Up The Farway Tree

The Ripple Effect

I haven't really been blogging much recently, because I feel I am just going over the same old ground health wise and am even boring myself with my gripes. However if I think back to the reason I started this blog, it was to record the journey towards transplant, which has to include both the ups and the downs. So today I apologise, because unfortunately this is more of a down.

My thoughts feel scrambled and haphazard at the moment, as I try to adjust to this new place I find myself in. The breathlessness continues to be ever present and its resulting impact on daily life is increasingly frustrating. Simple tasks, like moving around the house and getting dressed in the morning requires a concerted effort. Who would have thought putting on some socks could be quite so labour intensive?

The stairs in the house, like the proverbial thorn in my side, are a constant source of annoyance and trouble. If Andrew is around, I can hitch a lift if necessary but left on my own I sit and ponder "Do I really need to go up there?"

My mum has taken over all household chores and her remit continues to expand - prescription collector, banker, dog walker, chauffeur, chef, laundrette and the new esteemed post of 'Portable Oxygen Cylinder Carrier'. When she goes off duty, Andrew comes on duty and his list of roles is equally endless, ranging from the sublime to the ridiculous. Yet, I'm not sure what my role is?

Eating has become a major source of stress. I don't feel hungry. Ever. I feel breathless and tired trying to eat a proper meal. My weight is on the decline and I cannot afford to lose any more, yet my peg tube decides that now would be a good time to start playing up again. I am taking my overnight feeds 7 nights a week, but am waking up half way through the night feeling sick and with heartburn, and have to switch the machine off. I then wake up with low blood sugars, because I had taken enough insulin to cover the whole feed. Who would ever think eating could be such a chore?

I have hardly been to work in the past few months and not at all for the past month. I suspect I may not be able to go back this time. I feel both relieved at the thought of not struggling into work, and at the same time horrified that I may be about to lose a crucial link; a link to independence, to sanity and to reality. Who would have thought the prospect of lazy days, long lies and no commitments could be so frightening?

It may seem from this post that I am feeling down, but that's not the case. I just feel a little overwhelmed at the moment, and perhaps, at times, a little afraid. A small health change is like a stone thrown into the water - the ripples spread out into almost all areas of life, and sometimes you are not quite sure where they will stop. However, I know they will stop. The waters surface will become still again. My life will fall into order; I just have to let it.