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.

My Ideal Ways of Spending My Day

Posted on by Astrid

Hi everyone. I have been thinking about ways in which I would like to spend my days if I get to move to the main institution. Like I said yesterday, each client has their own day program, so they aren’t required to go to the day center by default. I also will keep my one-on-one support at least until December of 2023. In today’s post, I want to share my ideal ways of spending my days. These are things I might be able to implement should I remain here, but I’m dreaming big here and thinking of ways the institution could accommodate me too.

First, I would like to start my day in my room like I currently do. I don’t think I can handle eating breakfast in a group as of yet. That might change in the future. I would like to eat all my main meals in my room, but go to the living room for coffee breaks when I want to.

Ways I would like to spend my day, include crafting of course. I would really like to keep on doing my polymer clay work and maybe even sell it in the day center’s shop.

The day activities I am thinking the institution could help me meet my dreams with, are those related to sports and physical activity. I know the institution has a small swimming pool on grounds and I’d really like to use it. I’m not sure whether they might have exercise equipment too, like the type of equipment you’d find in a gym. If they do, I’d love to utilize that too.

The institution is in a rural estate area, so I’d love to go for walks on grounds. I’ll take my iPhone (by then, I might have a new one, who knows?) to take pictures of the beautiful nature.

I’ll hopefully at some point be able to take short walks on grounds on my own too. For that, I’ll need orientation and mobility training from the blindness agency, but I’m sure I can get that.

I may occasionally want to relax in a snoezelen® room. Then again, if I’m correct, I can keep my weighted blanket if I move within this care agency, so I might not even need a snoezelen® room.

I’ll probably also want to go to a day center every once in a while to socialize with other clients. The institution has three day centers I believe, but I’m pretty sure clients from the home I might go to won’t go to all three. That’s okay though, I’ll find out what suits me.

#WeekendCoffeeShare (September 3, 2022)

Posted on by Astrid

Hi all on this beautiful first Saturday of September. I for whatever reason keep typing “July” rather than “September”. Maybe that’s me wishful thinking. Anyway, here’s my post for this week’s #WeekendCoffeeShare. I just had my afternoon coffee, but the other clients are currently having theirs, so I bet there’s still some left for you. Let’s have a cup of coffee (or another drink, if you so prefer) and let’s catch up.

If we were having coffee, I’d start out by asking about your weather. Ours is beautiful. Today, we’re supposed to get daytime temps of up to 27°C. On Monday, the temperature’s even forecast to rise to 30°C. I guess my husband was wrong a few weeks ago when he predicted that it’d get only colder from that point on.

If we were having coffee, I’d tell you about all the physical activity I got in this past week. I got in a total of 330 exercise minutes according to my Apple Watch this week so far, exercise being anything at least the intensity of a brisk walk. I guess this means I can up my goal from 20 minutes to at least 30 a day. Then again, I badly want to reach it everyday.

If we were having coffee, I would use the rest of this post to share the details I promised you all in yesterday’s post about the potential new care home. You see, on Thursday at 2PM, the behavior specialist came by my room. The appt had already been planned or so I believe, because of the situation I shared a few weeks ago about an application having been put in for me to live at a senior citizens’ home for the visually impaired, a place I don’t consider suitable. I knew from my care facility’s manager that she understood this place doesn’t sound suitable indeed and also that she had heard that the people at the main institution for my current care agency, with whom I’d met at the end of July, were pretty enthusiastic about me. However, the manager didn’t expect to hear anything from them until next week.

Well, as it turned out, my behavior specialist had planned a meeting with the behavior specialist whom I’d met in July as soon as she could, which was last Thursday. It turns out I am number one on the waiting list for a home at the main institution. The home caters primarily to people with moderate to severe intellectual disability with a need for intensive support due to additional problems such as autism, attachment issues, etc. The level of intellectual disability is significantly less severe than in my current home, so I can actually make smalltalk with the other residents. The staff offer help with activities of daily living (personal care) where needed. Each resident has their own day program. This means that residents aren’t required to go to the day center by default. In fact, some of the residents go some of the time, others ride their bikes around institution grounds, while still others can’t leave the home unsupervised.

I told my husband about this home and he immediately replied that it sounds perfect. Well, I said, that isn’t possible, but it does sound pretty good indeed.

