Marie was named Carer of the Year at the MS Society Awards 2018. She tells us about taking a special trip with her husband Stuart, who has MS.
2018 marks our 20th wedding anniversary - where did the years go? We thought we’d celebrate with a trip to Norway, a cruise to see the midnight sun.
But, as anyone supporting someone with significant needs knows, going on holiday isn’t as simple as that. I sometimes think other people have no idea what living with a long-term condition is about. The expectation is that you stay at home, do little, watch TV and certainly do not work. If I’d had a pound for every time someone said “Oh, Stuart still works?” we could have paid for our trip from the gains.
Planning a trip with MS in mind
Holidaying takes the 5 Ps: planning, persistence, partnership, prioritising and positivity. You need to research and pick the right destination, hotel, flights, bags, equipment, meds, catheters…the list seems endless. Eventually, we found the right trip.
As Stuart’s MS is not as good now, we decided not to arrange excursions. There would be too many variables out of our control. Instead, we’d enjoy a walk around the ports and the ship.
But on day one, our best laid plans went west.
Wheelchairs at airports
The airport staff at Heathrow had to try to dismantle Stuart’s wheelchair, as the aircraft door was too small. Two planes and three airports later, we arrived in Norway with a working electric chair in one piece.
The excitement quickly faded when we found there was no wheelchair-accessible transport and the bus had already left. The airport staff arranged a taxi, but one by one they also started to leave.
We were on our own in north Norway, miles from anywhere, speaking no Norwegian, with telephone numbers that didn’t work. At that point, Cornwall seemed a better bet!
A good Samaritan
In all the messing about we dropped our wallet with all our travel documents, including passports, but didn’t notice until much later. But we met an angel in disguise, a good Samaritan. Kjetil the taxi driver spent time enquiring for us, driving back to the airport for the wallet, expecting nothing in return. He was our life saver that night.
Living with Stu and MS
Two days into the holiday and we were having a relaxing time. OK, Stu needed more support and help to transfer and dress, so our routine was different.
But we just took our time, put one foot in front of the other and got on – it’s what we do.
I was asked once about my life. My reply was simple: ‘Living with Stu and MS was far more fulfilling than life without either.’