For-Ev-Er

I’m “at that age,” as people say. The age where I am constantly going to weddings and baby showers. Recently, I was talking to a friend of mine who is pregnant and hasn’t been sleeping well. “Do you ever feel like you can’t catch up? Like you could sleep for days and lay on the couch and never feel better?” I stared at her, not knowing what to say. “Of course you do. Well, that’s how I feel right now. Never 100%.” Something like that. She continued.

Afterwards, I was thinking about it. I don’t know that I’ll ever feel fully 100% again. What does that mean? Do I have to do like in The Devil Wears Prada? “0 is the new 4, so 6 is the new 14.” Make it so my 60% is the new 100% for me? Is that fair? I was also thinking about the last several days I’ve had where I just can’t seem to feel better, no matter what I do or eat or work out or sleep or anything. (Since I don’t feel better regardless, I’m staying up late watching shows and eating crap. Remind me this is a bad idea.)

Sidenote: Last week, I was talking with my boss of 8 years about it. He was asking what I can and can’t handle at work with Louie. There was a part of me that left wanting to cry- I hate having to have that conversation and know what I “used to” be able to do is so far out of reach now. End sidenote.

All of this reminded me of a conversation I had over Christmas with a long-time friend of mine. She was asking me about Louie. Since we’ve pretty much been on opposite sides of the country since my diagnosis, it was her first time to really see me and ask questions. We talked about all sorts of other things as well, but I really only remember this part of our conversation. She asked the normal questions about how I’m feeling and what I can do to control it and all that. I told her how rare it is for me to have a day where I feel somewhat good and normal. Then she said it. “I hate even being sick for 3 or 4 days. Let alone… [she paused as she thought about her words, but I knew exactly what she was going to say.] …being sick forever.

Sick forever. That’s it. That’s me. That’s the sum of it. Unless God intervenes in a big way, or there are some huge breakthroughs in science, or I can get an immune-system transplant, I will be sick forever. Each day.

I generally like to offer hope or show my faith in God at the end of my posts, but tonight I just want to leave it at that. I know God is big and He’s looking out for me, but tonight I hurt, and I’m tired, and I’m not sure what tomorrow will look like with Louie. Tomorrow, when I wake up, I will have Louie to contend with, but I will have Christ to walk with.

[Sidenote on science- as awesome as it would be for the researchers to find a drug that drastically helped lupus and related illnesses, most of them don’t kill people. Personally, I’m glad there is more funding going to breast and pancreatic cancer and other diseases that regularly take lives. I also know that there are hundreds and thousands of people living with lupus who have it harder than I can even imagine. But still, it’s not ending their lives any time soon.]