As I’m thinking of ideas to blog about, it occurred to me to talk about some of the topics I find myself discussing with friends and family. Most people have heard of lupus but many don’t really know how life-altering it is. I sure didn’t.
When I was diagnosed nearly three years ago, I knew very little about lupus. I knew it’s an autoimmune disease meaning that my body is basically attacking itself. I knew of people who got really sick and I’d heard of the fatalities. Beyond that, I didn’t know much more, so I found myself entrenched in research to understand it.
I can recite a lot of facts and statistics, and while that’s good to know, people are curious about what it’s like having lupus on a day-to-day basis and how it impacts my life. My answer to that is: it impacts every single aspect of life – physical, emotional, spiritual, financial, social. Everything. Having lupus informs 100 percent of the decisions I make in a day and there isn’t one area of my life lupus doesn’t factor in. Not one. That sounds crazy to say out loud because I can remember a time when I hardly gave my health a second thought. Those days are long gone!
Managing lupus has become my “new normal.” It’s not good or bad. It just is. I’ve learned to make friends with lupus rather than see it as an enemy. I’ve given in to the idea of lupus, but I certainly haven’t given up. That’s just my philosophy. I work hard to stay well and I work within the boundaries lupus has placed on me. I know my limits and unfortunately, I’ve learned them the hard way.
I thought I’d cover some topics in my upcoming posts such as how I deal with extreme fatigue, sleep, diet, flares, exercise, the joys of multiple medications, endless doctor’s visits and in general, the time, effort and energy it takes to manage lupus. Having a life-long, chronic disease can be scary and if I’m not careful, I would get overwhelmed at the gravity of it all. Sure, I’ve made peace with my body and all the evil tricks it can play on me, but I’m still human. I still get scared if I overthink.
So today, right now, I’ll replace that fear with gratefulness. I’m grateful for the beautiful weather, I’m grateful for the love and support of those around me and I’m grateful for the fact that I can educate others and hopefully positively impact someone who may be struggling with lupus.