Lupus is a severe auto immune disease characterized by inflammation of various parts of the body. I was diagnosed at age 18, after being very ill since age 14. I’ve learned a lot about this disease in the 15 plus years I’ve been battling. Here are a few things I wish I could share with everyone , everywhere!
1. The tired I feel with Lupus is NOT the tired that a good night ‘s sleep will remedy. This is the tired of the flu, or a virus complicated with a cold complicated by running a marathon complicated by being run over by a truck, if that makes sense. THAT kind of tired.
2. There is no such thing as a good night ‘s sleep with lupus. Yes, they will give you sleep meds. Yes, you do eventually pass out from exhaustion. But it is not the same thing as a regular sleep when you are healthy.
3. The pain of lupus is not like pain from a regular injury or sickness. Did you ever get a really bad sunburn? Hurts like the devil, doesn’t it? Ok. Now imagine that on your whole body, right down to your very bones? Not pretty, huh?
4. Medicine sucks! Yes, it is helping to keep me alive. But, it’s chemo. Or organ destroying medication. Or enough steroids to kill a moose. My hair is falling out, I’ve gained 100 pounds in 5 years, and I’ve got enough mood swings for a whole bus load of women with PMS.
5. You can ask me questions! You don’t have to tippy toe around it. I’ll shout it for the whole world to hear! Lupus is the pits! Ask me anything you want to know! I don’t bite. (Much) 🙂
6. And finally , the last thing I wish I could tell everyone, everywhere. I don’t need your pity. I accept my life for exactly how it is. I’m not feeling sorry for myself. Life is worth living no matter the cost. I am still blessed. I have family who love me. I have my sense of humor! The sun still rises. These things still ring true. And if I were not to wake up tomorrow, I would hope that those who knew me best , would know that they would eventually smile again. Lupus is the pits. But I choose to smile , anyway!