Life with a wheelchair is one area where at the moment it only impacts when we leave the confines of our home. Generally that will mean a trip to the hospital for a check up or a shopping trip somewhere. Occasionally we will get really daring and venture up country to visit our daughter in Brighton and then we really start to learn about life with a wheelchair. There are the obvious problems of access and realising that pushing a relatively slim man up the slightest incline, is like pushing an elephant up a steep hill. After once pushing Chris on the flat in a force 10 gale whilst trying to hold onto our bags as well, felt like I had run a marathon and for anyone who knows me, I'm not exactly marathon material.
Apart from all that there was the effect on Chris and how it had made him feel. To suddenly be dependant on me, to have his perspective of the world change and also of how others looked at him. He hated that, it has take him some getting used to.
The progression of his MND and his increasing loss of balance has meant he is now getting an EPIOC wheelchair and for that we are both very grateful.
That learning curve continued with our trip away this week to London to attend the Ice Bucket Challenge event. It started with booking disabled seats on a train. When are seats disabled seats? Not when you book with the with Trainline apparently. I asked for a seat with wheelchair access and was led to believe that was what I had booked, but no, that later proved not to be the case. I don't think it was entirely their fault, I was just ignorant of the whole process. I then worried about the logistics of getting on a train with Chris in a wheelchair and a heavy suitcase (you might be surprised to know what a PEG pump and stand and feed for two days weighs). Someone then told me I could get help from travel assist, so I went ahead and booked assistance. It was then I was told that the seats that I had booked weren't disabled seats, but that there were three on the train, two in standard and one in first class, but I also later found out that we weren't guaranteed one of these seats as I hadn't actually booked them. We were left to pot luck as to whether there was a free space or not. It also turned out that the first class compartment was totally unsuitable as the stations in Cornwall are too bloody short (apart from Penzance) and first class is always left dangling in the middle of nowhere miles away from the platform.
This resulted in both the journey up and back being fairly stressful and we had to move ourselves around a little like musical chairs as the rightful bookers of the disabled seats came and went along the 41/2 hour trip and we were also having to compete for the one non bookable disabled seat with families who had babies in prams, oh and also copious suitcases, as it seems there is not enough room for people to put their cases on a train. Thankfully Chris can still manoeuvre himself into an actual seat and folding his wheelchair helped a bit too. I was so glad he could hold onto his pee, he paced his energy shakes very well, as there wouldn't have been a hope in hell of him reaching the toilet on foot on a moving train.
Travel assist had been brilliant though, at Paddington they were wonderful. I kept having thoughts of being left on the train at Redruth and it turned out I was right. We arrived at the end of the journey with a station resembling the Marie Celesste, not a member of staff to be seen, where was travel assist?. I leant out of the door shouting like mad trying to get one of the train guards attention. Thankfully I succeded and two of them came to our rescue with a ramp, they were as bemused as we were as to the whereabouts of the station staff. I tweeted First Great Western in the taxi home and they have promised to investigate. We should have taken it as an omen I think when on the journey up from Redruth one of the station staff couldn't help as he was recovering from a heart attack and the other one had to be careful as she had just had a knee replacement.
We also learnt that when booking a wheelchair accessible taxi to make absolutely sure that the taxi company know that you will need a ramp. The one that collected us from the Premier Inn in London was accessible, but it had no ramp, what is that all about? The driver was very apologetic and exceedingly helpful and we thought that OK, Chris could probably get up the step with help which he did. We have since discovered that Chris is unable to get out of a taxi on foot. In the taxi he could not support his weight bending over and he slipped down onto the floor. They only way he could get out of the taxi was to slide along the floor, slip his legs over the side and the driver and I helped him up. We did have good laugh about that, but that was indeed a steep learning curve.
So the moral of this tale is? book train seats with Travel assist direct, get on and off at Penzance, well the train can't go any further as it is the end of the line and it does have a long platform and to make absolutely sure that a wheelchair access taxi actually have a ramp. Life with a wheelchair can be really an unpredictable and frustrating one.
Better still, let's just stay in Cornwall, well there is no place like home.
