February 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means I’m reflecting back on the month that was. Like last month, I’m joining What’s Been On Your Calendar? (or #WBOYC for short).

The month of February, overall, was slightly better than the month of January. This was reflected in nineteen (including this one) blog posts in 28 days, compared to only thirteen in 31 days last month. However, it wasn’t “good” by any means.

On the 14th, we were supposed to have a meeting about my care, but this was postponed because my support coordinator was off sick. It has now been set for this coming Thursday but my assigned support staff told me it may need to be postponed again.

The last few weeks were okay care-wise and there were even a few days when I received optimal care by this home’s standards. On Friday, I told my assigned staff I might not want to leave this home after all, which she translated to my having decided I don’t want to leave. On Monday I tried talking to her about improvements that would make my life better here, but this led nowhere. Now I’m pretty sure that, since any attempt on my part to talk about improving my care situation leads to “but you can’t expect continuous one-on-one” before I’ve even stated my wishes, I’ve pretty much lost trust in everyone for good. And just so you know, this wasn’t my first attempt to talk about improving my care.

Craft-wise, I didn’t do as well as I’d hoped. I gave up on The Artist’s Way after barely a week and I didn’t expand on my creativity as much as I’d have liked. I was, however, invited to help decide on the monthly theme in the Dutch polymer clay Facebook group, which became “Unicorns” of course. Like I more or less expected, I was the only one contributing, but oh well. At least for once I could participate.

I did read a lot more than I’d expected in the past month. I have been reading more diversely too. This is related to the fact that I had a discussion with my husband a few weeks ago about queer identity.

Also due to said discussion, I decided to finally abandon Christianity. I’ve been struggling with my faith ever since becoming a Jesus follower at the end of 2020 and part of the reason is my queer identity. And just because I’m happily married to a man, doesn’t mean I need to disown that. I could, of course, still call myself a progressive Christ follower, but who would I be kidding then? If the God of the Bible exists, I’m going to be condemned whether I follow Him half-heartedly or not at all.

In the health department, I’ve been doing pretty well. My cardio fitness level is improving and is almost at below-average level rather than low. I also lost 2kg over the month and only need to lose just over 1kg to be at a healthy BMI. I haven’t heard what the institution nurse said yesterday about the cream not working for the burning sensation on my back.

Lastly, I bought a new computer last week, which I’ve now been using for a few days. I’d been dreading Windows 11 for years due to my fear of the unknown I guess, but it works quite similar to Windows 10.

#WeekendCoffeeShare (February 25, 2023)

Posted on by Astrid

Hi everyone on this last Saturday of February. Can you believe we’ll be rolling into March this coming Wednesday already? I definitely can’t!

I’m joining #WeekendCoffeeShare today. I just had dinner, but probably won’t finish writing this post until after my evening coffee at 7PM, since it’s 5:45 and I have one-on-one for an hour in about fifteen minutes. I’m reminded, as I type this, that the other clients’ evening coffee got moved to 7:30, so I’m afraid you’ll have to be content with a Senseo coffee (and so do I). Let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking about your weather, as usual. Ours has been mostly cloudy with some drizzling, but today it’s been sunny at least during the afternoon. Daytime temperatures rose to between 7°C (today, the coldest day of the week) and 11°C earlier in the week.

If we were having coffee, I would tell you that I didn’t do as well with my walking as I’d done last week, but on Tuesday, I did register 124 exercise minutes in a single day, all by walking. It wasn’t a record by any means, but it was the best I’ve done since moving to my current home.

I’m also trying to up my walking speed, because as of this week, I can see my trends on my Apple Watch and this is the downward trend that my Apple Watch claims is the easiest for me to turn around quickly.

If we were having coffee, I’d tell you that I’ve had a pretty good week in the care home overall. So much so, in fact, that, like I said yesterday, I’m not 100% decided I want to leave this home anymore. A lot depends on the outcome of the meeting with the behavior specialist, my support coordinator, assigned staff and mother-in-law next Thursday. In particular, I’m going to inquire about their ideas for me regarding day activities. Ideally, I could work towards going to a day center with part-time one-on-one support. After all, I’d really like to focus on having some actual day structure rather than having “time to rest” (some staff seriously use that term for my unsupported times) every hour at least.

