It's been 5 months to the day since Chris was diagnosed, 5 months since our world was turned upside down, 5 months since our hearts were broken...... That's all.... 5 months.
Chris was diagnosed on May 5th 2014, my late dad's birthday. We thought that Chris being called in at short notice, for an appointment at 8am on a bank holiday, didn't necessarily bode well.
I started writing these blogs in June. I can't get over how much this bloody awful disease has changed all of our lives. It is horrific, all consuming and relentless. I might have had my suspicions of what might be wrong with Chris before his diagnosis, but I had no idea how our lives would change and how quickly too. Chris first went to the GP in February, so his diagnosis within 3 months was very fast. We didn't really have time to get our head around things, because as soon as we came to terms with Chris's health problems, they progressed a bit more and then we would have to get used to that.
We had no idea there would be so many people involved in the palliative care team that is assigned to look after him either and 'palliative', that term alone is scary, because that reiterates that this is a terminal disease with no treatment or cure. There seems to be constant appointments, some at home, some at hospitals, the physio, dietician and speech therapist, the neurologist, the respiratory doctor, the MND nurse, the palliative care nurse, the PEG nurse, the district nurse, the PEG pump nurse, the Gastro Doctor, the MND visitor and of course Chris's GP.
We know this support is good and Chris is grateful for it, but sometimes it seems that all life consists of is appointments. We have to live our life checking the calendar, just incase someone is coming or we have to go somewhere. At first people told us to have a holiday, to enjoy ourselves a bit, but once MND comes into your life, it is very hard to get away from it. The fact that it is progressive also means that we have no way of knowing what Chris will be like a few months ahead. We have no idea whether his MND is fast progressing or slow, but I would imagine it's somewhere in the middle. They say the average life expectancy for someone with MND is 2-5 years.
In January Chris had a bit of a limp and his hands were playing him up, but otherwise he was farming as normal, well sort of. He did have a couple of falls and I started to worry about him when he was out. I was still nagging him about the hours he worked, I was still trying to paint for a living, albeit not very successfully, but it was something to do in the evening while Chris was working. Now we spend a lot of time together, which was what I always wanted, but not this way. I was always trying to get Chris to think about retiring one day and I think he was coming round to the idea, but now him reaching retirement age is probably not going to happen, not the way his MND is progressing. I'd give anything for things to be the way they were again, Chris working all hours, me nagging him to rest, at least that would mean that he didn't have MND.
The thing I have learnt though, is that Chris is happiest here on the farm. If he can get out for a couple of hours a day on his scooter, then he is happy. Going away made him miserable because he couldn't drive and I had to push him everywhere in the wheelchair, he lost his independence. I think we'll opt for the odd day out or a weekend up to see Chloe, (on the coach next time though) rather than plan a holiday again. I can't bare to see him sad.
So now this is it, this is our life. I'm not sure I will ever come to terms with the fact that Chris has this awful disease and that it will take him from me. All we have really is hope, hope that it won't take him too soon, hope that he'll make it to Chloe' graduation in two years, hope that everything he will need for his care he will get, hope that his suffering won't be too great and hope most of all that a cure will be found one day and that no one will ever have to suffer this awful disease ever again.
MND, we did not invite you into our lives, be prepared to be hated and be prepared to fight as you aren't taking Chris without one!
