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 (July 2, 2021)

Hi everyone! Can you believe the first half of 2021 is over already? I certainly can’t. Today, I’m joining #WeekendCoffeeShare. I just had my afternoon soft drink. If you want one too, I bet there’s still some left in the fridge. I can also make you a Senseo coffee if you want it. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk a little about the weather. It’s okay. Most of the past week, it’s been raining, but I still got time to go outside inbetween rainfalls. It was a bit chilly for summer early in the week. Today and over the weekend, temperatures are supposed to rise to above 20°C.

If we were having coffee, I’d also tell you that most of the pandemic restrictions were lifted last week. They however had only been lifted a few days when news got out about the delta variant of the coronavirus soon becoming dominant. Thankfully, the Netherlands has quite a high vaccination rate, so I have my hopes up we won’t enter a full lockdown come September. After all, my husband and I celebrate our tenth wedding anniversary on September 19 and we really want to finally be able to do something fun.

If we were having coffee, I would share that this week was a truly mixed bag mental health-wise. I did enjoy some activities, like jewelry-making. Last week was my 35th birthday and I got a bunch of supplies as a present. When being engaged in creative activities, I do genuinely feel some level of contentment, if not happiness.

However, there have also been times when I felt incredibly left out and hopeless. Like I said two weeks ago, the manager indicated that I cannot get more support than I’m getting now. Sometimes, I’m okay with this, but at other times, it really frustrates me.

If we were having coffee, I would share that I’ll finally start my topiramate this coming Sunday. The longer it takes, the less hopeful I am that it will actually help. We’ll see though.

If we were having coffee, I’d tell you that, on Wednesday, some type of staff support person came to observe and help the staff with some situations with other clients and with me. She offered some ideas for easing transitions for me. When I’m doing okay or sort of okay, they help, but when I’m very distressed, they don’t. I’m still unsure as to how I can ease the many transitions I face during the day.

If we were having coffee, I’d update you all about my situation with the possible UTI I talked about two weeks ago. Well, it isn’t a UTI. What it is, no-one seems to know or care about. I was told to take naproxen and paracetamol and, when this week I reported that they helped some, was just told to continue taking them for another month. A month! I mean, seriously?! I feel quite frustrated about this.

If we were having coffee, lastly I’d tell you that my sister and her family are visiting me and my husband in Lobith tomorrow. My husband gave me the choice between taking a ParaTransit taxi and him picking me up at 10AM. Since my sister won’t visit till 3PM, I decided to take the taxi. I still have my entire kilometer allowance, since I haven’t felt comfortable yet using the taxi due to COVID-19. My taxi should arrive here in Raalte by 12:30PM. It’s normally a little under a ninety-minute drive to Lobith, but the taxi service might be late and/or combine my ride with someone else’s. However, if I schedule my ride earlier, I won’t be able to have lunch. Fingers crossed the taxi won’t be late.

How have you been?

Birthday #WotW

Hi all on this beautiful Sunday! It’s already 8:30PM as I start typing my post. It’s my 35th birthday today and I spent most of the week stressing about it and the weekend celebrating it. For this reason, I’m choosing “Birthday” as my word of the week, even though the week is practically over already.

Early in the week, I talked over my birthday with my husband. I had already invited my parents to come over to Lobith today. They hadn’t seen the house since we’d bought it, or the inside of it at all for that matter. My parents need to drive over two hours from their home to Lobith and I’d asked them to drop me off at the care facility in Raalte on their way back. For this reason, I pretty much felt obligated to invite them over for dinner in Lobith. However, this also stressed me out, as it would mean I wouldn’t be in Raalte till like 8PM, by which time my one-on-one would’ve left.

My husband told me I could text them with a time proposal for them to arrive, like early afternoon. That way, they still had some hours to be with us and could still be dropping me off in Raalte and arrive home at a reasonable time. My father doesn’t text and my mother doesn’t drive, so I texted my mother to ask her if this was okay with both of them. It was.

Yesterday, my mother-in-law picked me up in Raalte and we drove to my in-laws’ house. It was good to be there. I in fact had only been there once since the pandemic started. Before then, and especially before I went into long-term care, I’d be at my in-laws’ at least once a week on average. I always loved walking their dog, a black lab called Bloke. My mother-in-law and I walked him again yesterday.

