Welcome to M.E

Firstly, I hate the term chronic fatigue syndrome. I was a parent for four years prior to hitting the M.E wall. Being a parent is to be chronically fatigued - having M.E is very different. If only my single symptom was fatigue. If only the fatigue I experience as a baseline of my illness were like any tiredness I have ever experienced. As you will know if you are reading this because you have M.E it isn't like that.

In the run up to hitting the M.E wall I was experiencing periodic symptoms, days when I felt like I was wadding through treacle, days when I couldn't understand what was going on and felt scared. I had had three major abdominal operations and never quite recovered from the last. I kept pushing through the treacle, but one day I hit the wall. I couldn't get out of bed. To move felt like every cell in my body could not work, it was very challenging to even get to the bathroom, my body felt alien and over taken with weird and strange sensations. Over time I began to unpick what was going on and differentiate between symptoms and what was going wrong, but not why.

I have observed my body and my illness for over two years now and I am convinced that what is going wrong is in the brain. The brain controls everything, it controls whether adrenalin, sugar levels crashing, pain pathways, nerve sensations are switched on or off. There is no pathology in the organs involved in these symptoms, my blood sugar levels are recorded as on the floor some days but the endocrinologist can't replicate this and there is nothing wrong with my pancreas. My blood pressure is high/low for no reason, and my heart can race, jump do very strange things, but there is no pathology in the cardiac system of my body. My body can tingle and thrum as if every single cell is vibrating, yet there is no nerve damage or problems like with MS. So for these symptoms to randomly come and go means by brain is instructing the organs to behave in this way. There is something wrong with the brain not the rest of the body.