Cote d’Azur
Most people I talked to were skeptical of my planned trip to the French Riviera. “Honey, are you sure it’s a good idea to go there? Think of the heat!” my mother told me. Email correspondents told me I didn’t know what I was getting into, and even Marjolein suggested we spend our holiday at home. The thing I dreaded was the journey itself, not the destination; a wooded little hamlet by the Mediterranean Sea. A convenient article published in the newspapers three days before departure alleviated some of my friends’ worries about my holiday. It said that the Riviera had plenty of Dutch speaking specialists who would be able to help me, would the need arise. I was able to leave with even fewer worries.
The journey
We left at 10:30, which was too late, even though we planned to stay at a hotel at the halfway point in Chalon-sur-Saône. We had booked an adapted room with a swimming pool. We were expecting – too optimistically – to arrive at our hotel in Chalon-sur-Saône around 8, but because of bad traffic, 8 became 11. Our second day of driving started as comfortably cloudy as the first day had been and ended with a sunny but cooling mistral. We brought a spray bottle of cool water with us in case of extreme heat. On our outward journey we treated it as a bit of a joke, but on the return journey we emptied the thing in just four hours, because it was boiling hot. Luckily, almost every French truck stop has a cooling station. Also: disableds toilets everywhere! All in all, the journey was a breeze.
Eating and drinking
Another point of worry on holiday was eating and drinking, specifically on the road. Thus, we made an appointment with a nutritionist from the Academic Medical Centre, who told us to start feeding me through my PEG immediately. We didn’t. Whatever, I’m still good at eating salads. So, packed with a mix of potato and tuna salad, we went on our way. It works very well. I brought my own food to restaurants. The feeding tube is good for drinking water though. When it’s sweltering, only large amounts of water can make me cool down. I regularly asked Hein to “water me”. It really is vegetable jargon, but it gets the point across.
Assistance services
Our final destination was a camping ground which had 8 wheelchair-accessible caravans among many others, plus the possibility of assistance services. We were allowed to use two large disableds’ bathrooms, packed to the brim with differently sized shower seats, a beach wheelchair and adjustable beds. My potential assistants were a former nurse and barman, who were ready to help me at all times. I enjoyed camping again, something we haven’t done in two years. We lived outside and saw a bit of everything roll by. We were roadside by a very busy highway so there was no shortage of different things to look at. The kids could swim in the sea whenever they pleased, while we could relax in the shade to our hearts’ content. We were joined by my mother-in-law Lia, sister-in-law Lieke and nephew Tim. They’re points of contention for me and a huge help for Hein. We were a stone’s throw away from Port Grimaud, a smaller Venice. We visited Monaco, gawping at te huge yachts moored at Saint Tropez. We lost ourselves in picturesque villages in the hinterland. It wasn’t even that hot. In summation: a great holiday.
PC battles
It’s still summer break and the kids are home. It means that every day is a battle over who can use the PC. Goodbye, morning tranquility and trusty hours on the computer. Hello, loud racing game noises and discussions about the adventures of The Sims (a family and house building game). I have to indicate when I want to use the computer way in advance. The kids have become my de facto computer time schedulers. We’re a family of master negotiators. For the next three weeks, at least.
Neck
My neck isn’t that sturdy. My head tends to roll backwards and sometimes it’s difficult to get it back upright again. When that happens, Ward and Floor step in and to it for me. That’s why I prefer chairs with higher backrests. The same thing happens in bed, where I roll over but my head gets stuck. It’s shocking how many photographs feature me with a drooping head. I saw these issues coming for months in advance. Time to make a change. We swapped the electric wheelchair for a normal one with a high backrest, which even has a mode that prevents my head from toppling. We also put in a request for a neck brace, for when lifting my head is too hard on my neck.
Overzealous
Eating has been easier lately. I was eating sandwiches with normal toppings like cheese. Thus, when my mother told me she had a bit of goulash and rice left over, I told her I’d love to have some, non-pureed. Bad move. My tongue was covered in grains of rice, which I couldn’t get off by myself. Drinking lots of water finally did the trick. It caused a bit of a panic, both for me and my dinner companions. I know my place again.