I love visiting different countries finding out about their history, culture, fashions and food.
My husband and I have a little more time to travel now that we are both retired plus our sons are grown up and have their own children so our money goes a little further too!
I can remember very well the first time we went on holiday without our sons, we couldn’t quite believe how much cheaper it was and how little money we spent while there!
When I first developed dystonia I thought I would never travel long distances again, how wrong could I be?!
The early days of coping with dystonia were very hard and I thought that I wouldn’t be able to do any of the fun things that I loved doing. However, in time, I realised that it was wrong of me to let my dystonia rule my life and I decided that I must take control!
Slowly I began to build up my social life again, began to meet friends for coffee, have meals out with family and friends, go shopping on my own and start to make plans for all the travelling that me and my husband always wanted to do.
Our first big trip was to Australia, we don’t do things by halves! Our trip included a few days in Dubai, 3 weeks in Australia and then a long weekend with our family in South Africa. I was particularly nervous about how I would cope on such long flights. One of the things I find relaxing is knitting and I knew there wouldn’t really be room to knit during the flight and wasn’t even sure if I could take my knitting on board!
First things first though, I needed to make sure I was in a good part of my treatment cycle. I mentioned it to my consultant and of course the dates we wanted to go weren’t in a good part of my cycle and in fact I would have missed an appointment. The consultant I had at the time was such a lovely man he told me he would not let me go on such a special holiday without having my injections and he arranged an extra clinic for 3 weeks before we went!
While making plans and preparing I tried not to worry about how I would cope but made sure I had plenty to keep me occupied during the flights. When it was time to go I was more concerned about forgetting my passport and never even thought about my dystonia. We got on board the first flight and got settled in. The first flight was around 8 hours to Dubai. We each had our own media screen and could choose from lots of movies, tv programmes, books and games. I also had my kindle and a couple of puzzle books, doing puzzles is another way I have of ‘controlling’ my dystonia. So I spent the first flight doing various things to keep busy and I was very surprised that I wasn’t in a lot of pain and my dystonia while it was still there seemed to fade into the background.
We had a lovely few days in Dubai and of course while in the hotel I could do my knitting when we had time between visiting tourist attractions. This helped me relax enough to sleep, I don’t know about anyone else but if I have slept well I can cope with pretty much anything my dystonia throws at me!
The next flight was much longer, all the way to Sydney Australia. However, I followed the same routine as on the previous flight and again found myself feeling quite comfortable. The 3 weeks in Australia went by in a whirl, we visited Sydney where we climbed to the top of Sydney Harbour Bridge, Uluru, Cairns, Daintree rainforest, Barrier Reef and had a week on the idyllic Hamilton Island where we did my favourite holiday activity, kayaking! We loved Australia and especially Hamilton Island.
I had stopped even thinking about how I would manage on a long haul flight and our next flights back to Dubai and then on to South Africa went by without any trouble from the big D at all. Of course we had a wonderful time visiting our family in South Africa but it was only for a few days then time to fly home.
As we had done the journey with Emirates airline we had built up enough loyalty points for our last flight to be upgraded to business class. What a treat! We could lie down to have a sleep, the food was lovely and we got proper cutlery, dishes and glasses, ha ha, such an improvement on economy class. I think because we had more room and were much more comfortable I had no trouble at all with my dystonia but I did think that I would never want to travel economy again!
Our next big trip was a few years later, after saving up again. We decided we would like to go to Fiji. This time we used a travel agent called Trailfinders who were excellent! We arranged to have a few days in Singapore, then go on to Fiji and join a small cruise around the islands and then stop off at Hong Kong on the return journey.
Singapore was lovely, and while my head was still shaking it never caused me a problem and didn’t stop me from trying anything. Singapore is a very clean city and we felt safe all the time.
Fiji was even more beautiful and our cruise was lovely, we visited 5 different little islands and even went to see a school. The children travel to this school each day from a few of the islands and they are aged 5 to 18. They had recently got solar panels so they could have a reliable supply of electricity and they had only 2 or 3 computers to share between all the pupils. It saddened me to see that most of the children had no shoes and their clothes had clearly been passed down through several children, but every one of them was really happy and they all looked well fed and healthy. It made me count my blessings and be grateful for what I have.
Interestingly, our cruise was small with only 60 tourists on board. I saw another 3 people on that same cruise all with symptoms of dystonia! One man had head shakes similar to me, another young lady had tremors in both arms and a 3rd lady had cerebral palsy with some dystonia in her hands. I thought, well isn’t that unusual in a group of 60 unrelated people from all corners of the world that 4 have dystonia. Then my next thought was that maybe having dystonia makes us more adventurous!
Of course we had to have our own adventure and John (husband) went snorkelling with a group to see some small sharks and I went kayaking around the bay we were moored in, such lovely clear blue waters and I could see hundreds of fish and other sea life.
We then moved on to Hong Kong which was interesting but so busy! One thing I noticed was that everywhere was super clean, and in public places people were employed to keep sanitising hand rails, door handles etc etc. At the time this was spring 2019 and I thought well it is lovely and clean but I’m sure that money could be put to better use, little did I know that less than a year later we would all be grateful for those workers who sanitise everything we touch!
The time of covid was hard on us all and of course all travel plans were cancelled. It was such a strange time in the world, during which the planet had some breathing space and recovery from all the damage we humans had caused. I was pleased when it was over of course and couldn’t wait to start travelling again.
Our next big trip was to see our family in South Africa and stay for a month, such a treat to be able to see them all and spend that time together. South Africa is a beautiful country but as you will know it does have its problems. I am not going to go into politics but I can say that the balance between all the people who live there is improving but it still has a way to go.
While there we enjoyed a great week at Marloth Park, a conservation village where you can stay in various holiday lodges and the wild animals come over from Kruger Park and wander through the streets. The more dangerous animals would be sedated and taken back to Kruger Park thankfully but we regularly had Zebras, Giraffes, Warthogs, Kudus and other antelopes all wander through the garden of our lodge.
We finished off the month with a stay at Sun City, totally opposite to Marloth Park but still enjoyable. It is a man made resort with lots of swimming pools, casinos and other entertainment.
Our most recent adventure was earlier this year when we went to Alaska and Canada. I have always wanted to go to Alaska since I used to watch a TV series called Northern Exposure set in a small Alaskan town. In the series everyone was so nice and kind, they all helped each other and were all friends.
The main thing that made me want to go there though was in the opening credits a Moose walked down the main street and I really wanted to see that!
Alaska was everything I thought it would be, friendly, small towns, very remote at times and very mountainous. We hired a motorhome while there and travelled over 1 200 miles in 2 weeks! And yes, I did see a moose with her baby walking in between two houses. We also managed to do our favourite holiday activity and kayaked along a lovely river for a couple of hours during which time a bald eagle flew right past us.
From Alaska we went to Vancouver and over to Vancouver Island which is another beautiful part of the world. Our adventures continued with bear watching and whale watching. We had a truly wonderful holiday.
I have just realised that in this article I have not mentioned my dystonia since Fiji, and that pretty much sums up how I feel about it when I am on holiday. It doesn’t go away, my head shakes and I still get pain in my neck and shoulders but I don’t let it spoil my holiday and I will never let it spoil my sense of adventure!
Gill Ainsley, Vice President and Secretary, Dystonia Europe
