One of the hardest things after being diagnosed with MG is telling your nearest and dearest. There are certain things you need and want from them, and, in those early days of darkness, it can be easy to forget that they are also coming to terms with the news.
The people who took it hardest were my parents. My MG isn’t hereditary, as many people ask, and they had worked hard to instil a love of nutritious food (although passing on their sweet teeth and love of vino) and regular exercise. The photo from today is my dad and I after a speedy walk to see a cross country race in Edinburgh – despite turning 70 this year a day is still wasted for him if there isn’t exercise in it.
Despite being raised in poor, by today’s standards, working class families, neither of them have had serious health problems. So the lack of an obvious reason why I’d developed MG nagged at them both.
Supporting me as she always has, my mum went into practical mode and helped with the research that I initially struggled to motivate myself to do. My dad wanted to keep a check on the emotional side of how I was coping, while desperately trying to figure out a plausible reason for me.
Since then, he’s had numerous theories about the why, which I’ve expressed is something I’m unlikely to ever find out, and he’s kept tabs on how I’m really doing. Today, as always, he told me to make sure I’m drinking enough water to ‘flush the drugs out’ – I haven’t had the heart to tell him if I flush them out I’ll be struggling to speak, swallow and see again. He also was asking about my next appointment with my doctor, saying I needed to push him for answers about why the thymectomy hasn’t worked. Once again, I explained it can take 2 years for the full effects to show.
While the theories and questioning can be frustrating at times, I force myself to remember that this drive to get to the bottom of my MG comes from his desire to help me find a way to live a full life. He wants a cure for me and if my parents love could make one it would be goodbye myasthenia.