Rough Waters
One of the things that nobody talks about when you get diagnosed with a chronic, invisible illness, much less multiple ones, is how lonely it can be. The first time around, I really found out who my true friends were. I lost some, being completely honest, but I also gained some, although they were online. The people I met in my online support groups have been amazing. They know exactly what I’m going through, but sometimes, you just want some one to come over and sit on the couch with you and watch movies.
It’s tough because you can’t always drop everything and go out like you once did. You have to make plans, days in advance so you can rest up and conserve spoons just to be able to go out for a few hours. And it’s hard because people try to understand, but no matter how much they try, they won’t get it. They don’t understand that. I can sleep for 8 hours at night and still take a nap during the day. They don’t understand that despite all that sleep, I STILL feel exhausted all the time.
My husband (whom I cannot brag on enough) and I were talking about the differences in my symptoms from the first time to this time. Some are the same, the fatigue and nausea. But I don’t have the dizziness and unsteadiness, at least not yet. I know it’s coming, I’m trying to prepare for it. But how do you really prepare for a storm that you don’t know how it’s going to hit?
I mean, it could barely touch you. Or it could slam you so hard that you can’t function. How do you prepare?
We were talking with a friend at church yesterday, and he kept saying he just can’t imagine what we are going through and that we seem to be handling it so well. I was like “dude, you don’t see behind closed doors”. Most days, yes, I handle this well. I know there’s a reason God brought it back. But I have my moments. My moments where I break down in tears and ask “why?”. My moments where I am crying so hard that I am shaking and no more tears will flow. My moments where I am so tired of the loneliness that I question what my purpose is, (Don’t worry, I’m ready to meet my Jesus, but not by my own hands.)
When you get diagnosed with an invisible illness, they don’t tell you that sometimes, you too, become invisible. And that is the rough water that is hard to navigate….