One of the reasons we decided to create a web presence and start frequently vlogging via our YouTube channel was to create awareness of the private life, living with these diseases, many of them invisible. While I cannot record all of it, I want to give regular glimpses into the way I have adapted to life a good life within my home, and adjusted to receiving care in many situations. Pain is an extremely hard situation to convey, but we wanted to give it a shot by letting people see for themselves. So, here I am, I hand you my difficult, embarrassing, restricting but blessed existence. I can be in pain and still create a wonderful life for myself and my family, and we work together to fill our lives with colour and ridiculousness.
Here is the first blog post that explores why I wanted to get stuck into this!
We are in constant waves of testing and examinations for my many and varied health problems. The healthiest (ha! Unfortunate term!) way of thinking of it and explaining it to some people without going in depth, is that my body doesn’t want to be a body. It wants to be a unicorn. It’s just not very good at being a body, but it thrives at being a unicorn, if only it was given the opportunity. But to give you a picture to be going on with, I suffer with chonic pain all over my body, hemiplegic migraines (stroke like episodes), chronic migraines, POT Syndrome (as come to public knowledge via Deliciously Ella), chronic osteitis, M.E, costochondritis, anterior knee pain which is currently under investigation, and even more under current testing with new found blood profiles from recent testing. Yaaay. BUT! I pain and energy manage the best that I can, and work closely with my amazing doctor, whom I refer to as my agent, and a jolly goodun she is too, to stay on top of everything and keep on, keeping on! I have too many adventures lined up to be trapped by my unicorn body.