If we were having coffee, I’d share that I asked my assigned support staff to contact the doctor about the burning sensation on my back that I’d mentioned on Wednesday. The way things work here, she had to contact the institution nurse first. The nurse recommended we try some cetomacrogol cream. I think it might indeed be my eczema acting up again. To be honest, the cream isn’t really helping yet though.

If we were having coffee, lastly I would share that my laptop started acting up a little last week, so I ordered a new one. My old one, which I’m still typing this post on, is over 3 1/2 years old and has been used a lot during those years, so really it’s not at fault. The new one has Windows 11 on it, which I’ve been avoiding installing on the old one (assuming it could be installed at all). I really need to look into the differences so that I can familiarize myself with the new operating system before this laptop completely dies. Going to do that now, okay?

How have you been?

The Wednesday HodgePodge (February 22, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday again so I’m joining the Wednesday HodgePodge. Here goes.

1. What do you find is the most boring part of your life at the moment?
There isn’t anything extremely boring about my life, but my life isn’t exciting either. I’d say the thing that makes my life a bit boring is the fact that, due to the way things work at the care home, I can hardly make plans.

2. February 22nd is George Washington’s birthday. You’ll find his face on the US $1 bill. What’s the last thing you bought for roughly $1.00? (.94 €/ .83 £)
I honestly can’t think of anything. I do probably have some cash in my wallet but rarely if ever use it. I also hardly ever go into a store just for something that costs like $1. The closest I could get, when I checked my recent purchases on my bank account, is €1.35 for a box of tissues, but that’s not roughly $1 I’d say.

3. Is it ever okay to tell a “little white lie”? Explain.
It’s never really okay, but it is understandable in some circumstances. Is there a difference? I think so, in that I can see why I or someone else would tell a “little white lie” in some situations, but that doesn’t make it right.

4. What’s the last thing you ‘chopped’? Cherry pie, chocolate covered cherries, a bowl of cherries, cherry vanilla ice cream, maraschino cherries, a cherry lifesaver…your favorite cherry flavored something?
I don’t think I chopped anything recently. Honestly, when I used to cut veggies when cooking myself, given the size I’d leave them, it wasn’t really considered chopping.

I don’t really care for cherry-flavored anything, so give me a bowl of the actual fruit instead.

5. Describe yourself with three words using your first, middle, and last initials.
Okay, this is hard, if for no other reason, then because I don’t have a middle name. My last name does have a prefix though so I’m going with that.
Authentic, Vivid imagination, Weird.

6. Insert your own random thought here.
I have this burning sensation somewhere along my spine that I’ve finally decided I’m going to ask the staff to call my GP about. So far, when I’ve asked the staff to take a look at where I think the sensation originates from, they don’t see anything but I do have a large mole on my back that I’ve been worrying about for months now. A picture of it did get looked at by my old GP back in Raalte and he said it wasn’t of any concern. Let’s hope he’s right and the burning sensation won’t be anything worrisome either.

Gratitude List (January 7, 2023) #TToT

Posted on by Astrid

Hi everyone. I have been struggling a lot lately. I am not the only one in my home – last night, everyone was irritable at least. This among other things caused me a lot of anxiety. To counter these feelings, I’m doing a gratitude list. As usual, I’m joining in with Ten Things of Thankful. Here goes.

1. I am grateful I haven’t caught a cold or the flu (or COVID!) so far. Everyone around me seems to have come down with something. Though cases of coronavirus are on the rise generally too, it seems to be mostly the common cold or flu around here, thankfully.

2. I am grateful I am currently on track with the Bible-in-a-year plan I’m following. Okay, it’s been only a week so far and, though I hope I’ll continue to follow through with it for the entire year, I am not too confident in myself about staying on track. At least I don’t plan on quitting.

3. I am grateful for a visit from my mother-in-law last Tuesday. She initially didn’t plan on visiting this week but thankfully changed her mind because I was already struggling a bit.

4. I am grateful for licorice. I bought some when at the supermarket with my mother-in-law and thankfully put it in my basket in the storage room so that I cannot reach it by myself. For this reason, I still have some left.

5. I am grateful for French fries yesterday. A fellow resident had his birthday, so the staff went out to get us fries and a snack.

