Today I was fortunate enough to come home from work early and take a nap. I work full time and even though my job is protected through FMLA, I can only use so much of that during a month. Some days I don’t feel bad enough to stay home, but I don’t feel good enough to work all day either. Plus I know that pushing myself can sometimes be detrimental and cause a flare.
For me, having lupus is an everyday adventure. It’s very hard to plan to do things because I don’t know how I’m going to feel on a daily basis. The consistent thing about my lupus is that I can count on being extremely fatigued most of the time. I’ve decided that if I’m going to be tired, I’m going to be doing things that I want to do.
I’ve also had to learn that I need to listen to my body. When I don’t, I can look forward to a week’s worth of struggle to get back to “my normal”. What’s also challenging about the chronic fatigue is that sometimes friends and family just don’t understand it. I have to explain it over and over to the people who mean the most to me. They don’t understand that enduring an entire work day sometimes feels like I’ve manual labored for three days straight. They don’t understand why I’d skip dinner and just go right to bed. It’s because I’m that tired. Sometimes I’m so tired after a shower I just have to lie down and rest for a bit. But then there are other instances when I’m able to do a full day on the job, clean the house, run my daughter where she needs to go and visit with friends and be just fine.
So I appreciate the confusion that some can have about how I’m living my life, but the difference is I’m refusing to do things that, in my opinion, waste my time and energy. I don’t want to be around people that don’t make me happy if I don’t have to; I don’t want to spend time in places that I don’t want to be.
Lupus has shown me that life is really precious and you have to make your own good times since they just don’t happen. By choosing how I want to use my energy for the day it makes it easier on the days when I do little or nothing but rest and recover. It makes me feel less upset about not being able to follow through the plans I had with friends because when I’m with them they know it’s truly a blessing.