March 2025 In My Kitchen

Posted on by Astrid

Hi everyone. I enjoyed the linky last month, so am participating in In My Kitchen again.

As regular readers of my blog will know, I don’t have my own kitchen because I live in an institution. We also usually get our dinners from a meal delivery service. Last month, I shared that I was hoping to do some more cooking in March. Guess what? I cooked dinner for myself and my fellow residents twice this past month.

First, on March 5, I cooked pasta with pesto, chicken and broccoli. My spouse joked after seeing the picture that the pine nuts were on sale. In reality, I hadn’t originally planned to sprinkle the pasta with pine nuts but my staff had loads of them, originally intended for her parrots, who don’t even really like them or that’s what she said.

A little over a week later, I cooked pasta again. This time, I included shrimp, lots of garlic, peppers, a few packages of mixed veg and, because according to me this was too little for ten people, a few bell peppers too. I needn’t have worried, because everyone had enough to eat and there were still a few servings left to go in the freezer.

I also made a few smoothies using my blender. Unfortunately, last week I found out that, somehow, the ring-shaped thingy that keeps the blades in place, had broken. I erroneously thought this meant the entire blender should be discarded. Yesterday, my spouse and I went to the electronics store and bought a new one, actually I believe it’s the same one I had. I also recently learned that I can actually make more smoothie with my blender than I used to think. After all, when you fill up the blender with fruit, veg or whatever you’re blending, you shouldn’t fill it up fully. Until recently, I however thought that this means you’re left with only, say, half the blender’s content of smoothie and that’s it. I never realized that you can add more food once the blender has finished blending some of its contents. Stupid, I know, but oh well.

In other kitchen-related news, my assigned staff has told me that she’ll add a weekly cooking activity into my day schedule. I don’t yet know when this is going to happen, but I did hear that my one-on-one support has been approved until the end of 2026 again. Yay!

#WeekendCoffeeShare (March 29, 2025)

Posted on by Astrid

Hi everyone on this last Saturday of March. I’m joining #WeekendCoffeeShare today. It’s nearly 8PM as I write this, so no more coffee for me. However, a fellow client’s parents brought us cheese, sausage and maybe other little snacks to go with our soft drinks this evening. I’ll have apple and peach-flavored Dubbelfrisss as usual. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been mild most days with daytime temperatures around 15°C, though night-time temps have been around freezing. We had a little rain on Sunday I believe, but I think that was before I woke up. Honestly, I’m pretty sure nature could use some showers.

If we were having coffee, then I’d talk about my physical fitness routine. I am still going strong with my goal of a perfect month on my Apple Watch and, on Thursday, got in over 20K steps again.

If we were having coffee, then however I’d moan about my tremors. I’ve mentioned a couple of times that my right leg trembles horribly sometimes and, usually when it’s been happening, the rest of my body follows suit and starts twitching. Yesterday, it was really bad. My intellectual disability physician usually says it’s most likely influenced by stress, though both of us know that my medication (particularly my antipsychotic) could be causing it too.

With respect to my meds, I’ve often been reacting out of fear of becoming unmanageable and for this reason asking for a very slow taper. My physician has been constantly asking whether my life will become more difficult soon due to for instance more temp workers, because apparently that’d be a reason not to taper further for a while. Now I’ve decided that being manageable is not a reason to put my body through the effects of strong meds. Besides, yesterday I had an aggressive meltdown precisely because I couldn’t cope with the tremors anymore. Now thankfully on Monday my staff will contact the intellectual disability physician, my GP or both.

If we were having coffee, I’d also moan about my shoes. I’d worn one pair of orthopedic shoes for only a week last Thursday and they were already badly damaged. The physical therapist took a look at them and said she thought the orthopedic shoemaker might not have done the last repair properly. I’m not sure that’s the reason they get damaged so quickly. On Friday though, the physical therapist came by and took a video of my walking, which she is going to compare to a video she took about half a year ago. I’ll see her again next Friday and hope she’ll have some ideas.

