A Few Pretty Intense Days

Posted on by Astrid

Hi everyone. It’s been a few days since I wrote on my blog and I didn’t even check my feed reader yesterday at all. The last few days have been rather intense emotionally.

First, on Sunday, my husband picked me up at 8:30AM to drive to my sister and her family, who live across the country. Little Wolke, my baby niece, was, well, a baby. She didn’t really interact at all. Neither at first did Janneke, my older niece, who will be three in September. My sister did explain that “auntie Astrid’s eyes don’t work” so that’s why I can’t look at her, but she was still shy. Once my sister had taken the polymer clay bear I’d created for Janneke and let her undo the wrapping, she was a little more engaging. I did feel bad that, when she said the bear wanted a kiss, I told her not to (since I keep hearing mixed things about the safety of polymer clay in this respect). I did worry for a while that maybe Janneke was a bit too young for the bear, but my sister said she doesn’t put things in her mouth anymore and my husband said she has to learn.

My brother-in-law kept my husband occupied with the same old stories and jokes he tells each time we see each other. Meanwhile, Janneke warmed up to me and started inviting me in to her play. Janneke had hip dysplasia, for which she needed surgery last September. She still remembers in a way or so I think, as all her dolls needed to go to the doctor and get fitted with a cast (or have the cast sawn off).

At one point, my sister did start talking about needing to get rid of her pregnancy pounds. I felt a little uncomfortable about that, as she’s quite thin and I am still overweight. Then she started telling me about her career plans.

Overall, I did notice that my sister only talked about herself (and her kids). This is okay with me, but it does remind me of my parents often telling professionals that I am only able to talk about myself. It makes me feel as though the reason I’m not allowed to talk about myself is not that it’s about myself, but the fact that I don’t live a “normal” life. In other words, the contents of what I tell my parents makes them uncomfortable more so than the fact that it’s about me. Either that or my sister is somehow a lot more reciprocal with my parents than with me.

I do think I like Janneke after all though. Last time I saw her was at my birthday almost a year ago. My sister prompted her to give me her present, but she said: “No auntie Astrid not nice.” I felt that was both cute and a tiny bit upsetting.

Thankfully, my husband was able to drop me off in Raalte again in the afternoon. I arrived here with half an hour to spare before we’d eat dinner, which was Chinese takeout.

Then yesterday, which was a bank holiday, I spent most of the morning in bed, because a temp worker was assigned my one-on-one shift and the two most recently employed staff, neither of whom I know well, were working the regular shift. The temp worker tried to get me to go out of bed at first, but she had no idea about the activities I normally do during the day and I didn’t have the energy to explain them to her. Overall, I felt really powerless and like I’d rather not have someone there at all. Thankfully, today we’re more or less back to normal.

#WeekendCoffeeShare (January 21, 2022)

Posted on by Astrid

Hi everyone on this late Friday evening. I’m joining #WeekendCoffeeShare, even though it’s a bit late for coffee here. I am going to grab a glass of water and some fruit in a bit, so if you’d like a soft drink or a glass of water too, you can have one. Let’s catch up.

If we were having coffee, first I’d moan about the cold weather some more. Boy, do I hate winter! Several staff have been trying to coax me into going on walks because it was supposed to be sunny and nice outside. Then I’d invariably reply: “It’s 3°C outside too, brrr.” Usually, the air would become cloudier soon enough and we’d get rain.

If we were having coffee, I’d share that, probably due to my lack of exercise, I didn’t lose weight over the past week even though I stuck to my healthy food plan pretty well. That is, I didn’t feel as though I was just eating carrots and lettuce all week, so maybe I accidentally sneaked in some extras I shouldn’t have had. For example, I am allowed 225ml of yogurt or 200ml of quark with some muesli for breakfast. On Wednesday, my staff poured half the 500ml can of quark into my bowl. Now quark contains only about 50 calories per 100ml, so that didn’t really make a huge difference on its own. However, given that I or my staff may’ve made other such slightly less healthy food choices over the week and I also hardly got my butt off the chair, this combined caused me to maintain. At least I didn’t gain any weight either.

