My “thing” has always been that I’m smart. I was never really athletic. I danced, but once college was over, other than the occasional taking classes for recreation, I stopped dancing and performing. I’m mildly creative, but not in a way that is as much a part of “who I am” like my “smarts.”
I’m smart. I graduated high school with the max amount of college credits that I could (30); got a full-ride to a private, liberal-arts undergraduate college to study chemistry; began publishing research and education articles in peer-reviewed journals during my first year of teaching (because I wanted to – not because it was tied to any sort of graduate degree…I hadn’t even started my masters at that point); wrote a high-school chemistry textbook; received regional and national awards for my teaching; earned a PhD (mostly paid for through academic fellowships I earned by my “smarts”).
I have other components to my self-identity (mother, wife, friend, creative, etc.) but my brain and academic/career successes is a major part of it. I’m proud of it.
I am an educator. I taught high school chemistry for 10 years. Even now that I’m no longer in the classroom I’m still an educator – I worked with science grad students and high school teachers as they partner to bring the grad student’s research into the science classroom – including leading the weekly graduate student seminar course and parts of the annual summer institute they attend. I still lead workshops for teachers, I still present at national conferences, I continue to be in front of groups of people teaching and leading discussions. I mention this part because I’m very comfortable talking in front of groups of all sizes – I’m used to it.
About two years ago I noticed that something wasn’t the same when I was teaching or leading classes and workshops. I couldn’t find words that I wanted to use. And not in the occasional way that everyone experiences from time to time. But in a frequent way. A way that was causing me to not be able to express the thoughts in my head. A way that was happening so often that I realized something was going on with me.
I’d find myself part-way through a thought while talking to the group and not be able to finish it, not be able to find the words I needed. They were there in my mind but somehow just outside of my grasp.
This happened often enough that I was noticing it and wondering what the heck was going on with me.
At some point after this had been going on for a while I learned about brain fog. Brain fog is associated with many autoimmune disease like Sjogren’s, MS or Lupus. In some instances, people with “brain fog” have been seen to have inflammation in areas of blood vessels inside the brain. Autoimmune can cause inflammation everywhere, causing all kinds of havoc: moisture-producing glands = tears and saliva issues; blood vessels around nerves = neuropathy; blood vessels in brain = brain fog.
“What is Brain Fog? Brain Fog is a lay term to describe fluctuating mild memory loss that is inappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay attention, an inability to focus, and difficulty in processing information. Remember that gradual cognitive decline from early adulthood is a fact of life. Brain Fog can occur in Sjögren’s syndrome (SS), but other factors might cause these symptoms and should be considered by you and your doctor.” (http://www.sjogrens.org/files/brochures/brain_fog.pdf)
I first read about “brain fog” when I was given a “possible” diagnosis of Lupus in April 2013 and began research it. Brian fog is common in Lupus and appeared in information about it frequently (as opposed to the research I’d been doing on RA for a couple of years when that had been my diagnosis – I’d never run across it in that information).
By the time I began to read about it, it had already been happening for quite a while. Long enough that I’d noticed it already and was wondering what was going on with me. So I know it wasn’t a case of developing symptoms after you learn about the fact that they are possible. With physical symptoms I don’t worry so much about developing them after I’ve learned about them – they’re physical. But with this mental one I’m glad I developed and noticed it before I learned about it…I don’t want to make myself believe that I’m “imagining it” simply because I learned it was a possibility.
Nope…this really is happening to me.
I’ve always been one of the most efficient people I know. At one point I had a 4 year-old, a 2 year-old, taught high school full time, was in grad school working towards my PhD and was writing that chemistry textbook. I juggled it all – rarely forgot anything that I needed to do, and got it all done.
Now I can’t even remember to do the most simple things. I use my technology to try to keep myself on track – a calendar and todo list software that syncs to all 3 computers, my iPhone and my iPad. I have it with me everywhere and I still forget stuff far to frequently for my happiness! And that’s even with a “striped-down” life of responsibilities since I simply can’t juggle as much as I used to.
So then I start to look at the “tips for living with Brain Fog” that places like the Sjogren’s Foundation put out there…
The most prevalent tip is “Train your brain…if you don’t use it, you lose it!” Ummm…I’m pretty sure I’m using my brain enough. I have a “thinking” job, I have “thinking” side-jobs (educational author and presenter) and I even have “thinking” hobbies (like programming apps for the fun of it and writing this blog). I use my brain plenty, thank you…and it’s not helping!
The second tip that makes me outright laugh is “To help symptoms of ‘brain fog,’ minimize stress and anxiety. Take breaks throughout the day and learn relaxation exercises and practice them at regular intervals.”
Seriously? The “brain fog” is one of the things causing me stress and anxiety – along with every other aspect of living with this disease. And taking breaks throughout the day adds to the stress and anxiety because I just sit there and think about all of the things I SHOULD be doing instead of taking that break! (And let’s not forget the guilt that taking breaks brings…adding even more anxiety!)
And finally…”Letting yourself laugh and talk about your feelings will help reduce stress and anxiety, which contribute to fatigue and ‘brain fog’ in Sjögren’s.”
I have a hard time feeling like people really believe the physical symptoms I’ve having from this invisible disease…how in the heck and I’m going to convince ANYONE that I’m having cognitive symptoms? “Let yourself laugh and talk about your feelings”? Clearly that was written by someone that although they may be very well-meaning, does not have these issues on a daily basis.
I can barely talk about this stuff with my husband (in fact I don’t think I’ve talked about my brain fog symptoms at all), let alone laugh and talk about it with everyone around. I can only write about it here because (1) I’m forcing myself to do it as a way of dealing with it and (2) even though I know my friends and family are often reading this, it’s still feels way more “anonymous” than sitting down with someone and trying to explain my “brain fog” which I fear would be met with either “girl, we’re all running around forgetting stuff because we’re so busy” or “you’re just imagining it.”
This is more than “busy with children and all that is going on in life and forgetting things.” I experienced that for years. This is “I can’t think of words to say that I should be able to say.” This is “I can’t express my thoughts – I can feel them there, just below the surface but I can’t grasp onto them, I can’t get them to the surface to get them out.”
And for someone that has spent many, many years of her life with “smart girl” being a large part of her self-identity, it’s disheartening, it’s discouraging, it’s feeling like stupid disease is reaching into every part of my being and pulling pieces away. Nothing is safe from it…at least that’s how it makes me feel.