Sometimes it can be very hard to put into words what life is like with a chronic condition. There is monotony in focusing on it too much and sometimes writing about it feels like I am indulging it.
To be perfectly honest, I have grown so accustom to my sarcoidosis that there are times, I don’t even give it a second thought. Certainly, this wasn’t always the case. In the beginning I was quite sick, feeling lousy, unable to breath and not yet sure what was wrong with me. Those were dark times.
But, the good news is, times change. And, with change comes an ability to adjust. I’ve adjusted. But let’s not confuse adjustment for…well…any kind of pleasurable acceptance. My acceptance of this disease and what it has done in my life is only begrudging. I accept because I must…not because it’s fun.
Back to my point though, since growing accustom to it, I also sometimes don’t even think about it and when I’m not thinking about it, I run out of words. I don’t know what to say about it.
At first this was alarming to me but now I realize that it is probably a good thing. It means that I’ve learned to live with it and you need to do that to survive life with a chronic condition.
My breathing struggles, my painful weak legs, my insecurities about my physical strength remain. The difference is that I have learned to incorporate these concerns into my daily living. I’ve learned to accommodate them, to the point that I actually feel, for lack of a better word, normal…most of the time.
I’m even lucky enough to forget that my normal isn’t really normal. Maybe this is some form of denial but I don’t think so. I think it is survival. We all must learn to adapt and change to our changed conditions or we wither, right?
So, my life now feels pretty routine. It feels ordinary. I’ve established routines that work for me and they ease the symptoms of my disease which in turn allows me to have a better life.
In short…I’m feeling pretty good these days and feeling pretty good means I don’t have a lot to say…about my disease anyway.
Of course this could all change tomorrow. That’s the precarious thing about this disease. It can change on a dime. So, for today and I do mean this one singular day, I will enjoy that I have run out of words, because I am certain I will find them again on another day…a day that’s not so good.