Yesterday started with a mad rush as I had to go into Helston for my Weight Watchers class (sadly for me it has taken Chris getting MND to make me realise that I have a choice with my health).
I had to get back straight away as the enteral pump nurse was coming at 10.30am to do the feed pump training. Yet another nurse who works alone covering the whole of Cornwall. They must spend a third of their day travelling. She was lovely though and went through the whole process of setting up the pump, how it works, what to do if things go wrong etc. Chris hasn`t had an order put in yet, so she said she would come back again in October if we needed to go through it again. She also went through PEG care again and had a few extra useful tips, like massaging the tube to get rid of any feed residue.
I had rung the dietitian on Monday as the appointment to see her wasn`t until November and I thought that was a bit too far away and coincidentally she telephoned today to talk things through. She will phone back on the 30th to check in and then place the first delivery of the pump and the night feeds, which I think will be 500ml bags that will be slowly fed to Chris over night while he sleeps. He has lost a couple of pounds in weight because he is eating less, so hopefully that will stem anymore weight loss. She also said that a dietitian will visit him at home then. I`m not sure that he is very happy about sleeping at a 45 degree angle, which is necessary to stop reflux from the feed, but I`m sure he will get used to it.
So many things we have to get used to with this disease. Sometimes it`s hard to remember what `normal` was like. We would so wish life to be normal again. I would be nagging Chris for working too many hours, he would be like a pig in muck, or should I say a cow in muck, doing the job he loves. I'm sure everyone has dreamt of a day when they wouldn`t have to work, especially if they hated their job, but it means nothing if you don`t have your health and even less if you have to give up a job that you love.
MND steals your body and steals your life in all kinds of ways, it is so cruel.
