#WeekendCoffeeShare (July 24, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I’ve had my last cup of coffee for the day, as usual. I’m soon stepping back to put on my pajamas. Usually I shower on Friday evenings, but today there’s no staff who’s able to assist me. I’ll also take a break for my 8PM meds and evening soft drink. If you’d like to grab a cup of your favorite hot or cold beverage, feel free to and let’s chat.

If we were having coffee, first as always I’d talk about the weather. It’s been pretty good: partly cloudy with occasional rain and daytime temps around 22°C. We’re supposed to get some warmer weather again next week with daytime temps getting as high as 33°C on Thursday I believe.

If we were having coffee, then I’d tell you that some days, I’m able to get in quite a bit of walking again. My toe still hurts a little, but I was able to go off the naproxen and use just paracetamol now. Due to some stupid miscommunication, I’m now officially prescribed both naproxen and paracetamol, but I just refuse the naproxen.

If we were having coffee, I’d share that I’m still struggling majorly with feelings of self-doubt, worthlessness and anxiety. I am quite scared that my extra support hours will be cut. It doesn’t help that there’s major talk in the media about autonomy-based policy, which is an approach populated for people (particularly young women) with chronic, serious suicide or self-harm risk. The idea is that these people need to call for help in preventing self-harm or suicide rather than use these behaviors as a cry for attention. I can see the idea behind it, but it only works if these people actually do get the help they need in preventing harmful behaviors. Since one of the prerequisites is that help needs to be gradually reduced, I can’t honestly see it working for everyone. I mean, I’d love to gradually have my support decreased, but the pressure of it only causes me further problems. Now I’m too old to be a candidate for the official thing and I’m not even in mental health treatment, but the whole idea majorly triggers me. One of the psychiatrists behind this approach does say it’s not the same as leaving patients to fend for themselves, but that’s exactly how it can be used if the pressure from the higher-ups (up to the government) increases. The term didn’t exist in 2017, but if it had, it’d been exactly the code bluff my treatment team would’ve used for doing what they did, ie. kick me out of the psych hospital after nearly a decade with next to no support.

If we were having coffee, I’d end on a positive note by sharing that I cooked pasta for myself again on Wednesday. I used eggplant, capers and olives and it was a completely vegan dish, so I reckoned my fellow residents wouldn’t like it. I however did. That being said, my staff said the eggplant had turned a little greyish. It tasted fine though.

I’m generally more interested in learning about vegan cooking anyway. Not that I will be a vegan or even vegetarian, but I’d like to be a little more conscious of what I eat and also experiment with different ingredients. For this reason, I’ve been adding some more cookbooks to my collection, downloaded off Bookshare. One of them had vegan banana bread in it. I however struggle a little with using the recipes in my Voice Dream Reader app. Then I came across a vegan website that also included a banana bread recipe. I’m going to try to bake that one tomorrow. If it’s good, I told my best friend I’ll leave her a slice.

#WeekendCoffeeShare (July 17, 2026)

Posted on by Astrid

Hi all! I’m joining #WeekendCoffeeShare once again. It’s now 7:30PM, so I’ve had my last cup of coffee for the day. I need to take a shower in about half an hour, so will let my post sit for a bit then and return after I’ve had my medication and evening soft drink. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. We were supposed to get another heatwave here this week. Thankfully, it wasn’t that bad, but only barely so. It’s incredibly dry though. Here’s hoping for rainy weather soon.

If we were having coffee, next I’d tell you I won’t be having a perfect month with respect to my movement goal on my Apple Watch. It’s not necessarily because of the weather. Rather, last week Wednesday, I stubbed my toe and it led to a small fracture. The staff who was here when it happened (in fact, I stubbed my toe on his shoe) initially thought it was just bruised. Unfortunately, I took this to mean I shouldn’t be nagging even though the next day and the next and over the weekend, my toe hurt like crazy. I ignored the pain and kept walking. Then on Sunday, the pain was so bad that I could barely walk outside at all, so the staff who was with me at the time, said we should ring the GP on Monday. The GP’s nurse practitioner came by on Tuesday and said I probably suffered a small fracture indeed. Since it’s my little toe, nothing can be done, but she did give me naproxen for pain relief. It’ll likely take several weeks for my toe to fully heal, but next week, hopefully I’ll be able to get by with just paracetamol.

