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.

Weekend

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.

Het bericht Diary January 2007 verscheen eerst op Living with ALS.

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.

What I’ve noticed while I was looking for handicap accessible destinations is that France has the most of them. All of them seem to be owned by Dutch people who moved to France. England is the only place where the holiday homes are actually owned by English people. Every village in the UK has at least one handicap bathroom. They’re ahead of the curve, while France is a disaster on that front. But oh well, France is still the most popular holiday destination for the Dutch, so by January everything was already taken.

Darkroom

It is said that there isn’t a concrete cause of ALS, but that it may have something to do with toxic substances. While my brother and I were reminiscing, the subject of our old basement came up. It was a large room with no windows and a lot of colourful lighting, perfect for house parties. It was where I’d set up my darkroom (for developing photographs). I spent night after night down there, poring over the containers of developer. There was no ventilation to speak of down there. My brother insinuated my time spent there may have been the cause of my illness. I’d never thought about it that way. It isn’t. Still, it’s something to think about.

Floor the carer

My carer Brenda has gone on holiday to Canada for four weeks, leaving a gap of four Mondays and four Tuesday mornings in our planning. Luckily, we found suitable replacements for most days, with Floor covering the remaining ones. Last Monday was Floor’s first day as a carer. I was worried and anticipated some discrepancies between her plans and my schedule. The truth was the complete opposite. Because of the fact that she’d celebrated Carnival the day prior, I was expecting her to sleep in, but to my surprise, she was up and ready by 9 the following morning, asking me to walk her through whatever I needed her to do. Her whole day was about me. “What do you want to do next?” and “What should I do next?” were the two questions that dictated the day. I was surprised but very glad to hear she was excited for more days like this one.

Readjust

My neck always tilts to the right, which is why, every now and then, I need to reposition myself to keep my balance. It takes a lot of effort for me to move my head, and the corresponding groaning and the fact that my eyes roll back in my head makes it a bit confusing for people around me. Oftentimes, people get the wrong message and think I like my head tilted to the right, while that’s the exact thing I’m trying to avoid. Others think there’s something above them. After all, I’m looking up. Everyone starts looking up and guessing what I’m looking at. It’s difficult for me to explain that all I’m doing is readjusting my head. Getting complicated ideas across with looks alone is very difficult. Most people just stare at me, nonplussed.

Hot

The night is too hot for me by about eight to ten degrees. What difference just four degrees would make. Because of the fact that we’re experiencing a lot of wind right now, we can’t open up the windows. As the night progresses, our bedroom gets hotter and hotter. I look in envy as Hein shrugs off his blanket, wishing I could do the same. I get restless, which only makes things worse. Maybe it’s because I’m in menopause. It doesn’t manifest as hot flashes, but as a general increase in body temperature. It makes my nights feel like I’m in an oven.

Helpers

Ward went skiing during his winter break. I missed my TV buddy/chocolate feeder. Floor was home a bit more to compensate, so I’m not complaining. It’s going to be a busy year. Ward will be going to Barcelona and Rome and also has a cycling holiday planned with Hein. Floor will be going to Mexico and has a lot of small outings planned. Not to mention Floor’s plans to move into student housing. That’s going to take some getting used to. The kids do the most minute but meaningful tasks for me: feeding me chocolates, wiping my mouth with a napkin, giving me my meds, brushing my teeth and adjusting my backrest.

Het bericht Diary February 2007 verscheen eerst op Living with ALS.

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.”

Helpers (2)

I’ve always had a self-imposed rule about posting things to the internet immediately after writing them. I always need some time to think it over before I publish it. Last week, I broke that rule when I posted “Helpers”. Everything I wrote was truthful, but it wasn’t the whole story and it made me look like I see my children as nothing more than instruments. My kids are much more to me than that. They are the ones who keep things interesting when Hein and I decide to stay home. Our newest running joke is, whenever Ward says “I love you” (in Dutch) to Hein, Hein responds with an “I love you” (English in a terrible Dutch accent). All I can do is blink at him as lovingly as I can. Floor did the same last year, but that joke got old fast. I hope this one lasts a little longer.

