Last night I read a blog post by @jilly you can read it here I found it absolutely fascinating and could relate to quite a bit. I tweeted Jilly and told her I really liked her article and I thought I might write my own post having travelled twice since my PoTs diagnosis and with an upcoming trip planned. I will be naming the airports used, airlines, their facilities, good and bad.
Now within a matter of days after my diagnosis in 2013 we travelled to the States with Delta out of LHR, at the time I was using crutches, my hypermobility wasn’t diagnosed but obviously I did have problems with joints I just didn’t realize back then there was a medical name for it. As we got to the desk on the day of travel to check in, the clerk couldn’t have been more helpful I was already struggling to stand, so he immediately arranged “special assistance”. He told me to sit down so I didn’t fall down and proceeded to complete the check in process with Andrew. From that moment on we were taken care of by the Heathrow Airport team, a wheelchair was bought through for me and I had never realized how many special lines there are for disabled travelers. As I was in an airport chair I was asked to get out for the scanning process, which was ok but the stresses of travel had made me really tachy, so I was unable to stand for long. We were then taken to the Special Assistance area to wait for our flight, now Andrew could have nipped off shopping if he had wanted but this quiet zone was bliss. Not long before our flight they came to get us on a golf cart and took us all the way to the gate. I was super impressed by this service, it’s free you just need to ask for it!
At the gate there are special seats for disabled travelers, right at the front and once again, once it’s time to board, yes it was my turn first. So the ground crew called me and another lady, there was no rushing us, they gave us as long as we needed. Once we got to the plane, the question was asked would I like the transfer chair, I had my crutches so walked/hobbled to my seat. Thankfully the seat configuration was such that it was just Andrew and I to one side, so should I need to get up it was nice and easy. However why do people stare when they see someone obviously struggling and in pain? The crew were great, they kept coming to check on me, topping me up on fluids and snacks, it was a great first experience. When we got to Atlanta we had to be last to disembark that’s the way it is with special assistance, the help was already waiting and I was soon being whisked to immigration, again with all the special lines, we were through ahead of the rest of the passengers. I was really grateful for this help, I don’t think my PoTs would have coped with the stress of the stopover, Atlanta is a huge airport and you need to take an underground train. The helper was fantastic and really looked after me. We were soon at our next terminal and ready to board our next flight, again same process applied, on first, off last. Wheelchair was again waiting at Orlando, he took us all the way to the car hire company.
In summary I couldn’t fault this outbound trip I had been nervous but once we had got to Heathrow, the ground crew agent really assessed the situation and just took control.
On the return journey we got the Orlando to Atlanta flight no problem, however there was no chair waiting for me, so we waited and we waited. With 20 minutes until our plane was due to take off I was now in full panic mode and tachy. Knowing we had to get on the underground system and round the airport I felt this was going to be impossible. Somebody finally arrived to take us and the race was on, poor Andrew was trying to keep up, and the wheelchair pusher was just off. By the time we got to the plane it was pretty much closed and I think they were ready to offload our cases, but I explained they had left us at the gate. They were so apologetic, they radioed down to leave the luggage and we were whisked onto the plane, however they didn’t put us into our seats, we were given an upgrade to Premium Economy, I was pleased with that, that was one of my most comfortable flights, my hips didn’t hurt, I could stretch out that little more. If only I could always travel that way 😜. When we got back to Heathrow the Special Assistance team excelled themselves again, a group of us were picked up and taken all the way to Border Control, again there is a special line so no lengthy queuing.
My first trip after my PoTs diagnosis was a really positive experience, but I used as many of the tools available to me.
Fast forward to September 2014, I’ve now been housebound for nine months, my health is very poor and in August I was lucky enough to be funded my own wheelchair by TVP. So we have he trip of a lifetime planned, it’s been in the pipeline for a year. I had been preparing everything, medical licenses for my drugs, complicated but necessary. Special assistance booked for the journey, essential as now I had received my Hypermobility diagnosis, but not the full EDS yet (although I did know I had it).
