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’m able to turn back by myself, albeit paired with a lot of grunting and groaning, but still. I only need help when I’m 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’t make for a good night’s rest. Maybe it’s 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.
From the frying pan into the fire
We’ve had ADSL for two months now. The upstairs computer isn’t 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 “fix everything”, he formatted my PC and reinstalled everything. Despite our expert’s mantra “I’m the boss here”, problems just kept stacking up. None of the parts were “communicating”. One week and 17 hours of work later, the problems seemed to be resolved. Except our upstairs computer still doesn’t have ADSL yet, and won’t until next year.
What’s 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’t live without a computer. My whole schedule was messed up. I was awfully grumpy. I hope the final few problems will be resolved soon.
Pepper the guinea pig
On December 16th our guinea pig died. She was five years and two months old, as old as my erroneous MS diagnosis. She wasn’t 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’t 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’m sleeping in my chair, I she won’t wake me up with her nocturnal bouts of running. Her place in front of the hearth is empty.
Throwing things out
I’m 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’t 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’t 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’t planned, making it less emotionally charged.
I’m neither deaf, nor stupid
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’t having it and, through Inge, I made it clear that I’m 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’m not mentally challenged. He should have known that anyhow, considering my computer usage. What is it with people thinking I’m stupid? I always try to nip it in the bud. I may not be deaf or stupid, but I am blunt.
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’m 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’t totally on board with. Oh well, I don’t have a voice, so I guess I’ll conform.
On Christmas Day, my brother, his two kids and my mother came to visit. After getting up late (except for me, I’m 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’m eating spinach. It’s easier like that. One Boxing Day, Hein’s family had a dinner party. We didn’t go, I find being in large groups difficult. I’m always a spectator. Not to mention the food, all of those courses. No thanks, I’ll pass. The kids painted their rooms, assisted by Hein. Meanwhile, I’m writing this. We spent the evening watching three sickly sweet Christmas films.
More and more often, I’m 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’re putting in, careful to not be doing too much. Of course, it’s a fickle balance. “Whose turn is it to give mom tea?”, and sometimes it leads to squabbles. One solution would be to hire more helps, but that would be a detriment to our privacy. I’ll wait until their school holiday is over before deciding on it.
We don’t 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’s Eve and a three-night snowboarding course for the kids. By day, I’m on my computer a lot, but I’m not answering emails. My correspondents will have to wait. I have written the outline for Ward’s grade 6 musical. I’m looking forward to working on it. All I can do now is hope that Ward’s teacher likes what I’ve come up with.
We’re already four days into the new year. For the first time since my diagnosis, I’ve gone into the new year without crying. I don’t 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’ll 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’ll never get completely used to that.
I wish you a happy and healthy 2003.