In Which I Re-Learn the Basics of Living with RA
I consider myself a fairly smart person. It's not something we're supposed to say, just as we are not supposed to remark on our own gorgeousness, but there it is. I'm certainly not in the same league of attractiveness as supermodels or Hollywood stars, but feel fairly confident in saying that my brain works pretty well most of the time.
And then there are the moments of sheer unadulterated and profound stupidity.
Two months ago, I wrote a post about being low on energy. Not just your average dip, but the kind where getting through the day was a challenge. I took a couple of weeks off and having that time to take a step back and think made me realize something very important. I needed to go back to school to get a refresher course in basic RA management. This is what I learned:
Listen to Your Body
Sounds like a no-brainer, doesn't it? But when you live with a chronic illness like RA, we become used to ignoring what our bodies tell us. After all, if you had to listen to every single message your body sent out about pain, fatigue and "interesting" side effects to medication, there wouldn't be room for anything else. And, more importantly, you wouldn't get anything done. When making a cup of tea hurts, you learn to block it out and focus on what's next on your list. It's a simple coping mechanism and will generally serve you well.
The problem with this approach is that we also block out important messages about changes to what's going on in our bodies. There are the regular RA symptoms and then there are subtle message that something's wrong. Depending on how willfully blind you've made yourself, things can get pretty bad before you notice.
That Spoon Thing Isn't Just a Cute Theory
The Spoon Theory is one of the first things you learn from others who have a chronic illness. It is an incredibly practical reminder of how to keep track of your energy store and also a brilliant way of explaining energy problems to others. By visualizing your energy as something tangible like a number of spoons, you very quickly figure out how to assess when you're getting close to being done for the day. In the process, you learn more about where your limits are and how to respect them. It's also a great way to bond - when you meet another spoonie, you have a topic to start a great conversation.
A couple of months ago, I became very intimately acquainted with the practical application of the Spoon Theory. I spent a few weeks having a bit of a temper tantrum about having to recognize the fact that I had limits, which meant familiarizing myself with the reality of living with a chronic illness. I don't do this well. In fact, the discrepancy between what I want to do and what I am able to do is one of the hardest things for me to accept. When matters didn't improve, even with extra rest, it became very clear that I had to start paying closer attention to my spoons.
Keep a Symptom Diary
Keeping a record of what's going on with your body isn't just for newbies. In the beginning of your life with RA documenting how you feel, what you eat and do, what meds you take, what the weather's like, etc. can be really helpful way of establishing patterns and triggers. However, at a certain point most of us stop this practice. Once you adapt to having RA and shift back to focusing on the other parts of your life, knowing the details becomes less important.
My experience this summer taught me that the first step to manage your symptoms can be as simple as picking up a spiral-bound notebook at your local office supply store. Taking a few minutes every day to make a note of the factors that can influence the status of your RA and general health can be a valuable tool in figuring out what's going on. And that brings me to my next point:
Are the Meds Working?
After two weeks off I was feeling better, but nowhere near my usual energy level. That's the point when my doctor ordered another blood test and we realized that my inflammation marker was up. Not surprisingly - I'd been battling the aftereffects of a bad flu for most of the summer and had to skip or reduce my dose of Humira several times. I hadn't paid much attention to it - sure, a few of my joints was acting up, but it felt more like a tendon thing so it didn't register. Getting the news about my level of inflammation had a light bulb going off above my head: tendons can get hit by inflammation, too. Yes, I know - it's basic knowledge about RA. In retrospect, I seem to have disengaged my brain for quite a while.
Getting back to my regular dose of Humira helped tremendously, although I've noticed that I still get tired for a couple of days before my shot. It's a reminder that it takes two or three months to for most meds to really take effect.
This experience hasn't just been helpful in terms of giving you all an opportunity to laugh at my inability to apply what I know to my own life (really, feel free to laugh). It was a valuable lesson in remembering to incorporate the basics in my everyday life with RA. And it taught me that just as having more energy can be one of the first signs that the meds are working, feeling less energetic can be the canary in the mine that tells you the meds might need adjusting.
Lene is the author of the award-winning blog The Seated View.