Clock

I’ve slept with a clock close to my face for the past few nights, because I never knew what time it was when I woke up, which is annoying when you wake up multiple times a night. I never quite know how much sleep I have left. I used to base it on the church bells, but those have gone silent lately. Maybe it’s because we don’t open our windows wide enough. Because of the seasons, the light isn’t such a great way to tell the time either. I always wake Hein up too early, so I hope this clock can fix that.

Hein and Floor abroad

Last weekend, Floor and Hein went on a skiing holiday for four nights, departing by bus. I wasn’t looking forward to it at all. I would have to spend four nights sleeping in my chair. These days, my neck hurts even when I’ve slept in my down bed, imagine what sleeping in a chair would do to me. I didn’t wake up to readjust my head on the first two nights, so my neck ached a lot. The two following nights were better. I felt rested and did a lot during that weekend. My sister-in-law Lieke filled in for Hein and did splendidly. I was worried about the showering part, but that went swimmingly too. On Monday, Hein and Floor were back home, tanned from their three days of skiing. By then, the house had been repainted and the leakages had been fixed so Hein could start refurbishing the rooms immediately. Next time, we’ll try putting a bed downstairs.

Standing up

My ability to stand has only gotten worse, if one of my knees as much as bends a little bit, I tumble down. It goes well when I’m able to keep my legs straight. Hein doesn’t use the lift when he’s helping me use the toilet. To get my trousers down he often kneels down, taking me with him. It’s a challenge to keep me on my feet. Even when we do use the lift, it’s hard. I’m trying to find a better way to handle the lift. Brenda, who came back from Canada feeling refreshed, had a brilliant idea. Whenever I’m seated on the toilet, I should rest my arms on the lift straps. That prevents me from falling over backwards and keeps my on my feet. It was a great success when my other carers tried it too. I’m saved, at least for a little while.

52

I turned 52 on March 31st. We didn’t have much time to celebrate, because Floor was supposed to leave for Mexico at 8 in the morning. That’s why, the evening prior, we had dinner with the family. I had to eat my own food before we actually had dinner. Marianne came by at 16:30, meaning we entertained guests from 1 till 16:30. Despite the abrupt cutoff, we had a lovely time.

To Mexico

I wasn’t overly pleased when Floor told us she’d like to visit Mexico. As long as I don’t respond, I thought, it’ll just blow over. It didn’t. It’s a pretty logical desire for someone whose best friend is spending a semester studying in Mexico. I’m such a worrywort I actually emailed Floor’s friend’s parents, who had been to Mexico in the past two months. They were able to put my fears to bed. A week before Floor left, they came over to talk to us about the trip. I’m satisfied, but her grandmother is still losing sleep over it.

I’m lacking as a mother. I didn’t bother telling her what to pack, although I did remind her to finish an essay she was supposed to hand in before she left. Floor is used to packing her own bags, she’s been doing it for eight years now. The thing I really don’t like is how we couldn’t bring her to the airport ourselves. It’s impossible for me to get up in the middle of the night to drive to Schiphol Airport, so Roel dropped her off. By now, we’ve called each other a few times and everything is alright thus far.

Tonight, Ward will be heading to Barcelona with his football team. He packed his own stuff too and went to meet with his team without us. But on Monday, we’ll be waiting for him at the airport, and the same goes for the Monday after that.

Het bericht Diary March 2007 verscheen eerst op Living with ALS.

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.

Garden of Europe

Besides going to Ikea, visiting the Garden of Europe is probably the most bourgeois trip imaginable. Nonetheless, I think everyone should experience it at least once. The last time I went there was 12 years ago with my mother, but Hein had never been before. The Garden of Europe is a beautiful park and a true Eldorado for people in wheelchairs, broad asphalted paths without as much as a bump in sight. I’m not much of a tulip fan, I prefer bushes and shrubs. Things that at least look self-sufficient. The Garden has beautiful trees, too.
The most surprising part of our visit was something that didn’t even have anything to do with gardening; a fashion show for hats, designed with the theme of ‘royalty’. We were right at the end of the catwalk, so every model stared right at us when they did their walk. Here are a few hats we saw there. I was cheeky enough to just ask the photographer present if she could email some pictures to us. She has her own website: www.pilipipa.nl. Thank you.

