This is my holiday diary, only read if you are really, really bored.
My bed support idea didn't work that well, it kept slipping off the bed and it woke Chris up and then of course me a few times. I will modify it a bit tonight. The lady who owns the bungalow is disabled herself. She came to see how things were. I asked if she had a stand aid or a smaller shower chair, but unfortunately they are being loaned out. When I booked the holiday Chris didn't need what he needs now. It is starting to get much harder for him to stand up, it is harder on me too, at 4ft 10" I am not much help to him in that way. The physio is looking into stand aids etc when we get back.
I had to wet shave Chris today for the first time, he can do it himself, although very slowly, but inspite of there being a fancy basin here that goes up and down, the mirror is to the side of the basin so Chris couldn't see in it to shave. It was a bit nerve wracking doing a wet shave on him, but he survived.
As we had some nice weather today we decided to walk down into Lymington town. We are actually staying in Penington, which is on the out skirts. It was a fair walk, an hour there and back, but we found a map in the lounge and that helped us find our way through the town.
Lymington is quite a nice market town on the coast. It was actually market day today and it was very busy which always makes life harder for Chris, crowds and wheelchairs don't always mix. His powered chair managed to navigate the cobbled streets, though how comfy that was for him I don't know. I did manage to get myself a nice icecream. Then the guilts sets it as Chris watches me eat it, he says he doesn't fancy once anyway, but that doesn't alter how it makes me feel. There were a few times when Chris had to go on the road because the paths were too narrow, but you are always going to get that in old towns. We wanted to see the harbour, but there were so many people there and seagulls flapping around, it was a little disappointing, plus I think we are a little spoilt with our harbour villages at home. We made a quick exit from there.
When we got back Chris was exhausted, it is really tiring for him navigating crowds of people. It meant he had to concentrate all that time and believe it or not it really wore him out. He had a nice long nap which he needed, especially after a restless night.
I ended up eating my ready meal on my own in the kitchen as the smells of cooking make Chris feel sick. I hate that, another thing MND has done to us. We watched a couple of films on television later and we both had a little whisky each, Chris down his PEG and me in my hot chocolate. We decided the easiest way to get him to the loo basin etc was to use his wheelchair. I wrapped a bin bag around the electric controller just to be safe. I am getting quite worried about how hard it is for him to stand up now. I hope one of those stand aid things will work in our home. We managed to get the bed thing sorted by turning the table the other way and Chris slept much better.
Day 2.
It is safe to say now that I do everything for Chris, for various reasons the choice was taken away from him up here, but now he has gotten over the initial embarrassment of me doing personal care for him, I think he is quite relieved about it as it was all getting such an effort for him. I don't mind at all. In a funny moment I was putting a roller deodorant under both his arms. He said 'I only do one.' I said, 'You only do one arm? ' he replied, 'No, I only do one run with the roller on each arm!' That made me laugh, my misunderstanding of him and his OCD, everything has to be done in a particular way. He can be very challenging that way some times. The only problem I am having is him getting weaker physically. The rate he is going I am wondering if he can make it to the end of the week being able to push himself into a standing position. I try my best to help, but I am not much use and I am giving myself back ache..not good.
The cough assist and suction routines continue twice a day, he still hasn't been able to use the NIV yet.
It was another wet and rainy day. We were planning to go to Beaulieu Motor museum, and hoped it would dry up.
Unfortunately it didn't dry up, not while we were out anyway. On the way there I suddenly went into panic mode because the petrol gauge on the car went from just below a quarter of a tank to the red with the petrol light flashing in about 5 minutes. That freaked me out, I hate living on the edge, then when we got to Beaulieu I checked Chris's pump and it was off and wouldn't switch on, panic number two, did I unplug the charger by mistake last night? Chris wouldn't get fed now till we got back.
We managed to get in a good look around the museum and the Top Gear attraction, but it was still pouring down so we decided to get back. I still didn't find a petrol station, but we made it back and found out where the nearest one was on Google maps. I also checked Chris's pump again and it started working! What was that all about? As soon as we got back to our holiday home too the sun came out...flipping heck. Chris then fell asleep and here I am bored again writing this.
We are supposed to be going to watch the guys come across tomorrow on the Solent swim, but the weather forecast isn't looking good, it isn't safe for them to swim in high winds. Good luck to them, I hope the weather is kind and they can do it.
Eating alone again while Chris sleeps. Sorry Weight Watchers, your ready meals are rank.
