January 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone on this final day of January. Last year, I loved looking back on each month as it related to my word of the year. I didn’t choose a word of the year for 2023. Not sure why, but I just couldn’t find one. I however do like these monthly reviews, so I’ll continue them. The monthly word of the year linky has also changed to #WBOYC, which is an acronym for What’s Been On Your Calendar. I’m joining in with this linky today for my monthly reflections.

This month, I started out with mixed feelings of hope and fear for the coming year. Just before New Year’s, my assigned staff had introduced the piece of paper with agreements re my care on it, which was slightly disappointing to me because of it being easy to interpret in multiple ways. As the weeks proceded, I found out that, indeed, it didn’t do much to improve my care. In fact, I still live moment-to-moment, not because I can’t get through each moment due to my mental health, but because the staff and home in general are so unpredictable.

Several weeks ago, I decided I definitely want to find another care home. This, obviously, requires a talk with the behavior specialist and support coordinator, but, so far, my support coordinator hasn’t responded to requests to share when she is available. I have it in my head she’s decided to ignore me until I shut up about wanting to leave. After all, several staff have started to talk nonsense about baby steps towards adjustment, and I’m pretty sure they don’t mean the steps towards adjustment should come from the staff. Even though I do experience good enough days here and there, I won’t shut up though until structural changes mean good enough is going to be the norm, and I’m sure this isn’t going to be here.

In other news, I had three visits from my mother-in-law during the month of January. I also saw my husband almost each week – missed only one because I had a cold.

I started working with the book The Artist’s Way at the end of the month. I’ve only just started with Morning Pages and am taking the program at a slower pace than is recommended, partly because I’m a slow reader and partly because I need to modify the Artist’s Dates to suit my needs. For example, since I don’t handwrite my Morning Pages, I have no reason to give myself a sticker on the envelope each day I completed them, and I can’t use regular stickers anyway. However, I saw 3D unicorn stickers and want to buy those and stick one on my laptop for each day I complete my Morning Pages for a week. Of course, since they are sold online, I may need to have them delivered to my in-laws because my care home’s address isn’t always recognized by delivery people. I’ll get to that tomorrow.

I wasn’t as crafty as I’d like to have been, but did slightly expand my horizons where it came to polymer clay, in that yesterday I started on a unicorn in a lying-down position and today I tried to decorate my latest standard, sitting unicorn with Hotfix rhinestones.

I didn’t write as many blog posts as I’d hoped during January. Of course, there was #JusJoJan, but even when the prompts did speak to me, I often didn’t write. I am still considering participating in #Write28Days in February, but honestly haven’t written anything for it. Not that I had any of the previous years I took part either, but then I was more motivated.

I did for the umpteenth time revive my Instagram account. This time, I’m actually finding some joy in it, because I actually find that I can interact with some people on there.

In the health department, January was a true mixed bag. I did get moving sufficiently, particularly walking, but healthy eating was a huge struggle. Over the month, I maintained my weight, so still 3kg to lose for me to be at a healthy BMI.

Lastly, I did attend the cerebral palsy online meeting for the provinces of Gelderland and Utrecht this evening. It was good. There will be a live meeting in March, so I’m hoping to go there too.

Five Things That Bring Me Joy on Bad Days #5Things

Posted on by Astrid

Hi everyone. I have been feeling notoriously uninspired lately and still don’t really feel like I know what to write about. However, I saw this week’s topic for the #5Things challenge: things that bring you joy when you feel “joyless”. In other words, we’re challenged to list five things that bring a smile on our face when we have a bad day and nothing else can seem to cheer us up. Here goes.

1. Food. Good food can definitely brighten even my darkest days. I am a lover of hot and spicy food, but also enjoy candy and savory snacks.

2. A phone call from my husband. Whenever I feel down in the dumps, my husband can usually cheer me up. Sometimes it takes him some firm setting my mind straight before I am open to cheerful talk.

3. Music. I love upbeat music, including Dance, contemporary Christian and occasionally rock. At other times, calming music is just what I need.

4. Physical activity. When I can motivate myself for it, a walk or some other form of exercise truly helps me clear my mind of all its negative energy.

5. Retail therapy. I can be a bit of an impulse spender when I’m feeling bad. Thankfully though, even online window shopping helps me feel better at times.

What helps you feel better when you’re feeling down?

Gratitude List (September 16, 2022) #TToT

Posted on by Astrid

Hi everyone. Right now I’m very hyper because of some really great news I just received. I’ll get to that at the end of this gratitude list, so you’ll have to be patient (or skip ahead). As usual, I’m joining Ten Things of Thankful with this post. Here goes.

1. I am grateful for my improved physical fitness. My cardio fitness level according to my Apple Watch is still low, but it’s slowly creeping up. My heartrate recovery is within the “good” range though. Granted, the watch only measured it after brisk walks, since I can’t run.

