I want to sleep
From the end of November till the first week of December I couldn’t fall asleep once I got downstairs and wanted to continue sleeping in my chair. This usually happened around 4AM, so I really could have used some more sleep. It made me feel hopeless. Every hour I’d wake Hein up because I kept panicking. Or I’d be behind the computer at 4. Our GP prescribed us a different sleeping agent, which I’ve started taking at night. Because of it I’ve started sleeping for six to seven hours a night. The tradeoff is that I keep wanting to go to bed earlier. I keep waking up at 1:30AM feeling short of breath, despite the fact that I’m using an oxygen mask. I’m using more oxygen at night than everbefore.
Urinating was getting more tiresome by the day. I’d often panic at the thought of it. Panic would hit the hardest whenever I’d have to get back in my chair, with my arms still dangling in the stairlift. In those moments, I’d be gasping for air. Within a week, I had made up my mind and got a catheter. All I have to do to urinate now is twisting a valve on a small bag on my leg. It still gives me the feeling of relief it did before, about 7 times a day. I strongly believe in “costs vs. benefits”. Changes have to be made if the current situation is too costly. My helps always dreaded scaling the stairlift on their own. Now though, urination is just a matter of twisting a valve.
On the evening of Saturday, December 29th, 2007, Jeanet passed away, surrounded by family. She had lived with ALS for more than 10 years.
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! Continue reading “Diary January 2007”
It’s finally booked! Destination: Germany, more accurately the lakes region north of Berlin. We have a traveller’s guide to Germany with more than 200 pages of wheelchair-accessible holiday destinations. Kudos to the Germans for being so forward-thinking. Sadly, a large number of the suitable destinations were tiny holiday homes or cramped hotel suites. Eventually, we found two suitable bungalow parks. As always, the kids are coming with us. The brochure advertised a lot of water (meaning a lot of mosquitos). We’re hoping that the surrounding villages will be interesting and cultural. Berlin is closeby, too. Continue reading “Diary February 2007”
On Saturday, March 3rd, my mother turned 81. Last year the was in a much worse place because she couldn’t get used to living in a retirement home. By now, she’s had home care for 6 months. So far she’s found a balance, though it’s still a bit shaky. Indoors, she uses a walker, which she often forgets when she needs to get somewhere in a hurry, like opening the door. She’s pessimistic about her situation, but she’s doing a lot better than she was last year. She’s talking again and got some of her pep back. She has become very hard of hearing, which is alienating in its own right, so she feels a bit isolated. Everytime one of us calls her, the rest of the room can follow the entire conversation too. “This is Hein speaking.” “Who?” “Hein. HEIN.” Every now and then, she makes us laugh when she says something archaic. Today, after we rang her doorbell, she greeted us with a: “Come in, and leave your hats at the door.” Continue reading “Diary March 2007”
Easter without the kids
There are some people who would enjoy a “long weekend without the kids”. Those people are not us. While they probably envision a fun weekend of hiking, cycling, going to see a movie, going out for dinner and generally having a great time, all we have to look forward to is a weekend of hard work. I have to eat, drink, use the bathroom and get put in/taken out of bed. Usually, the kids help to lighten Hein’s workload, but this Easter it was all on Hein. Luckily, Marjanne was there to help us with dinner. I don’t want it to sound like we didn’t do anything, we played bridge, celebrated easter with company and even went to the Garden of Europe on Easter Monday. And, of course, we went to collect Ward from the airport. Continue reading “Diary April 2007”
I didn’t write anything this month. Sometimes, I just can’t get myself to put anything on paper, usually because not enough happened. I spend most of my days lazing around, something I’ve gotten a lot better at over the years. I don’t read much, either. I don’t look forward to holidays and days off, but they usually turn out alright in the end. It’s been nine years since I was diagnosed with and ten years since I got ALS. Sometimes, I think to myself “that’s probably enough”, though I know I’m not supposed to. All it takes is one good idea, like Monieke’s fundraiser, and the thought is banished from my mind again. Planning is my favourite pastime. I have to be careful not to be too controlling. Sadly, Monieke is taking some time off right now, so the project is on a hiatus for now. Continue reading “Diary May 2007”