If we were having coffee, I’d tell you that I went to the dentist on Wednesday. Thankfully, other than slightly inflamed gums, everything was fine. I was pretty sure I’d be diagnosed with gum disease and have to be seen by the oral hygienist. Apparently not so. I was sent on my way with instructions for better teeth-brushing and flossing and an appt with the prevention assistant in February.

If we were having coffee, I would share that I texted with my sister this evening. I can’t remember whether I shared before that she’s pregnant again. She’s expecting another girl in May. So far, all seems to be going as it should be. My (other) niece (other than the bump, I mean) is doing okay too. I mentioned in August that she was diagnosed with hip dysplasia. After surgery in September and a cast for several months, she’s now doing pretty well again.

If we were having coffee, lastly I’d share that my husband is off work with the flu. He tested negative for COVID, but thankfully he wasn’t so crazy as to go back into work as soon as he got the negative test result. Back in early 2020, before COVID was known outside of China, he did go to work as a truck driver while sick with the flu. I am glad he doesn’t have COVID, of course, but regardless I’m hoping he’ll feel better soon.

How have you been?

#WeekendCoffeeShare (November 6, 2021)

Posted on by Astrid

Hi everyone on this gloomy fall day. I’m joining #WeekendCoffeeShare. Unlike most days when I write my coffee share post, I haven’t had my last cup of coffee yet. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that my GP appointment on Monday went okay. My magnesium got decreased in hopes of relieving me a little from my abdominal discomfort. It’s helping a tiny bit, but not enough for my liking.

If we were having coffee, I would tell you that I had an okay week otherwise. I’m struggling quite a bit with the disconnect between my intellect and my emotions. This is causing me to appear well-collected a lot of the time when in reality I feel extremely distressed. I discussed a few examples of this with my assigned staff and support coordinator today and they’re helping me improve these situations.

If we were having coffee, I would share that I finally gave in (or up) with respect to the adaptive footwear situation and had my husband order new walking shoes for me. After all, the old ones will probably have a large enough to get my socks wet hole in them within a week or two at most. I am so grateful my husband found almost the exact same shoes. They arrived in the post today. I am still hoping I will eventually get used to my orthopedic footwear, but it will need some further adjustments for that to happen first.

If we were having coffee, I would share that I am looking forward but also stressing about the national cerebral palsy day in three weeks’ time. I went to the event on my own three years ago, but this is quite hard this time. I can’t afford for a staff member to go with me to the entire event even with my one-on-one being covered by the care facility. After all, I have one-on-one only part of the day and would need to pay like €45 an hour for individual support for the rest of the day. I might go on my own after all, or I might skip the event, like I skipped the online regional meeting today. I was seriously planning on going to that one, but just couldn’t get myself to do it after all.

If we were having coffee, lastly I’d proudly announce that I’m going to be an aunt again in May. I’m pretty sure my sister is fine with me sharing this on my blog now that she’s past three months and all tests so far are fine. My sister’s other child, my niece, is also doing well. I shared a few months back that she was diagnosed with hip dysplasia. She had surgery in September and is currently wearing some type of cast. We are all hopeful that once this will be removed in a month or so and once she’s relearned to walk after that, she’ll be completely fine.

How have you been?

#WeekendCoffeeShare (August 29, 2021)

Posted on by Astrid

Hi everyone, how are you? I’m a bit late joining #WeekendCoffeeShare, as it’s already Sunday. I just had my afternoon coffee and, like I said last week, my Senseo is with my husband now. Now I’m assuming he won’t use it much, as not only is he more of a freshly-brewed coffee person, but he’s trying to cut back on his caffeine intake. That’s his decision though. Let’s have a cup of coffee (or pretend to) and let’s catch up.

If we were having coffee, I’d share that I had a good week overall. The weather’s been okay. Not as warm as I’d like it and a little windy for my liking too, but at least it’s been mostly dry.

If we were having coffee, I would share that I decided not to join Steptember, the annual cerebral palsy fundraiser, this year. I participated last year, but the pressure of having to get in 10K steps each day (or as many as I could) and raise money, was a bit too much for me.

