#WeekendCoffeeShare (April 13, 2024)

Hi everyone. How have you been? I’m joining #WeekendCoffeeShare today. I’m writing this post in the afternoon on Saturday, but might not finish it until the evening as I’ll try to fully enjoy my one-on-one support time while there’s staff I get along with well in the home today. It’s a little warm for coffee, so if you’d like a cup of that, fine by me, but I could also offer you orange and tangerine-flavored Dubbelfrisss. I also should still have a couple Mars ice cream bars in the freezer. Let’s have a drink or ice cream and let’s catch up.

If we were having coffee (as I always say), first, I’d talk about the weather. It’s been on the warm side for April here. Last week Saturday, the daytime temperature even rose to 25°C. Yesterday and today, we got daytime highs of 21 and 22°C respectively. The rest of this week, the temps have been lower and we did get some rain. Next week, we’re supposed to get daytime temps barely above 10°C, which I don’t like. However, that’s probably closer to normal.

If we were having coffee, next I’d tell you all that I’m still going strong keeping up with my physical activity by walking everyday. So far, I’ve closed all three of my activity rings on my Apple Watch each day since the beginning of the month (and possibly a few days at the end of March too. I’m aiming for a perfect month with respect to my movement ring at least, which I haven’t had since last September.

If we were having coffee, I’d share that I finally got the long-awaited orthopedic shoes. They fit well, but the brace that’s in them doesn’t effectively help my really bad drop foot and as a result, the left shoe got noticeably damaged after only two fifteen-minute walks.

If we were having coffee, I’d tell you that, last Sunday, my spouse and I together worked on a polymer clay project. I’d proposed we create a unicorn, but my spouse came up with the idea of crafting a triceratops (“unicorn dino” with three horns) instead. It was fun, but definitely an exercise in letting go of my need for control.

Polymer Clay Triceratops

If we were having coffee, I’d tell you that the rest of the week was quite hard. I’ve been struggling with feeling quite depressed lately. I have been feeling like my world is becoming smaller and smaller with all the things I cannot do. It’s been more so on my mind lately given that many of my fellow residents are going on the home’s yearly week-long sleepaway camp at the end of the month and it’s not even been asked to me directly whether I wanted to go too. Rather, I overheard the staff talking about the camp a few months back and mumbled about it not appealing to me and that’s the end of it. I’m supposed to stick to my day schedule, which currently consists mostly of walking around institution grounds and playing dice games. Some staff say I might be able to be in the communal room more, but to be honest I don’t care about being in the communal room just sitting around.

Yesterday, I tried making a cheesecake with my assigned staff in the communal room but got overloaded by one of the other clients (who will stay here during the camp as well). It led me to spiral into a massive emotional outburst. After all, now everyone tells me I’ll never have a better life anywhere anyway so I’d better accept the life I have now. Why didn’t anyone tell me this two years ago? The answer is simple: at least some of the people at the care facility in Raalte secretly wanted to get rid of me. This is intensely saddening to me.

If we were having coffee, I would end on a positive note though by saying that one of the staff who told me to accept my life yesterday, offered to take me on a short car trip to Deventer this afternoon. We had a cup of coffee (I decided to buy both of ours) and walked around the marketplace, where the staff bought me a stroopwafel and I bought a small serving of garlic-filled olives.

#WeekendCoffeeShare (February 24, 2024)

Hi everyone. I’m joining in with #WeekendCoffeeShare again this week. It’s the last Saturday of February and I honestly can’t wait for spring. How have you been? I’ve had my last cup of coffee for the day already, but I can still offer you something to drink if you’d like. Let’s catch up.

If we were having coffee, first I’d talk about the weather, as usual. I’m really disappointed in it this week. It’s been raining a lot and it’s been quite cold. On Thursday, another storm even raged by and management decided we weren’t allowed to go outside. This was in light of the situation in which a staff member died last December from being hit by a falling tree while going out in a storm. I want sunshine, for goodness’ sake!

If we were having coffee, then I’d tell you that obviously I haven’t been all that active lately. I think I only met my movement goal on my Apple Watch three times tops this week.

I might go swimming soon though. My assigned staff told me they found a spot for me to go into the pool on Thursdays. However, I’d need a staff to actually accompany me in the water, because I won’t be able to follow instructions when shouted from the side and there will be other clients in the pool too. If there’s no staff available who’s willing to come into the water with me, he said we could do fitness instead. There’s some gym equipment on grounds here, but there won’t be an instructor there. I’m fine with this, since I know how to work most equipment or my staff will be able to figure it out.

If we were having coffee, I’d share that I did have quite a productive week in the crafty department though. I made a polymer clay unicorn (yes, another one) on Tuesday. I didn’t do it fully independently, but that’s okay. I did add wings to this one, as well as Hotfix stones below each wing.

I also made a bird’s nest out of polymer clay on Thursday. That one is still waiting for more projects to join it so that I have more things to put into the oven together.

If we were having coffee, lastly I’d tell you that my support coordinator came back to me on Monday after talking to the behavior specialist. My emotional functioning won’t be re-assessed until June at the earliest and my day schedule won’t change until after the summer at the earliest. At the end of our discussion, she gave in on the day schedule and said she’d discuss it in the team meeting. I honestly don’t really care about the day schedule as much. I mean, it’s not perfect, but no day schedule is going to be perfect. What I do care about, is to lessen the chaos of my care. I mean, I know it’s better than it used to be at the intensive support home and I probably sound like a Very Hungry Caterpillar if I request more accommodations. I said as much to my support coordinator, but she tried to validate me by saying my attitude stems from my trauma.

The fact that there’s no designated one-on-one shift, however, has a lot of drawbacks and not just the fact that I get confused about who’s going to show up each support moment. It’s frustrating also because only the staff who works until handover, writes the day’s logs and those usually aren’t the staff members supporting me. I do, for this reason, notice a lot of irrelevant logging and, last Thursday, when I had a near-perfect day, there weren’t any notes at all. I think my staff probably hate me comparing my situation to the one in Raalte, but there, my designated one-on-one had fifteen minutes at the start of their shift to read the previous days’ log notes and fifteen minutes at the end to write up theirs. This meant I didn’t have to explain everything half a dozen times, like I do now. I also feel like having a designated shift would mean I could be much more clear on what I am going to do, lessening the mere talking and increasing the actual activity. I see why, if I keep rambling to a staff member for all of my activity time slot, they won’t want to spend another time slot with me, but I don’t like to spend all of my activity time rambling about the same issues either. The only reason I do is because I can’t count on getting it across.

Looking After My Health

Hi all. Today’s question for Sunday Poser is how well we look after ourselves, health-wise. Sadje observes that most regular bloggers are over age 50. Honestly, I wonder how they do it, if they also lead an active lifestyle in other respects. But this may be a question for another time.

I really struggle with being health-conscious, as I am quite the impulsive type. Thankfully, I never smoked other than the odd whiff and I don’t care for alcoholic beverages either. Food though is a different story. I’m recovering from disordered eating. In my case, it mostly involved overeating and some purging.

Six years ago, when I had just been kicked out of the psychiatric hospital, I weighed 80kg and could barely walk for fifteen minutes at a time. I am 1.53m in height, so this means I had a BMI of nearly 35, or obesity stage II. My spouse recommended I lose weight for my health. I did, although at the time I only had it in mind to lose the 10kg I was in the obese range. However, I never maintained a weight within the overweight, let alone healthy, BMI range until sometime in 2022. My food addiction was just too strong.

Now, thankfully, I’ve been at a healthy BMI for several months. I was talking to my spouse this afternoon and we were discussing my recent clothing shopping sprees. My spouse said I look after my appearance better, but admitted it was hard back several years ago. I started talking about my being “quite chubby,” only to be corrected by my spouse with “No, you were fat.” That’s what I thought too, so it didn’t come across as offensive at all, but I wanted to downplay things a bit in case my obesity wasn’t as bad and I was making a big deal out of nothing.

Back to ways in which I look after my health. I try to eat enough fruit and veg each day, but this is somewhat of a struggle here at the institution. I also walk at least 30 minutes at the bare minimum everyday. I haven’t had a day gone by since owning my Apple Watch that I didn’t meet my stand goal. Of course, this requires me to only move for a minute each hour, but at least I’m not sitting on my butt for hours on end.