Summer

It was only April 15th, but it already felt like summer. The Rotterdam marathon was cancelled halfway through because of the heat. I slept in my chair last night, feeling sick, weak and nauseous besides feeling like I’m about to melt. I’m sitting in my chair like a sack of potatoes. By five, I finally started to come back to life a little bit. Too bad the following night was as hot as ever. I glowed. There was only one thing on my mind: I’m not looking forward to the summer. I’ve put it out of my mind for now.

I was dreading the sweltering days they’d predicted for the end of the month, but, looking back, they weren’t so bad. The wind was cooling and the nights were bearable. The only thing I don’t like now are the days off. Everyone is off to do their own thing. I spend those long weekends, in which others go cycling, hiking, play tennis and going out for drinks, inside. I did sit in the sunroom a lot.

LEGO sorting nights

After the charity cycling event last year, my sister-in-law Monieke came up with another idea to raise money for ALS: a LEGO sorting night. A friend of hers is a LEGO dealer and has a house full of unsorted LEGO bricks. Once a month, Monieke organises a sorting night, on which people can sort bricks for five euros an hour, the proceeds of which go to ALS research. I was excited, if a bit doubtful of the amount of buzz it would generate. Besides simply raising money, it’s about raising awareness for ALS, something Monieke has gotten pretty good at. By now, there have been three sorting nights, all of which have had a sponsor who doubled the proceeds. They’ve earned 580 euros thus far. That’s about one-third of what the cycling event brought to the table. That’s not all. Monieke has big plans: she wants to organise a fundraiser using the sorting money. It’s supposed to take place on the 16th of November. All of the proceeds will go to the ALS foundation.

Hip pain

I sleep on my right, which means my right arm and leg need to be properly supported by my mattress. My left arm and leg don’t have the same support, which leads to some strain on my left shoulder and hip. As my muscle mass diminishes, it’s becoming harder and harder on my body. I’ve been using two pillows to support my left arm for a while now, but until recently, my leg was fine without any supports. For the past two weeks, however, it’s been awful. My hip starts to hurt and I spend the night writhing. I haven’t had much good sleep since and standing up only makes the pain in my hip worse. Maybe I’ll try using a pillow for my leg too, but I’m scared that would render me completely unable to move. Another option would be to start using Ibuprofen again.

Floor in dorms

On Saturday, April 28th, Floor moved into student housing a room on the third floor so I’ll never see it in person, only on photos. Fortunately, she’ll be home on Wednesday and Saturday, which made the change a whole lot less abrupt. In the future, she says she’ll spend the weekends back home. It’s going to take a while before I’m used to it.

Swan attack!

Boating season is here again. Our rubber boat was moored in the harbour, but someone punctured it on the first day, so in the meantime, Ward is using his friend’s boat. They were just cruising around when, out of nowhere, a swan, already looking quite aggressive, came at them. They tried moving past it as slowly and as quietly as they could, but before you knew it, the swan came flying at them like it was a commercial for an airliner. Ward’s friend Lex hit the floor of his boat, his hands covering his head, while Ward jumped overboard and swam to the side. Lex got hit by one of the swan’s wings while Ward pulled himself on the shore. Apparently, the swan was still mad from being hit by another boat earlier. The next day, it turned out that Ward had a bacterial infection in his arm. He spent the rest of spring break inside, wearing long sleeves.

Het bericht Diary April 2007 verscheen eerst op Living with ALS.

My chair has finally been fixed. My carers spend weeks dragging me around in a wheelchair with one busted wheel. Initially, I would have to part with my chair for a week so it could be repaired, but after a lot of convincing, they sent a repairman to our house to fix it. It took about ten minutes. Huzzah. One of my carers got the dust out of my PC, which had started making a lot of noise. She used a vacuum cleaner and a fan.

I love my garden. During afternoons, I like to sit in my sunroom and check up on my plants, seeing which ones are in bloom that day. I like to be in control of my garden, although Hein tends to make changes without consulting me. It’s a struggle for me to give the reins to someone else every now and then.

Het bericht Diary May 2007 verscheen eerst op Living with ALS.

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.

Sleeping with a pillow

Multiple people have told me to try sleeping with a pillow between my legs to relieve the strain on my hip. Apparently, it’s a tried and proven method for people who’ve had hip surgery, as well as old folks. It just so happened that my leg was becoming more and more painful, not just my hip, but my knee and my lower leg too. Thus, I started sleeping with a pillow. Every night, the pain became a little less intense until it disappeared completely. It did have one drawback: I couldn’t move my legs, which meant I was having trouble moving my head too, because somehow it seems that my head and legs have a strange connection. Everytime I move my head, my legs move along involuntarily. Having an unmovable head is difficult for me because it prevents me from swallowing. Around five in the morning I was practically drooling because I couldn’t reposition my head. I panicked, so I had to be put in my chair downstairs. Not a fun thing to wake up for Hein. I’ll try alternating for now, some nights with a pillow and some nights without.

Reading

I’ve started reading again, right now I’m in the middle of Lucifer, by Connie Palmen. Usually, I’m fairly quick to skip less meaningful lines in books, but every sentence Palmen wrote seems important, so I can’t skip anything. I liked the book, even though its ending didn’t really grab me like it should have. I immediately started skipping lines again. The whole book is full of Palmen’s personal philosophies. For example, she believes that stories have only really happened if they’re relayed to others. The written or spoken word, according to her, is what give stories colour, personality and nuance. She even claims that people haven’t really lived until they tell others about their lives. It made me think. My writing is proof that I’m still here. If I didn’t, my existence would probably be a lot more passive.

By now, I’ve started reading Boven is alles stil [“It’s all quiet upstairs.” -Ed.] by Gerbrand Bakker, which couldn’t be more different to Palmen’s book. No real personal philosophies to speak of, just a series of realistic descriptions of everyday life and its inherent loneliness. I highly recommend it.

Patient lift

Six years ago, I got my first patient lift. I tried out two different models, one hoist which allowed me to stand up and one with a sling. I hated the second one and immediately pledged to not get a sling lift until it was absolutely necessary. As a result, Hein has to be present anytime the lift is used. Whenever Hein is out of town, I sleep downstairs, but I’ve had trouble sleeping in my chair for a while now. Because of Hein and Ward’s planned hiking trip in two weeks, we decided to finally move my bed downstairs. I’ll have to be put to bed without Hein’s aid, so Lieke and Floor practised with the lift this weekend. On Wednesday, my bed was on the ground floor and the next day Lieke and Floor had a training day. First, they tried with one of them using the lift, but it’s a lot easier to work when the person being lifted is cooperating. My first time in the lift was dreadful, my head kept drooping forward. It went a lot better after I gave them pointers.

The Friday before our training weekend was a bit tumultuous. Floor and Ward had friends over and decided to go out after putting me in bed. I didn’t feel quite comfortable with that, so I decided to sleep in my chair that night. It did motivate me to try sleeping in my bed downstairs on Saturday. One night of bad sleep alleviated my fears of using the patient lift altogether. I slept well, even if it was a bit too hot. In short; mission successful. Hein and Ward can go on holiday without worrying about me.

One unexpected side effect is that we now have a sunroom with a bed and a patient lift, so our house is looking a lot more like a nursing home. Despite the fact that Hein is leaving in less that two weeks, we put the bed upstairs again in the meantime. We’ve already got a living room full of machinery as it is.

Floor

It has to be said, Floor is a key player in me getting in bed using the lift. She’s a great overseer, has an eye for detail and is dextrous, confident and compassionate to boot. I trust her completely. She’s wise beyond her years and has been for a long time. I remember how she first helped me use the lift two years ago and how good she was at it from the get-go, just from watching. People could learn a thing or two from her.

I think those skills came in handy when she did driver’s ed. She got her license in only six weeks, after which she was already able to drive our van all the way to Alphen. After a few weeks, she and Ward wanted to take the van to Amsterdam, without any supervision. We didn’t like the thought of that one bit. She picks up my mother in the van, who was on edge all the way to our house: “A van like this is no car for my little girl,” she probably thought. And when Hein was having bike troubles without bringing a cellphone or a bicycle pump, Floor didn’t hesitate to collect him and his bike in our van. Right now, she’s on holiday with a van full of girls who can’t even drive yet. She’s so adventurous.

Air conditioning

These days I don’t spend a night without the AC on, even though it isn’t even that hot out yet. It’s 21°C inside right now, about three degrees too hot for me too sleep. The AC requires the windows to be closed, which dampens the sounds on the street, so I sleep way better. No more squawking birds at 5 in the morning, no more thunder, no torrential rain and, because of the soft hum of the AC unit, not even my kids coming home late. I’ve been having some great nights of sleep lately. Relatively, of course.

Ward’s 16th birthday

Ward turned sixteen on Thursday, July 5th. I, farsighted as I am, ordered an electrical barbecue, which arrived just in time. It was supposed to be an early father’s day present for Hein. I’d completely planned out the barbecue in my head. My carers helped my put together a shopping list, choosing menus and buying groceries. On the day itself, however, I was resigned to watching the kids put my plan into action. They hadn’t been part of the planning, so they arrived one hour before the party started, thinking they would be done in time. Usually, sloppy planning like that results in a lot of scraps and a refrigerator that’s way too full post-party. Because of that, I hurried them along to get things ready. Even during the barbecue, I was like a hawk. Floor called me a dictator and, really, I can see why. I’ve always had difficulty relegating authority. The barbecue was a great success and the fridge was almost empty by the end of it.

Now that Ward is sixteen, he’s allowed into pubs with his own ID card and no longer has to pretend he’s called Lex or Job to get in. As a parent, I’m supposed to be disapproving of things like that, but I can’t get myself to.

Het bericht Diary June 2007 verscheen eerst op Living with ALS.

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.

Ailments

Before Hein left on holiday, I had my ears cleaned, which I do on a semiannual basis. That, and getting my vaccines are the only times I ever go to a doctor. I’m a firm believer in “waiting for things to blow over”, but during Hein’s week away I started doubting that mantra. It started with a wicked toothache in one of my front teeth. I couldn’t eat anything from the pain. It’s happened before and previous cases blew over, but when my cheek started swelling up too, I decided to make an appointment with my dentist. On the evening before my appointment, however, my stomach started aching as well, so I also made an appointment with a GP. Thus, that Friday, I went to the dentist and to the doctor’s office. The dentist looked grim and told me it’s most likely an infection, so she prescribed me antibiotics. Seeing as the pain in my tooth subsided, I’m not sure if I’ll take them. The doctor couldn’t find anything wrong with my stomach, so it’s probably passed already. I also talked to him about antibiotics. We decided against using them, but if the pain returns we’re free to call him during the weekend. The pain stayed at bay, so we didn’t. Thus, my theory about things always landing on their feet holds water. I just wish I could convince myself of it sometimes.

Fundraiser

We’ve had our first brainstorming session for the fundraiser. Monieke already made some general plans. We’ve already rented a theatre on November 16th. The theme will be Italy, with commedia dell’arte, lots of music and Italian delicacies. Thus far, it’s shaping up to be a very well thought-out event. There are about 200 available seats, so it’ll require some heavy publicity. If you’re reading this, you are cordially invited.

Hein and Ward abroad

Last week, Hein and Ward went hiking in the Vosges Mountains. As planned, I slept downstairs in the sunroom. It felt like a slumber party, Floor slept on a mattress next to my bed, while Lieke slept on the couch in the living room. I slept badly in my bed, so at around four o’clock, I had to be helped into my chair, where I spent the rest of the night. Floor took her mattress upstairs. At quarter past eight, Lieke and I were up and ready for my appointment with the shower lady. After that, it was my carers’ turn to care for me while Lieke went to work. Over the days, we started to develop a routine and I even felt comfortable in the patient lift. Still, I was rather glad to not have a bed in the sunroom anymore. On Thursday evening, Hein and Ward came home, tanned and a bit sunburnt. By that time, we’d put everything back where it belonged. They had a good time hiking, and back home we managed just fine too.

Harry Potter

We didn’t pre-order it, nor did we camp out in front of a bookshop, but we did buy it: the final installment of the Harry Potter series. The Harry Potter books started around the same time I got ALS, the first one appeared in 1997. It took awhile for us to contract Potter fever, but after the first film came out, we were hooked. I started reading them around the time the third one came out. Back then, I was patient enough to wait for the Dutch version to come out, but this time I was too excited to know how the story ends. That’s the fun thing about final installments of series, knowing the conclusion is just around the corner. It took awhile to get used to reading in English and some parts went over my head, but I still feel the same excitement I felt while reading the others. I even dream about it sometimes.

Holiday

I’m so lucky to have the carers I’ve got, they’ve got me covered for the entirety of summer break. Not one of them is going on holiday and they’re able to cover each other’s shifts. On Saturday, we’ll be heading for the Mecklenburgische Seenplatte, where we’re renting a Scandinavian cottage and a camping spot for canoeing. I have mixed feelings about it. I hope the house is big enough so I can have some privacy. I also hope it won’t be too hot.

Het bericht Diary July 2007 verscheen eerst op Living with ALS.

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.

Everyone brought their kids, something I’m thankful for. The more, the merrier. There were eight of us, nine one the last day, in a cottage made for six. That’s why we brought a tent. We’d told the kids beforehand to plan their own activities, but when we actually got there, no plans had been made yet. Every day, the answer to the question “what should we do today” was “shopping in Berlin!” I bloody hate shopping. To me, shopping means waiting outside or being wheeled around with nobody to talk to because they’re all walking behind me. It makes me grumpy and panicky, especially when it’s hot outside. In Berlin, we spent a large part of the day in a cafe, while the ones among us who wanted to go shopping went into town. Everytime we wanted to leave, another one of us dipped out, meaning we had to wait at the cafe for hours. It wasn’t all bad. We visited Ravensbrück Concentration Camp, which was impactful. We had long walks through Berlin, Schwerin and a few smaller towns. We canoed, read books and played lots of games.

Close one

It happened during the second week of the summer holidays. It was a Tuesday. A bit of egg salad had gone down the wrong pipe and I’d been coughing all afternoon. I thought a car ride would do me some good and maybe dislodge the salad. Wrong. On our way back from grocery shopping, we hit a bump and some mucus got stuck in my throat. I was fighting for air and asked Hein to pull over. Usually, standing upright helps get the phlegm down, but it didn’t this time. I remember trying the “standing up” technique twice, but after that, there’s nothing.

When I regained consciousness, the whole family was standing around me looking freaked out as a paramedic applied an IV. At that moment, the second ambulance arrived, as well as another doctor. Apparently I’d been unconscious for 15 to 20 minutes, purple-faced and eyes rolling. I was surprised and still can’t quite wrap my head around it. I just let them take care of me, except I fiercely resisted their attempts to check me into hospital. My blood pressure was incredibly high, 240/160, but it was decreasing steadily.

I spent the rest of the night feeling awestruck, I still couldn’t believe it. My family was still freaking out. Only the next day did I properly realise the truth: that could’ve been it for me. All of the certainty I had was gone. We spent the rest of the holiday doing as little as possible. I had a blind spot in my field of vision which made reading impossible. Fortunately, it’s passed by now, after two weeks. I would’ve been distraught if I lost the ability to read. Other than that, I have an infected gland but the antibiotics should take care of that. Something I can’t get back is my feeling of certainty. Some nights, I wake up in a cold sweat because I feel like I can’t swallow anymore, but it’s happening less and less.

A talk

We had a serious talk with the kids, and I think it went well. Hein explained to them that I don’t want artificial respiration. If there are any further incidents like this one, I don’t want anyone to intervene, no more medical interventions. Those close to me have a right to know too. I’m glad it’s out there now.

Back home

Marjan was already waiting for us with a good meal when we got back from holiday. We’d called ahead and given her a shopping list. It took me the whole weekend to get used to being home again. It was Floor’s birthday on Monday and we had a lot of guests. Tuesday was the first normal day I’ve had in awhile. I felt more certain and relaxed again. It’s a bit embarrassing to admit this, but I like a quiet life, a regular one with as few surprises as possible.

Het bericht Diary August 2007 verscheen eerst op Living with ALS.

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.

Sleep has gotten worse too. Whenever I’m in bed, I create so much saliva that I lose the ability to swallow, which wakes me up and sends me into a panic. But whenever I decide to spend the rest of the night in my chair downstairs, I wake up feeling short of breath, gasping for air.

Faith? I don’t have much left. I’ve become more tense, which lead to more spastic tremors in my legs. Now I understand how people develop phobias. I’ve started becoming afraid of being afraid.

Scenario

I’ve been getting a lot of comments on my story, about how badly things could have turned out. One fellow ALS patient wrote on her blog:

”That night, everything went wrong. I woke up and immediately had difficulty breathing. My night time carer cracked a window but it didn’t help. I asked her to get my neighbour, Eveliena. The last thing I remember was spelling the word “dying” a few times, after which I lost consciousness. I was completely bewildered when I heard someone say “Irma, you’re in hospital and you’re on artificial respiration.” What? I thought I was dead.
Suddenly, I was faced with the impossible choice between a tracheostomy and death.”

She picked the tracheostomy and spent four months in hospital before being relocated to a nursing home. That’s a scenario I want to avoid at any cost.

Ward

Now that Floor has moved out, it’s up to Ward to keep our spirits high. He’s such a treat. By day, he’s usually in his room, but at 20:30 he goes back downstairs to watch TV with me. Together, we decide on what to watch. The only times he misses TV night is on days when he has football training. And watching is a strong word, he usually intermittently checks his MSN on his PC. Ward feeds me bits of chocolate and adjusts my blanket and backrest whenever I ask him to. Hein does the heavy lifting when putting me to bed, but Ward always comes by later to fix the minute details. Positioning the pillow underneath my head is a matter of finesse. Ward is very patient.
He’s also a great cook. His favourite dish is tortellini, one he perfected when he was only thirteen. The same goes for salads. Normally, kids don’t learn how to cook when they’re thirteen. Then again, normalcy is few and far between in our family.

Twenty years

Next month, we’ll have lived in this house for twenty years. I’ve been sick for roughly half of that. It’s an odd thought. In those two decades, we’ve had three fireplaces, replacing the old-fashioned stone one with granite, which in turn was replaced by a romantic one adorned with a mirror. Optimistically, we ordered a lot of firewood. Optimistic, because we’d never actually used the fireplace before. Before we knew it, the whole living room was engulfed in smoke. Once, and never again we thought. We had some specialists look at the chimney, but apparently they thought it was a lost cause. That is, until we had one over two weeks ago who told us that it was simply a matter of making the chimney a bit wider, something he managed to get done within a week. It only took him about an hour. Hopeful, we put the wood into the fireplace and before we knew it, we had a perfect roaring hearth. We feel stupid about not having the thing fixed earlier. Ward has a penchant for firestarting. Thus far, we’ve spent two Saturday evenings gathered around the fireplace with a rented movie playing in the background.

The fundraiser

By now, we’ve had three meetings. The first one was the most fantastical, the second one was the most practical and by the time the third one rolled around, we’d already put the plans we’d made during the second one into action. The only things we still have to figure out are the Italian delicacies. Tickets are already on sale and we’ve reached out to local newspapers too. We’ve managed to land an interview in one of them and an article in another. We’re hoping to fill the whole theatre, so come one, come all!

Changes

After I got back from holiday, I made a few changes to my usual routines. When I’m using the lift, my carers know to support my ankle with their foot so I don’t sprain it. It makes using the bathroom a whole lot less stressful, as well as making it easier for me to position myself properly before sitting down on the toilet.
I also decided to drop porridge from my breakfast, replacing it with something called ‘Good Morning’, a nice nutritious fluid breakfast. I eat one glass with a spoon and one-and-a-half glasses of it with my feeding tube. As a result, I don’t cough as much anymore. Besides, I read on a Belgian ALS website that Activia yoghurt doesn’t thicken one’s saliva as much as normal dairy does, so I’ve decided eat that instead of my usual sour cream.

The last change has nothing to do with my illness, but with my age; I’m having difficulty reading newspapers. These days I only scan the headlines and need to keep my books at an arm’s length before I’m able to read them. I just so happen to hate glasses of any shape or form, so this might be an issue.

Het bericht Diary September 2007 verscheen eerst op Living with ALS.

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.

I should have known there was going to be trouble when I received a letter telling me that I’d have to start paying up to 900 euros a month for domestic help. I’m not against paying some contribution, but I have limits. Last week, we got our first bill. 400 euros a month, as much as our domestic budget used to be. In short, we were paying the full price and simultaneously had to deal with the surrounding bureaucracy. We went to look for a cheaper alternative, something undeclared. We saw an ad in our supermarket for cleaning services from a Polish lady. She started this week and she doesn’t speak a word of Dutch, just a bit of German. Her standard reply to anything we say is “OK”, which kind of reminds me of the Chinese lady who used to repeat “Yes, yes” over and over again, even though she didn’t have a clue what I was saying. The same goes for our Polish help. Roeline explained to her that she shouldn’t do any vacuuming while I’m sleeping, but that same day I was woken up by the sound of a vacuum cleaner. I tried to get her to stop, but to no avail. I was upset. Having an employee who doesn’t speak a lick of Dutch is hard. I feel for all of the old people who are in the same predicament I’m in, having to find terrible cheap alternatives to their former trusted helps.

Fundraiser

It’s going very well. Our meetings have been jolly and productive to boot. We’ll be in at least three newspapers and thus far, the journalists have been very impressed with our work. At two o’clock on Thursday afternoon, Lieke, Monieke and I were ready for our first interview, with another one scheduled two hours later. Our answers were swift and concise. Taking a flattering picture was the most difficult task of the day. I didn’t like the way my mouth gaped in one, while Lieke wasn’t happy about her nose in another. Monieke was the only one without any hangups. I wish someone could fix my teeth in photoshop, I’m not too keen on the final picture.
Right now, our biggest concern is the Italian cuisine and its pricing. We’ve been selling wristbands for three and five euros, letting people judge for themselves how much they’ll eat that evening. It’s an honour system, something some people in the committee find preposterous. I, on the other hand, am a firm believer in the honesty of our guests.
And ticket sales? I used to be worried about showing up in front of an empty theatre, but I’m much more confident now. We’ve sold 116 out of a total 219 tickets and I personally know a lot of people who intend on booking theirs soon. Get yours now, before they’re all sold out!

Grey

The following pictures were published alongside the newspaper articles about the fundraiser. My hair is so grey in them. I went to the hairdresser’s in between shoots. I was planning on having my hair dyed, but decided against it. I was curious about how I would look with grey hair. Besides, dying hair is such a hassle. It’s not too obvious yet because my hair isn’t fully grey yet, but I’ve been getting some positive reactions to my change of style. The kids aren’t too thrilled though.

Audiobook

Five years ago, I listened to my first and last audiobook. It was a bit of a failure, as I’d often fall asleep while I was listening. This week, I gave it a second try. Digital Fortress is a 350-pages-long book by Dan Brown. In audio form, it’s seven hours and ten minutes. It went by in a blink and I finished it in about half a week, much faster than if I’d read it. Moreover, I didn’t fall asleep this time. I should give audiobooks another shot.

PEG

I had another 2 hours of breathing problems on Sunday, because I couldn’t dislodge the mucus from my throat. It was such an ordeal that I decided to eat through my feeding tube from now on. I had my doubts the following few days, because swearing off eating altogether is a big step. But I persevered and, that Thursday, there were five boxes in the hallway. I started that very same day, mainly because I felt a bout of strep throat coming. 1500 calories from only four glasses a day, meaning I’d spend roughly 30 minutes a day on eating as opposed to the previous three hours of hard labour. The time I used to spend carefully eating and trying not to choke, I can now spend on better things. My carers were mainly there to help me eat, which took up the bulk of their time. We’ll have to find something else to distract them with. A new routine. I haven’t stopped eating conventionally completely. I like my breakfast way too much to give it up.

In general

I can spend all day trying to distract myself with Polish cleaners, fundraisers and audiobooks, but reality is a lot more grim than that. I feel like my foundations are slowly crumbling.

• I can barely stand on my own two feet anymore and it’s taking its toll on Hein.
• I’ve been on nighttime life support for the past week, as it turned out that a lack of oxygen was to blame for my bad night’s rest.
• I get my nutrition almost exclusively through a feeding tube.
• I almost always feel too hot and the resulting panic attacks only amplify that feeling.
• I’m afraid of being alone.
• I’m afraid of being in my wheelchair.
• I don’t like to be showered anymore. The shorter, the better.

Combine that with strep throat and my whole day is spent trying to clear my throat. It’s all becoming too much. I don’t have much hope for the future.

Het bericht Diary October 2007 verscheen eerst op Living with ALS.