If we were having coffee, then I’d share that I had a meeting with the behavior specialist, team leader, my assigned staff and support coordinator yesterday about the moving plans. It turns out they have no plans of actually kicking me out against my will. They just believe, like the substitute behavior specialist said about a month ago, that a place for people with brain injury may be more suitable for me. Whether finding me a suitable place is possible given my current care profile and the extra support hours etc., will have to be determined. It’s all quite scary, but I’m not as scared as I was before I had this meeting.

If we were having coffee, I’d tell you I also had a meeting with the intellectual disability physician on Monday. I went down another 1mg of my antipsychotic. I’m now on 6mg of aripiprazole. I can’t believe I was at one point, for many years in fact, taking 30mg.

We also discussed my getting access to my medical records. Thankfully, she gave me permission. The GP will have to sign me into the system though.

If we were having coffee, I’d share that I didn’t cook last Saturday or Wednesday, but I did make another batch of granola on Wednesday. The reason I didn’t cook is the fact that I reasoned it’d be too hard for me given the stress of the two meetings I had. All this being said, I did help with preparing my own lunch by cutting up the vegetables I usually have as a side a few times. This was a good experience.

If we were having coffee, I’d share I did engage in a few creative activities over the past week. One involved making polymer clay earrings. The finished project didn’t satisfy me, but the process was fun.

I also created another unicorn-themed chalk pastel drawing. Can’t remember whether I shared this before, but one of the staff is incredibly creative and she at one point came up with this idea. I used a template for drawing the unicorn and of course I know my six-year-old niece can probably do it better than I can, but who cares? I’m more and more appreciating the fact that I can do something rather than focusing on what I can’t compared to non-disabled people.

This brings me to another creative adventure: photography. I’m hoping to soon take more pictures and to actually share them on the blog. I in fact subscribed to a few blogs that have photo prompts and am liking them a lot. I really would like to expand my creative horizons.

Every Move Counts!

Posted on by Astrid
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Hit 5,000 steps today and drop your achievement here — we’re cheering you on!
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I have had an Apple Watch for nearly four years. Its movement goals are based on calories burned while being physically active rather than steps. It doesn’t even automatically display your step count. I just checked the Health app on my iPhone and my step count on there is nearly 7,000 at 7:30PM.

Because I get most of my physical exercise through walking, I can safely assume that a day’s step count at least correlates to my level of physical activity for the day. That is, unless I rode the side-by-side bike to the next town or even farther.

My calorie goal on my Apple Watch is 300. This goal is fairly easy to reach if I go for at least one walk. Even if I don’t walk, I can still reach it by dancing for about 20 minutes. The only times I didn’t reach my movement goal, were times when I wasn’t physically active at all, like during last week’s heatwave.

That being said, level of physical activity alone doesn’t determine health benefits. Effort does too. People who use a wheelchair full-time can still experience some health benefits of physical activity when they challenge themselves beyond their comfort zone. At least, this applies to brain health benefits. For metabolic health, actual movement is required. But not necessarily steps.

I honestly believe that I, even though I regularly hit those elusive 10K steps, experience fewer health benefits from my physical exercise than many who get in fewer steps. I mean, like I said, most of my physical activity involves walking. I should really incorporate more varied exercise into my routine. I do try to challenge myself physically even though this is in ways non-disabled people wouldn’t consider challenging. This way, I hope to keep my mind as sharp as possible.

#WeekendCoffeeShare (June 13, 2026)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s 7:40PM as I start typing this post, so I’ll soon take a break for my evening soft drink and chips. I made a smoothie for myself and my fellow residents about an hour ago. It was good. I used frozen mango, pear, flaxseed and soy milk. Feel free to grab a virtual cup yourself (I’m pretty sure the real smoothie has all been consumed). Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. For most of the week, we had daytime temperatures around 18°C. We also had rain, wind and some thunderstorms.

