Fear for the future when MND finally gets it's way and consumes it 's prey and fear for the loved ones for the rest of their life without them.
Recently all those fears have been building up in me. So many changes are happening externally with the farm and the ending of many eras, our life is not just changing from MND, but from the external consequences of it. Firstly the farm has been a spoiling, enveloping fold in many ways, now it's time to stand alone.
My fear in this moment is seeing Chris slowly lose the ability to stand by himself. It seems every day he gets a little bit worse. His saving grace is he still has some upper body strength in his shoulders, but his feet, well they just glue themselves to the floor, turning on the spot is becoming impossible for him. I have neither the height nor the strength to physically help him and every time he needs to move from one place to another, there is the fear that either he will be stuck or he will fall. A stand aid is being organised by the physio and that can't come soon enough.
I fear for his breathing, the on going mucous problems are still stopping him using the NIV properly. Hearing him struggle with his breathing is scary, but so far the longest he as managed on NIV is 45 minutes before he starts choking and panicking. He had decided he does not want a tracheostomy, so what is left? The fear I have watching him slowly get weaker in many ways.
Fear of the day when carers will have to come into our home to help us, fear of the inevitability of that.
The fear I have of being on my own one day, of being without Chris, I can't bare to think of it. He has looked after me well, I shouldn't have too many worries from a practical point of view, but that all means nothing without him. I don't want him to leave me, this wasn't how it was meant to be.
I feel all this fear inside me, a physical being, churning and knotting, growing and multiplying.
MND has to be the most frightening thing in the world ........ever.
