TGIF: Walking and Crafting

Posted on by Astrid

Hi everyone on this third Friday of November. I’m joining Paula Light for TGIF. How is your day going? Mine’s almost over, as it is 9PM as I type this.

I had a pretty good day. Have had an okay week in general anyway. Finally got down to creating my first actual polymer clay piece here at the new care home, a flower. Creating this simple piece took me about 45 minutes yesterday, including gathering my supplies, watching the tutorial, conditioning the clay, etc. The piece nearly got ruined when the staff took it off the tile to transfer it to an oven-safe mat, but thankfully she was able to put it back together. I initially didn’t want to cure the clay because, once cured, if a piece is ugly beyond sanding/buffing, all you can do is throw it in the trash. However, after some thought, I decided I wanted something tangible to remember my first actual claying session in the new care home by.

As those who’ve seen my creations from back at the old care home, will know, this one can’t compare to those. However, I feel judging from the fact that I haven’t been actually working with clay in a long while, I did an okay job.

I also went on several walks this past week. Haven’t met my step goal, insofar as I have one – those who know the Apple Watch, know its movement goal is calorie-based, not step-based -, but I have been doing an okay job overall. My movement goal, by the way, is easy to reach. My exercise goal, not so much. My monthly goal for November on the Apple Watch is to reach my daily exercise goal 23 out of 30 days. I reached my monthly goals for September and October – different goals – with ease, but am struggling with this one, because walking and dancing are my only ways of exercising here now that I don’t have my elliptical anymore. I could cheat by starting some ball game workout when throwing a ball with my staff, but that’s not fair.

Overall, this week is going okay with respect to my care. A slightly modified version of the day schedule I mentioned last Saturday got shoved down my throat once again on Tuesday, but thankfully, most staff are willing to take it with a grain of salt (or a whole bucket of salt).

Unfortunately, the situation had to get worse over the weekend before it got slightly better and the slightly better (ie. an okay week this week) might just be chance. I won’t disclose details of the, in my opinion, unacceptable care I received over the weekend.

I talked to an independent mediator about my care situation today (this is not a secret, all staff know I did). I won’t disclose what exactly we discussed, but we’re hoping to resolve the difficult care situation as peacefully as possible.

Here’s hoping you’ll all have a good weekend.

The Wednesday HodgePodge (November 2, 2022)

Posted on by Astrid

Hi everyone. Wow, I don’t think I’ve gone this long without blogging since I started this blog! Over the past week and a half, I didn’t have much to share except for how depressing and frustrating my new care home situation was, something I don’t really want to bother you all with. It seems it might be improving slightly, so I’m back on the blog. I don’t really want to share details though, so instead I’m joining in with the Wednesday HodgePodge. Here goes.

1. What about your upbringing are you most grateful for?
Hmmm, this is a hard one, since I endured quite a lot of childhood trauma. I’m going to say the fact that my parents, particularly my father, taught me a lot of academic skills.

2. What are two or three things that bring you comfort?
Essential oils, my weighted blanket, soothing music.

3. Something beautiful you saw today? (or yesterday depending on when it is you’re answering this question)
I am blind, so I don’t technically see anything, but something beautiful I got to experience today was to feel a cosmea flower.

4. Have you ever used a typewriter? Tell us a memory associated with that.
Yes I have. In the fourth grade, I started learning to touch type and we started out on a typewriter even though computers existed back then (1995). The reasoning was, or so I remember, that you can’t correct typeos on a typewriter. I hated learning to type, whether it was on a typewriter or computer.

5. Something you are grateful for today.
Another long walk with a fellow client and staff much like the one we went on two weeks ago. This time, just one staff went with us. This was a little scary for me, especially because the other client can talk triggering topics at times, but the staff cut her off when she did. This walk was also when the staff picked the cosmea flower for me.

6. Insert your own random thought here.
On Monday and yesterday again, I finally was able to be crafty again for the first time since getting into the new care home. Not polymer clay – that for now takes too long -, but I made a bracelet for the staff who were with me those evenings. I unfortunately forgot to take pictures.

Gratitude List (October 22, 2022) #TToT

Posted on by Astrid

Hi everyone. I’m feeling very overloaded today, but it’s too early for me to go to bed or I might wake up in the middle of the night and not be able to go back to sleep. Instead, I’m writing a gratitude post. As always, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful I was able to let go of the issue with the staff from two weeks ago.

