Have you ever had a day when you just stared off into space? Not staring and thinking deep thoughts about your future, but empty. Random thoughts floating around occasionally, but nothing coherent. And definitely nothing cheerful!
This is the place I am in right now. My brain has just shut down. The chronic illness has become too much to handle at this point and my brain went bye-bye.
So, I thought I’d let you into the taboo side of pain and chronic illness. The stuff we -or at least I- really don’t want to admit. The thoughts we have when our brain and body are at their lowest.
1) I am tired.
That’s why my brain shut down. Fighting pain is hard, and those of us in daily pain don’t ever get to rest. The constant struggle of trying to stay physically in control of our pain is draining. Add to that the daily demands of running a home, a career, or raising kids and you have the perfect storm for extreme fatigue. Add extreme frustration and we crack. And it doesn’t necessarily matter who gets in the way when it happens-sorry!
2) I am sad.
Because I am in pain and I cannot control it or my reactions today. But life goes on. So does family discord. My husband and I are no different. And to be honest, I don’t always have the fortitude to deal with it, whether it’s about a burnt dinner or the several hundred bucks he just lost at the casino. I’ll end up in a puddle of tears. Pain makes everything personal and much more intense. So the small stuff becomes huge and nastiness gets easier.
3) I am depressed.
It’s hard to stay positive and accepting of a disease that causes so much pain, weakness, degeneration, loss, forgetfulness, uncertainty… I could go on, but you get the point. Obviously, I have accepted my chronic illness, but these diseases are progressive and constantly change over time, so we have to constantly readjust our acceptance of what they have done to us. But the feelings that go along with this process have to be experienced as well.
4) I am confused.
And confusion is very frustrating. You see, my body remembers everything it used to be able to do. From dancing to hiking through the woods to carrying stuff up and down stairs. So sometimes, I still think I am capable and try to do things expecting that I will still be able to. And, at this point, I usually can’t, which has really just caused me more problems.
5) I want to give up.
I know the facts about my disease. I know what my back injuries mean. I know what the future probabilities are for my disease progression and pain management. And I worry about where I will end up when I can’t care for myself. I worry because I am alone a lot already. And I’m scared. I think about giving up a lot, too. I don’t talk about it, but I think about it. We all do. It’s a way to end the pain. It’s just not a good one.
In the end, when my brain gets like this, what I really need is some sort of regeneration. It’s too easy to continue that downward slide when we acknowledge our dark side. So here are some ideas for pick-me-ups after your day or so working through the harder emotions having chronic illness brings to us all.
Watch a mindless funny movie -my fave is Zoolander!
Find funny fail shows on TV-I so love dumb criminals!
Watch kittens on YouTube-you must admit cats getting scared of hair clips is hilarious!
Bundle up and rest with aroma lotions and tea!
And remember: these “lost brain” days don’t last forever, they’re not as common as they may seem, and they do not control you. After 20+ years of this, the silver lining seems to be the fact that by letting these days happen, you allow for a mental reset. The negativity gets acknowledged, then let go. And that’s exactly what needs to happen in the long run!
ABOUT THE AUTHOR:
Born and raised in Rochester NY, I was diagnosed with Sjogren’s 4 months after my second son was born. My kids are now 21 and 23 years old. I have since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. My medications, in turn, have caused me to endure two back fractures. I raised my kids, worked a career for over 30 years, and been a wife to my husband of 27 years all while being diagnosed with an autoimmune disease for 22 of them. I can no longer work but I do volunteer at an animal rescue organization as a kitten cuddler and I write about my experiences with my diseases while wrangling our one rescue dog and three rescue cats.