Brain Struggles and Brain Fog

This post was originally posted on Blogger July 9, 2024.

Brain Fog…What is it? Is it a real thing?

According to Dictionary.com, it's "a mental state marked by difficulty remembering, concentrating, or thinking clearly, often caused by exhaustion, stress, or illness."

While Brain Fog is all these things, it is also so much more personal and runs so much deeper when you are the one living with the brain fog which accompanies chronic pain. If I’m being honest, Brain Fog takes on a whole new meaning when your days consist mostly of doing things to manage your pain. It is probably the one thing about chronic pain that causes me the most internal distress and negative feelings towards myself. It is embarrassing and makes me feel not very smart, which causes me to feel bad about myself. I know logically I’ve got nothing to be embarrassed about. It is a common side effect of living with long term physical pain compounded by the side effects from some of the medications prescribed. Chronic pain is a very complex health condition, which causes all sorts of mental health issues in addition to the pain, and many of the medications prescribed have similar side effects. Those side effects also contribute to brain fog. So it’s like a double whammy. Add in that I’m also beginning menopause, and you have the trifecta of Brain Fog causes.

If I’m being honest though, knowing all that I know about chronic pain and how it affects the brain, doesn’t stop me from getting embarrassed, even though I know it’s not my fault. It’s troubling and upsetting when for the 5th time in an evening I’ve lost track of what I am talking about, or what the other person is saying. It can cause me to feel shame and like I’m doing something wrong when I keep losing track in a conversation, I forget about a commitment I’ve made or get distracted and forget to do something I said I’d do. I often need verbal cues to trigger my brain to continue with the thought, or remind me of what I forgot to do. It’s frustrating. It’s like my brain shuts off. My mind literally goes blank and I freeze up trying to remember what was being said, which causes me to become awkward, stressed and embarrassed. 

I am getting better at not feeling as embarrassed and rather than going quiet and saying nothing when I lose track of my thoughts, I am asking for verbal cues to trigger me in being able to continue with my thoughts. I also rely on my mom a lot to prompt me through the day, and recently got an Amazon Echo that I have set up at my desk to help in managing my poor memory. 

It is what it is, and is something that is not going to change overnight given the multiple causes for my Brain Fog. It really is one of the most challenging and damaging side effects caused by chronic pain that I have experienced, and is something everyone has to figure out and adapt to in their own way. For me this meant coming up with ways of managing the multitude of effects of Brain Fog so that I can be more independent and lessening how much I rely on others to keep track of my days.

Brain Fog also affects your focus and concentration abilities and how much time you can give to any one task or activity. Movies are too long and involved for me to retain enough to follow the story, and reading is similar. An example is I wanted to get back into reading, as it was something I really enjoyed doing, but over the years it became too difficult to manage which just left me feeling frustrated with myself and reading became intimidating. Last year though I came up with an idea that seemed promising, and that was to try reading graphic novels. My theory was that if I could also see the story told with images, that I might retain more of the story and that will allow me to follow along easier. So I went to our local independent bookstore in search of graphic novels that interested me. I bought a few in a series and I have to say, I am pleased with the outcome of my experiment. Not only was my brain more receptive to the combination of seeing and reading a story, it was also really enjoyable again to be reading again. It actually excited me and is something I enjoy doing daily. 

Focus and retention doesn’t just affect me with movies and books. It affects my relationships too. I especially work hard at trying to be fully focused and engaged when I’m with my family and friends, and part of that is being an active listener. But how do you do that when your brain is always overwhelmed with pain signals that cause cognitive problems in processing and retaining what is going on in your surroundings? The pain signals interrupt my ability to focus on what I’m doing or what is being said (or read) and I have to use all my brain’s power to block what the pain is doing to my brain so that I can hopefully follow along with and genuinely participate in conversations. I’m worried that people will think I don’t care to hear what they are saying, or am not interested, but that is far from the truth. On my bad days, it can be a real struggle to focus, and I worry about what others' perceptions are of me, and any assumptions that go along with it. Thankfully the good people in my life accept this about me and are happy to help lessen the distress it causes me by being supportive and patient on the days my brain is scrambled and struggling.

Brain Fog also likes to make your brain confused when it’s taking in information. When this happens, I usually make a light joke about not getting it, and ask them to repeat and explain their comment. It’s another thing that takes a hit to your self esteem. Not only do you not retain the information that is surrounding you, but you also get confused processing it too. Some days I wonder if I have a brain at all.  I know that sounds harsh, but it’s how I feel. 

I also get distracted VERY easily, and that causes me to go off course with what I should be doing. I carry around a notebook and pen to write things down if something I’ve forgotten pops into my mind while I’m doing something or not able to do it right away. If I don’t, I will forget. That being said, you have to remember to look at the notebook, and if things are especially busy in your brain, you might not remember until hours or even days later. This is the reason for needing so many reminders and support in place to help remember what I’m supposed to remember. 

This has meant I’ve had to create a myriad of systems, habits and routines, both digital and old school, that all are designed to help me manage and stay organized more independently. These systems and routines I’ve created for myself make it easier to retain some self-reliance and ability to function doing normal, everyday things that most people take for granted. It is a lot of work, having to have extra steps and supports in place to do simple things, but also very encouraging when you figure out a way to ease that difficulty. In finding ways to manage my challenges successfully, I’ve seen some improvement with my self esteem and how I view myself. It takes time, but it does happen.

There is science to support that the pain signals being sent to your brain interfere with your brain’s normal functioning. It causes the neural pathways which would normally take their regular and efficient routes in your brain to have to take detours. Longer detours. Multiple detours. These detours around the areas of your brain that are affected by pain signals mean that your brain is processing slower, and differently, and that impacts how you take in and participate with people and your surroundings.

Chronic pain affects the brain’s neural pathways and your central nervous system changes. They become sensitized and over-reactive. Being in long term pain literally changes the structure of our brains. Chronic pain reduces the volume of gray matter areas in our brains, which are responsible for controlling learning, attention, memory, thought processes, motor control and coordination. This means people with chronic pain can have problems with memory processing, learning new things, keeping your attention focused on one task, and thinking through problems and finding solutions. This affects my ability to go about my day without some sort of hand holding, which for me, is my mom. 

One difficulty people living with chronic pain experience when they are trying to focus on a certain task, or figure out the solution to a problem, is that their brain is always “noisy”, which results in a reduced attention span along with issues thinking clearly and solving problems. In a normal brain, when doing a task, the part of the brain that is used for that task will become more active, while the areas of your brain you don’t need get quieter. This is so you can focus. When your brain is busy receiving non-stop pain signals, this focus is difficult. 

Because chronic pain is an invisible disability, and as such is Brain Fog. This means that most of the time you can’t always see how chronic pain impacts someone in an obvious way. It means that there are people out there who are judgemental after they have limited experience with how your Brain Fog presents to them. My favourites assumptions are that I must be on drugs or drunk. Thankfully, the majority of the people I meet and interact with for the most part are kind and understanding, and would never judge me like that or assume those things about me. Unfortunately though, I find over the years the small percentage of people who did make those assumptions about me, negatively impacted me the most because their words are the ones I remembered, and they are usually the ones we remember when we are struggling with feelings of inadequacy, hopelessness and poor self worth.

Over the next little while I will be creating separate posts in more detail that focus on what I do and the systems I’ve created to navigate Brain Fog.  I hope in discussing Brain Fog it will bring about conversations in which we share our own experiences, what works and doesn’t work, and just simply reassure each other that we are not alone. 

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