“What does lupus mean to me?”
That seems like a simple question, and yet answering it is something many of us struggle with on a daily basis. Our lives are busy, filled with activities from morning until night. A diagnosis of lupus can really throw a wrench into the works. Sometimes lupus means being stuck in bed, struggling through a day filled with pain, or being too tired to go out with friends. Naturally, this is frustrating. For many of us, seeing the negative effects of lupus is easy. The harder part is learning to find the positive, but that is an important part of the journey with lupus.
When I was first diagnosed with lupus, I was in the process of returning to school to complete teacher certification. Unfortunately, my lupus quickly brought that endeavor to an end. I thought I knew where I was going with my life, and then suddenly I didn’t anymore. My husband and family were supportive, but they could only help me so much. A lot of my struggle was internal. I didn’t know what I supposed to do with myself once my lupus made me too sick to work. I felt like I didn’t know who I was anymore.
I sought refuge in something familiar – knitting and crocheting. I’d taught myself as a child, and it came back to me quickly. I could do it on the sofa, or even in bed if I needed to rest. The fiber arts became my comfort; this gave me something to do with myself. I read about knitting and crocheting, learning all sorts of new stitches and patterns. I read about related subjects, too, and I learned to card wool and spin yarn, I learned to make dyes from plants and dye my yarn, and eventually I even got a loom to weave yarn into fabric. I started to sew again, and make my own clothes. All of these efforts didn’t just keep me busy, they gave me something to focus on other than my pain. Not only had I found something to do with myself, I had also found something I could enjoy, something to be proud of. Through this process I remembered that I love to learn, through reading, through new challenges. That is an essential part of who I am. I wasn’t lost anymore.
There were still days when I was miserable, and my cats were a great help on those days. They didn’t mind at all if we had to spend the day in bed, as long as there was a good spot where they could curl up. They kept me getting out of bed on those rough days, since they expected to be fed no matter what. They entertained me with their antics and made me laugh. I loved them so much for that, because laughing felt really good. So did singing along with my favorite music, and hugging my husband.
I came to realize that these are the things that are important to me, and these are the things that make me who I am. I am still a bookworm with an odd sense of humor. I still love, I still laugh.
This journey didn’t happen quickly. I’m seriously stubborn, and change can be difficult for me. I have had lupus for almost nine years, and there are times when I still struggle. I do know, though, that in many ways I am still the person that I was before lupus. Lupus will never change any of that because I won’t let it. Lupus may have changed me physically, but it won’t change my spirit.
So what does lupus mean to me? Lupus may mean making some sacrifices, but it doesn’t mean sacrificing who you are. Lupus means remembering every day what it is most important, concentrating on what is most precious, and never letting go of any of that.”
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Christine is “ a vegetarian, cat-loving, bookworm who creates historically-inspired, eco-friendly fashion and tries to live the green life, all while living with lupus. “ You can find her on Twitter as @windyhill, on etsy.com , and on her blog at Lupus Girl. Stop in and say “hello”!
