February 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. I’m sharing this past month’s reflections again, as it’s the last day of the month. February is often a hard month for me and this year was no exception. I honestly feel quite hopeless as I write this post, even though I probably should be feeling cautiously optimistic. Let’s dive in. As usual, I’m linking up with #WBOYC.

During the first few weeks of the month, I shared some more concretely about things I wish would change about my care here at my current care home, only to be told nothing will change until after the summer at least. This caused me quite a bit of despair, honestly.

The contrast couldn’t be greater when I did experience exactly one near-perfect day last week and saw nothing about it in the staff’s records. When telling my staff about this, I got advised that maybe reading the log notes might not be a good idea after all. WTF?

It also looks like my staff are using my current mistrust, and the fact that I’ll likely develop trust in my staff very slowly, as an excuse not to have to improve my care. After all, yesterday my assigned staff said my level of trust is currently zero so any improvement is to be celebrated when I was calling him out on ways in which he and his coworkers are expecting too much of me.

Today, I had the intake interview for therapy at my care agency’s practice. I probably portrayed myself as an attention-seeking, childish, purposefully-dependent monster. The therapist who asked me the questions (there were two in the room, plus my home’s behavior specialist), kept repeating how feeling isn’t dangerous.

At one point, I was talking about how I sometimes trigger myself by looking up idealized care situations. She was like: “But you don’t need full-time one-on-one.”. I know. Then she went on to tell me that sometimes she feels bored and lonely when she’s at home alone, but nothing bad happens so she can stay home alone. She also told me I’m an adult. This somehow majorly triggered me and now I feel bad for being triggered because doesn’t that prove my former psychologist’s point of view? You know, the one who diagnosed me with dependent personality disorder and told me I needed a good kick in the behind to live independently?

Yet things did happen. I dropped my meds. I dropped glass on the floor. I fell of a kitchen stool. The housing association came by and told me I needed to pull away the weeds out of my backdoor path. And a thousand other things. None of these are serious things, except that I had no idea how to handle them so spiraled into panic. And there’s no point teaching me how to handle every tiny little situation that could go wrong. And for the record, sitting with the feelings won’t solve the problems either. Calling for help rather than spiraling into panic might have, but that didn’t seem to be her point. Besides, I cannot do that when I’m in a panic.

She did say that she doesn’t make decisions about my independence, but I feel very strongly like I am being asked to be the strong, independent, intellectual part of myself again.

The therapists ended up recommending a form of play therapy, but the play therapist who comes to the main institution is male and I’ll be alone with him. That’s not an option for me, honestly. They are going to look into finding me a female therapist. I hope they will, as the rest of what they recommended, though I did agree to go forward with it and have my first appt on April 3, seems a bit off. They recommended psychoeducation on emotions, which seemed to me a bit like dialectical behavior therapy light (I’d mentioned I’d done DBT unsuccessfully). They’ll also help me identify my triggers and make a timeline of significant life events or something. I’m not sure what relevance that would have, but oh well.

Currently, I’m trying to talk myself into being positive. This care home clearly won’t improve, so either I improve or my life stays the same. Which is mediocre. I do have my good days, but I’m pretty sure the staff are going to agree at the next team meeting that the staff’s less optimal care approach should be the default.

On my good days this past month, I did craft some earrings, a polymer clay unicorn and bird’s nest, as well as make delicious homemade chocolate fudge. This was awesome!

#WeekendCoffeeShare (February 24, 2024)

Posted on by Astrid

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

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

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

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

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

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

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

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

It’s Just Us, Or Is It?: Power Dynamics in Care

Posted on by Astrid

I am currently reading a book called The Dark Side of the Mind by Kerry Daynes, a memoir by a female forensic psychologist in the UK. In her first chapter, Daynes writes about how her college date tells her there’s no justice, it’s just us. Then she goes on to talk about her first job, which is really an unpaid position, at a correctional facility called Wakefield. There, the philosophy is “us vs. them”, “us” being the “good” guys (or girls), ie. the staff, and “them” the inmates, who often committed horrific crimes, such as rape, murder or both. This “us vs. them” mentality was often used to reinforce a rather exaggerated power dynamic, to say the least. As it turns out, it’s not that black-or-white, in that, several years later, a staff member Daynes worked with was given a long sentence for similar horrific crimes.

I want to use this example to talk about power dynamics. Not in the prison system, as I have no experience with that, but in the care system. In a sense, in care, at least as much so as in prison, there should not be “us” and “them”, since we’re all people first. The mere fact that I am disabled and my staff are currently non-disabled, shouldn’t make a difference. Neither should it when it comes to my fellow residents who are deemed unable to make their own decisions.

