I wanted to write a book about Medically Unexplained Symptoms (MUS), basing it around ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I was going to attempt weave together my own experiences of MUS – both personally and professionally – with facts, research and other relevant information, in a way that would speak to all manner of people. From those struggling with MUS themselves, to friends/family members of sufferers, the general public, health care professionals, medical researchers etc. I even hoped that such a book might one day find its way into the hands of those making decisions about where public money, especially research funding/grants should go.
Did I also mention that it was going to be fabulously witty and all-round, bloody brilliant?
Ha. Fat chance. Grand intentions aside, it’s pretty obvious that I can’t write any such thing. Possibly because I’m neither funny, nor any good at writing? Both could still be the case of course, but in addition, I’m stuck in a bit of a ‘catch-22’ situation. I actually have ME/CFS and one of my core symptoms is ‘brain-fog’. When at its worst, I have real difficulty reading and making sense of words/sentences. A cruel blow when books have always been one of the core, dependable ‘loves of my life’.
Now, before anyone says anything along the lines of, “oh well, it can’t be that bad if she’s writing this”, consider for a moment certain points:
- I’m currently (as in today and at this hour) in somewhat of a better place brain-fog wise. A window of relative wellness shall we say. Not back to my pre-illness self, but definitely improving. For most of last year, writing like this would have been absolutely impossible.
- You don’t know how long it’s actually taken me to write these few measly sentences, nor how long I’ve spent re-reading, or attempting (and failing) to grammatically correct them (I’m not telling you how long – its too embarrassing to admit). And let’s not mention punctuation (arghhh).
- As I write this, I do it with the sure knowledge that there will be energy ‘pay-back’ and the debt collector is not friendly. For instance, at this moment I can feel that I’ve just about reached my current limits of focus and concentration – my thoughts and movements are getting increasingly ‘sludgy’ and I’ve now got a horrible headache that will probably last all day. Oh the joys. But I strongly suspected this would happen and I’m still glad I’ve done it. I also plan to do it again and again and again. Why? Well, partly because I don’t want this illness to define me, but also because I don’t want the prevailing inaccurate beliefs about MUI to define how you see me, and the millions of others similarly afflicted. I’d like to share what I’ve learnt and experienced on my journey so far and hopefully change the world at least a teensy bit for the better, even if it’s just one world, one blog at a time.