#WeekendCoffeeShare (July 24, 2021)

Hi everyone on this late Saturday evening. I’m joining #WeekendCoffeeShare even though it’s rather late for coffee here at nearly 9PM. Besides, I had green tea this evening. I can of course still make you a Senseo, although with the amount of coffee stains in and on my coffee maker I wouldn’t recommend it. So I guess a glass of water or a soft drink should suffice. I hope that’s alright. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share that I’m so grateful the weather has been much milder over the past week than it was the week before. Of course, we here in Raalte weren’t personally affected by the floods either and damage control down in Limburg is still ongoing. However, the weather here has been truly beautiful.

If we were having coffee, I’d share that, thanks to the weather as well as my feet cooperating, I have been able to get in a lot of walking lately. I got in over 11K steps each day of the week so far.

I am still not sure I’ll sign up for Steptember, the annual fundraiser for the cerebral palsy charity this coming September. The aim is to raise funds while aiming for 10K steps each day, regardless of whether this is done while walking, wheeling, biking, etc. Last year, I did participate, but I didn’t really like the pressure I put onto myself by signing up.

If we were having coffee, I would tell you that I’ve been really crafty over the past week. I have been making some new bracelets. One of them, I sent to my mother. She received it in the post today and was happy with it.

I also picked up trying to do latch hooking again. This is a yarn craft for making rugs etc. I learned this at the blindness rehabilitation center back in 2005 and tried to pick it up again briefly in the psych hospital, but was too easily frustrated for it back then. So far, I am not 100% sure I understand the technique again yet, but I’m confident that ultimately I’ll learn.

If we were having coffee, I’d share that I’m truly grateful for all the comments on my blog over the past few days. It makes me feel so happy to see that others read and appreciate my writing.

If we were having coffee, lastly I would announce that tomorrow is my third blogiversary! That is, it’s the third anniversary of my having (re)started this blog. I say “re” because I used this domain (or the WordPress.com subdomain at least) back in 2011 too. I have been on WordPress for over fourteen years and have had an online diary ever since 2002. I still keep learning and growing everyday. I am so, so grateful that, contrary to what some “influencers” say, blogging isn’t dead at all. I hope it never dies.

How have you been?

Jewelry-Making #WotW

Hi everyone. Today I’m once again joining Word of the Week. I already shared some of my experiences from the week with you all on Friday. Today, I want to focus on an important positive aspect of the week: jewelry-making. Like I said last week, I got a lot of supplies from my parents for my birthday. I also bought some new supplies later this week.

The actual jewelry-making process is still sometimes hard for me due to my being blind and having mild cerebral palsy. I am making progress though in figuring out what works for me.

First, on Wednesday, I made a bracelet for my day activities staff. She had her birthday that day so was off, but my assigned support staff from the home came to sub. I did all the threading by myself and tried to tie the knot too.

On Thursday and Friday, I was even busier making jewelry. I made my first necklace in a long time. It didn’t turn out as good as I’d hoped and I don’t have a photo, but it is nice enough.

I also made a football bracelet for a fellow client. I originally wanted to make something in the colors of his favorite club, but I didn’t have red and white beads. Instead, I chose green for the grass and added a football charm. This client has his birthday next month I think, so I already decided to make him something in the club colors then.

Lastly, I enthusiastically decided to make a necklace for my niece. She is 21-months-old and I had no idea what the appropriate age for wearing jewelry is. I also added acrylic charms that I later realized she might pull off and put into her mouth.

I texted my sister and she said two to three years is the recommended age for necklaces. I thought of keeping the necklace for my niece’s birthday, but eventually decided to give it anyway when my sister and her family visited me yesterday. I’m confident my sister will be able to keep it safe until my niece is ready for it.

How would you sum up your week?

Word of the Week linky

#WeekendCoffeeShare (May 15, 2021)

Hi everyone on this partly cloudy but thankfully not too rainy Saturday! Today I’m once again joining in with #WeekendCoffeeShare. I just had my afternoon coffee for today, but there’s probably still some left. Or you can grab a cup of tea or a soft drink. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been rather eventful. It started out with my psychiatrist’s appointment on Monday. Like I said, I was overcome with disbelief at how seriously the psychiatrist and my nurse practitioner took me.

Over the entire week, I’ve had a lot of emotional and visual flashbacks related to my trauma. I’ve also experienced some form of near-psychotic-like symptoms where I confused the past with the present. My inner life feels like a rollercoaster ride of dissociation, anxiety, paranoia and more. I really hope that I can start the topiramate soon and that it will help. I did try to take my PRN quetiapine a few times, but it hardly really helped.