I had to get my passport renewed, but these days there are even stricter rules for passport photos; no smiling and a head kept straight. We couldn’t go to some department store photo studio, so we had a photographer come to us. I had to pose in front of a grey background, balanced on my headrest. He would edit the picture later to make it seem like a regular picture. The resulting photograph looks rather desolate. Everything about me is crooked; my head, my ears, my mouth. Moreover, my eyes are half-closed. It looks terrible. It’s a good thing I don’t look in too many mirrors anymore. Continue reading “Diary June 2007”
One would think that, with the amount of time I’ve got on my hands, all of my days are perfectly planned out. Not so. The fact that a minimum of two people is required to care for me makes that impossible sometimes. It’s especially obvious whenever Hein is away. Floor told me, in passing, that she would be seeing the new Harry Potter movie at half past six that evening. Immediately, my brain went in overdrive. Because that would mean that she’d be gone after 18:15, meaning I’d need to use the bathroom and have dinner before then. It takes two people to help me into my shower seat or on the commode. Thus, I had dinner at 17:15. The same thing goes for hiking trips. There always has to be at least one person at home to help me in and out of my wheelchair. Continue reading “Diary July 2007”
My packing list
One wheelchair, one comfortable chair, one commode, one shower seat, one patient lift and one motorised rubber boat. We’re taking three cars, two of which are vans. The only thing that absolutely has to be handicap-accessible is my bed, which it isn’t, it’s too low. Besides not having any doorsteps, the cottage was not built with the handicapped in mind. It’s a good thing we can take most of the things I need with us in the van and there’s plenty of space in the cottage. Although, for privacy reasons, our fellow travellers did need to evacuate the cottage whenever I had to use the bathroom, but they did so without any fuss. It became a routine. Hein’s cousin Adriaan drove the van back to Leiden to collect the last few amenities I needed. I couldn’t thank him enough, my hero. Continue reading “Diary August 2007”
I’m eating more carefully than ever, but I still manage to choke on my food often, resulting in hours-long coughing fits. It’s especially terrible when I’ve almost gotten the mucus out of my trachea but it gets stuck. I always feel like I’m burning up when that happens. I usually have someone open the door, remove my blanket, adjust my chair and leave the room before I spent a long time concentrating on getting the mucus out. It happens about once every three days. The worst times were the ones during which I wasn’t at home. It’s happened two times so far, one of them in a supermarket and one of them during my weekly walk on Saturday. I’m developing a fear of being in public because of it. Maybe I should give up eating altogether and fully rely on my PEG. Porridge is the worst offender and usually results in a whole morning spent coughing and heaving. I’ve started eating less and my belly is getting smaller. But eating through a feeding tube feels like such a final nail in the coffin and I’m not ready for that just yet. Continue reading “Diary September 2007”
We’ve had our fair share of domestic helps over the years, from all walks of life. The oldies, the kids who just got out of secondary school and, of course, the huge amounts of students, who were usually bad at communication, cleaning or both. I like to have something to talk about over coffee and biscuits. I’m so fortunate to have my standard domestic helps, but their replacements leave much to be desired. We used to be eligible for a personal domestic budget, but since July 1st, we’ve had to chip in to pay our helps. Continue reading “Diary October 2007”
I have three practical worries; my mucus problems, mobility and the accompanying trouble I have using the bathroom using a patient lift. All three of them are easily solvable, but to me the solutions are worse than the problems themselves. There are suction machines to help me clear my throat, but it only works for some people. Others say it only made their issues worse. Which one is preferable? My mobility problem could be fixed by using a sling lift, in which I’d have to sit in something that looks like a big sack. That doesn’t sound appealing to me either. I hate not standing upright and I don’t even think it’s possible to use a sling lift with only one carer, especially since my neck can’t keep my head upright. As for using the toilet, a lot of ALS patients choose a catheter, but that’s a big step, not taken lightly. Continue reading “Diary November 2007”