Tuesday, April 15, 2008

Out of the Brain Fog

Brain Fog as defined in Wikipedia online encyclopedia:

Brain fog is a term for the "woolly" sensation of a physical obstruction to clear thinking in the brain, often extended to apply in general to
neurocognitive symptoms experienced by many people who suffer from diseases such as ME/CFS, fibromyalgia, amongst others.

Brain fog involves persistent or episodic
cognitive dysfunction, and may be associated with forgetfulness, confusion, slowed thinking, distractability, depersonalization, the inability to remember the correct words when speaking or writing (dysphasia or aphasia).

Brain fog is so named because the sufferer can feel like a cloud literally surrounds him or her that reduces the speed at which things can be recognized or clearly seen. Sufferers describe it as "feeling like a hangover" or "zoning out" Brain fog may promote feelings of detachment (depersonalization), discouragement

By Lawrence Wilson MD:
Although less common, misalignment of the spine, or any impingement on the cranial, cervical or other nerves may cause symptoms of brain fog. Brain fog is occasionally caused by an illness such as a brain tumor, epilepsy, meningitis or encephalitis.

Interestingly this is the term I chose to label my "space" phase. Not knowing that this is an actual term, brain fog was the best way I could describe the mist I was hopelessly wandering around in for the past 3 years following my cyberknife radiosurgery treatment. Here I thought I was being clever by coining my experience as brain fog and thinking I came up with the name. Then last year I got an issue of reader's digest with the phrase "Conquer Brain Fog" written on the cover. LOL I guess that is part of my fog. Maybe I knew or heard of it but forgot and thought I was being original. :oP

When I would tell people they would not take it seriously or say "Oh yeah that happens to me all the time.". Well, for some people one of the side effects may be a regular normal occurance but not all of them for someone like me. Spelling is challenging for many people but I never had a problem with it. As a matter of fact, I always excelled at spelling since my childhood days. Yet, I began to mispell the simplest of words or using the wrong synonym (such as "to" instead of "too" or worse yet "red" instead of "read"). You have to understand, I just did not make these kind of errors on a regular basis.

In addition, I often lacked the ability to think of the correct word to express myself (I am not talking about some grandiose vocabulary term but something simple). Further, I often typed words I was not at all aware of until after I read what I wrote or I thought I typed words which I didn't. This was such a nightmare when writing emails or blogging. I had to proof EVERYTHING and often read and reread which was very time consuming.

In regards of short term memory, it was just gone and is still a challenge but the recall time is getting better (down to less than 10-15 minutes). Harley and I have developed many strategies to help. It used to be that I could walk into a room and not realize for a half hour or longer why I was there. It does still happen but with less frequency and within a few minutes a trigger will encourage me to remember.

Over the years we implemented many organizational tools and habits to make my life easier (kitchen organization and specific places for things which always are put back in the same spot, a chalkboard next to the door for tasks with a hook for my keys, a white board next to my computer for the same tasks, a total rehaul of our offices with new bookshelves and cabinets, the use of daily task lists either written or typed, etc.). There was a large learning curve for me to remember where things belonged and this new system but finally over time I adapted. I still do have some problems with losing my keys by forgetting to put them back (they are either in my bag, pants, or coat pocket). If I happen to be carrying lots of things from the truck I will stick them in one of the afore mentioned spots and forget the location not remembering to put them back on the hook. The forgetful foible has caused some intense stress on occasion.

Along with my forgetfulness and lack of ability to express myself correctly, I had many cognitive difficulties and comprehension challenges. Simple math in my head became just impossible. I reached the point where I had to bring pen and paper to the grocery store to write down the prices and add them so I had an idea of how much I was spending. Ok, so for some people perhaps that is normal too. But typically those who would have difficulty figuring out simple math in their heads have trouble with math in general. I on the other hand, have had to perform higher level math in my studies of chemisty and physics for my zoology degree. Further, I developed lesson plans involving algebraic problems when I taught 9th grade physics in 2003.

It is amazing that I was able to successfully make it through ASL levels 2-6 during this time. I restarted learning the language just prior to treatment. I was able to get in one refresher class and complete half of a college level course for the 2nd part. All I can figure is that I had a good base and recall from level 1 and the refresher with a good start to level 2 while my memory and cognition were still sharp. Although the brain fog was not immediate after treatment, neither were the other complications I suffered. I was sick and throwing up yes but I still had pretty good balance and comprehension level. The tumor swelled over 11 months post treatment and so there was a building up of side effects over time (reaching its apex in 2005).

Therefore, I completed level 2 and 3 with ease but began to have challenges with level 4. Part of the reason (in addition to symptoms getting worse as the tumor grew) was that I took level 3 and 4 at the same time at 2 different schools in 2 different cities. The commute was horrible and taxing. When I took the course in the fall of 2004, I began to suffer many vision problems which not only made driving stressful but created an obstacle to my receptive skills in comprehending what was signed to me.

By 2005 I had totally had it! I took a year off from any classes at all. This was the year when the brain fog took its full hold. My spirit became broken by the losses I had suffered and the new symptoms which just seemed to keep cropping up. I floated through my days in a stupor.......a fog. I figured out yesterday that I must have become so overwhelmed emotionally (and physically) that I was in a state of shock. I really anticipated it to go much easier and that perhaps after a month of recovery things would be back to normal. Prior to my treatment I had expected to be ready to take on my first classroom as a science teacher in the fall (2004). Further, I was looking forward to doing more diving, rollerblading, and hiking that I had to put off while going to grad school. I was ready to get serious and dapple in backpacking and then mountain climbing. Instead, everything went horribly wrong leaving me to salvage the shattered pieces of my life.

