Friday, 20 February 2015

No.154. Cheerful resignation.

These past few days have been a bit hectic. Making plans to move into the bungalow have started in earnest. We have a little savings so are using some of that to make accessibility better, also I'm doing a bit of decorating to make it our own. I have no problem doing all these things myself, I have always done this kind of thing anyway because Chris was always working, but sharing decisions is important, I hate making decisions on my own. MND seems to have sapped Chris of making any kind of decision. Most questions will end up with him just laughing at me which quietly drives me nuts. Is this the emotional lability they talk about, one of the symptoms of MND? He always appears fairly cheerful, but at the same time seems to have resigned himself to this new life of watching TV in between some office work and short trips out on his scooter if the weather is OK. At least when his new wheelchair comes, which is actually next Tuesday, we can get out a bit more. Is it possible to get institutionalised in your own home? Maybe. Everyone who sees Chris tells him he looks well which of course is rather ironic. He does look well though because he doesn't work himself ragged anymore and has got up to a healthy weight. I just wish it didn't take having to get MND for that to happen.

I hate leaving Chris too when I go over to the bungalow, even though it is only a stones throw away, partly because I worry, partly because time is precious I suppose, though he has said he could bring some paper work over and join me.

On the wheelchair front, we were really surprised that it was ready so quickly. We also asked the local branch of the MNDA if they could help to pay for the riser attachment on the wheelchair which they agreed to, so that is brilliant

We managed to get a WAV car sorted too. Chris wanted me to ask Adam, a rep at the local Renault dealer, if he could source a WAV Kangoo for us. I didn't think he would be able to, but he found four ex mobility Kangoos. We have bought our last two cars through Adam and Chris trusts and really likes him, so it was great that he could help us. He is even going to drive it down next week as he is working down our way which is perfect. He also gave us a much better part exchange deal on our present car than other mobility car dealers would give.

Although our farm house is pretty big it is Victorian and made up of lots of smaller rooms so getting around in a wheelchair although not impossible, will be a bit tight. The bungalow is smaller, but more spacious strangely and of course everything is on one level and much more accessible. We need to get a ramp sorted for the front door, but Jordan is going to help with that which is great. I am quickly beginning to learn the true meaning of downsizing though, not everything is going to fit! Still, we are very grateful that we have somewhere else to move into, not everyone is so fortunate.

Chloe never talks about things much, not even to her friends, but she has started opening up a little more and I think it made her think about doing something for MND. In her case, as a songwriter, it was to write a song. The song she has written is beautiful and comes from the heart. She would like to sell it to raise funds for the MNDA and just has to work out the logistics first, hopefully she will be able to make a bit of money from the sales to boost funds. Here is the link to it if anyone reading this hasn't heard it yet. https://soundcloud.com/chloe-fior/levels The lyrics are on the SoundCloud page.

How life has changed in twelve months. Chris was still waiting to see the consultant this time last year, we would never have dreamed that out lives would change so much. I suppose it is inevitable that frustrations will set in for both of us. In spite of Chris appearing so cheerful, I know he misses working on the farm very much, office work just doesn't compare really. He really misses working with his cattle. Although part of me is relieved that he hasn't gone into a deep depression over it, part of me hates the fact that he seems to have resigned himself to the way things are, but perhaps that is how to survive this awful disease.

MND is taking so much from Chris and from all of us, it truly is one hateful disease.