For many years, I’d experienced increasingly severe symptoms including immune system problems, brain fog, devastating fatigue, severe joint and muscle pain; intense migraines, dizziness, and headaches with visual disturbances, and field of vision loss. I also developed extreme sensitivity to noise, light, smells, certain foods, medications, and many cosmetics and normal household products. Tests were inconclusive and symptoms progressed.
In 2012 I was diagnosed with a benign cystic tumour on my pineal gland. I sought the advice of renowned neurosurgeons, Dr. Dong Kim in Houston Texas, and Dr. Sunil Patel, in Charleston, South Carolina, both of whom specialize in these types of lesions; both confirmed the tumour was causing many of my symptoms, but not all of them.
Tests were inconclusive but it was clear something else was making me ill. Without knowing what it was, my Doctors advised it would be unwise to pursue surgical treatment, so I continued trying to piece the puzzle together.
Then on January 30th, 2015 my legs suddenly stopped working normally. It was like my brain and legs were suddenly unable to talk to each other. I ended up in hospital, and after seeing specialists and myriad tests and invasive and non-invasive procedures, eventually in March 2016 I was diagnosed with Myalgic Encephalomyelitis, (M.E)., also called Chronic Fatigue Syndrome. (To find out more about ME/CFS – See the video below by Jennifer Brea)
Doctors subsequently confirmed that I have Fibromyalgia, Arthritis and other chronic Inflammatory conditions which affect my Immune, Endocrine and Neurological Systems. As a consequence of my health issues, I had to close my art and antiques store in September 2015.
Since that time, I’ve been disabled, and unable to work. These days, I am mostly house-bound, although sometimes there are a few days or even a couple of weeks where things seem to improve, and equally other times when I am pretty much bed-bound for days or weeks at a time. Its not easy.
Thankfully, have been navigating all of this while living in the tiny house. People think that it’s got to be harder living in a small space but when you have M.E/CFS but it’s actually a lot easier because everything is so close together. In fact, the house was designed with aging in place, and disabilities in mind, so works well with my limited mobility, and other physical and sensory disabilities. Actually, it’s ideal. Something I’m grateful for every day.