If we were having coffee, I’d share that I’ve been having bad memories of my time in the mental hospital. Like I said above, the intellectual disability physician here constantly talks about the possibility of more temp workers as an excuse not to taper my medication. This was precisely why I was prescribed medication in the first place: I’d become severely irritable because of the large number of temp workers at the time and my psychologist was threatening me with seclusion if I continued to have meltdowns. Similarly, when on the locked ward, I was literally told I’d be locked up in the “quiet room” if I needed more care than they could provide. I realize rationally that this is institutional abuse, but I’ve internalized a lot of all the bullcrap institutions feed me.

If we were having coffee, I’d end on a somewhat positive note by sharing that the behavior specialist finally filled out the forms to get the Center for Consultation and Expertise involved on my case.

#WeekendCoffeeShare (March 22, 2025)

Posted on by Astrid

Hi everyone. It’s nearly 10PM here. I really wanted to write today but, for reasons I’ll explain in a bit, didn’t get to it. I’m joining #WeekendCoffeeShare. No more drinks for me except maybe some water, but if you’d like to, feel free to grab your favorite beverage.

If we were having coffee, first I’d talk about the weather. It’s been absolutely delightful. Yesterday, the daytime temperature was as high as 22°C and I wore a skirt. I usually don’t wear skirts in colder weather because I don’t like wearing tights. It felt so good to be able to wear a skirt. I also loved the sunshine.

If we were having coffee, then I’d tell you that I got in a lot of walking again over the past week. I really liked being active.

If we were having coffee, next, however, I’d share that I’ve been struggling badly again. I had an unannounced visit from the behavior specialist on Monday. My initial question was whether any progress had been made in involving the Center for Consultation and Expertise on my care. The answer to that was “No” and the behavior specialist didn’t offer any clarity on when she was going to get the ball rolling. My feeling is it’ll be 2034 by the time they get involved.

She did, however, have a lot of new so-called “agreements” (I’d call them executive orders) on my care. She pretty much ignored my input and there’s nothing about the things I said in the bullet points my assigned staff wrote in my records. Some of the new rules include:


  • New staff get only one chance to be oriented to me for each task (activity, morning routine, meal) and then they’re supposed to be “regulars” and can be assigned to me whenever the staff want. If I am not accepting them for their orientation time, it’s a missed opportunity on my part. I didn’t find out about that last bit until today.

  • I can be physically dragged to my room if I’m having a meltdown in the communal areas.

  • Staff will no longer be forced to rotate almost each support moment. Sounds good and it was what I wanted, but now they’re supposed to decide at the end of each moment who will come for my next moment, giving me only half an hour to adjust.

If we were having coffee, I’d tell you that the staff tried to orient three new “regular temp workers” (that’s an oxymoron in my opinion) to me within the next three days. I didn’t accept two of them. One because it was the evening after the meeting with my behavior specialist and a relatively new staff would be orienting her colleague. The other, I never said I wasn’t accepting but I was in a lot of distress and somehow my assigned staff made up that it was because of the new one.

The third one, I accepted without protest for my morning routine even though I later found out staff are supposedly first oriented to an activity. The staff being oriented kept asking me whether I’d explain things to her if she forgot. Well, actually, no, since I’m pretty easily overloaded by lots of questions. “She does pay attention, don’t worry,” the regular staff told me. Well, I do worry.

Unfortunately, I got a lot of negativity in my records for my behavior and yet there wasn’t the slightest acknowledgement of the fact that I’d accepted the third new staff without protest. That feels intensely unfair to me.

If we were having coffee, I’d share that the support coordinator did, for some reason probably only he knows, decide the new “regular temp workers” can’t be assigned to me yet even though by the behavior specialist’s rules, I’ve had my chance with all three. I am grateful for this, although I do understand I’ll need to accept them soon enough. That, hopefully, will go okay.

If we were having coffee, lastly I’d share that I’ve been writing up positives and negatives of the day each day for a few weeks now. Looking over these, it shows that I do appreciate small joys.

