Managing Your Level of Mobility Living with Rheumatoid Arthritis
It was as inevitable as the tides, the sun rising in the east and the Toronto Maple Leafs getting nowhere near the Stanley Cup finals.
It started with the usual pain after a day at the computer and then I started losing ground. Just a bit each day, enough to heal overnight, then needing a weekend of doing very little in order to bounce back enough to go back to work on Monday, followed by needing more painkillers than normal from the moment I got up and yet, I didn't really slow down. So things got worse and that's when I finally had to call my producer to tell her I needed to take a week off because if I didn't, it would take me a couple of months to heal. Which is why you haven't seen much of me for the last 10 days or so.
And as usual, I gave in a week too late. Which means instead of being bad, things were Really Bad and there hasn't been much progress in terms of healing. Unless entirely losing your sense of humor and perspective count as progress? Gritting my teeth and starching my upper lip only worked for so long and halfway through the week, it all came to a head. I spent the day fighting tears and it wasn't just because of the pain, although by then, it had become "interesting," every move accompanied by a blinding crescendo of my body letting me know just how wrong things were. It was tears of frustration because I had so many things I wanted to do and my body wouldn't let me. It was tears of despair at how close my limits have become. And it was tears of rage that that yet again, the RA won. Yet again, my plan, my life had to stall out while I coddled my body.
It felt as if no matter what I did, things kept getting worse, but if I look at it with some degree of reason, it's obvious I was merely doing lipservice to the idea of taking care of myself. I might have stopped for a day or two, but would then dive right back in and not with light duties either. I'd go right back into spending hours working, as if I wasn't half injured. As they say, denial ain't just a river in Egypt...
And I've been wondering why I do this over and over and over again, why I time after time don't stop until I hurt myself.
I thought of the usual suspects. To say I have an all or nothing kind of personality would not be an exaggeration. There's the infamous Protestant work ethic that compels you to finish the job no matter how long it takes or how much it hurts. There is a sense of urgency that comes with having had enough flares that you come to believe the other shoe can drop at any time, so you'd better do as much as you can before you're forced to sit still. And sure, it was all of those, but underneath, there was something else.
It was pride.
I have been unable to work for a very long time, unable to do much of anything for a very long time and this job, this work I do on MyRACentral is important to me, not just as a job, not just because every now and again, I'm allowed the privilege of being able to help someone, but as a symbol that I am better. That I am well enough to work again, to be "normal," To be productive.
Walter Bagehot said "the great pleasure in life is doing what people say you cannot do" and underneath, deep underneath, there is a part of me that thoroughly enjoys exceeding expectations. I've used a wheelchair since I was 16 and this visible sign of disability has a way of instantly lowering people's expectations of what I can do. Showing the bastards has become my life's work to such a point that it's become second nature. But it gets weirder, because sitting still, able to do very little but think made me realize that there are times where I become so caught up in this game of trying to do what other, healthy people can that I have somehow developed the ability to completely ignore my body's requests for rest. Because apparently, my body has less votes than my pride when it comes to deciding when to stop and the worse it gets, the more jazzed I become about being able to do it - whatever it is - anyway.
Not surprisingly, this inevitably leads to pride going before the fall.
We who live with RA are very familiar with the phrase use it or lose it - we are told this by doctors, physical therapist and pretty much any other vaguely medical person we encounter. And it's true. If you don't work to maintain your current level of fitness and mobility, RA can encroach and you will lose ability. But there's something else they don't tell you and that is use it and lose it, because if you do too much, if you constantly go past your limits, constantly injure yourself in your quest to do what you think you should be able to do regardless of your body's opinion about the matter, you will eventually also lose function. And this is why it is so important to know your limits, to pay attention to the messages your body sends you, to manage your energy and to learn how to say no, not just to other people, but more importantly, to yourself.
And so I find myself yet again in this place I know so well. This place that tries to teach me the mental discipline to not overdo.
One of these days, I might even learn the lesson.
You can read more of Lene's writing on The Seated View.