If we were having coffee, I would tell you that my mother-in-law visited me on Tuesday. We went for an hour’s long walk and got fried fish at the marketplace near my neighborhood supermarket on the way back. Unfortunately, it started to rain just when we’d finished our fish, before we were back to the care facility. Thankfully, the rain wasn’t too heavy.

If we were having coffee, I would tell you that, despite not meeting my step goal of 10K for several days so far, I’m still on track for this week. The reason is the fact that, early in the week, I surpassed my goal. I even got in 17K steps on Wednesday.

If we were having coffee, I would tell you that my sister had her birthday on Thursday. I sent her a present (a book) already last week, but she wouldn’t open it till her actual birthday. My mother posted a picture on my sister’s FB of the card she’d sent announcing my sister’s birth. It showed me as a toddler and my sister as a newborn. My sister commented with a recent picture of my niece in which she looks just like me in the card, saying that toddler (leaving it to interpretation whether she meant me or my niece) is more beautiful.

If we were having coffee, I’d tell you that I’m seriously considering buying Apple Airpods Pro. I really want in-ear earplugs so that I can listen to soundscapes or soothing music when going to sleep. I also badly want them to have noise-canceling functionality.

Unfortunately though, I haven’t had the announcement from the benefits authority of my getting my annual vacation allowance, which should be in my bank account later this month. I had originally planned to buy the Airpods (and maybe an Apple Watch too) for that money. However, with the Braille display expense scare last week, I’m a little more careful now.

If we were having coffee, I’d share about the online magazine on cerebral palsy I found out about earlier this week. CP Netherlands created it and it’s lovely. I read in it, among other things, about a radio news reader who has CP.

If we were having coffee, lastly I’d tell you that my AFO broke sometime today. I have no idea how it happened, but my staff saw it when I wanted to put it on this afternoon. Ugh, I hate it when my adaptive equipment breaks down.

How have you been?

First Impressions

I’m rather late to write today. I wasn’t sure what to write about, if anything, for all of today. Then I came across
Fandango’s provocative question for this week. This definitely inspires me. Fandango asks what impression you think you make when people first meet you?

Well, let me start by saying it depends. The factor that makes the difference is largely whether I’m using my white cane. When I am, that’s obviously the first thing people notice. Then most people will immediately know that I’m blind and their further impressions of me will be as much based on me as on their views and prejudices about the blind.

When I’m not using my white cane, people will usually still immediately notice that I am disabled, but be unable to tell what my disability is. This surprised me for a long time, as I always thought the fact that I’m blind is obvious from the way my eyes look. Apparently not, at least not since my cataract surgery in 2013.

In fact, I didn’t know that it’s not obvious somehow until I attended my second online cerebral palsy meeting. In the first, I had mentioned my additional disabilities immediately, but I had no reason to the second time around. Midway through the meeting, I got to mention it and the people who hadn’t attended the previous time all said they hadn’t known.

Generally speaking, I allow strangers and near-strangers to make their own judgments about me and my disabilities based on the first impression, be it that I’m blind or that there’s something “wrong” but they cannot be sure what. Sometimes I correct them, but less and less so. I mean, I could correct taxi drivers that it’s not obvious that all blind people live in care facilities, but why should I? I don’t think I have an obligation to justify why I need 24-hour care and people who are just blind don’t. I honestly don’t feel it’s my responsibility to set an example of competence that I cannot live up to just so that others won’t stereotype other blind people.

I once was approached by a police officer, because I had been wandering the neighborhood without my white cane. That policeman assumed I was either high on drugs or intellectually disabled, as he asked me whether I’d used or had eloped from the local institution. At the time (when I was around eighteen), I had virtually no understanding of the impressions I made on people and I initially corrected him. My father thought the police officer was stupid for assuming I had used drugs or belonged in the intellectual disability facility. I think my father’s preconceived judgments about me and anyone interacting with me, were farther off than that police officer’s.

#WeekendCoffeeShare (May 8, 2021)

Hi and welcome to my #WeekendCoffeeShare post for this week. Grab a cup of coffee, be it Senseo or traditionally-made, a glass of your favorite soft drink or a glass of water and let’s catch up.

If we were having coffee, I’d share that the weather here is still all over the place and mostly not in a good way. It’s mostly rather chilly for the time of year and has been raining everyday for the past week. Tomorrow, the temperature’s supposed to rise to a whopping 25°C, but we’re still supposed to get rain and of course thunderstorms. Not fun!