For example, there’s a new sensory room on the other side of the home and I’ve been eager to use it. I’ve also donated some stuffed animals and cushions to it.

March Memories

Posted on by Astrid

Hi all! Can you believe we’re already halfway through March? I honestly feel that time flies. Today, I want to share some random memories from Marches (is that a word?) gone by.

First, a year ago, I had just recovered from second-degree burns that I sustained in a crisis. Looking back, my life is much better now than it was a year ago, when we were in the midst of a weird idea from the staff that said I had to compensate for every minute I needed support outside of my designated one-on-one hours because of distress. I sort of understand the reasoning, because, at the end of February, I had shared with my behavior specialist and some therapists that, in an ideal world, I’d be able to rely on staff all the time. What I didn’t realize at the time, thanks to all the words about “unsupported time” in my day schedule, is that this is basically already the situation in 24-hour care. Of course, I can’t always expect a staff to show up in no time when I need one, but it isn’t like I’m ever truly supposed to be self-reliant. That’s until that crazy idea about compensating came to be, because, as one of my staff said it, my “unsupported time” was supposedly my structure. Let’s just say I disagree and am so happy that, after a month, the system was abandoned at the end of March again. Now, it’s actually in my day schedule that I can rely on the staff for support when in distress during my times of doing my activities by myself.

Two years ago, I finally had a meeting to discuss my leaving the intensive support home. I’m so very happy I insisted. I remember the intensive support home’s behavior specialist was a bit critical, because, well, I apparently hadn’t left the care facility in Raalte in 2022 completely voluntarily. As it turned out, some staff had been more happy that I’d finally gone than they had admitted. This is somewhat understandable, given that all other clients there had severe to profound intellectual disability and no or minimal challenging behavior.

I can’t believe I’ve been at my current home for eighteen months already. As I share these two snippets, one from 2024 and the other from 2023, I am intensely grateful. I am still struggling at times, but then again I was even at the best of times in Raalte.

Sharing this post with RDP, for which the prompt today is “March”.

Share Our Life (March 2025): An Average Day

Posted on by Astrid

Hi everyone! Today I’m joining Share Our Life, a linky with a monthly theme. This month, it’s to describe an average day in your life. Unfortunately, taking pictures is not part of my average day. I really want to change that, but for now, just text will have to do. I didn’t pick a specific day to describe.

I usually wake up at around 7:30AM when the staff are helping the resident in the room next to me with her morning routine. Since my first support moment isn’t until 8:15AM, I usually have a little snooze.

8:15AM is when my staff come to wake me up and help me with my morning routine. I hate showering, so don’t do it each day. I get dressed and have breakfast – usually quark with muesli and blueberries. My morning routine, including breakfast, can take up to an hour.

At 9:15AM, I’ll usually lie back in bed for a little slumber while listening to music on my music pillow.

My first activity time slot starts at 10AM. I sometimes extend my lie-in until 10:15 or 10:30AM. I start my activity time slot with coffee and then I’ll usually either play a card or dice game or go for a walk.

By 11:30AM, my staff leave to prepare my lunch. I usually eat two slices of bread with peanut butter and a cracker with speculoos (Biscoff). I also consume a serving of veg with my lunch. My lunchtime is at noon.

By 12:15PM, I’m done eating and will be on my phone for a bit, reading the news or texting or calling my spouse, who is then usually taking a break.

My two-hour activity time slot starts at 12:45PM. This time slot was originally intended for more time-consuming activities such as a bigger polymer clay project, going out to the nearby town, etc. Occasionally, I’ll use this time slot for cooking dinner for myself and my fellow residents. Often though, I can be found walking grounds with my staff. I’ll end my activity time slot with coffee, although I might also have a cuppa by 1:45PM already.

My staff go into handover at 2:45PM and I’ll most days use up the 45 minutes until my next supported moment with some online activities. By the way, handover doesn’t take 45 minutes, but it’s not like I need one-on-one all of the time.

