I really didn't want to write this blog today, I couldn`t shake a low mood and tiredness all day yesterday. I guess this disease affects us loved ones of those who have MND too, but in different ways. Most of the time I can detached myself from it. I talk about it, I write about it, but it's like I am talking about a stranger, not my darling husband. I vowed if I am going to write this blog though, as a personal journey, then I have to chart it all, even when I would rather not share it.
Even now I keep hoping I will wake up and find out that someone is playing a really bad joke on us, but of course I know that it`s all so very real. People who know Chris ask me how he is, I don't know what to say half the time, my reaction is to say OK, but of course he isn't, the anger inside me wants to shout 'He's got bloody MND and he's slowly dying, how do you think he is?', but I would never do that, people are only trying to be kind and of course I don't really mind people asking. This disease is slowly taking my husband from me, bit by bit, and I hate it!! I hate this disease and I hate what it is doing to him. At this moment I am neither feeling brave nor positive, I just feel angry and scared.
Back to reality, the nurse came to see Chris around 10am yesterday. We were a little confused because our GP had said she was a MacMillan nurse, but she said she was part of the NHS palliative care team, maybe she was, maybe this was something similar. Either way she was a lovely lady and someone else who will be there as the need arises. This was the first time I had seen Chris get a little emotional with someone other than me, family, or the consultant, especially when he talked about what he can no longer do outside. I could tell she wanted to talk about 'future' stuff, hinting at the problems that may arise like bedsores, suggesting medication that might help with the choking, like muscle relaxants, but she said they would make him really sleepy. I don't think he wants that yet. The awful thing with this disease is that nothing can really halt it or make it better, you just know that it is going to keep getting worse, keeping up it's relentless onslaught on my dear husband's body.
We did have some smiles yesterday too though. In the morning our farrier had posted a brilliant Ice bucket Challenge video on Facebook and Chris and I had a good laugh at that and were really touched by the sentiments and in the afternoon the MNDA posted that their total funds, including the Ice Bucket Challenge funds, had reached £4,500,000, quite incredible, but somehow even that couldn't really lift my mood. I hope today will be a better day. I'm going to take myself for a walk around the farm I think, if the weather stays nice, exercise and fresh air will hopefully do the trick.
We did have some smiles yesterday too though. In the morning our farrier had posted a brilliant Ice bucket Challenge video on Facebook and Chris and I had a good laugh at that and were really touched by the sentiments and in the afternoon the MNDA posted that their total funds, including the Ice Bucket Challenge funds, had reached £4,500,000, quite incredible, but somehow even that couldn't really lift my mood. I hope today will be a better day. I'm going to take myself for a walk around the farm I think, if the weather stays nice, exercise and fresh air will hopefully do the trick.