6. I am grateful my UTI has gone. Not that I notice any difference in my body’s signals – I wasn’t picking up that I had it and, when I thought I had figured out what its symptoms were, I figured it still wasn’t over. However, I’m glad it’s cleared.

7. I am grateful I was able to teach several staff how to play the card game mau-mau. It was fun.

8. I am grateful for relatively mild weather.

9. I am grateful that, when everyone was irritable and several of my fellow clients were in crisis at night yesterday, the support coordinator stayed in the home for the night. I am grateful that I slept okay’ish in spite of several clients being out of control in the middle of the night.

10. I am grateful a nice staff was my one-on-one staff this evening. I am also grateful another nice staff popped in to say hi every now and again. Lastly, I am grateful that, this evening, my day schedule wasn’t disrupted.

What are you grateful for?

2022: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year, so in keeping with my tradition, I thought I’d do a review of the past year.

I started 2022 by reviewing the forms for my extra care funding application – my extra care had just been re-approved for two years at the end of 2021 – with the behavior specialist. “Extra care” is what I usually refer to as “one-on-one” here, but I’m told by several staff that it’s not technically one-on-one if it’s not full-time one-on-one. Whether that’s true, I don’t know. I made some suggestions for when the application had to be submitted again in two years’ time. With how much has changed over 2022, I doubt any of it will be relevant anymore.

I also started the year with a healthier food plan and by seeing a dietitian. Over the course of the next nine months, I lost about 4-5kg and, like I had hoped, got to a relatively stress-free food plan. I did, towards late summer, start overexercising a little, but I attribute that to the newness of my Apple Watch.

By April, things started to shift a little, as I officially voiced my wish to explore the possibility of my moving to the main institution or another care agency with an institutional setting. The behavior specialist and I created a housing profile with my needs and wants on it and the behavior specialist gave it to the care consultant.

As it turned out, he only got applications sent out to the main institution and to one other agency, an agency in elder care. The reason was the fact that said agency operates an assisted living facility for blind or visually impaired older adults. With the fact that my long-term care funding is blindness-based, it makes some sense, but the place isn’t suitable at all.

I did get to meet the behavior specialist and two support coordinators for the main institution. As it turned out, they did find a place they considered suitable, ie. my current care home. I moved in early October to what from the care agency’s website looked like my dream home. It quickly turned into a nightmare though.

Thankfully, during the timeframe of late November till late December, some things got settled. I’m still finding I feel very easily frustrated with some things in my home and I’m swinging between letting them go (which is very hard for me) and mentioning them (which may come across as me sweating the small stuff).

For one thing, I lost another 6kg during these three months that I’ve now been here. I know I am still overweight by a few kilograms, so in this sense it’s okay, but it does create some difficulties relating to my disordered eating habits. I’d really like to get in touch with the dietitian again.

In other health-related news, I got some med tweaks in 2022. First, I started pregabalin I think in February. Then, in April, I took my first step lowering my antipsychotic dosage.

I also found out during the summer that my kidney function was mildly decreased. I had it retested about two weeks ago and, though it decreased a tiny bit further, this could be because I have a UTI.

Let me also share about my creative endeavors of the year. I did a ton of polymer clay crafting and really loved it. When I moved to my current care home, I for a while had to let go of this hobby, but now I’m trying to slowly reinvent my creative self.

Lastly, faith-wise, I remain a struggling new believer. I am really hoping and praying that God will lead me further on the right path towards Him in 2023.

Being Active Is Making Me Happy

Posted on by Astrid

Hi everyone. Today I want to share all about my active week. I have truly been enjoying my Apple Watch and seeing my stats go up as I move. And of course being physically active is helping me feel better too.

First, last week, my Apple Watch told me that based on my activity level of the week before, I could up my movement goal from 300 to 330 active calories a day. This week, despite my having surpassed that new goal every single day, the stupid watch told me to keep my goal the same. However, there was a reason I was going to get it back to 300, which I will get to in a bit.

