Chronic Kidney Disease and the effects of brain fog

You’re probably scratching your head and wondering why on Earth I’m talking about CKD on my author blog–but this is my platform so here I am. For those of you who don’t know I was diagnosed with CKD in May 2017. I was 23 at the time (25 now) and it changed a lot for me, but that’s something I’ll talk about in a future post. For now, I want to focus on brain fog and how it effects people with kidney failure. There’s not a lot out there about CKD and the symptoms/effects of it from the POV of a patient. I want to change that.

When my kidneys failed in 2017 I was at death’s door and had been experiencing symptoms for a long time, always making excuses and never thinking it was anything serious.

In fact I started experiencing the brain fog as early as 2012. I’d had sepsis in 2011 and blamed my short term memory loss on that. I’ve always had a really good memory–frustratingly so to those around me. Suddenly I couldn’t even remember what I ate for breakfast. Sometimes I’d forget complete conversations as soon as they happened. It was annoying, but at the time I didn’t think much about it thinking it was easily explained.

Then I started struggling to read.

I’ve always been a reader. I’d rather read than watch TV most of the time. But suddenly I couldn’t finish a single book. “I’m in a book funk,” I declared again, and again, and again. Sometimes I wish I could go back and shake myself for being dense. I went from reading over 100 books a year easily to struggling to read 40. Again, I blamed it on being in a funk, or picking the wrong books, or just not being in the mood. I had an explanation for everything and it made sense in my mind. It sucked not being able to read, though. It had always been a form of escape and now I found myself repulsed by books. Since I wasn’t able to get into anything I found myself avoiding books all together. Every now and then I’d stumble across something that captured my attention and sucked me in, but then it was right back to my funk. This started in 2013 for me and continued until I got a transplant August 2018.

In 2016 I began having trouble writing. Now, for me, writing has always been second nature. As easy as breathing. The words flow from me like my fingers know the words before my brain does. I don’t plan, I’m a pantster. I start with a general idea and the whole thing spirals into a book from there. But the words weren’t pouring from me like they once did. AGAIN, I made excuses–logical ones. “I’ve been putting out 6 books a year. I’m just tired.” “I need a break. I’m working too much.” “I’m not getting enough sleep.” On, and on, I went with these “logical” explanation. And they DID make sense–to me and even my family. We all dismissed the brain fog as easily as swiping a fly away. I went from writing a book in 4-6 weeks to at least 8 weeks. Then it started stretching longer. Then I started getting angry, with myself and my characters, that it was taking me so long. I’ve always naturally written fast. I’m so excited to write what I’m writing that I fly through it–then I’m so excited to move on to the next book that I start it without a breath in between. Writing lights my soul on fire and suddenly I felt like it was killing me. The most infuriating part came in 2017-2018 even after I started dialysis. The ideas would be there and I’d sit down to write, but they didn’t pour out of me like they used to. I’d write 50 words and stop. It’s like my brain would hit a wall, and where normally my fingers would keep moving, writing the story faster than my brain could keep up, I just … couldn’t remember, couldn’t get the words to come out that had been there a moment before. They were gone, like smoke in the air. For the first time writing started feeling like a JOB. Something I had to do to make money (since this is what I do full time) instead of what makes me happy with the money being a very nice bonus. Don’t get me wrong, I still wanted to write, but with it being so difficult it was a struggle and worked on me mentally and emotionally because I worried maybe it wasn’t making me happy anymore. Maybe this wasn’t my future like I always thought. Getting a transplant completely erased those worries but I’ll expand on that in a moment.

To back track a bit, before I got my diagnosis, but closer to that time I started doing REALLY stupid things. Not on purpose, but stuff that made no sense and I’d ask myself, “Micalea why’d you do that?” Some of the details are fuzzy now, either from the brain fog at the time or my own defense mechanism of blocking it, but I remember in late 2016 getting lost. I don’t even know where I was, just that I was in my car, and suddenly I couldn’t remember how to get somewhere. I wasn’t in an unfamiliar place either–I was in my home town. That was the first time I remember feeling SCARED and knowing in my gut something more must be going on. (And yet I continued to deny it out of pure stubbornness) I started making excuses to not drive, terrified it would happen again and I’d have to explain to someone what was happening. The last thing I wanted to admit was I thought I was losing my mind. After all I was 23 and I was getting LOST. That shouldn’t be happening. I also noticed when I did drive my mind would drift of its own accord and I just felt shakey driving. I knew I wasn’t safe on the road for myself or other people, so at some point I stopped driving all together. If I went somewhere someone had to drive me.

I can’t even begin to tell you how scary it is to feel like you’re losing your mind–and being too terrified to tell anyone. How do you possibly explain something like that without sounding like … well, like you’ve lost your mind.

So here I was struggling to write, to read, to drive, to basically function through the day. I felt like I was living a lie, pretending to be okay when I definitely wasn’t.

When I ended up in the ER and the nephrologist asked me if I was having trouble remembering things I gasped and said yes. She explained about the brain fog and I nearly cried with relief because I WASN’T crazy. It was this disease wreaking havoc on my body, filling my body with so many toxins my brain couldn’t even function. In fact, when she learned I’d still been writing and was an author she couldn’t get over how I’d done it. Looking back, I don’t know how I did ANY of it. Sheer force of will, I guess. I’ve always been too stubborn for my own good.

I’ll admit, after I started dialysis the brain fog got better, but I knew I still wasn’t functioning like normal. Reading was easier, but not like before, writing was still off, and I still occasionally couldn’t remember things. But it truly was nowhere near as bad.

Then I got a kidney–and I feel like crying as I write this and I felt like ME again. The ME I haven’t felt like since probably 2009-2010. That’s nearly TEN years ago. I can remember things again and not struggle to recall things. I’m reading like crazy (making up for lost time actually it seems like, lol) and writing … I planned on waiting a month or so after surgery to start writing again to give myself time to heal. But pretty immediate after surgery the book I knew I wanted to write next started screaming at me, demanding I write it, just like all my stories once did. I can’t tell you how amazing it’s felt to have the words stream onto the page and I don’t have to fight to get them out of my brain on paper. It’s beautiful. It’s a gift. A precious gift to get this kidney and be ME again.

I remember not too long ago my grandma asking me to try to explain how the brain fog feels and the only way I can accurately describe it (which I touched on above) is say you’re walking along, you’re going in one direction and know your destination, then suddenly there’s a wall in front of you and you don’t know how you got there or which way to go. It’s like you’re stuck. You stand there, trying to figure out where to go, what to do, but there are no thoughts. Just quiet. It’s like your brain is too tired to even form thought. So there’s nothing but emptiness and silence–and man I didn’t know silence could be so loud. Maybe brain fog isn’t like this for everyone but that’s how I felt.

Brain fog is a serious issue for CKD patients. We’re real people, with real lives, with jobs, and tasks to complete and the brain fog can make you do the most illogical things. I thanked my lucky stars every day I worked from home, could make my own hours, and didn’t have to work somewhere outside the home.

It’s yet another hurdle CKD patients have to push past, because you CAN’T let this disease take any more from you than it already does. The best you can do is make your own new kind of normal.

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