I do take multiple medications. Five, in fact, and that means I’m officially classified as having polypharmacy. This means that I’m at increased risk of health issues due to the number of meds I take. Thankfully, I do get bloodwork done regularly to check for things like kidney function, fasting blood glucose, triglycerides, etc. Only my kidney function has been off, but it hasn’t decreased over the past year and is still within the mildly decreased range (my egfr is 68, if you’d like to know).

I did get a kind of wake up call a few days ago when I found out someone I met at the blindness training center in 2005 passed away recently at the age of 51. We had a lot in common, including obesity, mental health problems and psych medications, etc. I know, I’m no longer obese, but it’s not like my body has magically forgotten the twelve years or so it spent being overweight.

Thankfully, even though I cannot undo the bad choices I made in the past, I can decide to be more health-conscious from now on. Will it make sure that I live till age 83 like my maternal grandma or 94 like my paternal one? No.

There’s no need to blame ourselves for our health issues. I mean, some folks like to call cancer, cardiovascular disease etc., “illnesses of affluence”. This might be so on a societal level, but it’s sick (no pun intended) to blame the individual for falling ill or dying young. I would love to live to age 83 or 94, but it’s only partly within my control.

#WeekendCoffeeShare (July 29, 2023)

Hi everyone. It’s been a while since I last joined in with #WeekendCoffeeShare, so I thought I’d write a post for it. I just had my evening coffee, as is usual when I sit down to write these posts. I may still grab a cup of green tea later though, since, like I mentioned yesterday, I started using the Water Reminder app again. If you’d like a drink, cold or hot, join me and let’s chat.

If we were having coffee, I’d first share about the weather. It hasn’t been summerlike, honestly. Rather rainy and the daytime temperatures barely got above 20°C. It isn’t supposed to get any better soon.

If we were having coffee, then I’d repeat myself by shouting off the rooftops for all of the Coffee Share crowd to hear that YAY, I AM MOVING!!! Of course, as those who read my post from Monday will know, I hardly know any details about my new care home and a moving date hasn’t been set. However, the bits of information I do gather, make me feel like this could be quite positive. I mean, it’s not likely my dream home or anything, but then again that was supposed to be this one, only that dream turned into a nightmare.

If we were having coffee, I’d tell you that I’ve been spending more time among my fellow residents lately. It’s not really my choice, truthfully. In part, it’s because I look for familiar faces in the communal room when I get assigned the umpteenth new temp worker. Then when I do get a familiar staff, they often ask me to join the group too. This morning, my one-on-one for the moment sincerely claimed another resident had asked me to come play a game of dice, but I’m not 100% sure it’s true with all the times the staff are initiating it. For those who don’t know, me being in the communal room, unless I’m indeed playing a game with the aforementioned fellow resident, usually means me sitting around doing nothing while the staff chat among themselves or scroll on their phones, thereby my not doing any meaningful activity. Besides, I usually get overwhelmed very easily, but the staff expect me to be able to tell them rather than them picking up on my signs. Today, I was extremely overloaded for over an hour after spending not even twenty minutes in the living room. With the fact that I’m moving, I’m not sure whether the staff want me to practice functioning in the group more so that they can lessen my one-on-one, as that wouldn’t benefit them at all. However, I don’t see any other reason for them to initiate me being in the group so often.

If we were having coffee, then I would tell you I closed all my rings on my Apple Watch every single day this week so far. That’s quite an accomplishment lately, as in late June, I broke my 300-odd day streak of meeting my movement goal and I once again didn’t meet it last week. I honestly have been rather unmotivated in the exercise department recently. This week though, I logged more workouts – mostly walking – than last week.

If we were having coffee, lastly I’d share that I’ve generally been really uninspired over the past couple of weeks. I did make some simple smoothies with my new blender earlier this week, but other than that, I hardly did anything creative. I can only hope I can change this sooner rather than later.

June 2023 Reflections #WBOYC

Hi everyone. It’s the end of the first half of 2023. Wow, can you imagine? I’m joining What’s Been On Your Calendar? (#WBOYC). Here goes.

