Sunday 24 May 2015

No. 185. One scary disease.

Well MND is one scary disease and just when you think you think you have a handle on it, it can step up a notch and bite you on the bum.

I went into the lounge this morning to see Chris and I could see he was having trouble breathing. This has happened before, but it usually passes after a minute or two. After about 30 mins and after giving Chris a lorazepam to relax him, there was no change. I asked Chris if he wanted me to call the doctor and he nodded yes, he was getting quite distressed at this point which I am sure didn't help. Well 111 was useless, I was just put on hold so I thought maybe I should just dial 999 instead.

The rapid response was sent first from Helston and also an ambulance from Redruth which is a good 30 minutes away. Both turned up eventually about 35 minutes later, well we do live a long way from anywhere it seems. Both were very good, the first responder gave Chris oxygen which I wasn't sure was the right thing, but Chris's SATS did improve and as soon as they reached a good level after a few minutes they took him off it. They did all the usual examinations to check for infections etc, but we are pretty sure it is just his chest muscles not working as well as they should. They stayed quite a while until Chris was breathing better and did offer to take him to hospital, but we decided against that. A&E at Treslike, especially on a bank holiday weekend is never going to be a good experience. Chris is seeing his respiratory doctor on Tueday anyway about his breathing problems and the ambulance crew told us to dial 999 again should things get worse. I always worry that we are wasting their time and over reacting, stupid I know, but the ambulance crew reassured us that was not the case

Chris said his breathing generally feels worse, he can't see the respiratory doctor soon enough really. I think he may need Non Invasive Ventilation whereby air is pumped into the lungs via a mask to help the weakened chest muscles/diaphragm. I guess we'll see what the doctor says on Tuesday.

They must have thought I had called them under false pretences at first though as Chris greeted them with his beaming smile as always. Will nothing knock his happy disposition? 'You look well' they said, everyone says that, what more could you want than to look healthy while you are dying? ( I write that with a hint of bitterness and sarcasm.) 

It is hard to understand why sometimes his breathing is OK and then other times it isn't, but then sometimes his legs will give way for no reason if he tries to walk a short distance so I suppose the chest muscles are the same.

So yet another scary thing this disease has thrown as us, well like I said, MND is one scary disease.