Hein and Floor’s skiing trip
It was my birthday present to Hein and, when it was still far away, it seemed like a good idea, but as the date drew nearer, I started to get worried. They were supposed to leave on Thursday afternoon for a long weekend of skiing in La Plagne, to return on Monday morning. I was dreading having to defecate on the commode, bathing and having to sleep in my chair downstairs for four nights. Lieke would fill in for Hein, alternating with my other carers. Once they were actually gone, my worries were gone. Especially when, on Friday, my carer Roeline offered to shower me with Lieke’s help. When she, in the nick of time (the chemist’s closes at six) offered to go get me a laxative, the weekend was looking brighter than ever. Not being worried about my bowel habits in particular really relieved some tension. It’ll make Hein’s free weekends in the future a lot easier. I’m sorry about talking about bowel movements this much, but I’m just glad I managed for a weekend without Hein.
I had enough amusement while Hein and Floor were abroad. Bridge on Friday, where I threw a bit of a tantrum when my friends, who usually bring their own snacks and drinks, decided to let Lieke go to the shops for them. I felt bad for Lieke. On Saturday, I went for a walk, had my father-in-law Kees over and watched the finale of Idol. On Sunday I played Scrabble with Lia and watched series three of 24 with Ward. Before you knew it, our two skiers were back home. It’s too bad they didn’t get that much sun while they were there.
The end
There were certain times in my life that seemed like ends of chapters. I haven’t had that feeling in a while now, I’ve had the same routines for years now. But, suddenly, it seems like two of my remaining routines are coming to an end.
Firstly, being able to sleep in my chair downstairs alone. I do it twice a week, with the backrest tilted backwards and my head resting on my chest. A few times a night, I move my head to give my neck a break. Over the years, my head developed a tendency to bend to the left. It’s gotten to the point where my back does the same. Head are heavy, let me tell you. For the past few nights, I’ve find it impossible to move my head of my own accord. I panicked. I can’t talk or make any noise with my chin on my chest, so I was left to my own devices. I was able to free myself after 15 minutes of wriggling, but I’d positioned myself in a way that would make sleeping impossible. I needed help. My anxiety doesn’t do my sleeping any good either. When Hein was abroad, I discovered that wearing a scarf helps when I’m in my chair. It has to be tied in such a way that my chin is resting on the scarf. It makes it impossible for my head to tilt forward completely so I can lift my head without any help. I’ve had to change the routine, but at least I haven’t lost it completely. I’m afraid it won’t be a permanent solution, however. (At the time of writing, I’ve already given up on it. I couldn’t sleep in my chair anymore, as opposed to my bed, where I can at least get seven hours of decent sleep, provided that I don’t drink anything after 19:30.)
Secondly, and more importantly: I’m losing the ability to stand. It’s most apparent when I try to use the bathroom. I barely manage with the help of my patient lift, which requires very specific instructions to work properly, but without the help of a lift, it’s a struggle for Hein. Our last resort would be buying a passive lift, which doesn’t even require the user to sit anymore. The patient is in a sort of bag, which would require me to change up all of my routines. I’d have to sleep in a bed downstairs, on my own in the sunroom. I probably wouldn’t be able to use the bathroom as often as I do now. It would mean bedlam for my current routines and that freaks me out.
The Cobra Museum of Modern Art
There aren’t too many activities suitable for me, especially when the weather’s bad or when it’s cold outside. Besides that, I’m critical; I don’t want to travel halfway across the country and prefer to only go do things I’ve never done before. I don’t like to visit places that don’t have a disableds bathroom either. The Cobra Museum of Modern Art fit all of my requirements. It’s a bright, logical building. The bathroom was a disaster, way too cramped. By the way, what idiot came up with the idea to put the toilet bowl 20cm from the wall? I didn’t have anything to support my back. My legs gave out and Hein yelled: “can’t you just cooperate for once?” I was upset. I didn’t contribute anything to conversations. In fact, I think I uttered about one sentence. It made me ask myself: Why do people still put up with me? Am I any fun anymore?
Am I any fun anymore?
Having been ill as long as I have, it’s hard not to become at least a bit self-centred. One’s world becomes smaller by the day, despite attempts to keep up with family and friends. My focus is wholly on getting through the day, I’m completely concerned with my own well-being. Typing is tiresome, which further limits the amount of contact I’m able to maintain with the outside world. Reading is fun, but it’s not exactly sociable. Company is great, but not for too long. After a few hours, all I want is to be alone again. No, I don’t think I’m as much fun to be around as I used to be.
51
Another year done. I’m 51. I had a pleasant birthday party, even my mother showed up. A lot of family came by in the afternoon and the following day, I played bridge with my friends. My birthday bouquets make the house looks so cosy.
June 21st: World ALS Day
I want to promote the cycling charity drive that’s taking place on the afternoon of June 21st in Zoetermeer (starting at SnowWorld). There’s a provincial contest for who gets the most people to participate in the drive. The winners get to meet professional cyclist Leontien van Moorsel. My in-laws are already hard at work to make it happen. So come one, come all!