During my 3:30PM activity time slot, which lasts an hour, I commonly play a dice game. I sometimes also go for another walk. I have unsupported time again for 30 minutes after this while my staff help the other clients with their dinner. My dinner is at 5PM. I am a rather fast eater, so am frequently finished by 5:15PM. My staff have their break at 5:30PM.

At 6PM, my final activity moment for the day starts. I have an activity list, from which I can choose what we’re going to do. What we’ll do, is too often related to the staff supporting me. I really want to change this, but it’s hard.

I’ll have my final coffee at 7PM and then have unsupported time again until it’s time for my late evening meds at 8PM. I’ll most commonly use this time and the rest of the evening for blog-related activities.

Like I’ve shared many times, I usually have Dubbelfrisss in apple-peach flavor with my evening meds. I also will eat a serving of fruit. Then I’ll be told which staff will be in the home the next day. Some days, I’ll hang out in the living room for some time then, while at other times, like today, I’ll head straight back to my room and go online. I used to be phoning my spouse a lot late in the evening too, but now we’ll often talk at other times.

At 8:45PM, I’ll sometimes have a little snack. Then I’ll go online again until my staff come to supervise me brushing my teeth and to close my door to the yard at 9:30PM. After that, the staff will leave the home and I’m supposed to rely on the night staff in the main institution building for support. My fellow residents all go to bed before then, but I’m allowed to stay up. I’m a true night owl, so most days it’ll have been past 11PM before I’m in bed.

All this sounds incredibly boring and unproductive. I really want to put my unsupported time to better use, because currently most of the time I just end up scrolling.

#WeekendCoffeeShare (March 8, 2025)

Posted on by Astrid

Hi everyone on this International Women’s Day! I’m joining #WeekendCoffeeShare. It’s 7:30PM, so no more coffee for me. If you’d like a drink though, feel free to grab one and let’s chat.

If we were having coffee, first I’d talk about the weather. For most of the week, it’s been absolutely gorgeous! Today, we even reached 20°C. I know that this isn’t good news, in the sense that it’s way too warm for early March. I do care, but I also realize that I alone (or even all of the Netherlands alone) can’t stop or slow down climate change. For this reason, I’m enjoying the good weather while I can.

If we were having coffee, then I’d brag about all the physical activity I got in. Yesterday, I set a new record on my exercise minutes by exercising (mostly walking) for over three hours. I burned 600 active calories according to my Apple Watch.

Today, I didn’t walk as much, but still went for a few nice walks and I did ride the side-by-side bike. It’s an eBike and my staff had forgotten to check its battery level, so it quit working midway through our ride.

If we were having coffee, then I’d tell you that, on Thursday, my staff and I took a walk around the nearby lake. We also walked this route one day in late January and I remembered a little café along the way had the most delicious caramel pie. My partner looked at the menu on Wednesday and said the caramel pie wasn’t on it. Maybe it was the “pie of the week”. Thankfully, once at the café, my staff asked the waitress whether they still had the caramel pie and they did!

If we were having coffee, I’d tell you I am planning to create a trinket dish out of polymer clay soon. I ordered a cutter for it, which arrived on Monday. Unfortunately, my ceramic tile that I work on, is too small to cut out the shape on. However, one of my staff said she still had ceramic tiles somewhere and, thankfully, these were big enough. Haven’t gotten down to actually creating the trinket dish yet, because the weather’s just too beautiful.

If we were having coffee, I’d also share that, on Tuesday, a staff and I went for a walk around grounds again with the purpose of taking pictures of nature. There were mostly snowdrops and crocuses to be seen.



A few days later though, they’d mostly gone and the first daffodils could be spotted. No pics of those, as it was too sunny when I was out today.

If we were having coffee, I would conclude by saying this week overall was good. I had a few moments when I was in distress over the fact that there were quite a few temp workers, but the staff made sure always to assign me a regular staff. I realize it can’t always be this way and I’m okay with that, but I did tell my staff that my accepting a temp worker once out of necessity doesn’t make them a regular.

