Living with a health condition that no one can relate to is extremely hard. Benign Fasciculation Syndrome is not only difficult to pronounce and difficult to explain, but because so few have come across the symptoms BFS present, it remains unrelate-able, and so by and large people think you are ‘just making it up!
Unfortunately, BFS was the second chronic health condition that falls into the category of ‘unknown’ that I had endured within 20 years. In my early 20’s I was hit with CFS (Chronic Fatigue Syndrome) during the 3rd year of my Art Degree. At that time it was unheard of. Regardless of the incredulous nature of my debilitating condition, I was in bed for most of the year during my third year in college.
I identified a wheat intolerance at that time and had to fight my corner for this also. Since 20 years ago, there was no such thing as a wheat allergy, let alone a wheat intolerance. I was forced to explain how I felt when I ate wheat, at almost every meal to every new person. It was exhausting and isolating. The response was not only disbelief but it also somehow challenged THEIR cultural thinking around wheat.
Strangely, my choice to ‘not eat wheat’ or ‘sugar’ became an issue that was offensive to the majority. When your choice to stay healthy diametrically goes against the grain of popular culture, then you have to make a firm choice. Do you sell yourself out to ‘fit in’. Or, do you make yourself sick, to appease mass amnesia around what it means to be healthy?
Although times have changed, and it’s now trendy to be gluten intolerant in popular culture, the fight continues. Especially so for our children, who are locked into the mainstream school system; GP permission slips, and Sodexo, especially.
This blog is aimed at helping those with no language to be heard. To be heard by their peers, family, and friends.
It’s a fact, that chronic health conditions are prevalent this century. Auto-immune conditions, paediatric neurological conditions, cancers. We are literally waging a war against CHRONIC health. Please read my main blog to help you understand the clinical implications and triggers behind this war.
This blog, specifically, focuses on our relationship with Self. Putting ourselves central within our condition. Rather than hiding, appeasing, making excuses for the reasons why we can no longer function as well as others can.
With so much love, let’s do this together!