Someone said to me a few months ago “Well if you’ve got in your head already that it’ll make you ill then you’re not doing yourself any favours.” This friend had suggested we do a certain activity and I replied that I wouldn’t be able to.
It has stayed with me and left me feeling a mixture of frustration, fury and sadness. Maybe even betrayal. This isn’t a case of mind over matter. Some things are, yes, but not M.E.
Well over two and half years in I now feel better equipped to know what will trigger a crash. But some people just don’t want to hear it. It is incredibly hard to accept that fact and not waste my precious energy trying to educate those whose minds are too closed to being educated. It might sound defeatist to them but I just know I couldn’t manage it! Not yet anyway. Why would I lie? I obviously love you enough to share the truth with you.
Nearly a year into this blog and I still hear the mumblings of people asking how I can possibly write a blog when I am meant to be so ill. I am trying hard to let these comments wash over me but it is frustrating when I feel I have already covered such a topic more than once. The last few paragraphs and the video at the bottom of The side you don’t see might help to clear things up. Each post is saved as a draft and I add to them over days or weeks or months. Rarely are they written and posted on the same day. I’m not even sure why I feel I have to explain myself…
Please just believe me and have faith that what I am telling you is worth believing. The aim of this blog was never to go out of my way to prove to you how ill I really am. It was, and is, to help you understand the complexities of this condition, but for that to happen you need to come here with an open mind.
As I’ve read many times in the last couple of years, “My invisible illness is more real than your imaginary medical expertise.”