dedicated, ambitious, and driven. I was in charge of my own destiny. Today, my body dictates to me what I will be able to do. Strength, endurance, and ability are determined on a microscopic level of blood cells and synovium. RA is like being given the ultimate time-out. The coach pulls you out of a playoff game and benches you indefinitely. You might play again...or you might not. So you watch from the sidelines, loving the damn game and feeling your muscles flex in anticipation of every move. You love the game and you want so badly to play, but you stand and your knees give way, your head spins, the legs don't work and the arms feel like they weigh a thousand pounds each. It's a humbling experience to be forced to accept the fact that for the forseeable future, you are in fact, on the injured list.

And you realize that the game itself has changed. It's no longer about competition, recognition, or achievement, but about survival on the most basic level. Every choice you make affects each subsequent choice. If I don't go to bed early, I may struggle to get through the day tomorrow. If I don't take my pills before mid-afternoon, I may not be able to sleep. If I don't write myself a note, I may forget to carry my meds with me to work, which will force me to take them too late. The game has changed. I don't yet understand all of the damn rules. Doctors can tell you about medications, the course of this disease, side effects and complications. They can't tell you how to learn to manage your life in a totally different way than you have before. I guess I'll learn that as I go along. Good lord, I hope so.