Because my eldest daughter and her boyfriend live with us there is always someone to talk to at home, plus Chris's sister and brother pop in now and then to talk farm stuff. Now we are away it is obvious how little Chris talks these days. I talk to him a lot, but he replies very little. Talking for him is such an effort now, especially with the mucous in his throat. It is always very rare for us to be totally alone, but here alone on holiday it is more obvious now how little he does talk.
Recently I have had to be careful cooking around Chris as the smells makes him feel sick. I tend to eat away from him anyway, but again here on holiday it is more obvious. I had to sit on my own in the kitchen this evening with my Weight Watchers ready meal. Booking a meal out or having a coffee somewhere just isn't happening. Multiply what he is experiencing when I eat by adding a restaurant full of people and food smells let alone him just having to watch everyone eat while he can't. I can't deal with that let alone him.
Even when we were out walking around today Chris was always lagging behind in his chair and I am a slow walker. The town was busy and him navigating crowds is tiring and stressful for him. The number of times I turned around and found he was a good 20ft behind me. I tried walking beside him holding on to his arm, but then I would be in the way. When we got back he was so tired that he slept for two hours.
I never expected to recreate anything like our honeymoon. MND has put paid to that in so many ways and of course MND just had to tag along for the ride, we weren't able to leave that at home, but it is nice to return to some of the places we visited back then.
Sometimes MND makes me angry, some times it just makes me sad. We will do our best though to get some kind of precious memories from the week. We have some good days out planned so I still think it was a good idea to have a week away together. We aren't totally defeated by MND yet.
Even so, MND is such an isolator in so many ways.
