{"id":1635,"date":"2000-08-31T19:46:11","date_gmt":"2000-08-31T17:46:11","guid":{"rendered":"http:\/\/levenmetals.nl\/dagboek-augustus-2000\/"},"modified":"2018-01-05T15:21:03","modified_gmt":"2018-01-05T14:21:03","slug":"diary-august-2000","status":"publish","type":"post","link":"https:\/\/levenmetals.nl\/en\/diary-august-2000\/","title":{"rendered":"Diary August 2000"},"content":{"rendered":"<h2>Open questions<\/h2>\n<p>An open question is a question that\u2019s unanswerable by a simple \u201cyes\u201d or \u201cno\u201d. A real thought-out answer is required. Open questions are useful in conversation. All the questioner has to do is nod, summarize and think of follow-up questions, all while the interlocutor talks away. I learnt this in psychology. By now, I\u2019ve started hating open questions. Too much work. I prefer closed questions, yes-or-no questions. Often, people ask me a closed question, like \u201cWould you like coffee?\u201d but I\u2019ll take too long answering, so they make it an open question by adding \u201c&#8230;or tea?\u201d It causes some confusion, so we start from the top. Confusion whilst not being able to speak is tiring. It can really piss me off. \u201cWhat a bunch of jackasses\u201d, I\u2019ll think, before realizing that it\u2019s me who\u2019s screwed up, not them.<!--more--> <\/p>\n<h2>Homeopath<\/h2>\n<p>I\u2019ve been going to a homeopath since April. He checks my blood for toxins and measures my energy lines. My blood was rather toxic and my energy wasn\u2019t doing too well either. Because of supplements, acupuncture and a diet without sugar, soda, coffee or chocolate the toxicity has gone down. No more toxic blood and rising energy levels. On holiday, however, the temptation of sugary beverages and coffee proved too great. Last week we went back to homeopathy. I was curious. Well, I was caught red-handed. My blood was toxic again. I immediately asked the homeopath if I had badly messed up. We mumbled some excuses about our holiday, but consider me scared straight. <\/p>\n<h2>Summer break 2000<\/h2>\n<p>The rest of summer break went smoothly. Floor went to camp and we received a postcard from her on Wednesday, unusually early. She even sent some to her grandmas. Ward wasn\u2019t bored, despite his sister\u2019s absence. Floor was absolutely demolished when she came back from her primitive camping trip (only one water pump to supply 50 kids, hudos instead of bathrooms). My sister-in-law Lieke picked her up and brought her to the Achterhoek (region in the east of the Netherlands), where we had rented a bungalow for a week with some friends and family. The weather was nice and not too hot. We saw some interesting things, some old some new. We had been in the region before. Afterwards, I felt refreshed. <\/p>\n<h2>PGB<\/h2>\n<p>From the 1st of June on, we\u2019ve had a personal reintegration budget, meaning we get to choose our carers and healthcare options ourselves. It looks like a lot of effort, reading through the paperwork, especially the first contract. Looks are deceiving, it was a breeze. For now, we decided to enlist a carer for three mornings a week. I\u2019m especially grateful that Inge, our primary carer, was willing to stay with us. We have really developed a bond of trust over the last year. She usually understands what I say and know what to do in every situation I put her in. I know as well as anyone that caring for me is hard and she\u2019s looking for greener pastures, but caring for me is easily combinable with her education. We\u2019re still on the fence about further help. I\u2019m not looking forward to letting a stranger take me out of bed and wash me. On the other hand, Hein can\u2019t do it by himself. We should make a list of activities I need help with, how strenuous those are to Hein and how much I object to letting a stranger help me with them. We haven\u2019t yet, but we should. For the time being, things are going fine. <\/p>\n<h2>New beginning<\/h2>\n<p>Today is Floor\u2019s first day in high school. She was excited for it. Her bag weighed in at a whopping 7.5 kg. She went out to practise cycling with a heavy bag. The neighbour boy called her a \u201cfresher\u201d. The day before yesterday, she collected her book and spent the whole day putting covers on them. Going to a new school is exhilarating, both for her and for Hein and I. Last week Floor went into town with a lot of money to buy new school supplies, including a brand-name backpack (which is important). There\u2019s already a parent-teacher meeting planned on September 4th. We\u2019ll be informed about all of the goings-on at the school. It\u2019s a new era for all of us. Ward has taken to going to school on his bike, accompanied by one of his friends, something he\u2019d wanted to do for ages. It takes a chunk out of Hein\u2019s daily schedule. We\u2019ve suddenly got lots of time in the morning. Today, I was already seated at the breakfast table at 7:45, squeaky clean. I do think that Hein is going to miss bringing Ward to school. <\/p>\n<h2>Afraid of going to bed<\/h2>\n<p>I\u2019m always reluctant to go to bed before Hein does. Lying in bed along is something I prefer to avoid. I don\u2019t know why, but whenever I\u2019m in bed alone I feel helpless and powerless. I\u2019m scared of Hein not hearing me if I were to call out. That thought alone can send me into a fit of panic. I\u2019ll suddenly feel really warm and panic even more. I start moving, making me more heated and more panicked. Trying to calm myself down, I tell myself comforting things, that nothing bad is going to happen and nothing is wrong with me. It usually helps. I never panic when Ward, Floor or Hein are next to me. It\u2019s got nothing to do with breathing problems and I still sleep fine. It\u2019s just the thoughts my brain conjures up that keep me awake at night. <\/p>\n<h2>An evening without Hein<\/h2>\n<p>Hein couldn\u2019t be home on Friday and Saturday night. Resolving these kinds of scheduling gaps is always a pain. I stayed at home with the kids and one of Floor\u2019s friends and we watched TV. Hein came back halfway through the night to help me use the bathroom. It may not seem practical, but it\u2019s the easiest way to do it. We watched countless movies, until it was suddenly 1 o\u2019clock. Crisps and cola galore. I had a good time. On Sunday we went to visit the renewed botanical garden in Leiden. The kids were all in. Maybe that\u2019s because we promised to look at the <a href=https:\/\/en.wikipedia.org\/wiki\/Amorphophallus_titanum>\u201dpenis plant\u201d<\/a>. Hilarious. In the end we didn\u2019t end up spotting it, sadly. <\/p>\n","protected":false},"excerpt":{"rendered":"<p>Open questions An open question is a question that\u2019s unanswerable by a simple \u201cyes\u201d or \u201cno\u201d. A real thought-out answer is required. Open questions are useful in conversation. All the questioner has to do is nod, summarize and think of follow-up questions, all while the interlocutor talks away. I learnt this in psychology. By now, &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/levenmetals.nl\/en\/diary-august-2000\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Diary August 2000&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[85,82],"tags":[],"class_list":["post-1635","post","type-post","status-publish","format-standard","hentry","category-2000-en","category-diary"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Diary August 2000 - Living with ALS<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/levenmetals.nl\/en\/diary-august-2000\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Diary August 2000 - Living with ALS\" \/>\n<meta property=\"og:description\" content=\"Open questions An open question is a question that\u2019s unanswerable by a simple \u201cyes\u201d or \u201cno\u201d. 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