I remember as a child my image of the North was dark and cold, which was strange considering my Mum was born ‘up North’. We used to visit my aunt in Ryhope, near Newcastle every summer, actually that may be where my dark image comes from. The back yard was very dark, and the house could be cold. But I digress, this is not about my childhood, it’s about an amazing trip to see our son near Leeds.
We planned the trip for weeks and it was only possible due to Conveens (see my blog “Not so public convenience”) and some new medication that has decreased the number of collapses I get. Now after all the planning, the day arrived. Not unusually I awoke early. My carer arrived at 8am to get me ready to go. Mary did last minute packing and my carer washed and dressed me, plus puts on a Conveen. Lastly, it’s time to get in the wheelchair. As usual this is a lengthy process, but at last we are ready to go. The carer who is with me that day helps me to the end of the alley with our cases, while Mary does the last minute things that always need doing when you go away for a week. We find the Slinky accessible transport already waiting for us, so my carer decides to stay into her own time in order to help get us loaded and off. She is a wonderful lady, not just for that, but for many reasons. She is helpful, understanding, caring, thoughtful and very good at her job too. I am very lucky to have 4 wonderful carers.
On route to the station I have a collapse in the Slinky. Reclined in my wheelchair I am secure and comfortable, the driver does well not to make the trip too bouncy or swing too sharply around corners. When we arrived at the station there is a nice young lady from the assisted travel staff who helped us to the platform. On the platform a staff member we’d met before made himself known and told us where to wait and when we will be taken to the appropriate part of the platform for loading on the train. The train arrived about five minutes late.
We had been upgraded to First Class by a manager at Cross Country as Second Class was full, so we were looking forward to the journey. But we were surprised to find the carriage was packed and that Mary’s booked seat was in use by someone’s bags. She found a better seat. But both her booked seat and her better seat were a far way from me. The seats near me had both been already booked when we were booked our tickets, but we hadn’t realised how far away Mary would be.
Unfortunately, the train was the old-style Cross country one, that was obviously designed by someone who had never used, or maybe even thought about wheelchairs. The space they allocated has a fixed table that takes up a big part of the space. That would be fine if you had a wheelchair that fit under the table, or a small wheelchair. But with a power wheelchair the only way to fit in the space is either sideways or at an angle. Either way your feet stick into the corridor. This means that occasionally people knock your feet. I could only recline a small way.
Now the good part of First Class. The moment we sat down the stewardess came around with free drinks and sandwiches. It was nearly midday. We later discovered that we could ask for hot food, and so we did.
Here came the test, I was sitting facing a carriage full of people and I needed a wee. I had a Conveen on, which for those who don’t know means I can wee into a bag on my leg and no one will know, except me. Oh yes, and everyone reading this blog. But think about it from my perspective, it’s still like weeing in public. I was not brought up to find that something I can do. Well, I was not brought up to talk about it. The only reason I am is to help people. This is a real issue, for real people. If I don’t discuss it and give my thoughts and solutions, who will? So, my discomfort was building.
The rain was hammering down on the window, not helpful when I needed a wee. We passed Bristol, the people next to me got off and Mary was able to sit near me. It’s amazing to be able to travel all this way on a train. The fact my new medication has reduced the number of collapses I am getting is a big factor in that. Of course, the idea was that the Conveens would also help, I just needed to get up confidence to use it.
We are arrived at Birmingham, what a dark station it is. I quite like the City, but not the station. Back in the 1980’s I visited here on business many times. I also came to exhibitions at the NEC. Ah, memories. The rain let up and there is a grey misty air. Onwards we went. I was going to have to face my fears. I decided if I did’t look at people then I wouldn’t feel so self-conscious when I used the Conveen. Success, that seemed to be the way forward, for me. Everyone will be different, not everyone will find it an embarrassing situation. So, the benefits of having Conveens are now apparent. Ideally it would be a good idea for Mary to empty the bag. But I chose 750ml bags to hopefully last the journey, and it did, because I couldn’t see an easy way for Mary to empty the bag in the carriage. I should point out that the toilet on those trains is totally inaccessible for me.
Into Chesterfield with its crooked spire. Many years ago, Mary and I looked at a possible job here. But we choose to move to Haverfordwest instead. The rain re started, it was hitting the windows hard and running down. More drinks and snacks came around. That’s when we discovered that we could ask for hot meals and did.
A lady sitting in front of us regaled us with her health issues. She lost a leg as a child and they sewed it back on, badly. Now she has trouble walking. She also uses the assisted travel. Another lady told us Mary and I are inspiring because we seem so bright and happy in spite of our difficult situation. We tell her that we are Christians, so we have hope in God and that we try to look positively at life.