2. I am grateful for delicious home-cooked couscous, which a staff member who is originally from Morocco shared with me and a few others at the care home on Sunday.

3. I am grateful I beat this same staff member 4-0 in the card game mau-mau again today, but also grateful he beat me on Thursday. I think I told you all last week that he’s learning the game from me, so I love it when he wins (but I love it just a bit more when I win!).

4. I am grateful I was able to try out polymer clay a few times this week. So far, all of my projects failed before I even attempted to bake them, but that’s okay.

5. I am grateful for white chocolate. I consumed quite a bit of it over this week.

6. I am grateful my medication got sorted. It was quite the ordeal last Saturday and I actually called the out-of-hours GP surgery, not knowing that, if my staff said I could cope without meds for a day or possibly two, that meant a doctor had actually said so already. In the end, I got my Saturday morning meds at around 9PM and am now thankfully fully in the electronic medication system.

7. I am grateful for quetiapine. I just took one about half an hour ago and thankfully, it’s calming me.

8. I am grateful for fish. Doubly grateful, in fact. Last Saturday, my staff took me to the marketplace for fish and, this afternoon, the staff ordered fish for everyone at a fish shop in the next town.

9. I am grateful for warm weather. The daytime temperature hardly got below 15°C this past week and, for the past several days, it’s been 18°C.

10. I am grateful for a nice, long walk across institution grounds and through the nearby forest with a fellow resident ant two staff. I regret not having taken my phone with me so that I could have taken pictures.

What are you grateful for?

Gratitude List (October 14, 2022) #TToT

Posted on by Astrid

Hi everyone. I’m still struggling a little, but this means it’s all the more important I look at the positives of my life. For this reason, I’m joining in with Ten Things of Thankful for a gratitude list. Here goes.

1. I am grateful my support coordinator is back in the home today after several weeks of being either off work or busy with out-of-the-home duties.

2. I am grateful the staff whom I had a huge issue with last week – the details of which I won’t disclose on the blog -, hasn’t been working here since.

3. I am grateful my support coordinator offered to sit with me and said staff to talk things over so that I can let them go. We aren’t yet sure when this can take place.

4. I am grateful I found out an oven/microwave combo works for polymer clay after all, provided you set it to its oven setting. This means I will most likely be able to use my home’s oven for polymer clay.

5. I am grateful for a nice visit from my mother-in-law on Tuesday. I am also grateful I was able to walk for an hour during said visit.

6. I am grateful for green tea without any additional flavors. That’s my favorite tea, or maybe really it’s the only tea I’ll drink. I am grateful the staff ordered it.

7. I am grateful for relatively nice weather. It’s been raining a bit over the past few days, but not all day, so I have been able to take walks every single day this week.

8. I am grateful for some distraction in the form of a few games of mau-mau, a card game, with my one-on-one. I was even able to teach one of my staff the game and he beat me to it.

9. I am grateful I tried penne carbonara on Tuesday, since it turned out I actually sort of like it.

10. I am grateful I usually get along with all my fellow residents here at the home. Of course, we all have our issues and it’s an intensive support (ie. behavior) home for a reason, but for the most part they’re nice people.

What are you grateful for?

Finding My Way #31Days2022

Posted on by Astrid

Hi everyone. The first optional prompt for #31Days2022 is “way”. I thought of several titles for this blog post, but ultimately decided on this one. The rest just randomly flowed out of my fingers.

Only four days before I move to the new care home. I told my mother about it on Tuesday. Somewhat surprisingly, she didn’t react weird to the fact that I’m going to live on institution grounds. Not surprisingly, she did start talking to me about how I might be able to walk around grounds independently then.

I did, indeed, mention to the support coordinator and behavior specialist for the new home, when they came to assess my suitability for the home, that I may want to learn to take a little walk myself on institution grounds someday. Afterwards, my current assigned staff cautioned them against too high expectations. After all, I want to be “normal” pretty badly, but I still remain multiply-disabled in some significant ways.

