Many people have been asking me 'how are you?' I say, 'good thanks' and we move on with our day.
The reality is different however and I thought despite how hard it is I should tell you how I'm really doing.
The things I don't say to you all when you ask me how its all going are:
Today like everyday at the moment is a struggle to get through.
Having MND is like being in a glass coffin.
I can see what is going on in the world but I cant participate. Mike and I have all this time on our hands which I would normally fill with activities like sending emails or organising the house, doing craft, etc except my hands don't work. As a result I have all this time and all these things to do but I cant do them. I used to participate in life and now I feel like a spectator.
You can imagine how frustrating that would be. My voice doesn't work as well as it used to so sometimes people don't understand me. It is now hard to hang out with friends or call people over in the states as talking on the phone is difficult. Not being able to express myself as quickly and clearly as I want to makes me feel a bit cut off.
I think it is impossible for people to understand what my days are like.
I still get out of bed everyday and go out into the world. I still laugh at funny things and definitely haven't lost my ability to enjoy tasty food.
So how are we doing really? As good as we can do.