One would think that, with the amount of time I\u2019ve 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\u2019s 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\u2019d be gone after 18:15, meaning I\u2019d 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. <\/p>\n
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\u2019m a firm believer in \u201cwaiting for things to blow over\u201d, but during Hein\u2019s week away I started doubting that mantra. It started with a wicked toothache in one of my front teeth. I couldn\u2019t eat anything from the pain. It\u2019s 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\u2019s office. The dentist looked grim and told me it\u2019s most likely an infection, so she prescribed me antibiotics. Seeing as the pain in my tooth subsided, I\u2019m not sure if I\u2019ll take them. The doctor couldn\u2019t find anything wrong with my stomach, so it\u2019s probably passed already. I also talked to him about antibiotics. We decided against using them, but if the pain returns we\u2019re free to call him during the weekend. The pain stayed at bay, so we didn\u2019t. Thus, my theory about things always landing on their feet holds water. I just wish I could convince myself of it sometimes. <\/p>\n
We\u2019ve had our first brainstorming session for the fundraiser. Monieke already made some general plans. We\u2019ve already rented a theatre on November 16th. The theme will be Italy, with commedia dell\u2019arte, lots of music and Italian delicacies. Thus far, it\u2019s shaping up to be a very well thought-out event. There are about 200 available seats, so it\u2019ll require some heavy publicity. If you\u2019re reading this, you are cordially invited. <\/p>\n
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\u2019clock, 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\u2019 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\u2019d put everything back where it belonged. They had a good time hiking, and back home we managed just fine too. <\/p>\n
We didn\u2019t 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\u2019s 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.<\/p>\n
I\u2019m so lucky to have the carers I\u2019ve got, they\u2019ve got me covered for the entirety of summer break. Not one of them is going on holiday and they\u2019re able to cover each other\u2019s shifts. On Saturday, we\u2019ll be heading for the Mecklenburgische Seenplatte, where we\u2019re 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\u2019t be too hot. <\/p>\n","protected":false},"excerpt":{"rendered":"
Planning One would think that, with the amount of time I\u2019ve 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\u2019s especially obvious whenever Hein is away. Floor told me, in passing, … <\/p>\n