Swinging off a bus handle, hot sun burning on my arms, Italian women chattering loudly returning from shopping and hair-raising, hair-pin bends in the road that throw me off balance every time – my happiness! (This was travelling to Positano, Italy, where the heavens opened when my daughter and I arrived, but hey, it was fun!).
The thing about public transport in another country is that it really makes going on holiday seem a bit more of an adventure. How do the locals really live and how is it that they all seem so much happier than we do on the 27 to Truro that I catch once in a blue moon?
The thing is, if you always do the same thing and if that same thing happens to be sitting tethered to a haemodialysis machine for hours at a time, well, life can get a bit flat, predictable and sometimes a little depressing. I reckon it does everyone the world of good to feel their eyes turn into saucers every so often, to be surprised by the unusual, to have your pulse racing and your whole system on alert! The challenge of language, map reading, bus timetables and an exciting destination, all while bathed in warm sunshine and no work pressures, is a liberating one.
And it feels normal. By that I mean I can actually forget that I have any health issues, I’m just being me.
Having been on dialysis for 11 years, nearly 12, and with no prospect of a kidney transplant any time soon (100 per cent antibodies – the stubborn ones that no amount of plasmapheresis will shift) it would be easy for life to get me down from time to time. And if I’m honest, it does.
However, if I can get away, just for a week to a sunny European destination where I can relax by a pool, swim in the sea, visit countless churches, climb mountains, traipse around ruins and eat good food, well, that does me more good than any therapy or medication ever does.
A good holiday can be pretty expensive. I’d like to go every year and if I can scrape together enough pennies, I do – it’s usually once every two years, with the help of a grant from Kidney Care UK. I save up my spending money, plan an itinerary (on an Excel spreadsheet – I kid ye not!) and the planning and anticipation gives me almost as much joy as being away.
With Brexit looming, I am really worried about what is going to happen to the EHIC card. It works brilliantly, I get the cost of my dialysis covered in Europe, everyone understands how it works and it means I don’t have to pay out over £1,000 a week to stay alive. If I had to pay for my treatment then:
- I probably would only go away once every five years.
- The cost and anxiety over organising dialysis would overshadow the joy of the trip.
- I would get depressed pretty quickly. We all need something positive to look forward to.
When I had a working transplant, I travelled all over the place, not just European destinations but backpacking in India, Egypt, Vietnam, Thailand, Malaysia, Indonesia and other amazing destinations. I absolutely loved the thrill, the people, the food and the adventure. That simply isn’t do-able as a dialysis patient and I feel a bit trapped.
Gone are the spontaneous trips to see a world’s wonder – even booking a UK trip has to be planned with dialysis at another unit. My saving grace has always been that, with a little help, I know as an EU citizen I have an EHIC card and my dialysis healthcare is covered and I can plan the odd week away and properly rejuvenate myself.
It’s about hanging on to a good quality of life, about being able to feel good, to feel happy and getting that strength to work through dialysis and the problems it throws up, cope with the tiredness and anxiety that sometimes comes out of left field and being able to stay productive. Take away that strength and I know I’d be costing the NHS much more!
I worked full time on dialysis for ten years, but it took its toll and I had to reduce my hours to three days a week. I couldn’t afford my mortgage on the shorter hours. I looked into housing benefit but only the interest on the mortgage would be paid. I had a repayment mortgage as I couldn’t get an interest-only mortgage – I couldn’t get life insurance. Having looked carefully at all my options, I had to sell my home. I still work, I rent a lovely place with a spare room for haemodialysis at home, but it has been a tough few years.
But, if I can go away on holiday periodically, then I’m good – I can cope with it all and I can live a life that is all the happier for it. To the powers that be, please don’t take away my EHIC card."
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