However, I first need to tell you about my major accomplishment yesterday: a nature walk! My husband came by for a visit to have lunch at Subway. After that though, he drove to a nearby nature reserve, where we went for a 2.5km walk. Although I did have my Apple Watch as well as my iPhone with me, the stupid watch’s GPS probably didn’t work (or it’s broken altogether), so it didn’t register my walk as a workout. This means I cannot check details such as average speed, hills climbed, etc. My husband did check his Garmin app though and we’d walked pretty fast and climbed a few hills.

I did go for several more walks yesterday. In total, I got in 163 exercise minutes yesterday, all by walking. I got in 122 today so far, which honestly is quite fabulous if you ask me. This does include 18 minutes on the elliptlcal.

Now on to why I’ve lowered my movement goal to 300 active calories a day. I am participating in a weekday challenge on an app called Challenges, hosted by the admins of an Apple Watch-related fitness group on Facebook. In the app, you earn points based on completion of your fitness goals. To allow for fair competition, daily movement goals are allocated individually based on weight and mine was 300, because I weigh 150lbs. Honestly, I’m pretty content with my place in the competition so far. Obviously, since the weekday challenge lasts until Friday, a lot can still change.

I am loving being this active again. It gives me a true mood boost. Of course, my cardio fitness level is still low, but I don’t worry about it as much as I used to. My husband did also point out that smartwatches are mostly purchased by physically active people, so “low” according to Apple may not say much. I did notice that I was huffing from that nature walk, while my husband, despite recently recovering from COVID, had no problem with the walk. Then again, before contracting the virus, he’d go for 6km runs without much training.

Tomorrow, a staff with whom I used to go on hour-long walks two summers ago, will be working my day activities shift. I did go for a 45-minute walk yesterday, so am tempted to try for such a long walk tomorrow. Even if I can’t though, I do have yesterday’s walk to prove that my physical fitness is returning to a better level.

A Rather Frustrating Monday

Posted on by Astrid

It’s past 10:30PM and I’m still wide awake. I just took a PRN quetiapine. My Apple Watch and the staff’s blood pressure cuff are telling me I should be super relaxed, in that my heartrate is 67 even when sitting upright. That’s rather low for me, but not worryingly low or so the staff say. Oh yes, I know normal resting heartrate is between 60 and 100, but mine is usually closer to 100. Oh well.

Today was quite intense, honestly. In the morning, the manager came by to talk to me about my meeting with the behavior specialist last week. She also, of course, told me a new staff would be starting his orienting shifts here and he’d start right this evening. Of course, like all new staff who’ve been hired over the past six months, the first part of the home he’s being introduced to is mine. Can you read my sarcasm? Well, it should be there. I’m rather annoyed at the fact that every new staff starts working on my side of the home rather than the other one. I know it’s probably because one of the clients on the other side gets really irritable when introduced to new staff. Well, maybe I need to show a little more of my irritable side.

Then, the temping agency housekeeper came to clean my room. She left my bathroom in a horribly wet state and left the tap on its hottest setting. Thankfully, that setting is not hot enough to actually cause burns, but it did hurt a little when I tried to wash my hands.

Once my day activities started, I went for a walk. My cardio fitness level was once again low, but it hardly bothers me anymore.

In the afternoon, my staff and I drove into town so I could buy a new pair of shorts for when I go on the elliptical or ride the side-by-side bike. The old pair pretty much falls off my butt. I also bought socks and some presents for my oldest niece, who will be three on Saturday.

In the evening, I went for a short walk with the new student staff, taking his camera and tripod with us to snap some pictures. I cannot yet show them, as I haven’t yet figured out which ones show what.

Then, I wanted to go on the side-by-side bike again, but got really frustrated trying to fasten the belts around my feet. They need to be really tight or my feet, particularly my spastic left foot, will fall off the pedals. That didn’t work out and I got really overloaded, so had a short meltdown.

Later in the evening, when I was alone, I started fretting about my health. That probably caused me to feel spacey. Now that I’ve processed all this in this post, I feel slightly better. It might be the quetiapine is working as well.

Gratitude List (September 2, 2022) #TToT

Posted on by Astrid

Hi everyone. I’m feeling really thankful for a lot of things today. What better time than now to write a gratitude post? Of course, I say that when I’m feeling down in the dumps too. In my opinion, it’s always a good time for a gratitude post. Anyway, I’m joining Ten Things of Thankful (#TToT) as always. Here goes.