If we were having coffee, next I’d tell you that this week, the institution’s four-day evening walking event was held. That is, two out of four walks were canceled because of a code yellow weather warning for thunderstorms. On Thursday and Friday, the walk did go on, but we were soaked in rain on Thursday.

If we were having coffee, I’d share that I’m still going strong with my movement goal on my Apple Watch despite the weather. I’m not meeting my exercise goal each day, as sometimes the weather only permits one short walk, but apparently it’s still easy enough to burn 300 active calories each day. I am currently only 1kg overweight, by the way, which is why it kind of surprises me I still meet my goal relatively easily.

If we were having coffee, I’d tell you my week has been hard in other respects. Early in the week, I needed support during the night, waited patiently for a staff to make his way from the main building to me only to find out later on he’d been spending ten minutes putting away dangerous objects from the living room before seeing me even though there hadn’t been a reason to think I’d use them. I heard him rummaging about in the living room, so asked what was going on, thinking maybe it was a fellow client. He said it’d been him, the night staff. “And it’s night, so please go to sleep.”

A few nights ago, I did go to the kitchen and pulled out scissors but didn’t use them. This prompted the night staff to request the kitchen be locked at night again because of the time it takes the staff to make their way here. This request could’ve been reasonable (if a little overboard), if not for the fact that the kitchen only has a gate, not a full-size door. This means I can easily climb over the gate using a chair, causing a fall risk that in my opinion outweighs the risk of me self-harming using one of the objects in the kitchen. Besides, if you want to eliminate every risk of a client self-harming, well, you’d need to drug them up and tie them down. This question, whether clients need to be kept safe from harm at any cost, has been on my mind a lot. As much as I cling to life itself though, surviving is meaningless if my quality of life is poor.

This same issue came up on Wednesday when I saw the physical therapist. She’d recommended I start using a rollator walker. I’m not altogether against it, although I did say so when she came by with it, but that’s more because she claims she won’t do anything for me unless I start using the walker. The reason I’m leaning towards rejecting it for now is the fact that with it being incompatible with a white cane, it’d lead to even further dependence on non-disabled people than I already experience. I know it’d theoretically at least cause me to walk more safely, but the only times I’ve fallen over the past year have been times I didn’t wear my orthopedic footwear for one reason or another (usually because it was at the repair shop yet again). The physical therapist keeps saying nothing can be improved about the footwear, promised me an extra pair of shoes but never got to actually making sure I’d get one and is now saying I shouldn’t walk as much as I do. She isn’t giving me any alternatives to walking either. This and other things make me believe the professionals’ feelings about risk are more important than my feelings about my quality of life.

If we were having coffee, I’d share that I’m stressing quite a bit over the divorce. The final appointment with the mediator was supposed to be last Tuesday but got postponed a week for practical reasons. I’ll also have a meeting with the client confidante, my assigned staff and the behavior specialist on the same day. I try to separate the divorce from my care situation. However, the fact remains I’ll be literally homeless without the care home from this coming Tuesday on.

If we were having coffee, finally I’d share that I was on the phone with my wife between my evening soft drink and finishing this post. I told her I’d been making smoothies. Then we got talking about blogs. My wife joked that mine isn’t juicy enough for the divorce mediator to read, so I replied that I’d have to share smoothie recipes to make it juicier. That made her laugh out loud.

#WeekendCoffeeShare (May 23, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I originally started typing this post yesterday evening but got distracted and distressed and then never finished my post. It’s now nearly 9PM on Saturday. I just had my evening soft drink but since it’s blazing hot out here, I’ll have to make sure to drink plenty of water. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d expand on my comment about it being blazing hot and talk about the weather. Early in the week, the daytime temp barely got above 12°C and we had rain. On Wednesday, the daytime temperature started to rise and today it’s 30°C. I honestly don’t mind as much, although of course it still being May this makes me worried for the real summer.

If we were having coffee, then I’d share that I am still in the game for a perfect month with respect to my movement ring on my Apple Watch. April was a hard month and I didn’t meet my goal several days. This month, I’m probably not going to meet my monthly challenge goal, but at least I still have a chance at closing my movement ring each day.

