..And what a week it’s been. I’ve mostly ranted about the day-to-day trials of having MG and how it affects my life in mostly trivial ways. I’ve had a lot of love from family and friends and also some feedback from fellow myasthenics. So far, they don’t seem to think I’m talking absolute nonsense and that’s much more than I expected.
One fellow MG sufferer told me she had always hated the hairdressers and never understood why until reading my post. If this the last feedback I receive, those words will be enough to keep me trying to capture the experiences we myasthenics have this year.
It’s been a challenge chronicling my days this week, but I’ve started to look forward to it. The hard part is taking photos – each time I hit publish I go against a nasty voice in my head that tells me I look hideous and should put my sunglasses on. I’m not sure where that voice comes from but I realised at the end of 2014 that I needed to try to shut it down.
When my first symptoms showed I allowed it to stop me socialising, couldn’t look my partner in the eye and let the negatives consume me. Over the course of last year I fought back and forced myself to make new friends and to take on challenges of the body and mind. But the voice was always there in the background, ready to dampen any joy after an unexpected stare or mirror.
In the photo today I’m confronting the voice as I’m not trying to hide my eyes or my thymectomy scar. Each time I publish a post like this I make that voice a little bit weaker.