#WeekendCoffeeShare (March 1, 2025)

Posted on by Astrid

Hi everyone on this first day of March. I’m joining #WeekendCoffeeShare again. I’ve just had my last cup of coffee for the day, but if you’re quick, you may be able to enjoy a soft drink. We usually get chips with our soft drinks on weekends, but if I’m correct, the staff ordered meatballs. Let’s have a drink (and a snack) and let’s catch up.

If we were having coffee, first I’d talk about the weather. Most days, it was chilly but not rainy. We got the most rain on Thursday, but even then I managed to go out.

If we were having coffee, then I’d tell you that I did achieve the perfect month on my Apple Watch in February. My March challenge is incredibly easy: get in at least 3.63km of walking/running on at least fourteen days this month. I always thought the challenges were based on the previous month’s achievements, but I’m pretty sure I got a lot more steps in during February.

If we were having coffee, I’d report that I’ve been struggling again. This led to a number of arguments between me and the staff. Particularly, it frustrates me to no end that some staff are much more likely to react angrily to my irritability than others. As a result, I don’t accept gestures indicating they support me from these staff. Like, if you’ve first been telling me off, I won’t accept it when you offer me comfort. Unfortunately, my assigned staff claims this differing treatment is just how it is and she says it’s because I don’t accept the same treatment from everyone. This came across as if she was holding me responsible for the different approaches.

If we were having coffee, I’d also share that I’ve been frustrated with my day schedule and particularly the lack of clarity in it. I particularly don’t like the fact that, each time, I’ll have to choose an activity out of fifteen or so options. Thankfully, I was able to turn my frustration around today and decide that, on Monday, I’m going to the next town to buy groceries and, on Tuesday, I’m going to cook dinner for the home.

If we were having coffee, I’d share that part of my struggle is the extreme discrepancy between my intelligence and my emotional functioning. I’m said to function emotionally at a level comparable to a child under 18 months of age in most respects, but my IQ is above-average. Moreover, I happen to have an interest in psychology and social work. As a result, I, for example, know more about the theory of care and support than most of my staff, but I can’t apply it to my own situation and not just because I’m the client.

Like, when I’m in a good place mentally, I sometimes find myself pointing out ways staff are asking too much of me emotionally, but precisely because I can say so, I’m judged not to need the support I need.

If we were having coffee, I would however also share that I still experience moments of joy. For example, on Monday, a new student staff was being introduced to my activities and we created a unicorn (of course) out of polymer clay. This time, because the unicorn was rather fat and the staff had placed the front legs far apart, I chose to add a heart to its belly. I also decorated its back with rhinestones. Two pictures below, because my staff couldn’t capture both the heart and the rhinestones in one.


If we were having coffee, lastly I’d tell you that I struggle with self-criticism and this also leads me towards less creativity. I, however, overcame the feeling that I “should be better” sometime on Tuesday when I created a rather simple bracelet. It was just beads stringed onto elastic wire. However, looking at my comment about emotional development, I sincerely believe I did a pretty awesome job, since a toddler can’t do this at all.

Sorry for the rambly post. I’m still feeling hazy after another meltdown. By the way, no meatballs for our evening treat, as somehow they’d disappeared.

February 2025 In My Kitchen

Posted on by Astrid

Hi everyone! A while ago, I discovered Sherry’s In My Kitchen linky. As most of you know, I don’t have a kitchen, but of course my care home does. I’m using this opportunity to share some thoughts about the foods I’ve prepared and/or consumed lately. Do polymer clay-related musings count too, since polymer clay is cured in an oven? Just kidding (a bit).

Last week, like I think I shared, I visited the next town’s market and bought olives, fried chicken and peppers. I also bought arugula at the supermarket. My staff whipped up the most delicious salad out of these and some carrots that were in our fridge. I had some the next day as well. Sadly, I was under the impression that the staff had used up all peppers, only to be told yesterday that there were still peppers in the fridge. Those had by then gone bad.

I also bought blueberries and have been adding those to my muesli and quark that I eat for breakfast almost each day.