Yesterday, the staff and I originally planned on riding the side-by-side bike to the nearby lake for a cup of coffee (and my favorite caramel pie). Unfortunately, the bike wouldn’t work properly so we went for a walk instead and stopped by the institution townhouse for a coffee. They sometimes offer cake too, but apparently not this time.

If we were having coffee, I’d share that I made use of both my culinary activity time slots this week. Today, I baked a banana cake. The bananas should’ve been riper, but it was okay nonetheless.

On Wednesday, I cooked a one-pot pasta dish with broccoli, chicken and pesto sauce. I’ve given up my idea of cooking vegan dinners only, because all the prep is just too hard.

Besides, the behavior specialist noticed how happy cooking for my fellow residents made me and talked to my support coordinator about it. Soon, I’ll likely have a weekly opportunity to cook for my side of the home. Whether this will be full-on dinner prep each week, will have to be decided on.

If we were having coffee, next I’d share that the behavior specialist came by on Thursday for a talk. It’s a shame she’s a substitute, because it looks like she’s much more understanding of my situation than the regular one. I do hope that she’ll be able to talk some sense into the regular one when she comes back in a month or so though.

It isn’t like she wasn’t critical of me, of course. For example, she asked me whether there’s any risk in my writing about my life in the institution openly online for this care agency. I was up front with her that I can be quite harsh in my criticism of my staff and, if they read it, they may recognize themselves. However, I never name my institution or any individual workers. Not that, being that I’m not an employee, there’s any law prohibiting me from naming and shaming the institution if I so wished, but I can see it wouldn’t help my relationship with my staff. That’s why I don’t usually give out my blog address to staff.

One of the positive outcomes of our meeting is the fact that the behavior specialist and I got talking about my IQ. As regular readers of this blog know, the IQ that’s in my care plan was pulled out of mid-air, in that no-one except for me knows where it came from and until now, no-one seemed to care. It turns out she’d been looking for the report and couldn’t find it. Phew, finally! I explained that the report is nowhere to be found except on my personal computer. The report literally dates back to 1999 and isn’t the best childhood psych eval report I have at that. But it’s the one with the catchiest punchline, ie. the three-digit IQ score. I never realized myself until very recently that most staff, being practically educated, go right for catchy bullet points and, as a result, won’t remember the pages and pages of information about my emotional development when they’ve been wowed about my “super high” IQ. In any case, here’s hoping the behavior specialist will finally get this nonsensical number removed from my care plan.

If we were having coffee, I’d then ramble on non-stop about the other issues this meeting brought up. Do you have a couple hours? I just deleted an incredibly long paragraph because I saw my post was fast approaching 1000 words. Instead, I’ll wrap this up and go to bed, as it’s nearly 11:30PM by now.

#WeekendCoffeeShare (March 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s 7:30PM as I start typing this, so I’ve had my last cup of coffee for the day and will take a break from writing this post at around 8PM to have my evening fizzy drink. Actually, Dubbelfrisss, which I generally have, isn’t very fizzy, being that it is only slightly carbonated. That’s a good thing, since I can’t stand actual fizzy drinks. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been incredibly warm all week with daytime highs above 15°C each day. Today we even had a daytime high of 18°C. It’s been sunny for most of the week too. I know, climate change and all and we’re probably getting summertime temps above 30°C, but for now I love this weather.

If we were having coffee, I’d also proudly announce that I broke my exercise record on my Apple Watch again. Yesterday, I got in 190 exercise minutes, both by walking and by biking to Deventer.

If we were having coffee, I’d tell you that I rode the side-by-side bike to Deventer twice this week, both times looking for new clothes. On Tuesday, I bought a few jeans and a blouse. Yesterday, I initially wanted to buy a blouse and a shirt, but didn’t end up buying those when I found out they were rather light-colored. So is one of the jeans I bought on Tuesday, so now I’m afraid I’ve stained it beyond cleaning already. This once happened with a pair of off white pants I bought with a staff several years ago and my wife said wise staff won’t let me wear light-colored clothes because of the risk of me spilling coffee over them. I told the staff I went clothes shopping this yesterday and she said I could put a napkin on my lap to prevent this. The thing is, I only need to forget this once for clothes to be ruined by coffee stains. I’m now unsure as to whether I was wise even having gone clothes shopping with her.

