Have you ever had a day when you just stared off into space? Not staring and thinking deep thoughts about your future. Just empty, with 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 disease has become too much to handle any more and my brain went bye-bye. So, I thought I’d let you into the taboo side of chronic illness and pain. The stuff we really don’t want to admit. The thoughts we may 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 pain is draining. Add to that the daily demands of running a home and raising kids and you have the perfect storm for extreme fatigue. And extreme frustration. And we crack. Because being nice and patient and understanding is also hard work. And when our brains get tired of fighting our disease, we may not care about the niceties anymore. My brain already fled so only fight is left. And it doesn’t matter who gets in the way (sorry)!
2. I am sad. It’s emotionally drained. It’s extremely hard to deal with an illness every day and then still be able to deal with what comes in every normal relationship I know of. Disagreements. My husband and I are no different. We argue. It’s not always roses and chocolate. And to be honest, I don’t always have the fortitude to deal with any discord, 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. (And if it’s about the kids, fuhgetaboutit!) Pain makes everything personal and much more intense. So the small stuff becomes huge and nastiness becomes much more easy.
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 illness. I’ve had to. I would never have gotten out of bed otherwise. But these diseases are progressive and constantly change over time. So we have to constantly readjust our mindset. And let’s be honest, it has to become part of who we are. We can’t exist by putting on rose-colored glasses and ignoring it. So the feelings have to be accepted and allowed to come out, too. But that can cause intense fear that can leave us overwhelmed to the point of motionlessness.
4. I am confused. And confusion is very frustrating. And time-consuming. You see, my body remembers everything it used to be able to do. From dancing to walking miles to rearranging furniture all by myself carrying pieces up and down stairs. So sometimes, I still think I am capable and try to do those things expecting that I will be able to. And when I can’t, I either end up hurting myself or I have to find someone else to help me.
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 disease progression and pain management. And I worry about where I will end up when I can’t care for myself and who will care for me. I worry about that when I’m tired, hurting, or alone. And I’m alone a lot. And I’m scared. I think about giving up a lot, too. I don’t talk about it, but I think about it. And honestly, in some ways, giving up feels equivalent to being pain-free again and on days like this, that’s all I really want.
When my brain gets like this, what I really need is some sort of regeneration. I’ll watch a movie, find funny shows on TV, watch kittens on YouTube, or bundle up and sleep! These “lost brain” days don’t last forever. And they’re not as common as they may seem, though they do tend to come in clusters. But 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.