Observant

The more obersvant among you will notice I have been very quiet lately, this is because I haven’t been very well recently with, as most flippantly put it, a cold.  Coming on top of my MND and the problems that in itself brings with it, it has felt at times a lot worse than a cold and the coughing resulted in me sleeping in my wheelchair at night for fear I would choke on my own mucus and saliva.  It is easing a little now and last night I slept in bed for the first time in over a week.  I am also now wearing an adult bib for the saliva, just until I get a new medication to help with the excess saliva.

We still live in hope but it won’t help MND sufferers of today with the breakthrough which was announced recently http://www.bbc.co.uk/news/health-43838545 This won’t help sufferers at this moment in time but it is one step nearer for the future to be a little more positive that Motor Neurone Disease can be controlled or even slowed down to a halt in the future.

I have at times over the last 10 days felt so tired and exhausted that all I have wanted is to go to sleep and never wake up, even to the point of feeling envious of those who have passed away.  This is the dark side of MND and probably any other terminal illness but these thoughts and feelings are getting less and less as I feel a little better.

I would love nothing more than to have my pre-MND life back again, to enjoy food and drink and walks in the park and even endure the Monday morning blues as a new working week begins.  This leads me on to reveal another decision I have made in that I am now totally reliant on Peggy for my nutrition and feeds.  I still have pureed meals but unless I am not tired, I will be completely tube fed from now on. And I am in the process of making advanced decisions about my future care which had a close friend of mine in tears.

All my love,

Angie xxx