At night, my legs hurt and seize up. When they do, I have to stretch and turn, which I do on my own accord. Usually I\u2019m able to turn back by myself, albeit paired with a lot of grunting and groaning, but still. I only need help when I\u2019m flat on my back, which is when I ask Hein. Whenever I do, he turns me on my side. That happens two to three times a night. But the past few nights it happened five or six times, which doesn\u2019t make for a good night\u2019s rest. Maybe it\u2019s because it was freezing. My legs spasm more easily in the cold. Sometimes it gets so bad that I need to get out of bed in panic. I spend the rest of the night in my chair. I stay upright using my legs, making them very sore the day after. The chair is not a great solution. Hein is becoming desperate. So am I. <\/p>\n
We\u2019ve had ADSL for two months now. The upstairs computer isn\u2019t connected yet, meaning the kids have to chat downstairs, meaning it was time to connect the upstairs computer too. On Saturday, December 7th, a specialist paid us a visit. In the morning we had two working PCs, but by the evening both of them were dismantled and the specialist took one of them with him for some tuning. Nothing about my PC was working. After failing to install software that would \u201cfix everything\u201d, he formatted my PC and reinstalled everything. Despite our expert\u2019s mantra \u201cI\u2019m the boss here\u201d, problems just kept stacking up. None of the parts were \u201ccommunicating\u201d. One week and 17 hours of work later, the problems seemed to be resolved. Except our upstairs computer still doesn\u2019t have ADSL yet, and won\u2019t until next year. <\/p>\n
What\u2019s a week like without my PC? Awful. Despite me often complaining about getting tired of using my PC, it made me appreciate how important it is to me again. I was just sitting around, getting increasingly more agitated every time I got the wrong impression about it being fixed again. I had to spell out my final few Sinterklaas poems to Ward, word by word. I can\u2019t live without a computer. My whole schedule was messed up. I was awfully grumpy. I hope the final few problems will be resolved soon. <\/p>\n
On December 16th our guinea pig died. She was five years and two months old, as old as my erroneous MS diagnosis. She wasn\u2019t eating her new food, no longer reacted to an opening fridge and the things she did eat, she rarely finished. When I saw her sleeping in an odd spot, I feared the worst. Floor couldn\u2019t stand to look. Eventually, Ward made the diagnosis. Despite the fact that we should have paid more attention to her than we did, her death came as a shock. Next weekend, when Hein is in Berlin and I\u2019m sleeping in my chair, I she won\u2019t wake me up with her nocturnal bouts of running. Her place in front of the hearth is empty.<\/p>\n
I\u2019m not much of a hoarder, I throw out things I no longer need with relative ease. And yet, my closets are bursting at the seams with unused skirts, trousers, jackets, pullovers, blouses and shoes. I didn\u2019t have the heart to throw them away. This month, Hein helped me out. He put all of my clothes in front of me. It was up to me to decide which ones to keep. I hadn\u2019t worn most of them for 4 to 5 years. My earlier life flashed before my eyes. Trousers and pullovers were easy enough to toss. Strangely, I found throwing away skirts and jackets to be much harder, the symbols of my working life. Eventually, I kept 1 or 2 of each, as mementos. We threw out four garbage bags worth of clothing. Did it hurt? Not that much. That may be because this day of cleaning wasn\u2019t planned, making it less emotionally charged. <\/p>\n
The other day, a man came to fix my chair. Supposedly someone who knows what my disease entails. Despite that, he still managed to speak to me in loud, clear and very simple language. He spoke normally when chatting with Inge. I wasn\u2019t having it and, through Inge, I made it clear that I\u2019m neither deaf, nor stupid. It was highly uncomfortable. I thought the whole thing was terribly unprofessional. Our computer expert did the same, asking Floor if she was keeping up. It felt even worse with Floor involved and again, I told him I\u2019m not mentally challenged. He should have known that anyhow, considering my computer usage. What is it with people thinking I\u2019m stupid? I always try to nip it in the bud. I may not be deaf or stupid, but I am blunt. <\/p>\n
Because of my PC troubles, my holiday spirit was fairly belated. While the kids were decorating the Christmas tree, the computer expert was ironing out the final few kinks. But I\u2019m very pleased with how Christmassy everything looks. Lieke completed the picture by putting our outside Christmas tree up, including the little red apples and lights. On Christmas Eve, we had dinner with friends and played Blackjack, with the kids deciding upon the prize pool, which I wasn\u2019t totally on board with. Oh well, I don\u2019t have a voice, so I guess I\u2019ll conform. <\/p>\n
On Christmas Day, my brother, his two kids and my mother came to visit. After getting up late (except for me, I\u2019m always up early), we spent the entire afternoon preparing for gourmetting [a Dutch tradition, every dinner guest gets to prepare their own meat\/vegetables in a small pan, heated on a small stove set on the dinner table. -Ed], shifting and setting the table, decorating it with a tablecloth and red ribbons, making sauce and preparing the meat. Floor was my arms and my legs. I felt involved. While the family is gourmetting, I\u2019m eating spinach. It\u2019s easier like that. One Boxing Day, Hein\u2019s family had a dinner party. We didn\u2019t go, I find being in large groups difficult. I\u2019m always a spectator. Not to mention the food, all of those courses. No thanks, I\u2019ll pass. The kids painted their rooms, assisted by Hein. Meanwhile, I\u2019m writing this. We spent the evening watching three sickly sweet Christmas films. <\/p>\n
More and more often, I\u2019m at the centre of household controversy, especially during holidays spent at home. Despite the fact that Astrid is around three days a week to feed me breakfast and lunch, there are plenty of afternoons, days and weekends where my family has to feed and water me. The kids keep a close eye on how much work they\u2019re putting in, careful to not be doing too much. Of course, it\u2019s a fickle balance. \u201cWhose turn is it to give mom tea?\u201d, and sometimes it leads to squabbles. One solution would be to hire more helps, but that would be a detriment to our privacy. I\u2019ll wait until their school holiday is over before deciding on it. <\/p>\n
We don\u2019t have much planned in the way of daytime activities this holiday. We do, however, have a lavish evening programme: dinner parties, Holiday on Ice, an orchestra concert, New Year\u2019s Eve and a three-night snowboarding course for the kids. By day, I\u2019m on my computer a lot, but I\u2019m not answering emails. My correspondents will have to wait. I have written the outline for Ward\u2019s grade 6 musical. I\u2019m looking forward to working on it. All I can do now is hope that Ward\u2019s teacher likes what I\u2019ve come up with. <\/p>\n
We\u2019re already four days into the new year. For the first time since my diagnosis, I\u2019ve gone into the new year without crying. I don\u2019t feel like getting too retrospective. The new year is going to be laden with changes. Inge will be leaving us on February 1st. The same goes for our neighbour. We\u2019ll have to leave our comfort zone and look for a new help, maybe even more than before. This illness requires me to change constantly. I\u2019ll never get completely used to that.<\/p>\n
I wish you a happy and healthy 2003. <\/p>\n","protected":false},"excerpt":{"rendered":"
Restless nights At night, my legs hurt and seize up. When they do, I have to stretch and turn, which I do on my own accord. Usually I\u2019m able to turn back by myself, albeit paired with a lot of grunting and groaning, but still. I only need help when I\u2019m flat on my back, … <\/p>\n