I know that people who are “just” blind can learn to find their way around institution grounds quite easily. But I’m not “just” blind. For one thing, I am not even sure I could use my white cane in a manner that would allow me to detect obstacles safely, given my mild mobility impairment due to cerebral palsy. For another, due to autism-related executive dysfunction and other factors, my energy level varies greatly from one day to the next. So does my capacity to handle sensory stimuli. Consequently, I may be able to find my way for a short walk around grounds pretty easily one day and get hopelessly lost and frustrated the next.

I remember back when I was in the psych hospital, I voiced a similar wish to learn to take a quick walk around the building. An orientation and mobility instructor from the blindness agency came by, taught me a few times with very limited success. Before she was even finished teaching me, the staff decided it was my responsibility, so no matter my mental state, if I left the ward (even in a meltdown), no staff would come after me. I was then supposed to take my little walk, despite the fact that, in a meltdown, I wouldn’t remember where to go at all.

I know at least here in the Netherlands staff can’t legally restrain you once you’ve left an open ward, but that wasn’t the point, since I didn’t need restraining. Their point was that I was now somehow capable enough to find my way by myself and, if I wasn’t, it wasn’t their problem. This at one point led to my husband needing to drive over from the next town to take me back to the ward.

In a sense, I should know the new care home isn’t like the psych hospital, but I keep getting flashbacks. All I can hope for is that my current staff will do a proper handover.

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.

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 (August 20, 2022)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. Even though I was late having my last cup of coffee this evening, I’m even later writing this post, so sorry, no coffee left for you. We do have soft drinks though or you can have water or maybe I can make you a cup of tea. That being said, I’d advise against black tea, since it’s at least almost my bedtime by the time I finish this post. Oh wait, this is a worldwide gathering over virtual coffee or tea or whatever we like. Let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking how your weather is. Ours has been good all week, with temperatures rising to 30°C on Tuesday and in the mid to upper twenties (Celsius) during the rest of the week. Some days, it was too hot and especially humid for walking, but other days, it was just the right temperature.

If we were having coffee, I would tell you I’ve been busy thinking of what to create for the fellow resident who has his birthday next Thursday. After all, originally I intended on creating a canvas with polymer clay cookie cutter shapes of a car and the letters of his name on it, but the cutters for the letters won’t work with polymer clay, because the inside parts of some letters are much shallower than the outline. I thought about buying different cutters, but my husband came up with the idea of glitter stickers. They had them at Hema, a department store here, or so he thought. Not at the one we were at today, so I ended up buying regular letter stickers. Thing is, these are much smaller than I’d intended. Besides, I’m not sure stickers will stick onto painted canvas. I’m probably just making a card with those stickers and then doing the polymer clay car in some other way.

If we were having coffee, I’d share that I’m quite discouraged where it comes to my possibly moving to another care home. I had a meeting with some people from the main institution for my care agency three weeks ago, but haven’t heard from them. Other than that, I found out yesterday that the only place the care consultant applied for me at is a senior citizens’ assisted living facility that happens to cater to the blind. In a way, I can see his point, in that my funding is based on blindness and, in this sense, an intellectual disability facility like my current one has to tweak stuff in order to accept me. That assisted living facility is probably the only place within an hour’s driving distance from Lobith that accepts blindness-based funding. Then again, other than them catering to the blind, I can see absolutely no reason why the place would be suitable. And honestly, them catering to the blind may in fact be a drawback, as it means I can’t use my blindness as an “excuse” to explain complicated difficulties of mine by, hence my needing to explain myself in detail. That really has caused me extreme problems of being overloaded in the past. I mean, it would be okay if the staff knew blindness and cerebral palsy and autism and emotional developmental dysfunction and all the issues that cause me to struggle greatly in real life, but as far as I’m concerned most of these don’t affect the elderly in particular.

If we were having coffee, I’d try to end on a positive note though by telling you I had a good time with my husband today. He was originally supposed to be here by 1PM, but got stuck in traffic and couldn’t be here till 2PM. He almost turned around, because we had a misunderstanding about it, but he eventually got here and then we drove to Enkhuizen. Enkhuizen is a town about 100km from Raalte, so halfway across the country. My husband wanted to have fish, but not here in the east, which was his excuse for driving there. Then we walked around the town center, going to Hema for those stickers I mentioned above. Then we drove back to Raalte, grabbing a McDonald’s on the way in Kampen. I had a Mexican style crispy chicken, which was huge and delicious but not overly spicy. We really want to be taking more day trips together.

How have you been?