Most people don’t understand Lupus. I don’t define myself by the Lupus attacking my system, but it does affect the way I live my life, how I interact with people and the world around me. They don’t understand why at only 42 I find myself heading to bed at 8 or 9 pm. Why I don’t join craft groups, reading groups, church groups. Why I would prefer to just hang out at home with my husband, reading or writing or watching a movie. Occasionally my (mostly) grown younger son will grace us with his presence, but mostly we stick to ourselves. It’s not that I don’t enjoy people. We have many, many dear friends that we love to spend time with. It’s just that I can’t really plan my life ahead too far. Just when I am feeling well and plan that big dinner party, something triggers my Lupus and I find myself in bed for days. My friends understand, but it gets hard on them to include me in plans when I am so unpredictable.
So what come after a 5 week Lupus flare? After 5 weeks of incredible joint pain? After rounds of pain meds and steroids? After the side effects of those very same drugs finally go away? After having my eyesight and balance go bad and then finally be restored? After pushing myself just to get out of bed and get dressed for work becomes so hard I almost give up and just stay in bed? Well, I just get out of bed and start another day. Thankful that my joints aren’t as swollen, aren’t in as much pain. I am thankful that my head is clear enough to write today, and to help my husband around the house. I am thankful that I can have the energy to get completely dressed today. Even with socks! I etch these blessings and small victories in my mind and heart. I save them up for those days in the future when I can’t do anything but lay there and wait for my body to stop attacking itself. So I can remember what it feels like to be flare free.
So I am going to go out and make some more flare free memories. I can’t dwell on the degeneration of my body. I will keep moving forward.