For dinner, we indeed had lasagne and indeed without celery. It was great! I also had a Magnum Billionaire ice cream for dessert.

I also got lovely presents. One of my sisters-in-law had been sent shopping for the largest Rituals gift box she could find. I think it’s amazing!

Today, like I said, my parents visited. I don’t have the greatest relationship with my parents. Like usual, my father kept infodumping on his interests, which he was able to relate to our house in Lobith, since he practically renovated my parents’ house on his own. I could hardly get a word in, but my husband seemed interested. I made some smalltalk with my mother.

The presents I got from my parents, were great though. I had asked them for a surprise box from my favorite beading shop, which happens to be local to them. Aside from that package, I also got another box of jewelry-making supplies they’d found at a thrift store, a turtoise soft toy and fresh cherries and strawberries.

When I returned to the care facility at about 6:15PM, I had dinner: noodles another client and staff had cooked this morning. It was good.

Overall, the day was good. So was the rest of the week for the most part. I seem to slowly be crawling out of the dark pit of emotional dysregulation I was in last week. I’m relatively calm considering the fact that my birthday is a trigger for my C-PTSD.

How was your week?

Word of the Week linky

Looking Forward to Summer

One of Mama Kat’s writing prompts for this week is to share what you’re looking forward to about summer. Summer is my favorite season. I just love the sunshine and warm temperatures, even though I don’t care for temperatures above 30°C. In 2018 and 2019, we had a lot of crazily hot weather, with temps rising to nearly 40°C on several days each year. I don’t like that. However, usually our summers are warm but not hot.

The main thing I look forward to each year, is my birthday. My birthday is this coming Sunday – I’ll be 35. This year, I don’t really have much planned and am a bit apprehensive about it, but I bet I’ll still have fun once it’s there.

On Saturday, my husband and I are going to visit my in-laws. My husband talked about asking his Mom to make lasagne. Without celery, mind you. Yes, she usually puts a small amount of celery in her lasagnes and, while I am not so picky anymore that I’ll fish it out of my serving, I don’t like it at all.

I haven’t asked my mother-in-law for any specific present, so I’m not sure what I’ll get. Last year, she gave me a giant teddy bear.

On Sunday, my actual birthday, my parents will visit me and my husband in Lobith. They haven’t seen the house since we bought it, so my husband will likely have a lot to show them. I’m a little worried about topics to talk about, as I don’t want to cause tension by bringing up my own issues. My staff suggested I tell my parents that we went to the monkey zoo a few weeks ago or the like.

I asked my husband for an outdoors side table for on my balcony. From my parents, I asked for jewelry-making supplies. I really hope my creative juices will be flowing again soon.

I will probably return to the care facility by about 6PM. During our evening coffee break, I will treat my fellow clients at the care home to custard cupcakes or nut bars (those who can eat those).

As for my plans for the rest of the summer, I am hoping to visit some new places, like the local large playground. Aside from social distancing, most restrictions due to the pandemic will be lifted by this Saturday (hopefully not to return again by the fall). I also hope to go on many walks, as well as sit on my balcony some more.

What are you looking forward to this summer?

Mama’s Losin’ It

Today Is Tuesday, June 8

I really want to write, but I’m feeling pretty uninspired. I already looked through my collections of journaling prompts, of which I have many. However, even though a few prompts spoke to me, I just couldn’t get myself to put fingers to keyboard and actually write. Until now, that is. Instead of writing an actually meaningful post, I’m just going to freewrite.

Today I got my original Braille display, the one with the water damage, back. The technician also explained why this model can’t handle even a little water on it even though the old model, the one that got the cup of tea over it seven years ago, could. This model’s Braille cells are somehow covered, so if water enters them, there’s no way it’ll get out. He didn’t explain the point of creating cells like this, I mean, what would make them better than cells that haven’t been covered like the ones in the old model. I think it might even be an effort to make the Braille displays not last as long, but of course the technician wouldn’t say so.

In the afternoon, my mother-in-law visited me. We drove to a relatively nearby forest and went for a short walk. Then we had coffee and apple pie. We also drove by a supermarket, where I got blueberries and fruit gums. The fruit gums, I already consumed.

Both my mother-in-law and my husband have been asking me what I want for my birthday, which is on the 27th. I have asked my parents to order from a specific jewelry-making store which is local to them. For my husband and mother-in-law, I really don’t know what to ask for. I mean, I’ve been tempted to ask for the interactive cat my mother-in-law originally wanted to buy me last year. Then again, that thing is over a hundred euros.