I’ve also been making smoothies lately. For example, a few weeks ago, we had lots of bananas that were on the ripe side, so we chose to whip up a smoothie with them. My current blender has only a 1 liter container, so at first I used to make only about four cups of smoothie and share them with my fellow residents who also stay up later.

Yesterday, a staff offered to help me prepare a smoothie for the entire home that we could use in place of our evening soft drink. Looking back, creating more smoothie than my container can hold is as simple as pouring the smoothie into cups then reloading the blender. The staff peeled and cored the apples and pears, something I think I could’ve helped with too, but oh well. I chose to add cinnamon, cardamom and clove, as well as soy milk as a liquid. The smoothie was absolutely delicious!

For the upcoming month, I’m really hoping to do more in the care home kitchen. Honestly, I feel I could easily be whipping up my own salads and do more in the smoothie-making process. I’ve also been looking at treats and even main meals to cook. I mean, I have the two-hour supported activity time slot in the afternoon and this often is currently spent on nothing more than a walk. I have been nagging my staff for a more structured activity schedule for months, but this seems to be rather difficult. One can always hope though.

#WeekendCoffeeShare (February 22, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare once again. It’s almost 10:30PM here, so no coffee for me. Since this is a virtual get-together, you’re free to grab your own beverage of choice. Let’s have a drink and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been all over the place with freezing night-time temps and daytime highs hardly above freezing early in the week, then a daytime high of 16°C yesterday. Today the daytime high was 12°C, which is still quite warm for late February. Unfortunately, it was raining most of the day today.

If we were having coffee, then I’d share that this week was a mixed bag mental health-wise. I’ve mostly been quite tired, but the bloodwork I had done on Monday came back all clear. I wish there was something simple that could explain my daytime tiredness, but I’m pretty sure that if I pressure the doctor to do more testing, they’ll just say I shouldn’t give in to fatigue, as I was told the last few times (many years ago) that I complained of being too tired.

Yesterday was a good day, but today I felt a bit irritable and overloaded.

If we were having coffee, then I’d share that I spent a lot of time early in the week switching web browsers. Somehow, with the latest update, Edge for iOS is pretty much impossible to use for me. Whether this is an actual bug in its accessibility with VoiceOver or it’s just that things have been switched around like crazy and I’m not tech savvy enough for it anymore, I don’t know. I tried getting the freakin’ Copilot (Microsoft’s AI) that was constantly in my way to disappear, but it wouldn’t.

So I decided to leave Edge behind altogether and switch browsers, because I don’t like using one browser on my iPhone and another on PC. I finally settled on Chrome and, though I’m still figuring things out, mostly it works okay.

If we were having coffee, I’d then tell you that a (now former) staff came to say goodbye on Monday. I gave her the “bull in a china shop”, ie. the polymer clay elephant in a mug I’d created last week. She loves unicorns and elephants, but she already had a unicorn.

This time around, I didn’t get a proper description from the Be My Eyes app, because it judged the mug to be its body and the letter J (for the staff’s first name) to be its tail.

If we were having coffee, I’d then tell you all I had a good day yesterday. I walked a lot, but also visited the next town’s market. I had originally been uncertain as to whether I wanted fried fish (or shrimp really) because of it being quite a high-calorie, high-fat food. I eventually said “screw it!” and considered yesterday a total cheat day. I, after all, also had fried chicken for dinner. Granted, other than that I only had a salad.

If we were having coffee, then I’d share I do really need to lose weight though. I’m about 2kg overweight, which doesn’t seem like a lot given that I used to be 20kg heavier than I am now. However, the “screw it!” thoughts are pretty commonplace especially given the current state of the world. For example, my unhealthy voice is telling me it’s not a problem if I risk getting a heart attack ten years from now because, for all we know, the world may’ve gone up in smoke by then anyway. I, thankfully, do still have more tangible reasons to lose weight or at least not gain any. Like, I still want to be able to wear my favorite pants.

