#WeekendCoffeeShare (February 4, 2023)

Hi everyone. I’m joining #WeekendCoffeeShare today, even though I’ve long had my last cup of coffee for the day. No soft drinks or vitamin water for me today either. In fact, I actually now realize I forgot to ask my one-on-one staff for chips this evening, which we usually get on Saturdays. Oh well, the scale will thank me (I hope). Let’s have a drink and let’s catch up.

If we were having coffee, first I’d confess that I still write “2022” rather than “2023” as the title of my coffee share posts and other dated posts regularly. I don’t think I did this for so long during previous years, but “2022” comes out so easily. Oh well.

If we were having coffee, I’d ask about your weather. Ours has been mixed. Early in the week, we had some rain, but later, we’ve had nice winter weather. Daytime temperatures have usually been at about 8°C.

If we were having coffee, I would tell you that, yesterday, I got in almost two hours of exercise according to my Apple Watch, most walking and a little dancing. “Dancing”, in my book, is usually just walking with some arm swaying to the tune of some upbeat music. I got in over 13K steps. Today, I got in nearly 11K steps too.

If we were having coffee, I would share that, like I said in my post on Wednesday, the home’s kitchen renovations are over with. On Thursday, the living room furniture got moved back to its proper place. I notice I was almost used to the temporary arrangement.

If we were having coffee, I would proudly announce that the theme for this month’s challenge in the Dutch polymer clay Facebook group is unicorns. It was chosen in part by me. I am looking forward to showing the blue unicorn that’s been waiting to be cured in the oven since Tuesday.

After all, like I said last week, someone from that group sent me some Hotfix rhinestones to try to decorate my clay sculptures with. When they arrived on Tuesday, I immediately tried them on the blue unicorn. I can’t wait to show her, the group and the world. Let’s hope the rhinestones won’t fall off.

If we were having coffee, lastly I would tell you that I had another nice visit from my mother-in-law on Tuesday. We went to Burger King to have lunch. Our food was lukewarm by the time it arrived, but that’s almost to be expected with burger chains these days. We also went to an arts and crafts store, but I decided not to buy anything, as I was rather overloaded already.

See, I did it: I created a coffee share post without complaining about my care home situation. It isn’t because it’s better. Well, today is a pretty good day for once. Let’s celebrate that and be thankful. But still all please pray I can get out of here.

January 2023 Reflections #WBOYC

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.

Gratitude List (January 21, 2023) #TToT

Hi everyone. I’m once again (or still) struggling a lot. Each time I think I see a glimmer of hope, it gets crushed one way or another and the bottom line is that I’m probably stuck in this dark pit for a while still. For this reason, I thought I’d do a gratitude post once again in order to remind myself there are still positives out there. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful for Apfelstrüdel. This is, or so I believe, a German type of baked goods with apple and cinnamon. Last Sunday, my husband and I went to have lunch at La Place, a type of restaurant, and their Apfelstrüdel was on sale. Even though it’s sweet, I decided to have it as my main part of the meal.

2. I am grateful for a trip to Action, a discount store, with my husband on Sunday. I bought cleaning wipes, toothpaste and crocheting supplies.

3. I am grateful my assigned staff is back at work after being on vacation for a couple of weeks.

4. I am grateful for another visit from my mother-in-law on Tuesday. It was good.

5. I am grateful for apples, bananas and blueberries. We didn’t have fruit during most of the week, so on Sunday, I bought apples and bananas when at Aldi with my husband. Then on Tuesday, I bought blueberries. I am grateful that, on Tuesday, my mother-in-law reminded me to buy my own peeling knife. You see, the care home’s kitchen is being reconstructed, so all kitchen supplies are in boxes. Had I not bought the peeling knife, my staff wouldn’t have been able to peel and cut my apples.

6. I am grateful for sleep. Over the past week, most days, I got at least reasonably good sleep.

7. I am grateful my cold, which I’ve had all week, seems to be getting a little better. At least I’m not sneezing like crazy anymore.

8. I am grateful my husband ordered new walking shoes for me, to be delivered to my in-laws today. He isn’t coming by for a visit tomorrow because of my cold symptoms, but will bring them along next week.

9. I am grateful a staff helped me manage the chain stitch of crocheting today. I already had some practice with it before, but it was always hit and miss. I am hoping to learn some more stitches someday once I get confident working with this one.

10. I am grateful for a long walk this afternoon. I am also grateful that, despite having limited energy this morning, I was able to have a relatively good time for most of the day.

What are you grateful for?

Joy in October and November

Hi everyone. I didn’t post an update on my word of the year last month, so I’m doing one now. My word is “JOY”. As usual, I’m linking up with the #WOTY Linky as well as Lisa’s One Word Linky. Here goes.

I honestly can’t remember the joy I was looking forward to experiencing next month at the end of September. I just had a look at the post I wrote then and I said then that I was hoping to enjoy real food, as the staff at my new care home cook. I wasn’t as high with anticipation as I now looking back thought I was, realistically saying I’d have a lot to get used to so was just hoping to enjoy some everyday pleasures. I didn’t specify what these included.

As regular readers of my blog will know, I indeed did and still do have a lot of getting used to do. In fact, I’m pretty sure I won’t ever truly adjust to the chaos that is the new care home. As a result, I didn’t experience much everyday joy over the past few months. I did for the most part enjoy the real food, but not as much as I’d have liked, as I wasn’t involved at all. I’m hoping to be able to contribute to thinking up the menu soon, but the staff usually receive ideas from the clients while they are in the communal room and the staff are in the adjacent office. Since I hardly ever join the other clients in the communal room and there’s no set time for the staff to think up the week’s menu so that I could then, it may be hard for me to participate, but I at least voiced my wish to do so once again.

Over the month of November, I did finally try my hand at crafting semi-regularly again. During October, I tried to as well, but there hardly was any time for the staff to help me so I struggled to find the opportunity. I managed to finish two polymer clay pieces during November, the latter of which unfortunately didn’t cure properly so it broke.

I also enjoyed two hour-long walks during October. During November, my mobility wasn’t as great, so I struggled even with 30-minute walks. I did eventually manage to take a couple of pictures during my walks though.

I also looked forward to enjoying visits from family in October. Indeed, my sister did visit me. So did my husband and mother-in-law, both regularly during the past two months. These visits are a welcome excuse to leave the care home.

Honestly, I am not sure whether, at the end of September, I somehow knew that the new care home wasn’t going to be what it was cracked up to be and that was the reason I didn’t specify the everyday pleasures I hoped to enjoy. Even if I knew then, the adjustment honestly is far more intense than I expected it to be. In truth, I’ve been pushed far beyond my limits and the experience has been mostly a nightmare.

Now, at the end of November, I am noticing some tiny glimmers of hope on the horizon that might mean the new care home could actually become less than nightmarish for me eventually. I am not sure these will mean anything in the coming month yet, so I will continue to focus on small joys. For example, I am hoping to enjoy crafting even if I can’t enjoy it nearly at the level I used to. I am also hoping to enjoy some walking, weather permitting, as well as continued regular visits from my husband and mother-in-law.

TGIF: Walking and Crafting

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)

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

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

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

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

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.