In the evening, I did a little more walking and had coffee. I more than reached my water intake goal for the day. I use the Water Reminder app on my iPhone again. It’s a pretty good way of keeping track of my fluid intake, as it also allows me to track other beverages. And just so you know, yes, it actually takes away water when you drink alcohol. That makes me believe its calculation of amount of water in beverages is pretty accurate.

I also read my Bible again. I decided to pick it up in Genesis where I left off when starting to read Daniel on Sunday. I don’t expect to be reading all the boring Old Testament stuff, but for now I’m at least sticking to a Bible reading habit.

And a writing habit. See? I can really make myself create a blog post if I just want it badly enough. And I do, since WordPress is now keeping track of my blogging streaks. Yay me!

#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?

Mother’s Day

Today is Mother’s Day in the United States as well as here in the Netherlands. I’ve seen lots of ads for it floating by for weeks. It’s probably been this way forever. That being said, I never quite paid much attention to Mother’s Day after getting out of elementary school. Back in the day we did the obligatory Mother’s Day crafts. Since my mother has her birthday in late April, she never quite cared (or we conditioned her not to).

I started caring again, at least a little, when I got out of the psychiatric hospital and started day activities at a center for people with intellectual disability. Most other clients still made crafty things for their mothers. I decided to join in and create something for my mother-in-law.

You see, I have never had the best relationship with my own mother. She no doubt loves me, but the way she expressed it when I was growing up is, well, kind of odd.

That plus my mother’s late April birthday means I never quite honored her for Mother’s Day. My mother-in-law though has her birthday in late November.

My own parents have always been big on independence. I understand, but they took it a bit too far given that I’m multiply-disabled. They pretty much left me to my own resources by the time I left high school at age nineteen.

My mother-in-law, on the other hand, has offered to be my informal representative with my care agency. This means that she’s invited to care plan meetings and would be appointed as my guardian should I ever become incapable of making my own decisions.

One time before I was dating my now husband, I too had to appoint an informal representative for a living facility I was on the waiting list for. I appointed my father, but wasn’t happy about it. I do trust my parents to leave me to my own resources, but I don’t trust them to be there when I actually do need them. What I mean is, I am confident that they won’t approve of restrictive care measures without my consent, but I am pretty sure they will rather advocate for me to be kicked out of care.

With my mother-in-law, I am pretty much on the same page. I am not sure she’s seen my current care plan, but she has talked about it in a way that suggests she knows and understands my need for intensive support. Even my husband doesn’t know some details she appears to be in the know about.

My husband jokingly calls my mother-in-law my adoptive mother. If adults can adopt a mother, that’s quite exactly her. I am glad to have her. And just in case you were wondering, yes, my own mother is happy for my mother-in-law to be my informal representative.

A Wonderful Wednesday

Hi everyone. This is going to be a quick post. I am really pleased with myself right now. Today is a great day. The sun shone, the birds sang and I broke my daily step record!

In the morning, my day activities staff took me to the marketplace. We got fried fish for lunch. We also wanted to get fried chicken, but the poultry guy didn’t have that today. I also got cookie crumbs (yes, they’re a real thing). They were €2 a bag but two bags for €3, so I treated myself and got two bags. One of them, I already consumed. Then we walked to the supermarket to see if they had fried chicken and they did!

I also went on a walk before going to the marketplace. We went there by car and I didn’t look at my Fitbit until we were back. I wasn’t expecting to have gotten in many steps, but already had nearly 5,000 steps.

Then in the afternoon, my mother-in-law visited me. We went on over an hour’s walk together. The sun was shining brightly and it was really warm, about 24°C. I truly loved the birdsong, the ability to walk and the sunshine!

In the evening, I went on two more walks with my one-on-one. I got in over 19,000 steps, so just yet, I did a little dance just to get to 20,000 steps. That’s double my daily step goal. I broke my daily step record, which was at just over 17,000 on December 18, 2020.

I also got in 173 active heartrate zone minutes. I wasn’t really exercising for nearly three hours today, but the minutes I got in the cardio zone, count twice.

I did worry a little about my heartrate not returning to normal nearly as fast as my mother-in-law’s. Then again, she is of average build, while I am, as much as I hate to admit it, still obese. I’m trying not to worry too much, since my resting heartrate is still within the normal range.