If we were having coffee, I would tell you that, despite the weather, I still managed to get in an average of about 8000 steps each day. I’m still experiencing foot pain when wearing my AFO for longer than say fifteen minutes at a time, but it’s okay if I don’t go for long walks.

If we were having coffee, I would share that I am so happy that my Braille display got fixed. Like I said yesterday, it was quite the ordeal.

If we were having coffee, I’d also share that the construction crew finally came by my and my husband’s house in Lobith to get us a new front door and backdoor. They still need to fix one window, which has a crack in it. Thankfully, they weren’t as stubborn as the Braille display company, so my husband won’t have to pay for the broken window.

If we were having coffee, I’d tell you about the talk I had with my facility’s behavior specialist on Thursday. I was able to express my continuing feelings of not belonging in my current care home. This, for clarity’s sake, has nothing to do with the care home itself or the way the staff treat me, which is great. I am pretty sure it’s my search for some ideal that really doesn’t exist. After all, wherever I go, I always take my insecure self with me.

If we were having coffee, I’d tell you about the online cerebral palsy (CP) meeting I had this morning. It was a regional meeting, because in the future CP Netherlands hopes to organize them in real life. It was quite an interesting meeting. Having recently become more and more aware of my CP, I was able to feel validated by people’s experiences of the long-term effects of this disability.

I also signed up for an online workshop on aging with CP that’s being held next month. I am still considering whether to sign up for the workshop on development of people with CP from birth to age 35, as it sounds interesting despite the fact that I’m nearly 35 myself.

If we were having coffee, lastly I’d share that my husband and I are planning on having lunch tomorrow. As usual, we’re going to get a takeout lunch at Subway.

How have you been?

#WeekendCoffeeShare (April 24, 2021)

Hi everyone! After writing this afternoon’s quick post, I felt I really wanted to write another post today, so I’m joining #WeekendCoffeeShare on Saturday. I’m pretty sure I’ll have something else to share with you tomorrow. Either that or I can take the day off blogging for a change. Anyway, I just had my soft drink and chips for this evening, but there is no doubt still some left. Let’s have a drink and let’s catch up.

If we were having coffee, first, as usual, I’d make smalltalk about the weather. It’s mostly been sunny and dry, but windy and quite chilly. How is yours?

If we were having coffee, I would tell you that I’ve been struggling with foot pain when walking for a while now. I don’t know why, but it seems worse when I wear my AFO (ankle foot orthosis). The physical therapist – not my usual one, since she was off sick – came by yesterday. I can’t remember all that she said, but it came down to my having muscle tension in my feet or something. Massaging my foot before putting on the AFO may work. Other than that, she basically told me that the AFO takes some getting used to. I interpreted this to mean I just need to push through for a bit. That, I think, makes little sense, since I’ve had the AFO for at least a month, probably two, and was fine most of that time.

I was pretty frustrated and depressed when I could barely walk with the AFO on yesterday evening. I immediately catastrophized that I may as well get a wheelchair. Another possibility, and I know my staff don’t buy that one, is that I just need to lose weight. I do, but my staff don’t believe that’s causing my pain. Honestly, neither do I, as I’ve been a lot heavier in the past and then didn’t have issues with pain. My foot also does stand in a weird position when not forced into a 90-degree angle by my AFO. Well, I’m not wearing my AFO for now and we’ll see what will be next.

If we were having coffee, I’d share that on the walk without my AFO this evening, I heard a stork making that clattering sound storks do. We were near the neighborhood supermarket, so at first, my staff didn’t believe me and was convinced it was something else. Then she spotted a stork nest.

Stork

If we were having coffee, I would share that I’ve been reading a lot lately. Some of it involves me exploring the enneagram and other personality-related topics. I’ve also been reading a little on attachment styles and trauma. However, I’m also reading for enjoyment. I am currently reading the foster care memoir A Sister’s Shame by Maggie Hartley.

If we were having coffee, I’d also tell you that I’ve been writing a lot again. Of course, I’m still blogging everyday, but I’ve also picked up my journaling app, Day One, again, and am aiming to write at least a few sentences each day.