I just had a discussion with one of my staff about this. This person maintains that she’s in fact at my service, almost like I’m her employer. When I pointed out that she gets to decide when it’s necessary to physically drag me to my room (not that she personally ever has), she said this is because I live with nine other people. Yes, but if I lived with nine other people without staff, such as in student accommodation, no-one would be dragging me to my room for yelling and, if the situation did escalate too much, the police (who everyone except for maybe the police themself admits have a position of power) would be called.

I also mentioned some situations from the intensive support home. For example, staff grabbing a large cookie while giving us a tiny biscuit. “Who’s boss here?” one of the staff once actually asked one of my similarly opinionated but unfortunately less eloquent fellow residents. She named the names of the support coordinators. “And when they’re not here?”, he continued, clearly wanting to hear that the available staff are. I pointed out later that no-one is boss here, only to be told that this was a simplified way of explaining this to my fellow client.

When I told my current staff about this and other examples, I was told this is the way the intensive support home works and that she doesn’t agree with it. At the same time, she told me that, if I want a large cookie, I can get it because I’m capable of making my own decisions, while my fellow residents can’t. While I understand this, on a large scale, may be so, it isn’t necessarily true: I don’t technically follow my agreed-upon food plan either and that’s considered my responsibility, while if a fellow client points to a single extra cookie, that’s denied because their family (or the staff) agreed on a food plan. However, if I have an extra cookie, it will do the same for me as it will for another person (unless said cookie has allergens in it for the other person or whatever). I wanted to raise awareness of how, on a micro level, staff, including the staff who believe they’re at our service, are exercising their power more than they should be.

Power dynamics, for clarity’s sake, cannot easily be eradicated. Nor am I absolutely sure they should be. However, those in positions of power should be extra conscious of their position. And especially when it comes to situations in which they believe they have every rhight to make decisions for another person, such as when I got dragged to my room and when the staff decide another resident cannot have a large cookie (but said staff and I can).

What, When, Where, With Whom and What After That?

Posted on by Astrid

I have been struggling with staff randomly switching up who will support me, my day schedule being changed for various reasons, etc., a lot lately. This causes me a lot of stress. Like regular readers of this blog may know, I have about eight hours of one-on-one support a day, divided into blocks between 8:15AM and 9:30PM. Between my support moments, I have unsupported time slots that range in length between 30 and 45 minutes.

I often struggle with my unsupported time, looking at my watch every few minutes to see whether my support staff will be coming yet. I also look at my watch a lot during my supported times, because I dread the moment my staff unexpectedly say they’re leaving.

Last night, I thought up a way to possibly solve this issue: to organize my day schedule more by activity. We need to watch out this doesn’t become the stupidly vague day schedule my former support coordinator at the intensive support home gave me. After all, when the day schedule says that we’re going for a walk and doesn’t specify how long that walk will be and there are absolutely no timeframes related to the activity, some staff will take me for a three-minute walk around the home while others will take me for an hour-long walk. Then, if after the walk I’m supposed to have unsupported time until lunchtime, the length of my unsupported time could range anywhere from like 30 minutes to nearly an hour and a half. This was actually what my day schedule back at th e intensive support home was like.

What I’d like instead, is to know what, when, where, with whom and what after that. To put it more concretely, I’d like to discuss during my morning routine who will be supporting me for the rest of the morning shift (and after handover for the evening shift), what we’ll do, including what I’ll do during my unsupported times, and to put those activities on a tactile “picture” board (with Braille instead of pictures). I think knowing what I’ll do during my unsupported times will lessen the number of times I look at my watch too. It also will mean I know who’ll support me for my activities, so that I know whether I feel comfortable with them doing certain activities with me or not.

I’m pretty sure this is all wishful thinking. One of the staff, who happens to be one of my “favorites”, didn’t think it was a bad idea. Then again, my assigned staff said I was lucky that I heard 25 minutes in advance that he was going to be there for my early afternoon activity, because his shift doesn’t start till fifteen minutes before that activity starts and if it was up to him his morning shift colleague would’ve conferred with him prior to telling me that he was coming. That would mean I’d get at best ten minutes notice. According to my assigned staff, no-one specified how much preparation time I need, so technically speaking five minutes should be enough. I think that’s rather, well, literal-minded at best and purposefully twisting the truth at worst.

This post was a rather long contribution to this week’s Stream of Consciousness Saturday, for which the prompt today is “watch”. I usually don’t write pieces that are this lengthy and in fact struggled to maintain stream-of-consciousness style.

January 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of January, so I’m reflecting back on the past month. This month was rather eventful but slow-going at the same time. Christmas sounds like centuries ago. As usual, for my monthly reflections, I’m linking up with What’s Been on Your Calendar? (#WBOYC).

The month started out rather positively with me being full of energy, new hope and inspiration. Indeed, I did create some cool new polymer clay things over the past month, including a Valentine’s frog. That one now stands on a Valentine’s Day-themed (well, kind of) table in the living room of the other side of the home.

Polymer Clay Valentines Day Frog

I also crafted the cat I showed you all earlier, a penguin, a rabbit and a few things that I might be turning into earrings at some point.

Last week, I also cooked rice and chicken for myself and my fellow residents. This was great.

Early in the month, I didn’t have many visitors due to various circumstances, but thankfully I was able to see my spouse twice this month anyway. I also saw my mother-in-law twice, on the 16th because it was every-other-Tuesday (we’d skipped the 2nd because I was sick) and last Monday because I had my care plan review.

This care plan review probably warrants its own post, since it was a lot to process. Midway through the month some issues that I’ve been having with my assigned staff, that I can’t go into here, came to a point where I was greatly struggling too. This and some other things, including the fact that I frankly don’t do as well with male staff as I do with female staff, have led me to request another assigned staff. Whether this can happen, I’m not yet sure of, but I hope so. Thankfully, I do have my support coordinator, with whom I do get along.

A week and a half ago, she and I finally finished my new crisis signaling plan. This has yet to be brought under the attention of all staff and even then, staff have to be willing to follow it.

Last week, a staff not being willing to follow this plan, led to me having a massive meltdown. More specifically, I spiraled out of control because the staff assigned me a temp worker for the late shift, while that entire day there were no staff I sort of trust except for one and she, contrary to what’s in my plan, refused to come over for just five minutes. I was a horrible person to her and the other staff and there’s no justifying that, but it’s sad to realize that her coming over for just five minutes might’ve prevented an evening-long meltdown.

Over the past week, I’ve generally been struggling with all the staff changes, changes to my one-on-one for various reasons and general chaos. I feel, truthfully, like I’m swimming in the North Sea again, as I explained it at my care plan review. The way I explained it then, when I was in Raalte in late 2021, it was like swimming at the shallow end of the pool as far as support went. And, while, like every toddler that needs to learn to swim having their days when they resist the water, I had my bad days, they weren’t due to poor support. Then, the first male staff and, later, some temp workers were introduced to me and I had to endure the odd day when I didn’t get my allocated one-on-one. I struggled massively with this challenge and this was the main reason I decided to move. Then, at the intensive support home, I was thrown right into the Pacific Ocean: a day schedule that was rather stupid, constant staff changes, me always being assigned the new temp worker, etc. Now, on good days, I feel like I’m swimming in a calm lake and, on bad days, I feel like I’m swimming in the North Sea. And then there are those really good days when I feel like I’m back in the pool. Those are the days I’m supported by my “favorites”, as my assigned staff calls them. And just so you know, just because I survived my previous home, doesn’t mean I coped or can cope with the current chaos of my home. Yes, it’s better than it was, but that doesn’t mean it’s good. I try to be understanding of the fact that everyone faces staff shortages, temp workers, etc., but honestly, listening to all the “everyone has to give a little” wears me down.

My Hopes for 2024

Posted on by Astrid

Hi everyone. As regular readers of my blog know, I don’t do New Year’s resolutions, instead calling them “hopes”. This is just an excuse not to have to take responsibility, I guess, but oh well. I love writing them and looking back at them after a year to see how well I did. Last year, I did participate in #WBOYC, of course, but honestly I never looked at my hopes for 2023 when doing my monthly reflections. Oh well, maybe my first not-quite-resolution has to be to look back at this post when reflecting on the month. Here goes.

1. Get back on track with respect to healthy’ish eating. I did manage to get to a healthy BMI in 2023. That is, I’m pretty sure with all the New Year’s treats, including more “oliebollen” than I told my dietitian I liked, I’m now back across the line to overweight (I was only half a pound below that line last week). I know that with some cutting back on snacking, and it doesn’t even have to be drastic, I can lose the excessive pounds I gained over the holidays. More importantly though, for the remainder of the year, I’d like to maintain a relatively healthy diet. After all, sugary ttreats and high-fat foods are bad for you even if you’re at a healthy BMI.

2. Get back into a regular movement routine. Though I did excellent for the first half of 2023 and pretty well for most of the second half too, like I said yesterday, I wasn’t moving as much over the past month or two as I would’ve wanted to. This year, I obviously hope to meet my movement goal each day, but I’m not sure that will be a realistic goal, as it wasn’t in 2023 and that’s not just because of lack of motivation. I’d also really like to find another way of exercising besides walking, either swimming again or something else. I seem to remember we do have gym equipment somewhere on institution grounds, so maybe that’s an option.