Overall, today was a wonderful day! Unfortunately, the temperature is supposed to drop to a high of like 13°C tomorrow. It’s not supposed to rain though, so I can still walk. That is, if my muscles don’t ache all over.

Good Enough

Today’s optional prompt word for #LifeThisWeek is “Good”. Denyse takes on a cynical approach to the word, which reminds me of the many degrees of being called “good” I experienced.

In my elementary school years, my parents were in a constant fight with the schools for the blind I attended about my educational needs and my potential. According to the school, I was a good enough student. That’s the literal translation of the words that appeared on my report card often. Sometimes, when I was better than average, just “Good” appeared.
My parents thought I ought to get some more recognition. They thought I was excellent, sublime, a genius.

My schools thought I should be going to their secondary school program, which at the highest level catered to average students. My parents believed I could do far better.

I doubt, to be very honest, that my teachers truly didn’t see that academically, I was above-average. At least some of my teachers must have seen this. However, socially and emotionally, I was significantly behind. This was probably the real reason my schools recommended I continue in special education. My parents disagreed. They felt that I would be overprotected and underestimated in special ed. They might’ve been right. We’ll never know, since my parents took me from educational psychologist to educational psychologist until they had the recommendation for mainstream high level secondary education in their hands.

What I do know, is that I ended up being overestimated and underprotected. My parents would love to deny this and blame the staff in independence training for essentially setting me up for long-term care. Agree to disagree. Then again, we’ll never know, because I didn’t go into independent living and on to university right out of high school.

Sometimes, I wish I was just the average, good enough student that some of my teachers saw me as. Then at least I wouldn’t have to face the enormous challenge of both a high IQ and an emotional level comparable in many ways to an 18-month-old child. Then, I might not be writing blog posts in English, but I also might not need 24-hour care.

Then again, I enjoy writing blog posts. I like my care facility. Life is good enough for me.

Truthful Tuesday: Birthdays

Hi all! It’s Tuesday and I’m feeling a little better still than I was yesterday. I’m still having a cold, but it’s mostly manageable now.

Today I’m participating in Truthful Tuesday. This week’s question is: as you have gotten older, do you still celebrate your birthday, or has it become just another day to you?

The presumption behind this question is that, as we get older and the effects of aging become less positive than they were when we were a child or teen, some people no longer appreciate their birthdays.

I find, and maybe this will change when I get even older, that the opposite is true. I will be 35 in June and have found that, with increased age, does come increased wisdom. I am probably not old enough yet to start feeling depressed about my life’s regrets. That doesn’t mean I don’t have many, but they don’t weigh me down that much as of yet. I hope that won’t come either, but I’m pretty sure it will.

In contrast, when I was a child, I feared growing up. My birthdays were fun because of the gifts I got, but that’s about it. I never felt that flash of excitement that some children and teens feel as they get older. No, not even (or especially not) when I turned twelve, sixteen or eighteen.

When I turned 30 in 2016, I did have some mixed feelings. I was excited to be allowed into the over-30s groups on Facebook but also felt that, at my age, I could no longer have emotional outbursts. I still did. That latter feeling subsided over time though as I realized a neurotypical ten-year-old wouldn’t have meltdowns like mine.

My birthday has always been an exciting yet stressful event. Now though, it’s more exciting than stressful usually. My parents don’t make a point of telling me to act grown-up anymore. For this reason, them visiting me for this occasion – usually the only time a year I see them in real life -, is mostly fun.

I do indeed still celebrate my birthday. Months in advance, my husband starts asking me what I want for my birthday. It’s also a bit of a tradition that he takes the week around my birthday off from work.

Most years, I spread out my birthday party over several days, as I don’t want to have the house full of visitors. Last year, the visiting restrictions due to COVID were lifted the day before my birthday. This meant that my parents could actually take me out for a ride in their car rather than having to sit in the care facility’s garden for the entirety of the visit.

My mother-in-law visited me the day before and brought me the giant bear soft toy. That’s another thing that makes birthdays fun: I love getting gifts. Of course, I can buy myself the things I really want too, but I actually like the fact that people give me something I wouldn’t buy myself.

Maybe, now that I’m inn my thirties and don’t have to act grown-up, as I’m on disability and in long-term care, I can finally feel the excitement of being a kid at heart.