If we were having coffee, lastly I would share that I’m finally able to benefit fully from the YouVersion Bible App and Bible.com. I discovered the note-taking feature yesterday. Today, I finally downloaded the Common English Bible translation. This translation’s publishers require a valid E-mail address and I had initially signed up with my Apple ID and a hidden E-mail address. I thought it should be easy to add my actual E-mail address to the app, but not so. Turned out I also had an account, a different one, with my actual E-mail address. Thankfully, I was able to sort it out. I’m fully enjoying my Bible reading again.

What’s going on in your life?

An F in Phys Ed

One of Mama Kat’s writing prompts for this week is whether you played sports as a child and if so, to share a memorable game. I never played sports outside of school. That is, I attended one gymnastics class with my sister and a friend of hers at around age eight. I didn’t enjoy it one bit, despite normally liking gymnastics in physical education classes.

I was, to put it plainly, horrible at sports. Any sports. While gymnastics was my favorite part of physical education, it was more because I hated team sports and athletics even more.

At the school for the blind I attended for grades four to six, I was always picked last. Not just because of my lack of athletic capacity, but also because I was the only girl in my class. I don’t blame my classmates though.

When I attended mainstream high school, my phys ed teacher was also my tutor. He was great at accommodating me up to a point. For example, he let me run with a buddy. Of course, I was the slowest runner of the entire class. Looking back, I like to blame my mild cerebral palsy, but I still struggle to figure out what is due to that and what is simply due to my being fat. Not that I was fat at the time, but I wasn’t skinny either.

In my second year in this school, I hadn’t had any failing grades until sometime in February. My classmates complained that I got it easier than them, because for example I’d get extra time on tests. Whether this motivated my phys ed teacher or not, I’ll never know. We had to do gymnastics, a particular swing on the rings. I couldn’t really see what everyone else did, but I tried my best. And failed. My teacher explained to my father that I might’ve done the best I could, but he couldn’t possibly justify giving me a passing grade.

Like I said, he was my tutor. He almost took pride in being the first to give me a failing grade that year. Except that he wasn’t. That same week, I’d gotten an F in Greek too. That one was definitely justified, as at the time I didn’t face any barriers to learning basic Greek that my classmates didn’t.

From the next year on, I started going to a gym instead of following regular PE classes. I, after all, would never be able to attain the level of physical ability required for higher secondary school sports. I continued to attend the gym regularly throughout high school and for the first several years after.

Mama’s Losin’ It

#WeekendCoffeeShare (January 16, 2021)

Hi all on this grey Saturday. Today I’m joining in with #WeekendCoffeeShare. I just had my afternoon coffee about half an hour ago. If you want a Senseo though, I can make one for you. Let’s have coffee and let’s catch up.

If we were having coffee, first I’d ask you how your weather is. Ours is pretty cold, but the newspaper said it isn’t even really freezing. I guess I don’t really like winter if I consider this cold. Snow is forecasted for tonight, but I doubt it’ll even create a dusting of white. That’s fine by me as I don’t like snow.

If we were having coffee, I’d share that I guess I shouldn’t have said on Thursday that I am glad to live in a stable democracy. After all, the Dutch government collapsed on Friday. It’s totally justified though and no, it’s not about COVID. It’s about parents pretty much randomly being labeled as fraudulent childcare payment recipients and made to repay sometimes tens of thousands of euros that they didn’t have.

If we were having coffee, I would share that my father had his birthday yesterday. He considered the government collapse to be a welcome present, as he doesn’t support the rather conservative parties making up the government.

I phoned my father yesterday and he told me he’d also gotten some type of signal converter, so that he can read the status of his heating on his computer. I sent him a Kate Rusby CD, but it isn’t due to arrive until like the 25th.

If we were having coffee, I would share that I have been quite creative lately. I made a bath bomb on Thursday. I might take it with me into the bathtub later this evening.

My one-on-one staff also helped me bake cookies yesterday. Well, she did most of the prep, as the dough was too sticky for me to handle. That was a bit frustrating. The cookies were delicious though.

If we were having coffee, I would tell you that I had a long phone call with my husband yesterday. I am not going to go to our house this week-end, but I loved to hear his voice instead.

If we were having coffee, lastly I’d tell you that I’m hoping to get an AFO (ankle foot orthosis) for my left foot soon. The physical therapist already E-mailed the orthopedic equipment maker, but we haven’t heard back from him. Walking is still doable without the AFO, but when I go for long’ish (like twenty minute) walks, my foot drags. This is a little painful. It also causes my shoe to get damaged quite easily. In fact, even though the orthopedic shoemaker had already put some type of buffer thing on it, the shoe was almost beyond repair after three weeks. Anyway, I’m hoping the AFO gets here soon and will be helpful.