Of course, I am on the wait list, so there currently isn’t an available room, but the behavior specialist said they are working towards finding a new home for one of the current residents. She said it might go quickly but it might still take six months or so. Well, if you ask me, even if it’s going to take six months, that’s still super quickly. That’d honestly mean I’d have found a place within the year from saying I want to find a more suitable home.

I will get an extensive orientation, getting to look around at least twice before I decide whether I want to move to this home. I am both nervous and excited. Mostly quite excited though. I’d read up about this home before and wished I could live here and now my dream might come true.

How have you been?

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.

Early Memories of Physical Activity

Posted on by Astrid

A few months ago, I read on another blog about Carrie Underwood’s book Find Your Path: Honor Your Body, Fuel Your Soul, and Get Strong with the Fit52 Life. One of the aspects that immediately appealed to me in the book, are the journal prompts. Yes, duh, you know, I’m a sucker for journal prompts. However, Carrie Underwood’s journaling prompts are not just random one-liners, they’re deep questions. One of them is about early memories of physical activity. Today, I want to share my thoughts on this.

As a young child, I loved playing outside. I used to build sandcastles in the wooden sandpit my father had built, not even caring that the wood hadn’t been treated so it got moldy every once in a while. I remember telling you all the story of how my father used to call my Kindergarten friend, whose last name translates to Peat in English, “Kim Mud”.

When I got older, I loved learning to rollerskate. I remember joining an informal neighborhood rollerskating “club” led by the oldest of two girls who lived next door. She was my age and could rollerskate real good or so we all thought. I wasn’t nearly as good or even as good as my own younger sister, but who cared? I didn’t.

I got a large tricycle when I was about seven or eight because I couldn’t ride a bike due to my cerebral palsy. Not that I could safely ride a bike, given my visual impairment, but apparently the rehabilitation physician had no idea. I occasionally rode my tricycle, but preferred to walk around the neighborhood.

However, by age seven or eight, when I started to lose my vision, my physical activity level also started to decrease. I am pretty sure it’s more than just my vision though, but there’s no way to prove this as my parents stopped taking me to specialists around that age. I am considering asking my GP or the intellectual disability physician at the care facility for a referral back to rehabilitation medicine, because I want to learn to make the most use of the mobility I do have.

I did till my mid-teens love to sit on the swings. I’m not sure that counts, as it is a sedentary activity, but you do move your legs pushing yourself. I would go on the swings for hours on end. Now though, I get dizzy even going on the swings for five minutes at a time.

A thing I also did from toddlerhood until I moved out of my parental home at age nineteen, was this crawling-in-place movement while in bed. By the time I hit adolescence, my parents complained that I ruined the bed and made too much noise, but I continued to move in this way exactly until I moved to the independence training home. I could do this for hours on end too and I now realize it’s probably a form of autistic stimming.

Overall, I wasn’t physically active in most of the traditional ways. I wasn’t in sports as a child and P.E. was one of my least favorite classes. However, I can’t say I sat on my butt all the time. I didn’t even as an adolescent, though I probably was more sedentary then than I should have been.

How about you? Were you physically active as a child?

Joy in August

Posted on by Astrid

Hi all. It’s the end of the month once again and this means I’m reflecting on my word of the year, which is “JOY”. I am linking up with the Word of the Year linky as well as with Lisa’s One Word linky.

The month of July was hard and it ended on an even more difficult note with a health scare. Did I even tell you all about it? Well, I had bloodwork done at the end of July as part of my annual health screening and, while most results came back normal, my EGFR, an indication of kidney function, did not. It’s supposed to be above 90 in healthy adults, had been 81 last year and my nurse practitioner back then had said that anything above 70 was still acceptable. Well, it was 68 this time around. I checked with my GP and he said this could be a one-off lower score, but I do need to be checked again, including a urine test, in a few months.

This health scare, as well as some other worries about my health, did decrease my joy over the month of August. However, I still tried to find moments of joy in the everyday. Like in July, I did sometimes seek joy in material things, for example when I bought a lot of polymer clay supplies a few weeks ago.

However, I also found joy in experiences, such as my and my husband’s trip to Enkhuizen last week and my trip to the town fair yesterday (even though I didn’t buy anything).

Earlier this week, I of course tried to find joy in another material thing by buying an Apple Watch. It’s pure delight seeing how I reach and even exceed my goals. That being said, I did have another health scare today, when the stupid thing told me my cardio fitness level is low. “Low” is the lowest score your Apple Watch will give you. My husband joked: “except for ‘dead’, but that’s not far off.” Great, huh? Thankfully, I do know I can to a degree increase my cardio fitness level by exercising. It is good to feel some sense of control.

