No. 246. 'This wretched disease.'

The carers said last night that Chris had developed a small pressure sore in his coccyx area, I was gutted about that. The district nurse won't come out until tomorrow when the air mattress arrives. The carers and I have jiggled around with pillows and positioning, but Chris's positioning is also crucial to him being able to breathe too, so it is hard to get the balance right.

Chloe and Tom went back today, they have a wedding tomorrow and we both felt they should go, plus work beckons for them. We are glad Chloe came home for a few days, she was able to spend some quality time with Chris. She was a little sad he couldn't say I love you properly any more, but we developed hand signals instead. Chris never did get his head around the 'Eye gaze' and being a complete technophobe didn't help. Now he is so weak and sleepy I don't think he could focus his eyes properly if he tried. I have 'Verabally.' on my iPad which helps if I really can't understand him. 

The chest and diaphragm spasms have been happening more frequently and they really scare Chris when they do. I usually dissolve 1/2 a lorazepam in a bit of water and place it under his tongue and this usually works very quickly. He also has diazepam and I gave Chris a morning dose yesterday, but it made him so sleepy. I spoke with our GP and he recommended giving Chris diazepam twice a day along side the Oromorph. I had already talked to Chris and we both felt it is better for him to be sleepy and comfortable than more awake and getting more spasms which scare him, so diazepam twice a day it is along side the Oromorph. Chris woke at 4 am in distress too so I gave him some more Oramorph then which helped.

Chris has also been biting the inside of his mouth which he doesn't know he is doing and I only discovered it doing his mouth care. Oral thrush is being troublesome too, so the GP is prescribing a different fungicidal medicine that will go down his PEG, hopefully that will help.

I get asked quite often how I am and strangely most of the time I'm OK. I feel I am running on auto pilot, getting on with things in my usual clumsy way. Everynow and then the tears flow, which is everyday now. I spend a lot of the day just sitting beside Chris. I'll read to him if he wants, mostly he just wants to sleep. I'll try to reassure him when he gets scared. 

And boy has Chris has been scared a lot to day. He really is struggling to breathe and that really does fighten him. I have been told there is no upper limit to the Oromorph dosage so when he asked for more I gave him another 5 ml. I know the body does get used to it. The GP said to me that I probably feel helpless and I do. To watch someone you love die slowly in such a cruel way is beyond hateful. My heart breaks to watch Chris suffer like this. 

I am sitting here writing this holding Chris's hand. The extra 5ml of Oromorph has kicked in and he is having some kind of sleep.

I don't want to lose my husband believe me I don't, but watching him like this part of me wishes MND would do it's worst and leave him be. How much more will this wretched disease make him suffer?

I hate f*****g MND so much, in fact there has yet to be a curse created that is strong enough to vent my anger or describe my hatred for the vileness that is motor neurone disease.