If we were having coffee, I’d tell you I’ve been playing around with AI a bit. Last Saturday, when I shared the Warmies unicorn soft toy on here, I tried to take several more pictures, but none were better than the one I’d posted. Then I decided to ask CoPilot to edit the image to make the unicorn stand out more. I don’t know whether the original picture was recognizable as a unicorn, but I loved how CoPilot recreated it.

For reference, here’s the original photo I took.

If we were having coffee, lastly I’d share that I finally saw my new, activity-based day schedule, to be taking effect on April 1. To be honest, it’s a bit disappointing, in that my assigned staff just added the activities I’d proposed to it and that’s it. How this could take months of “thinking” to take effect, I don’t know. On top of that, the new schedule will take effect on the same day the home will start having a new staffing schedule too. My support coordinator told me there’s no shortening of hours, but at an important time for me, there is. You see, when I proposed my activity-based day schedule, I’d added my daily cup of tea at around 9PM into it, both to make the schedule more aligned with reality and because that cup of tea truly helps me make it through the night without support. Unfortunately, it’s not in my new day schedule and staffing will be cut at 9PM too. I for clarity’s sake don’t need one-on-one attention then, but it does help when staff keep an eye on me. My support coordinator, who told me about the staffing changes and new day schedule, said I can’t expect everyone else to be in bed by 8:30PM because I want my cup of tea and there’s not enough staff to keep in touch with me and help the others to bed at the same time. No, I can’t, but it’s not me who cut those hours. Several staff have told me I’ll have to wait and see how things go and no-one is prohibiting me from having a cup of tea, but then why can’t it be in my day schedule?

#WeekendCoffeeShare (February 27, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s just past 5:30PM as I start typing this blog post, so I’ll still have my evening coffee at 7PM. If you’d like to grab a drink too, feel free to get yourself a cup or glass of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been crazy! Crazy good in my opinion, in that yesterday and on Wednesday, the daytime temp climbed to 17°C. Today we had a daytime high of 15°C and more wind. It’s raining now too, which I’m told is necessary, as the winter has been horribly dry over here.

If we were having coffee, then I’d tell you that I reached my movement goal on my Apple Watch each day this week. Yesterday and on Wednesday, I even doubled it. I also broke my exercise minutes record yesterday. I mostly went for walks, but on Tuesday, I also rode the side-by-side bike to Deventer to get some shopping done. City representatives were having a survey about the bike-friendliness of the city. I accepted the flyer because the person handing it out was making a fuss of how special the side-by-side bike is. And also, we got a free serving of “poffertjes”. Note to self: actually do that survey!

On Wednesday I also rode the side-by-side bike to the nearby lakeshore to have a cup of coffee and a piece of caramel pie. No pictures this time, but it’s the same caramel pie I had a few times last year too. I must say, this place is pretty budget-friendly, in that I only paid €6.95.

If we were having coffee, I’d provide an update on my medical situation. I had bloodwork done on Monday because of increasing IBS symptoms. Thankfully, nothing came out of it. I’m okay just dealing with the pain and discomfort, knowing that at least it’s not something more serious.

This is not necessarily the case with respect to my involuntary movements and tremors. Like I shared on Saturday, my doctor says they’ll only get worse because I’m getting older. I call bullshit to that, in that, while literally everyone gets older, it’s not like I’m elderly at 39. My wife looked up tardive dyskinesia (TD) as a result of medications, which my doctor didn’t mention specifically but then again she never mentions anything specifically. If I have this, there’s some medication for it in the works, but it isn’t available in Europe yet.

My wife at one point mentioned that this medication is prescribed to people with Huntington’s Disease too. I know there are similarities between tardive dyskinesia and Huntington’s, but I didn’t know how far these go. I finally joined a TD group on Facebook and asked. Thankfully, TD is not a death sentence and it may not even progress. That doesn’t mean I’m no longer distressed, because, quite frankly, unlike my IBS symptoms, the involuntary movements significantly impair me.

