75/365 – Beginning of the myasthenia journey

As I mentioned in my eight ways myasthenia gravis has shaped me for the better post, being part of the MG community has helped me cope in many ways. On Thursday night, I went along to a Myaware Young Generation pizza making evening and it was great to get a chance to meet some new faces (as well as toss pizza dough in the air and eat far too many dough balls). 

The events I had been at up until Thursday had been dominated by women – perhaps because the condition tends to affect females at a younger age. However, I met two lovely men with myasthenia on Thursday evening. Both have had MG for a long time and were open about the trials and tribulations they have faced as we sent flour flying and slathered our pizzas in numerous toppings. 

I thoroughly enjoyed spending time chatting with them and think both should consider themselves role models, not just for men with MG but in general. I say this because they seemed very comfortable talking openly – an issue British men are notorious for particularly around health issues. As they have far more experience with the condition than I do, they were both supportive and empathetic when I was talking about my recent concerns. They provided advice and discussed gently things I should prepare for. It is this kind of peer support that is invaluable and they silenced any doubts I had about attending the event.

Speaking to them made me realise that, although a year and a half feels like a long time, I’m only in the very early stages of my myasthenia journey. With this in mind, I must continue to develop my Buddhist-like lack of attachment to the good times in preparation for the inevitable fluctuations of the future.

It also made me realise that developing lasting connections in the Myaware community is important as there will be times when others with MG will be best placed to offer support and advice. 

  

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