Recently I had the privilege of attending the 2022 Functional Neurological Society’s international conference. What an inspiration that was! It was so exciting to see hundreds of medical providers eager to learn more about FND.
Have you ever been told that your FND is a result of stress? I remember when I was told that, and I wasn’t happy with that explanation at all! I AM NOT STRESSED, DANG IT! At that time, I was very out of touch with what my body was feeling, so I probably wasn’t feeling stressed. I had learned to always look calm, cool, and collected, even if underneath it all I wasn’t.
We are living in challenging times. Is there anyone whose life hasn’t been turned upside down in the past year? There have been so many unique difficulties, nothing for which we could have prepared.
Remember those days when you could do whatever you wanted without considering how much it would drain your energy? If you have Functional Neurological Disorder, chances are those days are long gone. Technology has provided some nice analogies for our brain, such as Prof. Jon Stone’s software/hardware comparison to explain why our brain doesn’t function correctly despite normal structure. Thinking about my energy like my phone’s battery helps me manage it better.
Managing my symptoms of Functional Neurological Disorder is easier on some days than others. When life is going smoothly, I can even get a bit lazy about my self care without any noticeable effects.
Going public with my FND recovery story was very much because of a desire to share ideas that could lead others into their own recovery, but my decision to start a blog to help others with Functional Neurological Disorder wasn’t solely due to altruism. It was part of my self-created treatment plan.
How well do you know your body and respond to its signals? Years ago, a friend of mine pulled into a restaurant, frustrated with me. “Good grief, Max! Don’t you even know when you need to eat?” She had started recognizing the signs that my body needed food. I would get sluggish, couldn’t think straight, and become quiet as my body ran low on fuel. The answer to her question was, no, I didn’t know when I needed to eat. Nor did I know when I needed to drink, sleep, use the bathroom, rest, or any of the other multitude of activities we do to keep our bodies functioning at their best.
With Functional Neurological Disorder, the normal function of our nervous system gets derailed. Instead of the usual normal automatic movements most people take for granted, we end up either losing movement, such as paralysis or the ability to walk normally, or we begin having involuntary movements like seizures, tremors, or spasms. For many of us, the inconsistency of our symptoms is mind boggling. Why does my body work correctly some times and not others?
As I have learned to live with my Functional Neurological Disorder, I’ve discovered the importance of balancing and budgeting my energy. Do I have it all figured out? Not hardly! However, I am getting better at it all of the time. The longer I live with my brain’s default setting back on “normal”, the easier it is to keep my functioning at a manageable level.
Trigger warning! -Child abuse discussed, although sensitively and not in great detail. If you think this may be a difficult article for you to read, you may want to read it during an appointment with your therapist. If you choose to read it alone, do it at a time you are feeling less vulnerable and create a soothing environment- snuggly blankets or pillows, a warm drink, perhaps soft music or a relaxing diffused essential oil.