A fun sidekick of chronic illness that can be a real nightmare is, drum roll, please … BRAIN FOG! (a.k.a. Lyme brain, Fibro brain, my mind is mush, and so on and so forth). The stress of constant pain on the body occupies the brain completely in turn leading to a barely functioning mind. Quick disclaimer: If I make horrible grammatical mistakes or ramble on in a post (like I’m probably about to do now), this will be my excuse; consider yourselves forewarned. Brain fog shrouds my mind daily. I forget EVERYTHING. I’m terrible with remembering names and details that came easily to me before. I mix up dates, times and places. I have to question my own thought process because I regularly catch myself thinking things that are completely wrong or nonsensical. Luckily, I’m still quick to catch some before I say them out loud! For months, I caught myself thinking that Missouri and Colorado were the same state or mixing up one for the other. Last week, my husband Sean badly sprained his ankle while refereeing a soccer game. That night we were watching TV together and two characters were riding in a car arguing when the passenger yelled angrily, “I’ll walk!” and got out of the car. I caught myself thinking, “No! You can’t walk on that ankle!” Yes, I worried over the ankles of countless television personalities over the next few days.
While brain fog is a constant for me, it varies in severity from day to day. Some days I do pretty well for myself and see glimpses of Alyssa before Lyme Disease, but other days, I’m lucky if I even get the right words out of my mouth. My brain confuses two words that sound similarly, but the meanings of which are nothing alike. Several months ago I was watching TV and wanted to change the channel and kept asking if someone would “please, bring me the result”. Everyone in the room was looking at me with puzzled expressions, but I kept asking until I finally realized that I wasn’t saying “remote” like I thought I was. Even after I realized my mistake, I found myself calling the remote “the result” a few more times that day! It’s completely frustrating when you think one thing, and another entirely comes out of your mouth, especially if you have no history of your mind functioning this way.
Any time I talk about brain fog, I usually have at least one person who pipes up and says, “Oh, I must have had brain fog for years then! I’ve always done that!” I’m absolutely sure it’s just as frustrating, perhaps more so, to be experiencing those issues since day one or as you age, yet the indication of illness-induced brain fog lies in a distinguishable and unexplained change in cognitive ability. One of the tell tale signs that something was not right with my body happened back when I was still able to attend college classes and had only recently begun experiencing deteriorating physical health. I had an exam that day and had spent hours and hours studying. I walked into the classroom and the professor had courteously written on the board a list of five statements that would be on the exam so that we could have a final look at them before we began testing. I read them over several times and when the exam began I immediately sought out the complex fill-in-the-blank question confidently secure of the answers. Just as my eyes found the five blanks on the paper my mind went equally blank. That particular question wasn’t the only issue for me, I struggled through the majority of the exam. A memory lapse of that size was highly unusual for me especially knowing that I had more than adequately prepared for the exam. At that point, it became blatantly obvious to me that my mind had also been compromised by whatever mystery condition was affecting me physically, and that is an indescribably terrifying feeling.
Fueling the brain fog, I suffer from adrenal fatigue. Healthy adrenals provide a spike of adrenaline in the mornings when you’re getting out of bed or a few hours after you’ve been up and moving. Then, you’ll have little peaks and valleys throughout the day and transition into a slow decline at night as you get ready to fall asleep. When you suffer from adrenal fatigue, your adrenaline levels stay flat-lined all day causing a severe lack in energy. This is the case with my body except that right around bedtime when I need to wind down to fall asleep I get a small spike of adrenaline. Attempting to think when you’re functioning without any adrenal support all day and are under the added stress of pain among other debilitating symptoms of disease is like trying to swim laps in a concoction of quick sand and ultra thick chocolate pudding (my apologies, I’m a little bit hungry). So when that minute amount of adrenaline kicks in, it’s an insane feeling. I’ve been known to say on more than one occasion, “Wow, I can finally THINK!”
