The train journey.
This first tale is just to help those who may find themselves in a similar position.
A few weeks ago Chris and I were invited up to a special event in London (more about that tomorrow). After the initial thought of 'No way! Travel to London?', we changed our minds. We were humbled to have been invited and thought that this could be a once in a life time chance for us so decided to go. We thought about how we were going to get there. I did not fancy the idea of driving all that way into London, so that was out. The train is pretty expensive, but only a five hour trip. The coach was cheaper, but took six hours. Andrew, who was coordinating the event, found out about the trains for us and so we decided to go by train and booked the tickets. I haven't been on a train since my teens, let alone with someone who was disabled so was totally ignorant of the process. I booked them through Trainline.com. I told the man on the phone that we needed a disabled seat. He booked us two seats I paid the bill and waited for the tickets to arrive. While we were waiting for them to turn up I was worrying how I was going to get Christopher and a suitcase on the train. Someone told me that you can book up assistance. When the tickets arrived they didn't mention anything about a disabled seat so I telephoned Trainline again. They were no help whatsoever ever, but they did give me the number for Travel assist.
The man on the phone from there was very helpful. He told me we couldn't book a disabled seat, but that there were two in standard class and one in first class. I told him our seat reservation numbers and he said they weren't the disabled seats, but he had put the disabled seat numbers on our assistance booking form with the option of going into first class if necessary. OK, I thought, that seemed more promising. Well we were taken to Redruth train station safely on the day by a family member who runs a taxi business. The travel assist worked well and they got us on the train. They told us where to sit and parked up Chris's wheelchair. There was a reserved ticket on the seat which I knew wasn't ours and I asked one of the train guards about it, but his response was to take it off. I still felt uneasy about it though. Meanwhile a lady with a child in a push chair sat in the secondary disabled spot on the other side of the carriage. At Exeter another man in a wheelchair borded the train. His tickets did indeed have the seats we were in on them. A while before Chris had gotten uncomfortable in the wheelchair, so at Plymouth he got out of his wheelchair and sat in the seat beside me. When this man made it obvious it was his place I managed to move Chris's wheelchair over next to the lady's pushchair and this man could then wheel himself into his rightful place. He told me, as he was an avid traveller, that it was the disabled seat opposite that couldn't be booked and I expect that was where we should have sat. Well that was a learning curve, but it all ended OK thank goodness. The moral of this tale is to book your ticket through Travel assist, not Trainline and make sure that you have the seat booked in carriage C. I'm not sure we will be travelling on the train again anytime soon, but I will certainly know next time. I am certainly a little nervous about our journey home that is for sure.
The taxi journey.
Well we survived the actual journey. We were met at Paddington by a man with small UTV and he loaded us up, our suitcase and Chris's wheelchair. We spent ten minutes or more being whizzed around the station in the freezing cold while this man was looking for another passenger who needed a lift, but we never found them. He took us to the taxi rank, Chris was quickly wheeled into a taxi and off we went. The wheelchair wasn't clamped in so everytime the taxi went round a corner, the wheelchair tipped backwards!! that was a little scary. There were Chris and I trying to keep it in an upright position! We were dropped off at the Premier Inn and I managed to push Chris and pull the wheelchair the short distance inside. The disabled room was on the first floor and was perfectly OK. Sigh of relief' we had arrived.
Reality check.
We went down to the restaurant later to have something to eat.
Now we knew this could be problematic, but they had a fish pie on the menu which we thought Chris might be OK to eat. He did try one of the green beans that came with it, but couldn't eat them, the granary bread or peas that accompanied it. He managed to eat a fair amount of the fish pie, but it took him ages. I did suggest asking if they could puree something, but I think Chris felt embarrassed about eating pureed food in a restaurant. Now Chris doesn't say much, but I could tell by his face he was uncomfortable. He had also fancied a cider, but he was close to choking a couple of times on that and with the fish pie and I could see the anxiety was rising in him. He tried a hot chocolate later too and he did nearly choke on that. I could see he was scared of making a fool of himself in case he choked and he was also sad too because here in the restaurant, he could see everyone eating huge meals and it made him really miserable. 'Remember what I used to put away' he said and I had to stop myself from crying for him. I bloody hate this disease, it is so damn cruel, enjoying a good meal is such a simple pleasure and he can't even enjoy that now. He ended up leaving most of the cider and the hot chocolate. I just wanted to get him out of there and back to the room so that he could relax. Once there he lay down on the bed exhausted and fell asleep.
This is a bitter sweet trip. We wouldn't be up here if it weren't for MND, yet this whole process, the whole journey, eating out etc, it just hits home what this disease is doing to Chris and I hate to see him sad, because when he is sad I am sad.
I am sure tomorrow will be wonderful and special and we will be able to add them to the good memories that we have rather than the bad. I just wish the bad ones weren't piling up too.