It was then that my being went into a brain fog as a survival mechanism. The intense discouragement and disappointment was too much for me to consciously digest. In 2005 I could not continue on by taking more classes. Learning new things became incredibly difficult. I did
expose myself to sign language environments by attending a weekly meetup of ASL students and monthly ASL socials where I could interact using the knowledge I had attained. During this time I was learning how to be deaf because that is what I was and it was not going to change. My only option in order to survive was to accept it and find a way to function.

Along with the deafness, I suffered worse complications which emotionally tore me apart. My balance declined to the point where my dreams of hiking and climbing mountains were snuffed out. Further, the imbalance totally changed how I could use my body and get around. Not prepared for this change, I suffered painful falls and injuries while I learned to adjust. As if there could not be any more plight to my misfortune of total deafness, loss of balance, loss of feeling in my extremities, facial paraylsis which caused not only a disfigurement but also dental, eating, and drinking problems, but my vision became obscured too! Holy crap I was beginning to feel like a basket case! When was it going to end? Would things get better or just continue going down the toilet?

In the end of 2005 I started to show some improvements. For one my face recovered some function (not all but much better than it had been over the past year). I was finally able to drink from a glass instead of a straw which was a major uplift and milestone for me. With a recovery of part of my face and medication for my eyes, I felt ready to finish the ASL series. In the winter I took ASL 5 with my friends I had met over the previous year and we were able to carpool together which solved my driving and commuting problem.

For the final class (ASL 6) I audited it as the course was just too fast for my eyes and comprehension ability. By attending without the pressure of a grade, I felt my learning would be less frustrating and I would be more receptive to acquiring the language I was forced to learn in order to survive. That was the tough thing for me. While most people in the class were studying to become interpreters, EVERYONE was thrilled about learning this language and found it fun because it was a personal choice and interest. For me, yes it was a choice but not for the same reasons. It was my choice so that I could have a better life and be able to function. It is kind of like taking chemotherapy. Patients are not estatic about taking it or WANT to take it, but it must be done in order for them to have a chance at life. Thus, it was the same for me. It would have been different if I had chosen to learn it with the same enthusiasm as learning to scuba dive.

After completing as far as I could go with taking sign language classes, it was time to work on my body and try to recover endurance and some balance function. It was also time for me to feel like I was making a difference. Thus, I captained a team for the American Cancer Society's Relay for Life and that weekend I signed up for Team in Training to walk the Seattle marathon. My training carried me through to the marathon at the end of November and then I worked towards climbing the highest skyscraper in Seattle for another fundraising event with the Leukemia and Society.

With all those things out of the way, I felt I was beginning to come out of the fog in spring of 2007 when I was hit with another major obstacle (the hardest yet to face). The tumor was not getting any smaller and by this time was compressing my brainstem too greatly where it was only a matter of time before the other shoe dropped. Well, fortunately after all I had been through in the past couple years and the progress I made, I was ready to face what lie ahead and do what needed to be done. Thank goodness because there was lots of reading, things to learn about getting a brain surgery, questions to ask, records to put together, and crucially important choices to be made! I would have had a difficult time doing all this in the years 2004, 2005, 2006.

I still have another surgery to face for later this year which I am sort of putting on a shelf in my mind right now. At least now I have a surgeon, a medical team, a hospital, knowledge, experience, and an idea of what to expect. With my face 75-80% healed, teeth healthy (not crumbling from lack of saliva to protect them), able to eat, the greatest improvement of my balance and endurance, eyes doing ok as surgery relieved the pressure and I am off the medication, off the steroids (which I was on for most of 2005 and then on again after surgery in September until March of this year), the feeling returned in my extremities and the developed ability to sense vibrations to substitute for my loss of sound, and the ability to communicate with my husband, sister, and friends along with being more comfortable as a deaf person (less awkward), I am finally taking an interest or have a desire to learn something new.

I have had my text phone for 2 years as well as my camera. I am very limted to the basic functions of each and do not know how to get the full potential out of them. For the past couple years I just did not have the ability to learn more advanced functions. For the text phone, I carried around the manual but either could not comprehend and remember what I was reading or could not finish reading the instructions. For my camera, I never even looked at the book until yesterday. For the past couple months I have been frustrated that I do not have the technical knowledge and skill to take better pictures. The last couple times I accidentally knocked the dial off automatic onto the wrong setting only to realize after it was too late and I could not go back to take the picture. One of the settings is P. For the first time in the since aquiring the camera, I had a genuine curiosity in finding out what P stands for as well as the other abbreviations on the dial.

This is another major milestone for me as this eagerness to learn something technical has been absent from my life for the past few years. It is very exciting as well as refreshing because it is a sign to me that the damage is not permanent and I am coming out of the brain fog. What I figure is that I have been severely traumatized by everything that has happened to me. So many changes to my life occurred where I had to learn to adapt and how to function again as a new person. It has taken a long time but I have reached it and can now consider interests outside of pure survival.

P.S. - Did I mention that I feel like a darn idiot admitting I don't know how to use my phone or camera? How embarassing! Talk about archaic and not with the program. The high school age generation would just cringe. If I had kids they would think I was ignorant.

Note: Brain Fog also happens to cancer patients taking chemotherapy. I can't tell you much of my experience with it as that was 15 years ago and my mind was so altered that I cannot remember certain things that happened. I had to be told about them later. This is known as "chemo brain" which is very common. If you click the lighthouse icon in the post title you will be taken to the Lymphoma Blog where another author writes about her experience with "chemo brain".

No comments: