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 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 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.

My trouble with standing upright made my shower lady ask me if I didn’t think it was time to get a sling lift. She thought Hein’s endless lifting isn’t sensible anymore. Besides, she said a sling lift is easily operable with only one carer. I still have my doubts, although I trust my shower lady more and more. However, she doesn’t see the gravity of the changes she proposes. Hein first talked to me about the possibility of getting a catheter and she backed him up, saying it was just a matter of emptying the bag of pee on my leg every time it’s full. “We could get a catheter,” Hein said, to which I scoffed “We?” Easy for them to say. When the shower lady said that the people delivering the sling could simply take away my standing-up one, all I could do was glare at her.

After a weekend of choking on mucus, we ordered a suction machine and we’ve made an appointment for a demonstration of a sling lift. Two more steps toward complete powerlessness.

P.S.: By now, we’ve tested out a sling lift. It was true, it’s operable for one person, provided that person knows how to use it. I had to endure so many “I told you so”s, not to mention the dreaded comment that the demonstrators could take the old lift with them when they left.
Getting a new sling lift would affect a lot of other parts of my life. It’s impossible to get my trousers and pants down without a way for me to stand up. I already wear special legwear with velcro and a fly on my backside. Despite that, it’s still a whole lot of trouble to get me on the toilet, making a catheter or incontinence aids (Diapers. They’re diapers.) that much more appealing

Oxygen

I’ve quickly grown dependent on oxygen. Three weeks ago, I barely felt stifled, but nowadays I can’t sleep for more than 1.5 hours without having trouble breathing. Luckily, I have oxygen now. Keep in mind, pure oxygen is not the same as artificial respiration. With something like tracheal intubation, a mixture of different gases including oxygen is pumped into the lungs. It requires an extensive hospital stay, usually a week, to find the perfect balance of gases for a person. I’m using pure oxygen. It’s not exactly good for me, because it increases the amount of CO2 in my blood, but it is easier. The oxygen tanks are delivered to my house without me having to stay in hospital. I didn’t even have to consult a doctor besides my first appointment to get a prescription. As little time in hospital as possible, that’s what I like. The oxygen comes in canisters and is applied through nasal intubation. I haven’t heard of too many ALS patients using this method. Of everyone I’ve corresponded with, only one used it too, and only at night. I hope I won’t have to use it by day, although I have noticed that taking afternoon naps is becoming more difficult because I’m breathing more deeply. I’m feeling restless.

Feeding tube

I ingest a litre of food through my feeding tube, which adds up to 1500 calories a day. Besides that, I drink a “Good Morning” for breakfast, eat fruit and Activia yoghurt. An average woman needs about 2000 calories a day, but seeing as I don’t move, I don’t need as much. I’ve been eating a lot more than I did before (I don’t know if ‘eating’ is the right term). Four glasses of PEG food a day, trying to emulate my normal eating pattern. I love how easy it is. Only now have I realised how much energy I spent on eating before. I’ve been gaining weight too. One of my carers said my face has gotten much fuller.

Sore throat

On Thursday my throat started to hurt a bit and the next day, I couldn’t talk anymore. The only thing that escaped my lips was a pathetic rasping. I obviously had strep throat, which I’d probably caught from one of my family members, all of whom were ill as well. It took two weeks to pass. Two weeks of not being able to clear my throat as mucus just kept building up. Two weeks of fighting for air. It was unbelievably tiring, all of the coughing and the intermittent panic attacks. I repeatedly asked my company to leave so I could concentrate on clearing my throat. I was afraid of showering. I woke up multiple times a night to try to get some of the mucus out. My throat didn’t even hurt anymore and, for awhile, I was scared that this would be the new status quo for me. Clearing one’s throat, something that takes about a second for normal people, usually costs me hours. Fortunately, it did pass. I haven’t coughed in two days. Yesterday, after three weeks spent indoors, I tentatively went outside. Not too far, mind you. Today, I visited the Anthropological Museum in Leiden, still feeling a bit apprehensive. On Thursday, I’m going to a musical and the fundraiser is planned on the day after. I’m excited, if a bit nervous.

Hein

For more than ten years, Hein has been my most trusted companion as my illness progresses. He was there with me, in the doctor’s offices, during homeopathy appointments, during the PEG operation, but also at the hairdresser’s, driving me around, going on holiday with me and even falling asleep. It’s not been easy for him, with the past few months being especially challenging. Every time I have to get out of bed to spend the rest of the night sleeping downstairs, he carries his mattress downstairs and sleeps next to me. I can’t be alone anymore. Lieke has been here to help me sleep for a night or two a week, and Floor does the same. Still, the lion’s share is Hein’s. He’s had my back from day one and is constantly vigilant. He may not be a paragon of patience, but I understand why he isn’t, even if it may not seem like I do in the heat of the moment.

Sometimes, I get mad when he doesn’t understand my needs, when he thinks I’m being too nitpicky about my body’s positioning or when he’s not in my field of vision while he’s talking to me. The same goes for him, he doesn’t always put up with my barrage of little tasks. It’s not uncommon for ALS couples to have these kinds of tensions. Still, we manage just fine, largely thanks to Hein.

Fundraiser

It’s finally upon us. The night before the fundraiser I was pelted with emails, especially about the Italian delicacies. At the last minute, it turned out that we weren’t supposed to make the Italian food ourselves as it was against the law to do so without a permit. In the end, we found a caterer. I considered the musical on the night beforehand a sort of dress rehearsal for the fundraiser. For the first time in a while, I was put into the car, alongside a canister of oxygen. There was no trouble and I fared well. So, the next day we arrived in Alphen, equipped with my most comfortable chair and oxygen. The theatre looked enchanting and the interior was very nice too. When I came in, I was the centre of attention, a position I don’t do well in, I had to acclimatise first and find a nice quiet place to settle down. I was seated by the entrance, able to watch the crowds come in. Hein and Floor were by my side, while we had a good view of the cloakroom, where Ward was busy handling people’s coats. A picture was taken of me and the organisational team before the show began. It was a successful night. Monieke gave a speech, the show was fun with a lot of audience interaction. Monieke, as the person who had set the whole thing in motion, was lauded by the ALS foundation and the final yield was almost 4000 euros. During the intermission I had a picture taken with all of my carers, who had never met each other before that night. We went home at half past twelve at night and we hit the hay at two. I was still tired the next morning, but it was worth it. I had a marvellous night. Thanks, everyone!

During our post-fundraiser meeting, we drew a few conclusions, which are as follows. Generally, we were happy with how the event went. The Italian delicacies set us back a bit because the catering cost us some money, but it did look very festive. In total, we’ve made a net 3000 euros from donations and ticket sales, so combined with the LEGO sorting nights, we’ve made 4300 for the ALS Foundation. We didn’t know 60 out of the roughly 200 people that showed up, so we must have drummed up some publicity as well. My website was visited 2500 times last month by 1800 unique users. That’s about 600 more than my average.

Relieved

Yesterday, we met with my occupational therapist. It turned out that I wouldn’t need to alter my wardrobe any further in order to use the sling lift. You can imagine my relief. Besides that, she believed that the sling lift wouldn’t impede my bathroom usage, so a catheter wouldn’t be necessary. Another reason for celebration. She talked to me specifically and not just to my carer. I think I’d like to see her more often.

Sinterklaas

This will be the first year we celebrate Sinterklaas with just the kids. Travelling all the way down to Alphen to celebrate with fifteen people is becoming a bit too straining for me. I’ll be spending the rest of the month writing Sinterklaas poems, which is why I’m posting this diary early.

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