Physical Discomfort

Posted on by Astrid

I have been experiencing a lot of nausea lately and a bit of a decreased appetite. At first, I attributed the nausea to stress, then norovirus which was making its rounds here at the home. I was really sick with diarrhea and vomiting for only a few hours though, so it’s not even certain I had the virus.

If I have to be true to myself, I’ve been feeling a little unwell for a couple of weeks already. However, it’s really hard for me to tell when I even feel physically unwell and, if so, whether it’s “just” being a little off or it’s something I might need to see my GP for. For this reason, I usually keep going with physical discomfort for months. And even though alertness to my physical wellbeing is one of my care goals, my staff expect me to be able to signal to them when I’m having symptoms (and even when I do, it takes forever for them to take action).

Today, I did ask my staff to call the GP surgery tomorrow to inquire about my kidney function. It’s been decreased for at least a year and, even though I’ve had regular blood tests, I haven’t seen or been told of the results since the summer of 2022.

And guess what? Nausea and decreased appetite are a possible kidney disease symptom. So is itchiness, which I’ve had very badly for months. I don’t mind either symptom as much, in the sense that despite the decreased appetite I’m still eating well and I could continue putting cetomacrogol cream on my skin forever if the itch is nothing to worry about. But I want to make sure my kidney function hasn’t gone significantly further down.

And if it has – and honestly, even if it hasn’t -, I want a consultation with a psychiatrist to discuss tapering my psychiatric medications. I know, the ones that could cause kidney failure are the last ones I started – topiramate and pregabalin -, but I doubt either is very effective. Besides, I just don’t want to keep adding on to my med pile and, if my kidneys show further damage, I’ll need to go on meds for that too.

Let’s hope the staff don’t forget to actually call the GP tomorrow.

June 2023 Reflections #WBOYC

Posted on by Astrid

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?

April and May 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. In April, I didn’t get to post my monthly reflections because I was too busy with the #AtoZChallenge. Today, for this reason, I’m doing reflections for both April and May. I’m linking up with What’s Been On Your Calendar? (#WBOYC).

Honestly, I don’t remember much of the month of April. It was a really busy month in a way with me participating in the #AtoZChallenge on my blog, which I badly wanted to complete despite struggling with my mental health. In other ways though, it was a boring month, in that I hardly got to do anything creative. I also felt like I had to train new staff almost on a daily basis. By this I mean the fact that, almost every day, the least familiar staff member would be assigned to me and they’d be left with just the instruction to follow my day schedule.

I did work on an activity list detailing steps for each activity I usually do, but this unfortunately didn’t bring me closer to actually exploring creative activities with not-so-familiar staff.

In late April, my mother-in-law sent the behavior specialist an E-mail expressing my distress with the unfamiliar staff situation, as well as with the fact that no-one had told me anything about any progress re finding me a more suitable care home. During the month of May, I’ve had some meetings on this topic, but nothing has been decided yet and I’m pretty skeptical anything will be decided anytime soon. That is, unless the powers-that-be decide no place can be found for me.

Thankfully, I did have the #AtoZChallenge to inspire me. I did, for this reason, write 31 posts.

The month of May was a mixed bag in many respects. It was better than April had been on the care front. This did help me feel better, but it wasn’t like I could actually bring my many ideas for activities into action.

In early May, I went clothes shopping with my support coordinator and assigned staff. That same day, another staff also took me to a nearby lake to go for a walk and take some pictures.


I did over the month of May in particular develop some renewed interests, for example in essential oils. I also still want to buy a new blender, so that I can make smoothies again. However, I haven’t yet decided on one specifically.

I went to my spouse’s and my house in Lobith at least twice during the months of April and May. Honestly, my marriage is stronger than ever and I’m so happy about it!

All this being said, in general I very much feel as though my life has been “on hold” over the past few months. Though I did often feel quite inspired, I didn’t know how to put these ideas into action. I can’t completely blame the care home, but the fact that no matter what the staff here do to improve my situation I’ll never trust them not to mess up again, does contribute.

In the health department, I did significantly improve, at least on those measures I know. I lost weight and currently weigh 57.4kg, which is within the healthy range for my height of 1.53m. I also for the first time today got a cardio fitness level of 25 on my Apple Watch, which is in the “below-average” range (until a few months ago, I was consistently in the “low” range). Next month or in July, I’m due to get my annual bloodwork done and I’m kind of worried about that, particularly my kidney function of course. I do overall feel quite healthy though.

Trying to Live a Balanced Life

Posted on by Astrid

This week’s topic for Tranquil Thursday is balance. Maggie’s first question is about work/life balance. Since I don’t work and never have, I can’t speak to that. However, it made me think of the ways in which I need to create a balanced life in general.

I don’t currently have formal day activities. Of course, I have four hour-long activity slots a day, but I can spend them pretty much however I please and sometimes (most times, actually) I feel so uncomfortable with the staff assigned to me that we can’t do more than play a simple card game. I do feel I need to find a balance in my life between being active and passive.

Active, in this sense, does not necessarily mean exercising, although that too needs to happen. I probably don’t need to worry about being extremely sedentary. I fell pretty badly yesterday and still I managed to meet my movement goal on my Apple Watch today. Okay, my goal is just set to 300 active calories, but that’s so that it’s within easy reach even on bad days like today.

What I do mean by being more active is engaging more in stimulating activities such as crafting, food prep such as smoothie making, etc. I also intend to be more active where it comes to actually learning about these topics. I mean, I love copying recipes and experimenting just a tiny bit, but it’d be great if I knew about the science behind them. For this reason, I just downloaded a book off Bookshare on the fragrance aspects of essential oils. How great would it be if I could create my own blends rather than relying on some shady subscription website.

This doesn’t mean I need to be active mentally or physically all day. It’s about balance, after all. I also need to rest. But currently, I feel my life is a bit too much “on hold” for my liking.

Another way in which I need to find balance, which Maggie didn’t ask about, is health. Last week, I agreed with the dietitian on a weight range I need to stay in to maintain a healthy (or near-healthy) BMI and not go overboard with my weight loss. As long as I stay within this range, I am in control of my eating habits. I do need to make sure I don’t slip back into my bulimic tendencies though. I will see the dietitian again in mid-June and will ask her to continue check-ins with me, although they don’t need to be monthly anymore I think. Over the past few weeks, I gained a little weight, but I’m still within the agreed upon range, though I do notice I’m having “cheat” foods more regularly than I’m probably supposed to.

Another question Maggie asked is about your life pie. This is a drawing of a pie divided into six slices for each area of life. You then put dots in each slice to see how well you do in each area and connect them to see which area is relatively unfulfilled. This is a visual exercise, of course, which I can’t do, but it did make me think. My life is most fulfilled in the area of exercise and least, unless you count work (but that’s by societal standards only), in the areas of friends and play. That last one might surprise my staff, as I play card games on a daily basis. However, what I mean by this is truly being creative.

March 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means I’m reflecting back on this month’s happenings. I’m joining What’s Been On Your Calendar? (#WBOYC). Here goes.

This month would have started with my having the meeting on my care on March 2, but it got postponed yet again for the third time. I did get a visit from my mother-in-law instead and we took a walk through a nice park. Here are a couple of pictures my mother-in-law took with her phone of a remembrance stone we saw there.



The next Sunday, my husband and I drove to Ikea in Zwolle, where I bought a stuffed orang-utan. I so far didn’t show it on the blog yet, so what better day to do this than today?

On the other Sundays, my husband and I drove to Apeldoorn to have lunch at Backwerk. We did try visiting another lunch cafe once at the recommendation of one of my staff, but literally all tables were dirty.

On March 17, I finally had the meeting on my care. The positive aspect was that the powers-that-be will be looking for another, hopefully more suitable care home for me. The negative aspect is the fact that, in the meantime, nothing will change. This had me spiral out of control quite a bit, which my staff feel frustrated with.

Last week, it led to a bit of a disagreement between me and my assigned staff, because she got frustrated with my negativity. The way she worded it, even if my day schedule doesn’t get disrupted and I’m supported by regular staff for the entire shift, I still find a reason to complain. I countered that this hadn’t happened in months. Even this morning, with three out of four staff being regular employees, the fourth staff supported me for most of the shift.

In the health department, I did pretty well. I finally saw the dietitian last week and we concluded I no longer need to lose weight. Not that weight loss ever was a priority for me, more like a welcome side effect of my healthier-for-me lifestyle. The fact that I’d lost weight rather rapidly over the past five months, meant I had to up my calorie intake to prevent further weight loss. I did gain a bit of weight in the first week on my new food plan, but then again I did eat fries once in that week and a large burger another day. I’m not stressing about the weight gain at all.

In other health news, my cardio fitness level according to my Apple Watch has declined slightly and is in the “low” range again, though just barely. My heart rate recovery, on the other hand, is steadily improving.

All this being said, I’m trying to embrace my body as it is and appreciate my health for what it is.

In the blogging department, I did quite poorly, having written only eleven posts including this one. I am not sure how I’m going to do with the April A to Z Challenge given this reality, but I trust I can do it.

February 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means I’m reflecting back on the month that was. Like last month, I’m joining What’s Been On Your Calendar? (or #WBOYC for short).

The month of February, overall, was slightly better than the month of January. This was reflected in nineteen (including this one) blog posts in 28 days, compared to only thirteen in 31 days last month. However, it wasn’t “good” by any means.

On the 14th, we were supposed to have a meeting about my care, but this was postponed because my support coordinator was off sick. It has now been set for this coming Thursday but my assigned support staff told me it may need to be postponed again.

The last few weeks were okay care-wise and there were even a few days when I received optimal care by this home’s standards. On Friday, I told my assigned staff I might not want to leave this home after all, which she translated to my having decided I don’t want to leave. On Monday I tried talking to her about improvements that would make my life better here, but this led nowhere. Now I’m pretty sure that, since any attempt on my part to talk about improving my care situation leads to “but you can’t expect continuous one-on-one” before I’ve even stated my wishes, I’ve pretty much lost trust in everyone for good. And just so you know, this wasn’t my first attempt to talk about improving my care.

Craft-wise, I didn’t do as well as I’d hoped. I gave up on The Artist’s Way after barely a week and I didn’t expand on my creativity as much as I’d have liked. I was, however, invited to help decide on the monthly theme in the Dutch polymer clay Facebook group, which became “Unicorns” of course. Like I more or less expected, I was the only one contributing, but oh well. At least for once I could participate.

I did read a lot more than I’d expected in the past month. I have been reading more diversely too. This is related to the fact that I had a discussion with my husband a few weeks ago about queer identity.

Also due to said discussion, I decided to finally abandon Christianity. I’ve been struggling with my faith ever since becoming a Jesus follower at the end of 2020 and part of the reason is my queer identity. And just because I’m happily married to a man, doesn’t mean I need to disown that. I could, of course, still call myself a progressive Christ follower, but who would I be kidding then? If the God of the Bible exists, I’m going to be condemned whether I follow Him half-heartedly or not at all.

In the health department, I’ve been doing pretty well. My cardio fitness level is improving and is almost at below-average level rather than low. I also lost 2kg over the month and only need to lose just over 1kg to be at a healthy BMI. I haven’t heard what the institution nurse said yesterday about the cream not working for the burning sensation on my back.

Lastly, I bought a new computer last week, which I’ve now been using for a few days. I’d been dreading Windows 11 for years due to my fear of the unknown I guess, but it works quite similar to Windows 10.

#WeekendCoffeeShare (February 25, 2023)

Posted on by Astrid

Hi everyone on this last Saturday of February. Can you believe we’ll be rolling into March this coming Wednesday already? I definitely can’t!

I’m joining #WeekendCoffeeShare today. I just had dinner, but probably won’t finish writing this post until after my evening coffee at 7PM, since it’s 5:45 and I have one-on-one for an hour in about fifteen minutes. I’m reminded, as I type this, that the other clients’ evening coffee got moved to 7:30, so I’m afraid you’ll have to be content with a Senseo coffee (and so do I). Let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking about your weather, as usual. Ours has been mostly cloudy with some drizzling, but today it’s been sunny at least during the afternoon. Daytime temperatures rose to between 7°C (today, the coldest day of the week) and 11°C earlier in the week.

If we were having coffee, I would tell you that I didn’t do as well with my walking as I’d done last week, but on Tuesday, I did register 124 exercise minutes in a single day, all by walking. It wasn’t a record by any means, but it was the best I’ve done since moving to my current home.

I’m also trying to up my walking speed, because as of this week, I can see my trends on my Apple Watch and this is the downward trend that my Apple Watch claims is the easiest for me to turn around quickly.

If we were having coffee, I’d tell you that I’ve had a pretty good week in the care home overall. So much so, in fact, that, like I said yesterday, I’m not 100% decided I want to leave this home anymore. A lot depends on the outcome of the meeting with the behavior specialist, my support coordinator, assigned staff and mother-in-law next Thursday. In particular, I’m going to inquire about their ideas for me regarding day activities. Ideally, I could work towards going to a day center with part-time one-on-one support. After all, I’d really like to focus on having some actual day structure rather than having “time to rest” (some staff seriously use that term for my unsupported times) every hour at least.

If we were having coffee, I’d share that I asked my assigned support staff to contact the doctor about the burning sensation on my back that I’d mentioned on Wednesday. The way things work here, she had to contact the institution nurse first. The nurse recommended we try some cetomacrogol cream. I think it might indeed be my eczema acting up again. To be honest, the cream isn’t really helping yet though.

If we were having coffee, lastly I would share that my laptop started acting up a little last week, so I ordered a new one. My old one, which I’m still typing this post on, is over 3 1/2 years old and has been used a lot during those years, so really it’s not at fault. The new one has Windows 11 on it, which I’ve been avoiding installing on the old one (assuming it could be installed at all). I really need to look into the differences so that I can familiarize myself with the new operating system before this laptop completely dies. Going to do that now, okay?

How have you been?

The Wednesday HodgePodge (February 22, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday again so I’m joining the Wednesday HodgePodge. Here goes.

1. What do you find is the most boring part of your life at the moment?
There isn’t anything extremely boring about my life, but my life isn’t exciting either. I’d say the thing that makes my life a bit boring is the fact that, due to the way things work at the care home, I can hardly make plans.

2. February 22nd is George Washington’s birthday. You’ll find his face on the US $1 bill. What’s the last thing you bought for roughly $1.00? (.94 €/ .83 £)
I honestly can’t think of anything. I do probably have some cash in my wallet but rarely if ever use it. I also hardly ever go into a store just for something that costs like $1. The closest I could get, when I checked my recent purchases on my bank account, is €1.35 for a box of tissues, but that’s not roughly $1 I’d say.

3. Is it ever okay to tell a “little white lie”? Explain.
It’s never really okay, but it is understandable in some circumstances. Is there a difference? I think so, in that I can see why I or someone else would tell a “little white lie” in some situations, but that doesn’t make it right.

4. What’s the last thing you ‘chopped’? Cherry pie, chocolate covered cherries, a bowl of cherries, cherry vanilla ice cream, maraschino cherries, a cherry lifesaver…your favorite cherry flavored something?
I don’t think I chopped anything recently. Honestly, when I used to cut veggies when cooking myself, given the size I’d leave them, it wasn’t really considered chopping.

I don’t really care for cherry-flavored anything, so give me a bowl of the actual fruit instead.

5. Describe yourself with three words using your first, middle, and last initials.
Okay, this is hard, if for no other reason, then because I don’t have a middle name. My last name does have a prefix though so I’m going with that.
Authentic, Vivid imagination, Weird.

6. Insert your own random thought here.
I have this burning sensation somewhere along my spine that I’ve finally decided I’m going to ask the staff to call my GP about. So far, when I’ve asked the staff to take a look at where I think the sensation originates from, they don’t see anything but I do have a large mole on my back that I’ve been worrying about for months now. A picture of it did get looked at by my old GP back in Raalte and he said it wasn’t of any concern. Let’s hope he’s right and the burning sensation won’t be anything worrisome either.

Gratitude List (January 7, 2023) #TToT

Posted on by Astrid

Hi everyone. I have been struggling a lot lately. I am not the only one in my home – last night, everyone was irritable at least. This among other things caused me a lot of anxiety. To counter these feelings, I’m doing a gratitude list. As usual, I’m joining in with Ten Things of Thankful. Here goes.

1. I am grateful I haven’t caught a cold or the flu (or COVID!) so far. Everyone around me seems to have come down with something. Though cases of coronavirus are on the rise generally too, it seems to be mostly the common cold or flu around here, thankfully.

