Diary January 2007


Meet and greet

We (my help Marjanne and I) had just paid for our groceries when a strange woman came up to us. It turned out that she reads my diary and caught me on one of my sweets shopping sprees. I was taken aback and asked her if we’d ever met before. We hadn’t. She introduced herself and told me she’d been an avid reader of my website for a long time. By now, I’ve forgotten what her name was, but I’d know her face anywhere. She told me she’d say hi the next time she saw me. This chance encounter made me feel so special. If, at any point, you see me in a supermarket, don’t hesitate to say hi!

Winding down

I’ve been taking 600 mg of Ibuprofen before bed for many years now. I started taking it to reduce the pain in my leg so I could sleep. It also helps against a sore neck. However, during a time when I was nauseous a lot, I found out that Ibuprofen only made things worse; it made me even more queasy. As an experiment, I halved my dose, after which I stopped taking it completely. My leg doesn’t hurt anymore and I’ve stopped feeling sick. Maybe it affected my stomach.
Bolstered by the success of my Ibuprofen experiment, I tried cutting down on my Diazepam (a sleeping pill) intake too. I started taking them because the fasciculations made sleeping difficult. I don’t use a lot (2 mg a night), but it did work. Half an hour after taking it, standing on my two legs becomes much more difficult. My first night sans Diazepam was marvellous, I slept like a log. On night two, on the other hand, I laid awake for hours. The same goes for nights three and four. Thus, I accepted the fact that I’d have to keep using Diazepam before bed. At least then, I fall asleep the moment my head hits the pillow.

Going outside

I haven’t been outdoors in eleven days, despite the fact that the weather is fair. Usually, I go outside on the weekend, but Lieke didn’t feel up to it this week and the weather wasn’t being cooperative either. The sun only shone on work days, but that gave me the difficult choice of going outside, writing emails, reading, planning my holiday or cleaning the house. Usually, going outside is dead last, unless I have business elsewhere. I don’t mind being inside, but spending eleven days indoors is a bit ridiculous. The time I have with my carers is precious, as they’re the ones that are supposed to take a load of my family’s back. Going for walks is not exactly a high priority in the grand scheme of things.


We’ve only had professional help during the weekends for two years now. Weekend used to be a chore, what with the constant bickering about who was supposed to feed and hydrate me. 16:00 till 19:00 are the busiest hours of the day in a standard weekend; fruit, tea, bathroom visits and usually a walk in the park. For the past two years, Marjanne has taken up most of these chores, I usually have my walk beforehand. That was, I was completely take care of on Saturdays. We didn’t use to have any help on Sundays. They’re usually reserved for day trips, but the moment we got home, the stress would set in again. It only increased as time progressed. We went out less, the kids had their own plans, we’d run out of new things to do and my condition stagnated. What started as an occasional thing became structural, so now Marjanne is with us every Sunday too. The family is always ecstatic whenever Marjanne gets here. Finally, no more choring and whining. Weekends have become a lot more harmonious as a result.

Day trips are the only times when I get restless because I want to be home on time. The other day, we went to Rotterdam for an exposition about Henri More. We departed too late. Rotterdam is a long way from home, so we only had an hour to look at all of the statues before it was time to go. When we got back home, we couldn’t even have a drink with our friends and reminisce about the day, because we were making Marjanne wait. So, we haven’t exactly killed the stress, but right now it only manifests whenever we decide to go somewhere.