Honestly, I can’t remember much of the first few weeks of June, other than the fact that I was extremely motivated to get moving. I had signed up for two Apple Watch challenges. Suffice it to say that motivation quickly diminished and I finally broke my 300-odd day streak of reaching my movement goal yesterday. That is, I broke it last Saturday too but cheated by lowering my movement goal for that day.

In other respects, the month has been meh too. I only wrote twelve blog posts, including this one, and hardly have been crafting. I mostly spent my days playing dice and the odd card game. I think I might be depressed, but more likely it’s the shitty circumstances of living in my current care home.

However, I’m pretty sure my staff think I’m doing well, as I’ve been in the communal room more. The reason is mostly to connect to somewhat familiar people, because I’ve mostly been assigned completely new temp workers. When I try to communicate my discomfort with this, I’m usually met with rather curt remarks that the staff have no obligation to explain their decisions to me and then, when I spiral further into meltdown, I’m met with harsher and harsher actions from the staff.

The month of June is, of course, also my birthday month. I had my sister and her family over in Lobith last Saturday, which was okay, though a bit stressful. I spent Tuesday, which was my actual birthday, in Apeldoorn with my parents and spouse. I really loved the Thai food we ate.

In the health department, I have been doing okay. My cardio fitness level has been declining again, unfortunately and is now just barely in the below-average range. I gained a little weight too, but truthfully my weigh-in on May 31 showed the lowest weight I’d been in forever, so I’m not worried about that. After all, I’m still at a healthy BMI.

How was your June?

TGIF: A Short But Productive Week

Hi everyone. Today, I’m joining Paula Light’s #TGIF
once again. Paula writes about this being a short week. I almost forgot about that. I mean, we don’t do Memorial Day here in the Netherlands. We have Veterans’ Day, which I believe is on June 29. However, last Sunday was Pentecost and, as with Easter, the Monday after that is called second Pentecost and is an official holiday too.

My week, despite being short, was productive. On Tuesday, I had a meeting with my behavior specialist and a behavior specialist responsible for a possible new care home (or several, I don’t know). They were purposefully vague about the home(s) this behavior specialist is in charge of. Nonetheless, I think the meeting went quite well.

On Wednesday, I was frustrated all day because my Braille display wouldn’t connect to my PC. I thought the problem was the cable, but it wasn’t. In the end, I found out that I had somehow managed to remove my Braille display from within the screen reader’s settings for default Braille display. My Braille display still doesn’t charge properly, for which a technician will come round on Tuesday.

As of yesterday, I am exercising more than I did last month, because I signed up for two challenges in a fitness app called Challenges. Yesterday, in fact, I burned over 500 active calories according to my Apple Watch. Today I’m not yet there, but I did get in significantly more steps. I don’t want this to become an obsession, so I’m making sure I do other activities too. Like, yesterday I created a polymer clay ice cream cone. I later realized that, because I had used white Premo, it needs to be cured at 135°C, but all the other colors are pretty light Fimo soft, for which 130°C is the maximum temperature (and in fact they often darken at this temperature too). I usually cure a Fimo/Premo combo at 130°C and will this time too, but am pretty sure the Fimo colors will be ruined.

This afternoon, my mother texted me asking whether I’d thought about celebrating my birthday (which is on the 27th). If it’s up to her, she’d like for my parents, my spouse and me to go out for dinner. I discussed it with my spouse, who suggested we go to our favorite chicken restaurant, which is about halfway between my parents and Lobith. Or was about halfway between my parents and Lobith, that is, since when looking it up, I found a different chicken restaurant, closer to my parents (so a longer drive for my spouse) and it turned out our favorite chicken restaurant no longer exists. I’m not yet sure what to do now, but I’ll think on it.

TGIF: Twenty-Two Degrees!

Hi everyone. I’m joining Paula Light for
#TGIF, an opportunity to ramble.

Today, let me share about the weather. It’s been okay most of the week with some rain, some clouds and occasionally a bit of sunshine and temperatures rising to about 16°C. That’s cold for May if you ask me. Now I’m no weather expert, so I have no idea what constitutes normal weather for May, but it feels like it should be almost summer-like.