2. I am grateful I am currently on track with the Bible-in-a-year plan I’m following. Okay, it’s been only a week so far and, though I hope I’ll continue to follow through with it for the entire year, I am not too confident in myself about staying on track. At least I don’t plan on quitting.

3. I am grateful for a visit from my mother-in-law last Tuesday. She initially didn’t plan on visiting this week but thankfully changed her mind because I was already struggling a bit.

4. I am grateful for licorice. I bought some when at the supermarket with my mother-in-law and thankfully put it in my basket in the storage room so that I cannot reach it by myself. For this reason, I still have some left.

5. I am grateful for French fries yesterday. A fellow resident had his birthday, so the staff went out to get us fries and a snack.

6. I am grateful my UTI has gone. Not that I notice any difference in my body’s signals – I wasn’t picking up that I had it and, when I thought I had figured out what its symptoms were, I figured it still wasn’t over. However, I’m glad it’s cleared.

7. I am grateful I was able to teach several staff how to play the card game mau-mau. It was fun.

8. I am grateful for relatively mild weather.

9. I am grateful that, when everyone was irritable and several of my fellow clients were in crisis at night yesterday, the support coordinator stayed in the home for the night. I am grateful that I slept okay’ish in spite of several clients being out of control in the middle of the night.

10. I am grateful a nice staff was my one-on-one staff this evening. I am also grateful another nice staff popped in to say hi every now and again. Lastly, I am grateful that, this evening, my day schedule wasn’t disrupted.

What are you grateful for?

2022: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year, so in keeping with my tradition, I thought I’d do a review of the past year.

I started 2022 by reviewing the forms for my extra care funding application – my extra care had just been re-approved for two years at the end of 2021 – with the behavior specialist. “Extra care” is what I usually refer to as “one-on-one” here, but I’m told by several staff that it’s not technically one-on-one if it’s not full-time one-on-one. Whether that’s true, I don’t know. I made some suggestions for when the application had to be submitted again in two years’ time. With how much has changed over 2022, I doubt any of it will be relevant anymore.

I also started the year with a healthier food plan and by seeing a dietitian. Over the course of the next nine months, I lost about 4-5kg and, like I had hoped, got to a relatively stress-free food plan. I did, towards late summer, start overexercising a little, but I attribute that to the newness of my Apple Watch.

By April, things started to shift a little, as I officially voiced my wish to explore the possibility of my moving to the main institution or another care agency with an institutional setting. The behavior specialist and I created a housing profile with my needs and wants on it and the behavior specialist gave it to the care consultant.

As it turned out, he only got applications sent out to the main institution and to one other agency, an agency in elder care. The reason was the fact that said agency operates an assisted living facility for blind or visually impaired older adults. With the fact that my long-term care funding is blindness-based, it makes some sense, but the place isn’t suitable at all.

I did get to meet the behavior specialist and two support coordinators for the main institution. As it turned out, they did find a place they considered suitable, ie. my current care home. I moved in early October to what from the care agency’s website looked like my dream home. It quickly turned into a nightmare though.

Thankfully, during the timeframe of late November till late December, some things got settled. I’m still finding I feel very easily frustrated with some things in my home and I’m swinging between letting them go (which is very hard for me) and mentioning them (which may come across as me sweating the small stuff).

For one thing, I lost another 6kg during these three months that I’ve now been here. I know I am still overweight by a few kilograms, so in this sense it’s okay, but it does create some difficulties relating to my disordered eating habits. I’d really like to get in touch with the dietitian again.

In other health-related news, I got some med tweaks in 2022. First, I started pregabalin I think in February. Then, in April, I took my first step lowering my antipsychotic dosage.

I also found out during the summer that my kidney function was mildly decreased. I had it retested about two weeks ago and, though it decreased a tiny bit further, this could be because I have a UTI.

Let me also share about my creative endeavors of the year. I did a ton of polymer clay crafting and really loved it. When I moved to my current care home, I for a while had to let go of this hobby, but now I’m trying to slowly reinvent my creative self.

Lastly, faith-wise, I remain a struggling new believer. I am really hoping and praying that God will lead me further on the right path towards Him in 2023.