On arrival at Leeds a very helpful assisted travel chap gets us off the train. He took us on the service lift in the station and through back corridors to the taxi rank. We only emerge into the crowds just before the exit barriers. Even then we go through them the wrong way. I felt like a US president being escorted by security through back routes to avoid snipers.
At the exit doors he left us to await our taxi, which was running a little late. When it arrived, I was disappointed to see it is one of the smaller ones that I just fit in. This will be an uncomfortable last leg of the journey. The drivers first language is not English, so I do that typical British thing of speaking slower and louder. We get through about the destination. Why he needed it when the taxi was pre booked I don’t know.
As we drove, I was reminded of the old joke about tearing down the dotted line. He certainly spent more time between lanes than in them. He was praying on his prayer beads for the first part. I guess he was Muslim, and it was prayer time. I would have liked him to have both hands on the wheel and pray in his head. Mary and I certainly prayed for safety in our heads. It’s difficult to understand how he could have such big wing mirrors and yet not see cars on his right. I lost count of all the near misses. But we did arrive safely, if a bit shook up.
He parked down the road rather than on our son’s driveway, no I don’t know why either. Then, in the rain unloaded our cases to the side of the road. Shouting to Mary to fetch them quickly. When she wanted to make sure I got out safely from the taxi. Going backwards out of a taxi is very tricky and Mary always keeps a keen watch.
Our son had left the house keys in a safe place through a back gate. Mary tried the gate but couldn’t open it. Then I suggested she push harder and fortunately it opened. Before I could enter the house, Mary had to find the old sheets she had brought for the floor to protect Chris’ carpets. I was quite wet when I eventually entered.
For the next hour or so Mary worked very hard cleaning and preparing. We had bought a second-hand hospital type bed, commode, bedside table and over bed table all from eBay. It was all much cheaper to buy than to hire. But that meant that Mary had to thoroughly clean everything on arrival before I could use it. The bed also needed setting up. Chris had put it in place, but the headboards, mattress and various bits needed attaching after cleaning.
Weeks before arrival and after a lot of searching we had managed to find a local care agency to employ who could offer care for the week. They arrived at 6:30pm about an hour and a half after us. Mary was flagging by this time and ready to assemble the bed and put down the carpet protection we had bought. We didn’t want to ruin Chris’ carpets with my wheelchair. The care manager who brought the carer pitched in with the carer to help. They helped finish cleaning the bed and other bits, assembling the bed, and laying the floor protection. Part way through the care manager had to go and pick up another couple of Carers from their clients. They joined in for the last half hour. It was a wonderful help to us and very welcome after a long trip.
The care company we found turned out to be brilliant generally and the carer they chose for me amazing. She was a lovely young lady, full of vitality and life. Intelligent and quick witted which made for interesting conversation. She quickly picked up the lymphatic massage, which was very beneficial to me. She was also very helpful around the house and got on well with Mary, Chris and me. We really hope we get to see her again. The original plan had been to have two carers, one during the week and one at the weekend. But the one carer came especially on her weekend off, just to us, so that we would have only one person to get used to.
Father’s Day was the day before we left. Our other son and wife joined us for the weekend, a lovely treat. They live not too far away. We had planned to hire a wheelchair accessible taxi and go to the RSPB Fairburn INGS which is nearby, but the only nearby taxi broke down and one further away was going to charge a lot. So, we headed up to Ledston Hall in the village, it was interesting to look around the grounds.
On Saturday we went up there first, the private road up has speed bumps. I know its a private road and they want to slow traffic, but speed bumps are very scary in a wheelchair. The bump is enormous, even very slow. But we made it and looked around. That night I was treated to a McDonald’s by my sons. That may not sound a treat to you. But I have wanted one for the past year and a half.
Sunday, Father’s Day, after cards and presents we had a BBQ, after a very wet week the sun came out for a few hours. We had a lovely selection of meat and treats. Then afterwards it was back up to Ledston Hall. No one took coats, except me, but I had no wheelchair cover. The rain decided it had kept off long enough and it poured down. It only stopped once we were in sight of Chris’ house.
We were sad to leave on Monday. Chris had to leave for work at 8am, our taxi wasn’t until 10am. This time we had requested a different driver, he was much better. The same assisted travel chap helped us at Leeds station, the train was running nearly 10 minutes late. I was pleased to see it was an HST train. These have a bigger area for wheelchairs and the carer place is opposite the wheelchair. The only problem is that, just as with the other train, the table is fixed. So, I couldn’t recline much, but at least my feet were not in the corridor.
Food was less forthcoming on the homeward trip, we got sandwiches eventually, but plenty of drinks and snacks. I had overcome my issue of using the Conveen.
At Taunton the Slinky was waiting for us and after a diversion to collect another person, we made it home. Then Mary had the major job of unpacking and putting everything in my reach.
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