The Wednesday HodgePodge (August 24, 2022)

Posted on by Astrid

Hi everyone. I’m late today to write my contribution to the Wednesday HodgePodge. Joyce titles her post something about blueberry waffles, but I’m afraid I ate the last of my blueberries yesterday and I don’t have any waffles either. Oh well. Here are Joyce’s questions.

1. August 24th is National Waffle Day…what’s something you’ve “waffled” on recently?
I’m not sure what to “waffle” means exactly – and to be honest had never heard of the word “waffle” as a verb before. Then again, according to my intro to linguistics professor at uni, every noun in English can be verbed. Anyway, according to a Google search, it seems to mean to blather on about something. Which I just did, I guess. A recent topic I’ve been blathering on about though has been my Apple Watch, which I finally ordered on Sunday and have been fully using as of today.

2. Do you like waffles? Make your own or ‘leggo my Eggo? Any favorite toppings or add-ins? Waffles or pancakes-which do you prefer?
I like good homemade or bakery waffles, but don’t really care for store-bought waffles. I prefer pancakes though. For toppings, both on pancakes and waffles, I love powdered sugar, summer fruit, raisins and/or nuts.

3. Do you have any momentos from this summer (or past summers)? What do you do with them?
I don’t think I do, but once again I’m not sure what momentos are. Are they like souvenirs? In that case, no. I almost got myself something on my and my husband’s day trip to Enkhuizen last Saturday.

4. One thing you’d like to do before summer ends?
Go to the town fair. It started today with a sensory-friendly fair experience with activities such as a merry-go-round etc. I’d like to see the market stalls though, which will be there from tomorrow until Saturday. There will also be some pretty good music or so I’ve heard, but I’m likely to go tomorrow morning, because the daytime temperature is supposed to climb to 33°C.

5. Life is too short to…
Worry about my health. Oh well, how I wish I could stop actually worrying about it. Thankfully, my Apple Watch gives me some sort of sense of control.

6. Insert your own random thought here.
Of course, now it’s time to brag about surpassing all three of my activity goals on my Apple Watch today, ie. movement, standing and exercise. I had set my exercise goal lower than the Apple Watch proposed, but my movement goal higher. I’m absolutely loving being able to start workouts on my Apple Watch, something I could never do on my Fitbit because the touch screen is not accessible. I so far really love this new gadget.

Reading Wrap-Up (August 22, 2022) #IMWAYR

Posted on by Astrid

Hi everyone. I’ve been doing a lot of reading over the past week, so I thought I’d share a reading wrap-up once again. As usual, I’m joining It’s Monday! What Are You Reading? (#IMWAYR). Here goes.

What I’m Currently Reading

After I finished my last book on Saturday, I was thinking of starting a memoir. After looking through Bookshare’s biography and memoir category for a bit and reading the summaries of several books, I finally settled on All My Friends Are Invisible by Jonathan Joly. This is a memoir about the author’s life growing up surrounded by imaginary friends. I’m pretty sure that, further yet, the author could be diagnosed with dissociative identity disorder, but so far this term hasn’t been mentioned.

Other than that, I picked up My Heart and Other Black holes by Jasmine Warga again. I’m not sure why I even want to finish it, other than to prove to myself that I can finish a book that doesn’t deserve at least a four-star rating. It’s so predictable. Maybe I’m hoping for some intriguing plot twist, but so far at 62%, no such luck.

What I Recently Finished Reading

I finished two books in the past week. One is Six Weeks to Live by Catherine McKenzie, which I reviewed on Tuesday. The other is a winter special in the Unicorn Magic series by Daisy Meadows called Snowstar and the Big Freeze. This chapter book was the perfect antidote to the hot weather. Or something like that. I honestly don’t know why I picked it in the middle of August, but I did and it was good.

What I Think I’ll Read Next

I once again have no idea. I’m a true mood reader, so whenever I finish a book, I grab whatever strikes my fancy next. That’s how I got to pick the Jonathan Joly memoir too. I mean, I literally hadn’t heard of it minutes before I started reading it. So yeah, I might read another chapter book on magical creatures, since I have several downloaded off Bookshare. However, I may also be in the mood for another thriller. Who knows? I currently don’t.

What have you been reading recently?