Which, today, it is. The daytime temperature reached 22°C. Well-known Dutch meteorologist Erwin Kroll, who would do the weather forecast on public television in the late 1980s and 1990s and is therefore my face of the weather, once told an interviewer on the audio magazine for blind children that this was his favorite temperature. After all, at 22°C, you can both sit still and move around without getting cold or hot respectively. I love this temperature too, though my ideal temperature is slightly warmer.

I once again wore my blue, flowery skirt that I also wore last week, along with the same blue shirt. In the evening, I changed into shorts, because I was going on the stationary bike. I had also gone for three walks today, so up till this point have nearly two hours of active minutes on my Apple Watch. I intend to still dance some, because I feel compelled to double my movement goal once again.

In other health news, I stepped onto the scale on Wednesday and I finally reached a truly healthy BMI. Yes, you heard me correct, this time it’s not nearly, but actually. Even though my dietitian tells me I no longer need to lose weight and has been telling me so for a while, I’d love to still lose a few pounds. That being said, I understand the dietitian’s logic: with my history of bulimic tendencies, it’s easy to fall into that trap again and a healthy lifestyle is more important than an ideal weight. The last time I was at a healthy BMI, was back when I got married in 2011, but then again back then I engaged in purging behaviors quite a lot too. I never, ever want to go back there.

I do need to make sure exercising doesn’t become compulsive either. That being said, that’s not as likely to happen as my body just can’t go on forever. Then again, actually listening to my body – challenging it when it needs to be challenged beyond its comfort zone and giving it a rest when it needs to rest -, is quite hard. I am working on this though.

#WeekendCoffeeShare (March 25, 2023)

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s past 9PM on the night before daylight saving time sets in, so no coffee for me. I just had an apple-and-cherry flavored Dubbelfrisss with my meds and a small bag of chips. I normally have those at 8PM on Saturdays, but was upset then. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d complain about the weather. Oh wait, how’s yours? Ours has been rainy and chilly for spring. I want sunshine!

If we were having coffee, I’d share that I’ve been struggling a lot over the past week. I was in a crisis on several occasions. I will spare you all the details but I’m not proud of my behavior. The triggers to my severe outbursts involved disruptions to my day schedule and unfamiliar temp workers being placed with me for my one-on-one support. However, I must admit I’ve been on edge almost all the time even when there were few disruptions to my day schedule. For example, today I got upset because my laundry was put through the washing and drying process twice and this means I haven’t been able to change into my pajamas yet, something I normally do around evening med time at 8PM. In this sense, I understand my assigned staff’s saying yesterday that even if there are no disruptions to my day schedule and I’m supported by super familiar staff all day, I still may get upset. Which, by the way, wasn’t the case today, but we got as close as possible: a familiar staff supported me for half the morning shift and from handover at 3:15PM up till dinnertime at 5PM. For which, by the way, I explicitly thanked said staff. I’m pretty sure I’ll hear that because I got upset at 8PM for a minor reason, by which time a relatively new staff was supporting me, apparently familiarity of staff isn’t the issue. And indeed, there is probably nothing that will prevent me from getting upset altogether, but that doesn’t mean that nothing can be done to prevent the most severe of crises.

If we were having coffee, I would tell you that I finally saw the dietitian on Wednesday. She’s the same dietitian I saw in my old care home. I had a good talk with her and the absolute best news is I no longer need to lose weight! Not that this ever was the goal to begin with, but I was obese when I started my healthier lifestyle journey with her in January of 2022. Now I’m at a healthy BMI. The dietitian made some recommendations for me to change my diet to get me from losing weight to weight maintenance. She’s also trying to talk my staff into getting me to choose my dinners from the meal service menu again, but I haven’t heard about that so either my assigned staff said no or that’s still up for debate. The reason the dietitian is trying to get me to choose from the menu is the fact that I’m quite a picky eater and, when I don’t like something, I’ll usually skip it and not be sure how to replace it. My eating disorder voice also often chimes in, saying that the fewer calories I eat at dinner the better.

If we were having coffee, lastly I’d tell you I upped my movement goal on my Apple Watch from 300 to 330 calories per day. It’s a bit of a challenge to reach it, particularly now that the weather hasn’t permitted long walks most days. I did go on the stationary bike once (and planned on going onto it several more times but you know how it works with motivation to exercise). I did surpass my goal each day though.

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.

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

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?