At the August meeting of the support group, member, Adrienne Burleigh described how she faced down being a scleroderma sufferer and became instead a defiant traveller, determined to see get to the other side of the world, have a holiday and return home. Read about her experience and you’ll see that she triumphed.
Often we, as people with scleroderma and related conditions, limit ourselves in what we can do. Sometimes our own beliefs place limitations upon us and at other times, it’s our friends and family who do if what we intend to do is a little challenging. Even health professionals will express doubt about what we might be thinking of doing. This is all legitimate given the nasty nature of scleroderma but at times it is really good to challenge ourselves, friends and family and our medical care-givers – after all it is our own life and we get only the one chance to live it. So what can we do?
Earlier this year I set off on a 10 week trip to England and Western Europe. I travelled by myself for 50% of the time and for the rest was with a friend as we went to our own friends either together or separately. I had a full 23kg suitcase and a backpack that often contained a further 7kg so at all times was fairly loaded. In my family we have always had a saying – those who go travelling, carry their own suitcases and this I had to do. I did it, but there were a number of precautions I took – not the least being carrying a walking stick, which attracted support when I needed to lift my gear on and off trains and stagger up staircases where there was not a lift available. Often, very helpful people, many much younger and fitter than me, made my day with the smiling assistance they gave me.
I have often heard people who have scleroderma say they could not travel because they would not be able to get insurance. However, I found that I could by booking and paying for my tickets through my National Bank Gold Card, To ensure I was covered for systemic sclerosis, I needed to declare this and to pay $100.00 as cover. This was so much less that going through the standard insurance companies and was also a very painless process. I took part in a short telephone interview covering who I was, what I had, if I had had any unplanned hospitalisation because of the condition over the past two years, etc. I was then told I would be covered and was given a claims number to use if I needed it. I had cover for 90 days but the bank will reduce that to 40 days from September 1 this year as part of a tightening up of insurance. However, it is still an excellent cover, valid anywhere in the world and includes general travel cover, such as lost luggage etc, as well as health.
On the trip I ensured that I took all the medications I needed with me for the duration of the trip and for two extra weeks, in case of delays in returning home. I also carried a full list from my pharmacist of the medications and dosage I am currently on.
I also crried a letter from my GP outlining my medical conditions and giving contact details so that if I had need of medical help, my medicals details and the treatment I have been receiving would be immediately available. Beside phone numbers, I was given email addresses in the event I needed assistance out of NZ office hours.
I ensured that I had all the tests I needed before I left (both hospital and GP surgery based) and that these gave no
cause for concern. With my GP I discussed possible health issues I might face while away such as lung problems brought on by infections I could catch while on the plane and how I should deal with these before I needed to get further professional attention. I carried antibiotics for such an emergency. This proved very helpful in my case as after several drenchings in the almost constant rain I experienced throughout the trip, I was able to deal with the wracking cough I managed to develop.
I was meticulous about taking all the medication I had been prescribed at the correct times and in the correct dose.and I kept warm and where possible dry. I had hoped for good weather, it did not happen and although I needed to buy some warmer cloths and some thermals, I was glad I did as this helped keep me healthy.
I got plenty of sleep. You can manage great things if you have had plenty of shut-eye although there were some days when I did not feel like pushing myself regardless of what had been planned so I said NO and meant both the N and the O. This ensured I was able to recover energy quickly and go on with the programme in good health.
It was a great trip, encompassing England, France, The Netherlands, Belgium and Hong Kong. and I proved to myself, my family and friends and my medical support people that it was all possible.
Go ahead and challenge yourself. You will be surprised what you can achieve if you have done all your homework beforehand. You will be able to walk on water (because you will know where the stepping stones are!!)