240/365 -Looking good, feeling crap

Following my post about the frustration of feeling great but myasthenia symptoms making me look terrible several months ago, this post is about the opposite situation. Similar to the spoonie idea, some people with MG don’t have the visible symptoms like I frequently do. Of the many people I’ve spoken to through Myaware about their condition, most have a story around having their condition questioned because they don’t  look ill. 

Recently my visible symptoms have been more stable. This could be a result of the thymectomy doing some good, the extra dose of aziathioprine kicking in or a result of trying to get more rest, or all of the above. Regardless of why, at the moment I can go about my life without being hindered by self consciousness. I even sometimes forget about the MG when not confronted with it in the mirror. 

However, not having the visible symptoms when I’m not feeling great can be a negative thing. I find people are less likely to ask how I’m getting on and focus on the more tangible positives of the external improvement. While sometimes it’s been muscle weakness and fatigue, I’ve not been feeling strong emotionally of late. But that doesn’t have external symptoms and I feel I’ve lost the ability to speak about it.

The general lack of goals in terms of my condition, and subsequent limbo I’ve been left in, after seeing my consultant has combined with a few non MG concerns to hit me hard.  After trying to get on with it, I’m going to try to get some Myaware/NHS counselling. I’ll let you know how I get on (and will try to cheer up soon).

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