If we were having coffee, lastly I’d share that I am still going strong meeting my movement goal on my Apple Watch each day this month. I’m really hoping for the perfect month award. That being said, I’m not overcompensating for my having indulged in too many “cheat” foods. Not that I believe in cheat foods anyway, since there are no bad foods, just less healthy habits. And overexercising can be a less healthy habit too, as my dietitian reminded me on Wednesday. Not that I’ve ever truly done that, honestly. The bottom line though is that I’m not engaging in compulsive eating habits or exercise. I feel things might need to be a little more controlled, but I’m not sure how to do this.

Spoon Theory

Posted on by Astrid

Hi everyone! I’m back after more than a week of not touching the blog. I feel horrible for having neglected something I really love over the past few years, ie. my blog. However, I just don’t seem to have the spoons for it.

Spoons? This week’s prompt for #SoCS is “spoonful”. I immediately thought of spoon theory.

Spoon theory is a way of describing life with a chronic illness or disability that limits someone’s energy levels when compared to non-disabled people’s energy levels. I haven’t delved deep into it, but the way I understand it, each person has a set number of “spoons” or spoonfuls of energy. However, for a disabled or chronically ill person, daily activities take up more spoons than they would for someone who is currently healthy and non-disabled.

I was thinking of this when, after a dispute with one of my staff over temp workers, I wanted a way to explain how hard it is for me to deal with a temp worker, especially when they haven’t been told what to do with/for me, because “she can explain everything really well”.

For example, let’s say we each have ten spoonfuls of energy a day. The actual number doesn’t matter, but the point is it’s the same for someone who isn’t disabled, like the staff, as it is for me. For a non-disabled staff, their first spoonful of energy of the day might go to showering. For me, it goes to processing the staff’s greeting in the morning and figuring out who is going to help me with my morning routine. Then, if it’s a temp worker, the next spoon goes to introducing myself and figuring out whether I “know” them already (as some of them claim I should “know” them when they’ve been my staff just once many months ago). Then, another spoon goes to thinking of whether it’s a day I’m supposed to take a shower (which I hate, so doing it everyday to skip this step isn’t really an option) or just do a quick wash. Showering costs me at least two additional spoons, often more. Then it’s not even half an hour into my morning routine and I’ve already spent half my spoons for the day. I accept this reality, but additional spoons go into explaining my routine to temp workers even though a lot of it is in my day schedule. When a temp worker (or even a regular staff who rarely works mornings) helps me with my morning routine, this usually means I’m overloaded by the time I’ve finished breakfast.

And just so you know, getting up on my own and doing my entire morning routine independently, would mean I’d spent all of my spoons by the time I had gotten dressed or even earlier. I tried this when at the intensive support home, where the reasoning was that if you can do something physically, it doesn’t matter how much energy it costs. I was then told I was being “negative” for going into bed right after my shower.

For your information, spoon shortage does not just result in physical exhaustion. For me, it often results in mental overload, which I may show as a meltdown. Then people reason that melting down costs energy too so why am I “choosing” to spend my spoons on that? The thing is, meltdowns aren’t a choice.

I honestly feel that staff in general, not just the staff who refuses to support me after said dispute, need to be more aware of spoon theory. Then they’d understand better why I can walk for 45 minutes but not do my personal care completely independently. Hint: walking is just one action for me (putting one foot in front of the other). Oh, that’s two because I have two feet. However, my point is that walking isn’t nearly as complex a task as personal care is.

That being said, I feel that spoon theory would not just help me, but the other clients too. There’s a client here who “takes advantage” of the others by not doing any chores, according to the same staff who tells me I can explain everything perfectly fine so the temp worker doesn’t need introducing. She’s all for fairness and equality and everyone being the same. Newsflash: we aren’t. And who knows how much energy goes into this client’s everyday activities?

Okay, this post goes into the “Awareness” category because it’s not really a ramble. Well, it is, but it is also a post to raise awareness. I haven’t added the “#SoCS” ending to my post title because, well, not sure why but it didn’t feel appropriate. I hope that’s okay.