![\"\"](\"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2017\/11\/Benefietavond-006.jpg\")
<\/p>\nI 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\u2019d have to sit in something that looks like a big sack. That doesn\u2019t sound appealing to me either. I hate not standing upright and I don\u2019t even think it\u2019s possible to use a sling lift with only one carer, especially since my neck can\u2019t keep my head upright. As for using the toilet, a lot of ALS patients choose a catheter, but that\u2019s a big step, not taken lightly. <\/p>\n
My trouble with standing upright made my shower lady ask me if I didn\u2019t think it was time to get a sling lift. She thought Hein\u2019s endless lifting isn\u2019t 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\u2019t 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\u2019s full. \u201cWe could get a catheter,\u201d Hein said, to which I scoffed \u201cWe?\u201d 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. <\/p>\n
After a weekend of choking on mucus, we ordered a suction machine and we\u2019ve made an appointment for a demonstration of a sling lift. Two more steps toward complete powerlessness. <\/p>\n
P.S.: By now, we\u2019ve tested out a sling lift. It was true, it\u2019s operable for one person, provided that person knows how to use it. I had to endure so many \u201cI told you so\u201ds, not to mention the dreaded comment that the demonstrators could take the old lift with them when they left.
\nGetting a new sling lift would affect a lot of other parts of my life. It\u2019s 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\u2019s still a whole lot of trouble to get me on the toilet, making a catheter or incontinence aids (Diapers. They\u2019re diapers.) that much more appealing<\/p>\n
I\u2019ve quickly grown dependent on oxygen. Three weeks ago, I barely felt stifled, but nowadays I can\u2019t 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\u2019m using pure oxygen. It\u2019s 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\u2019t even have to consult a doctor besides my first appointment to get a prescription. As little time in hospital as possible, that\u2019s what I like. The oxygen comes in canisters and is applied through nasal intubation. I haven\u2019t heard of too many ALS patients using this method. Of everyone I\u2019ve corresponded with, only one used it too, and only at night. I hope I won\u2019t have to use it by day, although I have noticed that taking afternoon naps is becoming more difficult because I\u2019m breathing more deeply. I\u2019m feeling restless.<\/p>\n
I ingest a litre of food through my feeding tube, which adds up to 1500 calories a day. Besides that, I drink a \u201cGood Morning\u201d for breakfast, eat fruit and Activia yoghurt. An average woman needs about 2000 calories a day, but seeing as I don\u2019t move, I don\u2019t need as much. I\u2019ve been eating a lot more than I did before (I don\u2019t know if \u2018eating\u2019 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\u2019ve been gaining weight too. One of my carers said my face has gotten much fuller. <\/p>\n
On Thursday my throat started to hurt a bit and the next day, I couldn\u2019t talk anymore. The only thing that escaped my lips was a pathetic rasping. I obviously had strep throat, which I\u2019d 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\u2019t even hurt anymore and, for awhile, I was scared that this would be the new status quo for me. Clearing one\u2019s throat, something that takes about a second for normal people, usually costs me hours. Fortunately, it did pass. I haven\u2019t 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\u2019m going to a musical and the fundraiser is planned on the day after. I\u2019m excited, if a bit nervous. <\/p>\n
For more than ten years, Hein has been my most trusted companion as my illness progresses. He was there with me, in the doctor\u2019s offices, during homeopathy appointments, during the PEG operation, but also at the hairdresser\u2019s, driving me around, going on holiday with me and even falling asleep. It\u2019s 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\u2019t 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\u2019s share is Hein\u2019s. He\u2019s had my back from day one and is constantly vigilant. He may not be a paragon of patience, but I understand why he isn\u2019t, even if it may not seem like I do in the heat of the moment. <\/p>\n
Sometimes, I get mad when he doesn\u2019t understand my needs, when he thinks I\u2019m being too nitpicky about my body\u2019s positioning or when he\u2019s not in my field of vision while he\u2019s talking to me. The same goes for him, he doesn\u2019t always put up with my barrage of little tasks. It\u2019s not uncommon for ALS couples to have these kinds of tensions. Still, we manage just fine, largely thanks to Hein. <\/p>\n
It\u2019s 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\u2019t 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\u2019t 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\u2019s 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!<\/p>\n
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\u2019ve made a net 3000 euros from donations and ticket sales, so combined with the LEGO sorting nights, we\u2019ve made 4300 for the ALS Foundation. We didn\u2019t 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\u2019s about 600 more than my average. <\/p>\n
<\/p>\n
Yesterday, we met with my occupational therapist. It turned out that I wouldn\u2019t 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\u2019t impede my bathroom usage, so a catheter wouldn\u2019t be necessary. Another reason for celebration. She talked to me specifically and not just to my carer. I think I\u2019d like to see her more often.<\/p>\n
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\u2019ll be spending the rest of the month writing Sinterklaas poems, which is why I\u2019m posting this diary early. <\/p>\n","protected":false},"excerpt":{"rendered":"
Worries 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 … <\/p>\n