If we were having coffee, I’d tell you I decreased my antipsychotic again starting today. I’m now on 9mg of aripiprazole. I’d expected to get one 5mg tablet and four 1mg tablets, but for some stupid reason I got nine 1mg tablets. This means I can now just about barely swallow all of my pills at once.

If we were having coffee, finally I’d share that the talk with my support coordinator on Sunday was a bit disappointing. There are several things about my care that frustrate me and she told me it’ll take months before there’ll be any significant changes. Thankfully, she didn’t mean my day schedule. That might change a little sooner. She also scheduled a meeting with the behavior specialist who’s now responsible for my home now that the regular one is on maternity leave. That meeting will be on March 10.

#WeekendCoffeeShare (February 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. No more coffee for me today, as it’s nearly 8PM. Please grab yourself a cup of your favorite beverage though and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been all over the place. We’ve had rain, sunshine, temperatures around 9°C and freezing nights. In the province of Groningen, there was a code red weather warning for ice.

If we were having coffee, then I’d share that I haven’t been very physically active again this past week. That is, I did go for walks almost each day, but I didn’t do any other exercise.

If we were having coffee, I would share that I however was quite crafty over the week. I made a bracelet and tried making another one. I also tried to work with a texture mat on polymer clay for the first time today. The result was interesting.

If we were having coffee, then I’d tell you that the homemade granola I baked last week was a great success. I made another batch on Wednesday, this time adding instant coffee. This one didn’t turn out as awesome as the previous one and I’m not sure whether it’s the nuts maybe having gotten slightly burned or it’s the coffee flavor not matching well with the other flavors. I gave some to a fellow resident who likes trying homemade food, but he didn’t like it.

If we were having coffee, I’d tell you that I finally heard from the Center for Consultation and Expertise (CCE) consultant. I received a short note describing recommendations she’d make to my care team. She’s going to provide continuing education to the care team on these things.

I don’t know how to feel about the whole thing. On the one hand, I’d like to see her saying she’s going to educate the team as a sign that I don’t need to change but the team’s approach to me does. On the other hand, it still stings that she hardly spoke to me and not at all without the staff being present. I still have quite a lot of questions, but her work with me has ended with this letter.

If we were having coffee, I’d tell you that the occupational therapist came by here this week to shed some light on ways to help me cope with my hand tremors. She hoped a weighted wristband would help. I was initially quite optimistic, but on the first try when my hand was trembling, I noticed it not only made no difference in that respect, but the thing was in the way when I tried to operate my iPhone.

I from noticing that got rather frustrated once again about the doctor not being clear about what causes these tremors. She claims it’s aging, stress and maybe medication, yet refuses to taper my meds more quickly. I’m kind of worried that, like the CCE consultant and practically everyone involved in my care, she’s not giving me the full story. I know I have a right to information regarding my medical care, but there are exceptions to this when the clinician believes this information would significantly harm the patient. If this is the reason I keep getting only vague comments about my medical situation, I want to tell my physician I’ve already envisioned the worst and the uncertainty is more harmful to me than it would be knowing I have, like, a neurodegenerative disease.

If we were having coffee, lastly I’d share that my ears are blocked and I hardly hear a thing out of my right ear. I will get them syringed on Sunday.

#WeekendCoffeeShare (January 30, 2026)

Posted on by Astrid

Hi all! I’m joining #WeekendCoffeeShare today. Yes, on a Friday. Tomorrow, I’ll wrap up the month of January, but I really want to write today too. It’s 7:30PM as I start typing this, so no more coffee for me. I’ll once again take a break at 8PM for my Friday evening chips and soda. I’ll have to shower too, so may not return to the computer until like 9PM, because I don’t want to be using the computer with wet hair. If you’d like, grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been chilly. Scratch that: it’s been cold! Daytime highs early in the week were around 4°C, but yesterday I believe it was freezing almost the entire day and we got snow again. I want spring, for goodness’ sake! It isn’t helpful to realize that February is the coldest month of the year here in the northern hemisphere.