By the time I was dropped at the airport I was tearful I was actually scared of this trip, I was in my own chair, traveling to the East, I was very ill, I didn’t know how I would cope and to cap it off some of my medication had run out a week previously but the pharmacy had been unable to supply as there had been a problem, so I was going to be “cold turkey” off some of my meds.
We checked in, we were sent to the special assistance line, good start. First up, two able bodied men in the line? No idea why but they went first anyway, maybe they had an aversion to the long standard queue. We had hours and I wasn’t going to worry. So once we were checked in, the procedure regarding my chair was explained, I would go to the door, it would then be taken, bagged up and put in the hold. We didn’t really need the special assistance team as I had my own chair this time. If we wanted to use their quiet zone we were more than welcome though. Next up was security, I will mention this as last year I had been in an airport chair and was asked to get out. This time I was left in my chair, I was patted down, scanned with a handheld scanner it was all very simple, they do ask you to move about and if they cause you pain you need to tell them. We cleared security within fifteen minutes at Heathrow it was amazing, great service from them.
Next up our flight, we flew Singapore Airlines, now I had read great things about them so was really looking forward to this. Loading was good, again boarded first, my chair was taken, quickly and with no fuss. The staff then helped me to my seat, now my only criticism is they could have moved me closer to the door, not upgraded, but the same class seat nearer the exit, I was a long way back. Then the issue I was in a middle seat, so once seated and my crutch taken away, next person arrives and sits down. No idea he is seated next to a disabled person. In fact on both flights I appear to have been seated next to people with narcolepsy, just my luck. The staff were great they did come and check I was ok, they kept me hydrated and gave me fruit snacks. However after three hours my SI joint started playing up, then my hips, I was in agony. Thankfully I bought enough doses to double up my pain relief on the flight, but it didn’t help. I had to ask the stewardess to wake my sleepy co passenger so I could get up. I got Andrew to help me to the loo, my hips were creaking and cracking. Long haul flights are not good for ehlers-danlos sufferers in my opinion, or at least not for me. By the time we got to Singapore we had been flying for over 13 hours, the crew had done their best.
Once we got landed, they reunited me with my chair, now this is where Singapore Airlines let me down. My chair was not bagged, they had run out at LHR, so my beautiful brand new £3000 chair, was now scratched and damaged. There was several nasty scratches on the main body and the right hand brake was completely bent. I was really upset, but what could I do? I was tired, in a strange country and just wanted to get to my destination.
If you are a regular blog visitor you will know how amazing Singapore was, now always the most disabled friendly place, with the exception of the MRT, that’s got to be the best thing ever for disabled travelers!!
So it finally became time to come home, we had checked in online, I had moved our seats as far forward as I could, but again this wasn’t that far. I lived in hope that when I got to the desk someone with common sense would take over, oh no, we were left in the seats I had chosen. The loading process was much the same as Heathrow, however Changi airport is huge and I specifically asked them to bag my chair explaining the damage that had occurred on the outbound trip.
Again he flight was hard work, little miss narcolepsy didn’t help sitting next to me, being so immobilized for so long isn’t good for my SI joint and hips. I tried to sleep but that was fitful and uncomfortable. Again the crew tried their best checking in on me regularly, which was kind and supportive, what I needed was to lay down, stand up, move about, all the things I couldn’t do being trapped in this tiny seat.
So Singapore Airlines in retrospect when you deal with a wheelchair traveller, respect their needs, above and beyond anyone else on that aircraft. Do they need to mobilize? Should they have additional leg room? How can you make them more comfortable? Finally that very expensive tool they use to get from A to B, that pride and joy, yes it is my pride and joy, please look after it!! Because you didn’t and you didn’t say sorry, you didn’t care and that makes me sad!
So next week as I am due to travel to with Delta and Virgin I wonder what this journey holds for me and my wheelchair, I will be reviewing my experiences 😊