1. I am grateful for a good weekend with my husband. We had pizza delivered, which was delicious. We each ordered a salad too, but I decided to eat my pizza first then was full so we had to throw the salad away. I felt a bit guilty about it because of food waste, but, as my dietitian says it, I’m not a replacement for the trash. In other words, just because something gets thrown out if I don’t eat it, doesn’t mean I need to eat it. I shouldn’t have ordered it and I know that for the next time.

2. I’m grateful for my health. Like I mentioned on Wednesday, I had a health scare earlier this week, but it was nothing, for which I’m so grateful.

3. I am grateful for my husband’s good health too. He tested positive for COVID earlier this week but I am so grateful he isn’t very ill with it.

4. I am grateful for no COVID symptoms in myself so far. Let’s hope I won’t get it.

5. I am grateful for my Apple Watch. It truly motivates me to stay physically active. I must admit I do need to watch out that it doesn’t become an obsession though.

6. I am grateful for the care facility’s new side-by-side bike. This is like a tandem bike but, rather than one person riding the bike sitting behind the person steering it, the person on one side has the controls. I just went for a 5.7km ride on it and, for whatever reason, my Apple Watch counted the full 27 minutes as exercise. Granted, I had started a workout manually, so it may not have caught it had I not done this, but well.

7. I am grateful for French fries on Wednesday as a treat from the old student staff who had her last shift. I am also grateful I took the opportunity to sneak to the living room to ask for a second helping, which I then decided to eat while sitting on the couch. It was fun being surrounded by my fellow residents once again, which is a rarity nowadays since I get one-on-one support.

8. I am grateful for a maintain in the weight department this week. I am also grateful the dietitian is mostly satisfied with how I’m doing, although she does worry slightly about the possibility that exercise might become an obsession.

9. I am grateful for Simple Radio, an app on my iPhone (and Apple Watch) that lets me listen to any radio station. I mostly like 1000Schlager Web Radio at this point, because I love the upbeat German songs to dance to.

10. Last but not least, and I initially wasn’t sure I was going to share this in my gratitude post or wait for #WeekendCoffeeShare, but I am so grateful that I just need to share: I am number one on the wait list for a home at the main institution for my care agency. They’re currently in the process of finding a new home for one of the current residents. According to the behavior specialist, it might go quickly but might still take six months before this has happened and as a result I can start the process of orienting there. Six months, in my book, is still super quickly. You all will have to wait for my coffee share post tomorrow for more details, but I’m excited and nervous at the same time. Mostly grateful though.

What are you grateful for?

The Wednesday HodgePodge (August 31, 2022)

Posted on by Astrid

Okay guys, it’s Wednesday again and this means it’s time to join Joyce for the Wednesday HodgePodge. This week, several of Joyce’s questions are related to Labor Day, which is, what, this coming Monday? Time certainly flies. Here are Joyce’s questions.

1. Something you’ve labored over recently?
Nothing really. I don’t have any large projects I’m currently working on, even though I do need to start thinking about what to create for my husband in honor of our wedding anniversary on September 19. I’m in a crafting rut, honestly. I am, however, working hard on my physical fitness. Does that count?

2. How will you rest on Labor Day?
I probably won’t. It’s a regular Monday here in the Netherlands, so I do have my usual day activities. That being said, if I want to rest, I can do so every single day.

3. Margaret Mead is quoted as saying, “I learned the value of hard work by working hard.” Would you agree? Where and how did you learn the value of hard work?
I don’t think I agree. I worked quite hard in school and college, to the point of autistic burnout, but I wouldn’t necessarily say I value hard work all that much. If anything, by working this hard and subsequently suffering burnout, I learned the value of self-care and rest. Then again, I do realize I’m privileged in this respect, in that I got on disability benefits without any trouble as soon as I turned eighteen and sailed through every re-assessment without any difficulty too.

4. It’s National Eat Outside Day (August 31st). Will you? Do you enjoy dining “al fresco” or do you prefer indoor seating?
I had no idea it was eat outside day in the U.S. and it’s past my dinnertime now, so no, I didn’t. I don’t like eating outside anyway.