If we were having coffee, then I’d tell you that I hardly walked all week. That is, today I did go for a 45-minute walk around grounds because I wanted to orient the home’s team leader, who’s working one day a week at our home as a support staff, to my walking routine. Yesterday, I didn’t walk at all, but did somehow activate an outdoor walking workout on my Apple Watch while just pacing around my room. I was also sitting down a lot and only managed 100m or so in 34 minutes. Thankfully, I was able to delete the “workout”.

If we were having coffee, I’d share that, on Sunday, I bought a new winter coat. I gained a little weight, so my old one was a bit too tight and had a tear in it. My wife offered to fix it, but after thinking for a bit, I said no. Unfortunately, I’d left my gloves in it and she’d already taken it home with her when I realized this, so this meant no gloves for the entire week. By the way, the new coat cost only €30.

If we were having coffee, next I’d tell you I didn’t end up going to the Eye Association meeting I was supposed to go to today after all. I shared last week that I had planned on going to a meeting for people with mild cerebral palsy this Saturday (January 31), but had decided against it for transportation reasons and because I had another meeting today. Well, early in the week, my assigned staff told me she wanted to talk some things over with me. Besides, I thought I had a physical therapy appt today too. Looking back, the things my assigned staff wanted to discuss, weren’t of major importance and the physical therapist’s appt was yesterday, but well.

If we were having coffee, finally I’d tell you that one of the things my assigned staff did want to discuss, is my day schedule. Unless the behavior specialist or my support coordinator has major objections, I’ll finally have two weekly kitchen-based activities in it soon. The staff did ask that, when I cook, it’s initially just for myself and maybe one or two others, because if we decide I’ll cook for the entire home, this means too much pressure on me (and potentially the staff). I agree with this.

Trying to Celebrate Small Wins #JusJoJan

Posted on by Astrid

Hi everyone. I have been struggling with mixed feelings about my day schedule and the things I accomplish or don’t accomplish during the day. Sometimes, I feel like there’s been quite a lot I’ve done, but on other days, I focus on the hours I’ve spent staring at the wall.

The difference isn’t just dependent on how much I actually did in terms of crafting, cooking, walking, reading, etc. It’s sometimes also a matter of perspective. I mean, I spent most of my allowed activity time slots just chatting with staff today. I could focus on that and on the fact that, with some help, I could’ve turned them so much more productive. Then again, I could also focus on the things I did achieve. Today, for example, I crafted a polymer clay snake.

It frustrates me to no end that my day activity goal is so vague that it’ll be achieved regardless of what I do or don’t accomplish during the day. I had worded the main goal myself, saying I’d like to do at least one meaningful activity each day. To this, however, my then assigned staff added examples, including dice games, and a caveat that if it looks like I’m in distress or tired, the staff can suggest doing smalltalk or extra moments to lie in bed, saying everyone needs rest. By this logic, each day is meaningful even if I’d spent it entirely in bed.

And that’s not entirely untrue. What makes it untrue is the part where staff decide for me which activities give me meaning and when it’s appropriate for me not to engage in them. In other words, it’s worded as an excuse for staff not to help me find and engage in meaningful activities. If I chose to lie in bed all day, like I did last September when sick with probable COVID, it’s quite different from all the times staff have suggested I lie down. If I chose to be lazy, it’d be on me, but if the staff choose to be lazy and twist it to mean they’re meeting my needs, we’re having quite a different situation.

I do try to celebrate the small wins though. Like today’s snake. That doesn’t mean I can’t wish for improvement, particularly because a lot could be improved without me getting more support hours. Would it be harder on the staff? Possibly, but not necessarily. I mean, listening to me moan about my quality of life, is no doubt exhausting to some staff too. And besides, it isn’t my task to make staff’s work day meaningful.

However, it does help me personally to focus on the things I do achieve rather than the things I don’t. I’m genuinely happy about the snake I crafted. Yesterday, I even did two crafty activities and met my movement goal on my Apple Watch by walking. I try to celebrate that. Celebrating my small wins gives me joy.

This post was written in response to today’s prompt for #JusJoJan, which is “celebrate”.