On the medical appointment day, I was a little shocked to see the driver arrived with a van/mini bus, not a passenger car.
Since the first two transport support from them were with passenger car, I believed that there was a mutual understanding that I needed to be horizontal/lie down during the transport. It was a different driver this time, and he wasn’t informed my difficulty at all.
I asked questions in order to find any possibility that I could at least be tilted in the seat. I tried to explain why I was so worried about not being able to lie down during the trip, but it only got awkward and I gave up.
I’m frustrated that people just don’t get it when I explain “I need to be horizontal, otherwise I would collapse” until I have collapsed. I just don’t know how to make them understand without collapsing. And I WANT to avoid it! It’s not only an awful experience and triggers prolonged post collapse exacerbation, it causes inconvenience to the appointment, and makes people around me feel uncomfortable with me.
I didn’t want to miss the appointment, so I had to go with the flow and see what happens. The most important thing for me is to get to the appointment. The driver rolled out little steps, and I climbed very slowly one step at a time while he was putting my wheelchair at the back.
The seats in the van are very upright. I couldn’t even slide my body a little in anyway because the seat was small. Sitting at the edge of the seat still left me very upright… I started feeling unwell quickly.
About 3/4 of the way, the driver noticed I was struggling. He couldn’t hear my voice, so he stopped the van to communicate with me. I asked if I could undo the seatbelt and lie down on the seat. He hesitated as I’m not supposed to do so. He asked if I could hang on for another 10 minutes until we get to the destination. I had no idea how I would be in another 10 minutes, but I said I would try since there wasn’t any other option.
He asked if I was familiar with the street. I had to say no, because I only saw sky in the previous transport because I had the seat down.
My mind wanted to cooperate with the driver, but my body just couldn’t take it anymore. When we reached the destination, my body was completely collapsed, almost paralysed, was feeling exhausted and extremely weak. I was calm. I just wanted to lie down to relieve from the suffering.
At this point, the driver’s attitude was completely changed and he helped me with every little thing I had to ask. Getting from the seat to my wheelchair became an awkward challenge and struggle. The driver unbuckle the seatbelt for me because I had no strength left in any part of my body. Then, I had to slide down on the floor. Then, slowly nudged my bottom towards the edge of the floor of the van. From there, the driver had to almost carry me into the wheelchair. Some people outside of the building were curiously watching us.
He wheeled me to and into the clinic. The usual friendly receptionist greeted me with smile and clocked me in before I say anything. I explained I became very unwell and I needed to lie down somewhere. It wasn’t a problem at all, and she got me a nurse.
The driver kept pushing me into the nurse’s office. He and the nurse helped me to get on to the bed.
I’m afraid the driver felt responsible. He didn’t leave until he was sure I would be okay. He was so concerned that the nurse mistakenly thought he was my husband or partner…
He promised he would try to get a passenger car when he take me home. (I didn’t know, but it messed up his next pick-up schedule. But he didn’t complain at all. Between him and Transport Scheduling Officer, the alternative arrangement was organised.) When he was taking me home, he also explained to me that he told “the girls in the office” that I must have a passenger car, not the van. He was firm and serious, so I hope his message reached them. His support and eventual understanding gave me peace of mind. Also I would feel safe with him next time because he has got it what I mean by “I need to be horizontal, other wise I would collapse.”
It would be nice if my future transport support was with him, although I know it is unlikely because he mainly drives the van.