I am going to begin this post with a little bit of history…the “me” before these wonderful diseases hit.
I spent many years of my early adult life working in the medical and social service fields, often working 80 hours a week. I was always on the go, looking for new adventures. I was a certified master scuba diver and always looked for an excuse to be near the water. When my kids were born, I wanted to be able to stay at home with them. However, when it came to nap time, I was left bored. So, I decided to start my own business from home. That business grew and quickly led to another business and a third business. I was a mom, an owner of multiple businesses and constantly on the go. I loved it. I fed off of being busy. Even with chronic back issues and pain, I pushed through and got the job done. But then, one day, everything changed.
A pain in my left shoulder started it all. That pain moved everywhere and brought with it mobility issues, intense fatigue, and a feeling as though I was losing my mind. The old me seemed to be slowly disappearing.
Now, I have ups and downs with pain and fatigue. Some days are great, others I spend looking for the semi truck that ran me over (one of these days I will find that truck and press charges). While I struggle with daily pain that would knock most people out for the count, I have become used to it. The hardest part for me to deal with since all this started is the brain fog.
After I was first diagnosed and had issues with pain and mobility (brain fog had not really set in yet), I was lucky enough to stumble into a few online writing positions. I loved it and it filled a void for me. I loved the research and learning new things. It kept me busy, at least in mind, and it helped pay the bills. Unfortunately, brain fog and research writing do not go together.
I used to be able to work on many projects at a time. My mind was constantly going and processing projects, but I was able to stay focused and accomplish the task at hand. I was able to make a mental to-do list in the morning and complete everything on that list by the end of the day. When it came to research writing, it was nothing for me to have 20 or more windows open on my computer at once…and often a lot more. My brain was a busy circus with a trained and skilled ringmaster.
Now, this cloud has floated into my head and taken the ringmaster away. I still have ideas running through my head, but they are jumbled. Nothing fits where it should. A mental to-do list? Not an option. I am lucky if I can remember why I went into a room, let alone a detailed plan of action for the day. Even as I sit and type this blog post, I am constantly losing my train of thought and feeling lost.
It is as though everything is floating around in my head, but nothing is landing. I easily become distracted and struggle to remember what I was writing or doing.
But it isn’t just in my thinking. It is in conversation. I can be having a conversation and mid-sentence forget what I was saying or where I was going with what I was saying. And my words don’t always come out right. The other night I was talking about the dog and her wagging tail. I ended up saying she was whaling her tag. Words and letters become jumbled.
It happens with my typing as well. Apparently, the fog has created a cloud that often floats across as my brain sends signals to my hands. I constantly get letters jumbled up (I will type a word but all the letters are out of order). I will look up to read what I have typed and see the letters all messed up. Thank goodness for spellcheck. I also often find myself typing the same words multiple times or repeating a full sentence. I have to concentrate and focus on every word as I type it, no longer able to just sit at a computer and type away with ease.
Now, don’t get me wrong. I do have good days when the clouds move out and things are a bit brighter. Then my mental clarity is a lot closer than it used to be. Unfortunately, the cloudy days are starting to outnumber the good days, and the clouds get larger and darker. Of course, being in the midst of a flare now might be clouding my outlook a bit. The last few days have been a struggle.
Now, short of a cure, I know I will probably never get my old self back again. My ringmaster is gone (or at least he has been replaced by a ringmaster that isn’t used to running a big circus). However, over the last couple of years, I have managed to learn a few tricks that help me deal with the fog and keep myself functioning a bit better.
For everyday tasks, the best tool is sticky notes. Now, when this all started, I used the traditional paper sticky notes. My monitor was covered in them…I apologize to all the trees I killed. However, now there are all these amazing sticky note apps out there. I have one on my computer and one on my phone. I am able to post notes and to-do lists everywhere. These little reminders keep me focused. If it is something that has to be done that day, I will set an audible reminder so I make sure to get to it. Trust me…Sticky notes are your friend.
A lot of times, for me, the brain cloud turns into a storm. I get an amazing amount of ideas and trains of thought hit me all at once…my brain goes into overload. The problem with this is I can’t recall any of it. It is like my brain is working but the printer is out of ink. When this happens, I have learned I have to step away from whatever I am doing and go somewhere quiet, allowing my brain to relax and reset. This reset is often enough to calm the storm and let me get back to work. I have learned that if I try and fight the storm, it tends to trigger a deep and debilitating fatigue….and no one wants that!!
When it comes to cooking, brain fog has required me to make a few adjustments. I was always one that could remember anything. I had basic recipes locked in my head. Well, along with the ringmaster, the cloud took many of them as well. I don’t know how many times in my life I have made Yorkshire pudding (a British family recipe I have made since I was a child), but now, I just can’t remember the ingredient measurements. My mom can back me on this one…every time I go to make them I am on Facebook sending her a message “how much flour and milk.” I have to write all recipes down now or type them into the computer. If I am creating a new recipe, I record what I put in and when otherwise I will never remember.
I have also had to slow down in the kitchen a bit. I used to whip through, get my ingredients added and be on my way. Unfortunately, my brain doesn’t always register what I have already done. I can’t tell you how many times I have added too much flour or not enough, thinking my count was off. Now, I have to go ingredient by ingredient and do a checkoff, making sure the amount is correct and nothing gets forgotten.
As a baker, I had never really used a timer when I cooked. I can tell by smell and by sight when something is done. It was never an issue. Unfortunately, fog tends to let you get distracted easily…and seems to eliminate your sense of smell. Take my advice and use that timer. I have let too many cupcake pans and loaves of bread turn into hockey pucks not to share that tip!!
If possible, have someone in the kitchen with you. My eldest daughter loves to cook, so she is often in the kitchen with me. She helps keep me grounded and focused when my mind wanders. She also helps with a lot of the cutting as well. I can become easily distracted when chopping and have the finger scars to prove it!
But most of all, enjoy your time in the kitchen. Cooking and baking can be very therapeutic for me and it is often a time, despite my brain working, that it can relax and regroup. Plus, I get to eat the yummy treats that come out of the kitchen!
Brain fog can be a real pain the butt, but, with time, you can learn to work around it. When it gets bad, just know it is your brain telling you it needs a break. Often, a little quiet time and rest are all it takes to lift the cloud, even if just a little bit.