2. I am grateful for eggs. The guy from the care home next door to ours who has chickens near the day center, lets me check for eggs during the weekends when he’s home with his family. On Saturday, I found one. Then today, he gave me one just because he wanted to.

3. I am grateful the orthopedic shoemaker finally gave in and is going to get me completely orthopedic shoes rather than the semi-orthopedic ones I had been struggling with for the past two years. The semi-orthopedic shoes kept giving me blisters even after he adjusted them many times. For the fully orthopedic shoes, the shoemaker’s coming to measure my feet and make an imprint or whatever in early October. From that point on, it may still take six months before I get the actual shoes, but oh well.

4. I am grateful the orthopedic shoemaker finished repairing one of my regular walking shoes. For those who don’t know, the fronts keep getting damaged within weeks due to my drop foot. Now the shoes are at the main institution, where normally only a transportation guy picks them up to bring them to Raalte once a week on Thursday. The staff here are trying to send someone out there to pick them up on Monday.

5. I am grateful I decided to buy an extra pair of walking shoes.

6. I am grateful for new clothes. I went shopping for them on Wednesday. I bought two jeans and a blouse.

7. I am grateful for iOS 16 and WatchOS 9. I decided to update on Wednesday after all. Both have a few bugs, but not that many that they cause serious problems. Particularly, I am grateful that, after all sound disappeared from my Apple Watch after the upgrade, a restart (with sighted assistance) solved the issue. I am also grateful not to have encountered the bug so far that causes VoiceOver to stop working after restarting your iPhone.

I am grateful for all the new features with WatchOS 9. I love sleep phases and heartrate recovery like I mentioned. I also love that the Translate app on iOS is now available in Dutch too.

8. I am grateful I am doing pretty well on the fitness challenge I participate in this week. I have consistently maintained a position in the upper mid range, around 25th out of 107 participants.

9. I am grateful for a great weight loss result today. I lost another 0.9kg. Last week, I’d lost the same amount. I’m now 66.5kg, which is pretty awesome considering when I came to the care facility I was almost 10kg heavier and I’ve lost over 5kg since starting my food plan in January. I do realize I need to make sure I’m not overdoing it with exercising or I’ll gain all the weight back once the weather’s not so good anymore and subsequently I’ll lose my motivation to walk.

10. I am grateful for some sunshine today. We had rain too, for which I’m also grateful, but I’m happy I could go for some walks outside in the sun.

11. And now on to the great news… I am grateful the main institution home I’m on the waiting list for has a room for me real soon. I will be orienting on Wednesday and the Monday after and, if then I decide I want to move there, moving date has been set for October 5! Remember it’s up to me and, if I don’t want to move there, no-one is kicking me out of here. This is all causing a whirlwind of emotions and thoughts. After all, the only other time I ever requested to move myself, I had to decide within the day of a place having been found and it was the worst decision I ever made. Thankfully, my husband is coming to the second orientation visit with me and my staff will come with me on both visits. Now I’m going to write out some questions I have for the home.

What are you grateful for?

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.

TGIF: Weather

Posted on by Astrid

Hi all. Fridays are usually pretty active in the blogosphere and there are lots of prompts to choose from on this day. Today, I discovered another one, Paula Light’s TGIF. Today, Paula took the opportunity to talk about the weather and for this reason so will I.

Let me start out with the positives: we had some amazingly warm late summer weather early in the week. Not too hot for my liking, although it did get to 30°C on Tuesday, which I understand is too hot for some. Wednesday was the best: some sunshine but some clouds too, no rain and 25°C during the day.

Thankfully, we did get some much-needed rain too. We got a thunderstorm Tuesday night. My Apple Watch registered sound as loud as 82dB during the storm. I wonder how accurate that is, but well.

We also got some rain yesterday as well as today. Today, in fact, it rained most of the day, but I still managed a short walk outside in the morning.

I tried out my orthopedic shoes, which came back from the shoemaker for the umpteenth time. Well, those who’ve read the orthopedic shoe story before can probably guess what’s next. Yes, indeed, I did get another small blister on my right heel after a walk of not even 20 minutes. I’ve told you guys before that the shoes won’t be fixed until 2034 and I’m more and more confident I’m correct after all.

Despite only managing one walk, I did reach my Apple Watch’s Movement goal today. Okay, I did go on the elliptical for just over 15 minutes too. That went surprisingly well, honestly.

Tomorrow, if we aren’t getting lots of rain in the morning, I’ll likely go for a longer walk. A staff who walks quite fast works my one-on-one shift then. Last time we went on a walk together, I broke my speed record: 13 minutes 11 seconds per km. That’s not very fast, but it’s not slow either. Let’s hope for not much rain tomorrow morning.

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?

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?

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.