If we were having coffee, I’d also moan about my AFO. Yes, it’s been a while, but if you’d thought that no news is good news, you would be wrong. My AFO had been with the orthopedic instrument maker, whom I’ll call AFO guy, for a few weeks, but upon return, we found out that it’s still not working well in combination with my orthopedic shoes. Now AFO guy and shoe guy were both contacted by the physical therapist and it’s up to them to figure out how to solve the issue.

If we were having coffee, I’d also whine a little about my foot pain. The physical therapist hasn’t gotten back to me about that, so I’m not sure what’s causing it. Could be my shoes, since they’re really old (the non-adaptive ones I now wear). Please pray AFO guy and shoe guy will figure out the issue with my adaptive footwear soon.

If we were having coffee, I’d ask you to pray for my niece. I didn’t ask my sister permission to share her hip dysplasia diagnosis last time, which I think now is wrong, so I won’t be sharing any more details. However, she is definitely in need of continued prayers.

If we were having coffee, lastly I’d share that I’ve been really crafty over the past week again. I created some lovely polymer clay ornaments, as well as a hand cream and keychain for one of my fellow clients, who had his birthday on Wednesday. Yesterday, I encountered a lot of frustration with one of my Fimo Professional clays being very crumbly and hard. I eventually managed to restore it to health though.

How have you been?

#WeekendCoffeeShare (August 14, 2021)

Posted on by Astrid

Hi everyone on this beautiful Saturday! The weather is much better than I’d expected yesterday that it’d be. It’s partly cloudy but warm and dry. I like it.

Today, I’m joining #WeekendCoffeeShare again. I just had my afternoon coffee, as seems common when I write these posts. However, I’m pretty sure there’s still some coffee left. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share that I finally went to Lobith last weekend. It was good being there. As I mentioned yesterday, we got pizza (takeout). Other than that, we just chillaxed. Is that even a word?

If we were having coffee, I’d share that I texted my sister on Monday. She’d called me last week because her daughter had been referred to the orthopedic doctor for a leg length difference (her left leg is shorter than her right leg). Apparently, my niece also used her left leg less than her right. My sister wanted to know about the reasons I wear (or should wear) an AFO. I explained about the fact that I had a brain bleed and it’s from that, without mentioning cerebral palsy of course as my parents never mentioned that to me even though I’m pretty sure that’s what it’s called.

As it turns out, my niece has mild hip dysplasia and will be seen by a child orthopedic specialist in Amsterdam someday. Please all pray that the wait won’t be too long. My niece is nearly two-years-old, so it’s pretty late for corrective wear or so I’ve been told.

If we were having coffee, I would tell you that I’ve been doing quite well over the past week. I have mostly felt able to cope with my current situation okay. On Thursday, a fellow client was screaming for almost an hour on end. She does this every once in a while, yet for the first time I didn’t have an impulse to run away. I did get a little threatening towards the client, but the staff were able to calm me down.

If we were having coffee, I’d tell you I have been rather crafty of late again. I didn’t finish many projects, but I did practise polymer clay a lot. I also did make a melt and pour soap and massage oil for my friend who lives a few care homes down the road from me. It was her birthday yesterday. I came by at around 10:30AM to give her her presents and was invited to sit down in her garden for coffee and apple crumble. This was really nice.

If we were having coffee, lastly I’d share that tomorrow, I’m going to Ikea with my one-on-one to buy some new furniture for my room. My dining/crafting table is rather wobbly on its legs, so I want a new one. I also want a new second chair for my staff. My staff currently sit on a very clunky office chair with armrests, which for this reason can’t be pushed under the table. I want one similar to my own chair. I’m pretty sure I’ll be successful at finding both a desk or table and a chair. I’m also going to look at a mini fridge, as you may remember I wanted to buy one for in my room too. I don’t intend on actually buying it at Ikea, but I want to take a look at what it’s like so that I know if I have the right picture in my mind. Then I want to order it online next month when I get some extra money with my benefits.

How have you been?