I hate losing my independence, even if just for a short period of time. I hate needing others to do things for me that I normally do on my own. I hate how sometimes you just have to admit that you can’t do it in your own because. Because I’m sick. Because my body has decided to rebel against me.
I love how Beloved gets this about me, how he knows to keep his distance at times and at other times to be there to help before I even know. Of course it isn’t always smooth sailing for us. I have had years of living with lupus and have figured out various cues and signs. But Beloved, he hasn’t as long with lupus and because it isn’t in him it’s different. Some days when it’s all I can do to struggle through the small things like making the bed, getting dressed after a shower it will occur to Beloved that we both need to get out. Sometimes even when those tasks are like climbing a steep mountain he will take me out of the house.
Beloved figures if I get out I can sort of get involved enough to ignore lupus a little. Now and then he is right. But some days there are errands that need doing and no way I can do them. He will still want me to go in the car with him who,e he drives about town to complete the errands. It’s all I can do to stay present during those times.
These are the moments when we are both aware of how I can face limitations of spending my time and day. Some of the errands are not ones Beloved would like to run, but if I’m unable to do it then it falls to him. Knowing he hates doing those errands makes it even more miserable for me.
But we’ve had good times with all of this too. Beloved was introduced to the world of makeup and make up brushes. He has successfully navigated the world of three million shades of pink nail polish to find the right one for me. He has picked up the two million yards of fabric that made up one of my dresses from the seamstress once. And he has become an expert with some of these tasks.
You are unsure which hairspray to get, don’t worry, just ask him. Struggling to choose the right nail polish? He has learned how to match the color based on skin tones. He also knows which hair brushes add volume to hair as well as which ones add shine.
I guess, as I sit here in his dreadful white room with splashes of color courtesy of Beloved I see the balance we have come to with lupus. And somehow while we deal with the moments that we dislike, we also find a way to laugh through it. Because here is always something funny to be found, lupus or no lupus.