After struggling to function mentally all day, finding myself able to think somewhat clearly at last feels exhilarating. At one o’clock in the morning, I suddenly remember that four days ago I was supposed to call you and discuss something, or that I never replied to the message you sent me last week, or I remember the name of the movie I wanted to tell you about or the word I could not produce no matter how long it sat on the tip of my tongue. So there I am, thinking, “HALLELUJAH, I REMEMBER” … but it’s the middle of the night, and the majority of humans I interact with are fast asleep. I make yet another mental and sometimes physical note to help me remember to tell you during normal hours, but nine times out of ten it’s not happening.
Logically, it’s difficult to decide to waste that holy grail of brain power and go right to sleep; not that it’s ever that simple to fall asleep when you’re severely chronically ill, but it definitely makes it even harder. I have to remind myself that my body desperately needs the sleep and that I should do my best to quiet my mind. Yet, when the adrenals kick in at night, it also fuels another of the worst sidekicks of chronic pain and illness, the BFF of brain fog, insomnia.
Some nights my insomnia is fairly mild. I take a few hours to fall asleep, but eventually I drift off. Simple nights like that I enjoy occasionally. I’ve always been a night owl, and there’s something special about that quiet time alone with my thoughts (because YAY, MY BRAIN IS WORKING). I can imagine and dream and plan unrealistic adventures and futures that I’m too much of a realist to allow myself to get away with when the world around me is stirring. I can mull over conversations I had that day (or meant to have and need to have in the morning), organize my thoughts, map out a mental to-do list or simply take some pleasure in the stillness and clear thoughts. Then, when I convince myself I must relax and go to sleep, I can watch episode after episode of whatever Netflix series is my current obsession to distract myself from the constant pain I’m feeling and slip into sleep. Sadly, those nights are rare.
On the average night, I’m in far too much pain to lie still and relax. My muscles stay tightly clenched from the shooting nerve pain all over my body which leads to more muscle spasms and tremors which spawn even more pain. My arthritis and joint inflammation hit in full force. My head pounds from my usual daily ache into a full migraine. The nausea and vertigo crash in like a tidal wave. I feel the room spinning and my stomach throbs with pain. Acid reflux burns in my throat, and no matter how I position myself I cannot get comfortable. If I wait for sleep to come in total darkness and stillness with nothing to distract my brain from perceiving the pain, I think I will lose my mind entirely. Lying still and quiet is torture. So I set up a laptop with a show or movie or listen to an audio book to try to distract myself from the pain, but I can barely process the dialogue. I toss and turn, drifting in and out of a fitful sleep hour after hour until eventually around five or six in the morning, I fall into a continuous sleep. I won’t be able to leave my bed until somewhere between noon and two o’clock in the afternoon, but even if I sleep for 8 hours, I wake up feeling like I never slept at all. Nights like those, most nights, I suffer from more than simply insomnia. Chronic pain sufferers call this phenomenon Painsomnia. Pain + Insomnia = Painsomnia. Yes, my average night sounds like a scary movie title.
I can’t complain too much, though because I’m incredibly blessed with a wonderful mom who stays up late and reads to me to help me fall asleep when I’m staying with her in Tulsa, and an amazing husband who does his best to help me with whatever I need during the night when I’m at home. It’s not unusual for me to sit up and frantically say, “Sean! Sean! I need an anti-nausea pill!” or “I really need more pillows, please!” or his favorite, “Will you please make me some popcorn?” I can barely eat all day due to nausea and stomach pain, but somehow in the middle of the night I think I can get that popcorn down. No matter how many times I wake him, whether it’s with needs or because I’m in tears from pain and exhaustion, he never gets angry or frustrated with me. He never blames me even if he’s completely and entirely exhausted because he needed to get up early in the morning. What. A. Man.
Even with the love and help from my mom and husband, I spend a lot of the night awake by myself and greatly suffering. Facing painsomnia night after night and brain fog daily is a lonely miserable experience I wouldn’t wish on anyone, but in the depths of my toughest moments when I feel my most alone, God is there with me whispering, “Be still and know that I am God.” He is God, and in every circumstance, He is good. I cling to the peace that surpasses understanding, and every night, I survive. Every day is a brand new day, and no matter how much pain or mental confusion I feel when I open my eyes, I try to smile as often as I can throughout the day because I still have PURPOSE. I try my hardest not to forget that, even when brain fog does its worst.