There and back again – Adrienne’s trip

It’s northern November, it’s getting cold and days are shortening. The news talks of terrorist attacks in Paris. Europe’s railway stations and border crossings are crowded with refugees. Who would want to go to Europe at this time of year. Well I did – and I went.

As part of my bucket list I wanted to do the Christmas Markets that are held throughout Europe in November and December. I’d combine it with a cruise along one of the major rivers. The desire culminated in four kiwis and three Americans joining the last Christmas Market cruise on the Danube for 2015. Great excitement: seven women; 12 days’ shopping; luxury accommodation; nightly entertainment; local guides and delicious food. We were doing it in style.

Each day brought a different city or historic place to explore. At night we attended a concert or other entertainment on board after which we sailed off down the dark river through lakes and locks to our next day’s destination.

There and Back AgainWe explored markets in the town squares and bought as many little treasures as we could safely carry home. We tasted a wide variety of dishes, local and classic. We knew nothing of the local languages but, wrapped in bundles of warm clothing, got ourselves about the city or town we were in, knowing we had to be back on the ship before the anchor weighed. Then it was ship ahoy to our next river port while we ate the chocolates on our pillows, sipped hot chocolates, remembered the spiced red wine we had enjoyed at markets, and then slept soundly as we travelled along the calm river.

I’m not very mobile as also are many of you with systemic sclerosis and polymyositis who read this. The trip had its challenges. I need a walking stick to get about and have two speeds – dead slow and stop. Both of these were in use each day. Some days were tougher than others so I would give myself a good talking to and decide what I really needed to do that day and still feel that I had accomplished something satisfying. I was determined to get as much as possible out of the trip, to enjoy myself, stay well and not be a burden on travelling companions, who were helpful and supportive throughout the trip. Here are some of the techniques I used.

  • I carried my usual medications and spares, and took the recommended daily dose each day at the correct time
  • I kept a full week’s medications in one of those sectioned pill boxes and always had this box with me
  • My doctor prescribed me different antibiotics, which I filled before I left NZ and which I needed to use twice during my travels
  • I carried pain killers and used them to the limit some days so that I was able to do as many activities as I could
  • I had a copy of the prescriptions for all the medications with me at all times and a separate copy in my suitcase along with phone and email contacts of my doctors in New Zealand. Luckily I didn’t need to use them
  • I showed my sister, my travelling companion where all of my medications were and what they were for, so, if I had a problem she had some of the information she would need
  • Each day I chose my clothes carefully so I could add or remove layers to keep Reynaud’s at bay and deal with the sweat attacks I am prone to, hot or cold weather
  • When the main group went too fast during the walking tours or I was feeling more than a bit sore, I took a taxi to the walk’s end and met them there.
  • I used a good moisturiser and its contents were invaluable as my skin dries as quickly in the cold as it does in summer.

And what did I not do that I should have done?

  • I forgot Imodium and when I needed it I had to put up with vomiting and diarrhoea. I now have TWO packets and will not move even in New Zealand without it.

Cruising is great when you have a challenge like scleroderma – plenty of room, the luxury of staying on board for the day if you don’t feel up to it and making haste slowly. The downside: you have to get there. For me it has almost always been in cramped cattle-class in the back of a wide-bodied airliner.

There is the accompanying boxes of pills (1.5 kilos, in my case), the need to get up and stretch and the physical confinement. Is it 26 hours, or two stretches each of around 12-to-14 hours for the long flights? Everyone chooses what suits their budget.

It can be exhausting and unpleasant but a budget is a budget and I stuck to it. I fantasise that one day I will be fed into a fax machine, to appear in some other place, to enjoy myself without the uncomfortable journey – dream on Adrienne!!

Most of the trip was in economy. Both my sister and I have mobility difficulties and we booked to have wheelchair assistance at all the airports, to be whizzed across long distances. It’s a free service for everyone with mobility difficulties. Ask for it when you book.

BUT, sometimes miracles happen. We were waiting in our wheelchairs in Amsterdam for our Malaysian Airlines flight. A uniformed Malaysian Airlines official asked for our boarding passes. We gave them and he returned a few minutes later with new ones. He had upgraded us to business class. WOW, we had full-length beds, plenty of room and superior service throughout the 14-hour flight.

Malaysian Airlines has had a bad rap, a really bad rap after it lost a plane in the Indian Ocean and kind of lost its way heading out of Auckland recently. But we were treated like royalty in seats that were probably three times the cost of the cabin class ones we had purchased. The expense of buying business class was beyond our budgets but we really appreciated this wonderful Christmas present to each of us.

And then there is a second plaudit for Malaysian Airlines. I mentioned earlier that I had need for Imodium during my travels. This was on the long flight from Kuala Lumpur to Auckland, back in cabin class. Twenty minutes into the flight, the chicken I had eaten in Prague caught up with me and from then on for the next 10 hours I was a real mess. Again I can only praise the crew. The cabin attendant kept bringing me cold sparkling water, face cloths, various containers to fill up and was so concerned with my welfare throughout the trip. I survived this lengthy experience, I suspect, in far better condition because of the care and support he provided.

When we landed in Auckland to be greeted by a very large bus complete with several paramedics. Cabin crew asked my sister and me to accompany them. We made our slow way down and climbed aboard the bus. The plane disappeared and we and one other miserable looking younger woman who had the same problems as me, went off through customs and immigration at what felt like lightning speed. Auckland Airport staff were marvellous, organising shower and access to clothes from my bag. I felt human again. Not the best of homecomings but one handled very compassionately and gracefully. Thank you Malaysian Airlines.

The experience was very unpleasant and took ten days to get over yet I have no fears about flying again, with or without scleroderma. The cabin crews are well trained and do their very best in conditions which are just as bad for them as they are for you. Smile and say thanks was all I was able to do, but I am grateful to them for making the end of my lovely holiday so much better than it could have been. By the way, my sister says that they must have had a good air conditioning system on the plane as she was not able to smell anything. I relaxed.