All the fancy equipment that is offered, as grateful as we are, it won't make the MND go away or stop it's progression. They are just a too small sticky plaster on a too large cut. The cough assist helps get up the mucous, but Chris still has to have me suction it from his mouth, sometimes two or three times a day. The NIV will hopefully eventually improve his oxygen levels, but so far he can only tolerate it a short while before the mucous builds up again and then the air being forced down into his lungs also forces the mucous down and then he chokes. He has medicines for this and medicines for that, everyone is doing their best to help, but this disease is forever throwing something else in your path.
I feel over whelmed at the moment, not so much with our life, but seeing the pain of others in a similar situation. I feel ashamed because people have been so supportive of us, but lately I just want to hide from it all, sometimes others pain is too much to bare. I sometimes feel like I have opened this door to sharing our life with this hateful disease, but wish I hadn't. I will still write my blog, I will still share it, I am compelled too, I have no choice, I just wish this hadn't happened to us, I just wish I didn't have to write it in the first place.
I need to step away for a little while, I need to recharge my batteries and just deal with our own lives. I need all my energy for Chris. Do not worry, in a few days I will feel different I am sure, but for now......MND has got the better of me.