5. Somehow it’s the end of August. What was the best day of the month for you and tell us what made it so?
The best day of the month was probably the day my husband took me for a drive to Enkhuizen, 100km away, just for some fish. Either that or last Monday, the day I scored 200% on my Apple Watch’s Movement goal, 300% on my exercise goal (but somehow there’s no medal for that) and received reassuring news on my latest health scare. You see, over the weekend when I was in Lobith, my husband noted a large mole on my back and told me to see my doctor about it. Thankfully, it was nothing to worry about at this point and my staff suggested we keep the picture they took for reference should the mole change.

6. Insert your own random thought here.
Today was the last shift for last year’s student staff here. She treated us to French fries and snacks, strawberry cake and she gave me two bars of chocolate. And not just any chocolate, they were stroopwafel chocolate bars. Stroopwafels are my favorite type of cookies, so this is truly awesome. I gifted her a handmade bracelet. She did joke that, since I have money to buy myself an Apple Watch, I should’ve bought her a new phone. After all, her old iPhone was in horrible condition and I’d been nagging her to buy a new one for months, which she finally did a few weeks ago (well, a refurbished one, which I personally would never do). I think she’s happy with the bracelet though.

First Week With My Apple Watch

Posted on by Astrid

Hi everyone. I’m not sure whether this post is going to be a tech post or a health post or both, as I want to write about my first impressions of using my Apple Watch. I’m putting it under the “Tech” category, but sharing some of my health stats just so it doesn’t get boring. Oh wait, maybe my health stats are boring too. Oh well.

I got my Apple Watch series 7 on Monday last week, but didn’t get to actually use it until Tuesday evening, because then I got its case and screen protector. I know many people don’t use anything to protect their Apple Watches, but I’m happy I got a sturdy case and a glass screen protector, because I’ve bumped my watch against a wall, chair or table too many times to count already.

I familiarized myself with the use of the Apple Watch with VoiceOver first by reading Apple’s own support page on the topic as well as listening to the relevant podcasts on AppleVis. It’s sad that the Apple Watch user guides on there are all podcasts and none are in text format, because I process information better through my Braille display. One thing both the Apple support site and AppleVis say, is that you need to swipe with two fingers rather than one in order to scroll. I have found this to be incorrect. Either that or I’m doing something wrong all along, but swiping with two fingers does something really weird for me.

I prefer to change most of my settings in my iPhone’s Watch app rather than on the Apple Watch itself, because I do find the screen of the Apple Watch a little hard to navigate. I have chosen the “California” clock face, which is really cool.

I also read most of my stats in the iPhone’s Health app rather than on the watch itself. The reason is the fact that, firstly, they are all in one place there and, secondly, the Health app is easier to navigate than the apps on my watch. I might need some getting used to with, for instance, the heartrate app on my watch.

Most people who have an Apple Watch or know about it, are probably familiar with the activity rings. I did know they exist prior to buying my watch, but didn’t know what they represent. Your Movement ring shows your calories burned during movement relative to your goal. My goal is set to 300, which is slightly higher than the Apple Watch suggested for me (based on the activity my iPhone had recorded, I guess) but still low. The Exercise ring shows your minutes doing exercise, which is any movement equivalent to or more intense than a brisk walk. My goal is set to 20 minutes. Your Standing ring shows the hours you’ve been standing upright and in some motion for at least one minute. My goal is set to 12. The Apple Watch can count steps, but does not display them on the screen unless you install a third-party app for that. It does send your step count to the iPhone’s Health app.

Each week, I believe, you get a report on how you did compared to your goal and a suggested new movement goal for the week. Yesterday, my suggested goal was the same as the one I’d set.

On Apple Watch series 7 (and some older models too, I believe), you can measure your cardio fitness level. This is done using an estimate of the maximum amount of oxygen your body can process during movement (VO2Max). This is estimated during each brisk walk or run outdoors. On Friday, I had my first estimated cardio fitness level result and my VO2max was 22.9. This is “low” or so the watch said and it doesn’t get lower than “low”. As it turned out, at 24, I’d cross the border to “below average”. I managed this once.

I do want to add here that I got in nearly three times as many exercise minutes compared to my goal three times this week. I also reached 200% of my movement goal yesterday, burning 600 active calories. I actually burned off over 2200 calories that day and I hadn’t even been on the elliptical. Yay me.