If not, my father mentioned that, back when I was little, the doctors had mentioned surgery to lengthen my calf muscle. That probably comes with its own risks though. Besides, as long as the pain and discomfort are manageable, I don’t think any doctor would want to operate on me just to save me buying a new pair of shoes every month.

What’s been going on in your life lately?

Sky Is the Limit #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Sky’s the limit”. I was immediately reminded of a story in Stephanie Kaars’ book Speciale mama’s (Special Mommies), in which this phrase inspired a mother to challenge her son, Sky, who had severe cerebral palsy, beyond his apparent limits.

It then made me think of how challenging someone beyond their apparent limits, doesn’t mean expecting them to be “normal”. I mean, the phrase which inspired the mother says that her son is the limit. In other words, each child or adult is their own limit of what they can achieve and this should not be defined by the person’s characteristics, such as disabilities.

I don’t have as severe a disability as Sky. I mean, yes, of course blindness is seen as a “major” disability for statistical purposes, but it alone doesn’t qualify anyone for long-term care. Severe cerebral palsy does. That being said, I do have a significant combination of disabilities: blindness, autism and mild CP.

I don’t think these disabilities, or rather the stereotyped perception others have about them, limits me. I mean, of course my disabilities impair me, but that’s totally okay. I am not limited by others’ ideas of what a blind person (as that’s my most visible disability) can or cannot do. Because, you know, even though I am in long-term care with the highest care profile in the visually impaired category, people still sometimes say I’m quite capable for a blind person. No, I’m not.

I am also reminded of the current slogan for the National Federation of the Blind: “I can live the life I want; blindness doesn’t hold me back.” The old slogan was: “With proper training and opportunity, an average blind person can do a job as well as an average sighted person.” This may or may not be true for the hypothetical average blind person, but it certainly isn’t true for me.

Is the new slogan? Yes, I think so. I could really go to university if I pushed harder, maybe. Maybe not, I’m not sure. However, I have no desire to go to university anymore. Similarly, I wasn’t dying living semi-independently. Well, I almost was, if you count the two medication overdoses I took, but those weren’t due to blindness. Then again, I am happy to live in my current care facility. I may still have things I want to improve on, but I for the most part do live the life I want.

#WeekendCoffeeShare (September 6, 2020)

Welcome to another Sunday and another edition of my #WeekendCoffeeShare. It’s past 8PM here, so I’ve had all my coffee for today. Still, if you’d like a virtual cuppa, that’s fine with me. We also have two flavors of Crystal Clear soft drink, neither of which I like, in the fridge, as well as my favorite Dubbelfrisss: apple and peach. Let’s have a drink and let’s catch up.

If we were having coffee, I would tell you that I’m still a bit tired. Like I said on Friday, I was sick on Thursday with diarrhea, nausea and a low-grade fever. Thankfully, the fever was gone by Thursday evening and so far hasn’t returned (yes, I did get it checked). However, I’m still very tired. I wasn’t yesterday. It could be a delayed case of sleep deprivation, as Friday night I got only a few hours of sleep.

If we were having coffee, I would share that yesterday, we had another online meeting of the cerebral palsy charity’s chapter in my province. It wasn’t as eye-opening as the one we had in July, but it definitely was interesting. We discussed whether COVID-19 has a more severe impact on CP folk than on the general population – the consensus was that, unless you have co-occurring breathing issues, it doesn’t. Then we discussed fear of suffocating and the reasons for our CP. Some of the participants were oxygen-deprived at birth. Some were not (like me) and some had no idea. From there, we discussed whether it’s useful to have access to your birth-related medical information, since CP occurs before, during or shortly after birth. Overall, I loved connecting to other people. In October, the CP charity will organize some online activities in place of the CP day that would’ve taken place on October 31 if not for the coronavirus crisis.

If we were having coffee, I would tell you that I miss my husband. Like I said on Friday, he couldn’t take the risk of coming by. I really hope we’ll be able to see each other next week.

If we were having coffee, I would tell you that there were quite a few new staff, student staff and people orienting at becoming staff at my home this past week. It was a little chaotic sometimes, because the staff need to explain a lot to these new people.

If we were having coffee, I would share that I had ice cream for dessert yesterday and today. There was hardly any custard and no flavored yoghurt, so I used that as an excuse. I could’ve eaten plain yoghurt of course, but didn’t. I loved the ice cream!

What’s been going on in your life?