3. Write more regularly. Last year really sucked in the blogging department. I really hope to change that and get back on track with blogging more often.

4. Broaden my horizons in the crafty department. I hardly touched on this yesterday, but the last couple of months were really positive in this respect. For one thing, I started creating figures, such as the gnome and Santa, without consulting YouTube tutorials. For another, on Saturday, I did something really cool: I crafted a unicorn completely independently! I did initially leave black streaks on the head from touching it while trying to attach the eyes, which the staff had to clean up with alcohol. Other than that, I did everything completely without supervision or help.

In 2024, I really hope to be more creative, try out more things on my own (without the expectation that I’ll lose my one-on-one) and generally have more fun claying and maybe doing other crafty things.

5. Explore other day activities. In 2023, I wanted to expand my horizons with respect to my day schedule, moving beyond 60 minutes at a time, beyond my room and beyond one-on-one. The first was a massive success, as I now have a great day schedule (which of course took me moving out of the home I lived in last year, but oh well). The second and third, I’m not 100% sure I want to achieve, actually. Rather, I’d like to explore meaningful activities, whether these can be done in my room or elsewhere, on my own, with my one-on-one or in a group.

6. Get settled into my current care home, generally. I really hope to get more comfortable here and start building up a trust-based relationship with some staff.

7. Improve in the mental health department. This, for me, means stabilizing with respect to my trauma-related symptoms. It also means getting closer to a proper med combo and dosage. In 2023, I didn’t change any of my meds or dosages, which was frustrating as I did notice some increase in possible side effects. I’ll have a meeting with the intellectual disability physician to discuss my meds on the 15th.

8. Continue to work on my relationships and supporting the people I love. Particularly, my marriage evolved in a positive way in 2023 and I would really love to keep it as strong as it is going forward.

What are your hopes for this year?

2023: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year. I am dealing with a nasty cold and very much overloaded by the early fireworks. I really expected the institution town to be quiet, but it isn’t. Regardless, my sense of duty is stronger than my wish to crawl into bed with a PRN tranquilizer and that sense of duty tells me I need to review the past year. So here goes.

I started out 2023 cautiously optimistic. I mean, I admitted in my hopes for 2023 that my day schedule, though better than the one my then support coordinator had given me, was far from ideal. In the months that followed, it would turn out that “far from ideal” was really a euphemism and that the intensive support home wasn’t suitable for me. I know my staff there blame my critical attitude, but honestly my current day schedule is pretty much ideal and, moreover, at least my staff try to think in terms of validating my needs rather than fueling competition for care.

By late January, I had pretty much decided I didn’t feel I could live in the intensive support home long-term, but it took till mid-March for a meeting to formally make the decision to start moving plans again. Then I waited two months before hearing any steps had been taken, then another two before that awesome E-mail from my now assigned staff to my mother-in-law asking what color of paint I wanted on my wall.

In the meantime, I didn’t sit still, though sometimes it felt like it. I indeed wasn’t as active as I was during 2022. I participated in the April #AtoZChallenge on my blog, which was really my only active month this year.

I also helped set up swimming for the intensive support home. After all, the idea to ask the institution pool whether they had a time slot for me and a staff to try out swimming, came from me, and then it turned out this time slot wasn’t available just once, but each week.

For the most part though, over the spring and summer, I struggled. It didn’t help that my support staff came up with the conclusion that I got more one-on-one support than I was getting funding for. This led to regular arguments with my former staff about how to cut those hours once I moved.

When I actually moved and my hours had to be cut, the staff soon enough figured out that this wasn’t a viable situation. Thankfully, I got my hours back, first through my care agency and then through funding from the Care Office.

Once this had been sorted, my life significantly improved. For one thing, I was spending more time creating things out of polymer clay. I also explored other activities, such as baking.

In the health department, 2023 was a mixed bag. I did reach my goal of getting to a healthy BMI, but over the past couple of months I have been struggling to get in the movement needed to meet my activity goals. That is, I haven’t met my movement goals several times this past month. One reason is the weather and the fact that, now that I’m at my current care home, I cannot (yet) go swimming regularly. Another factor though may be the fact that I’ve lost weight and haven’t adjusted my movement goal accordingly. Still another factor may be laziness though.

Lastly, 2023 was the year I left Christianity for good. I mean, I’m still spiritual, but I don’t care for a God that condemns the vast majority of people to eternal suffering, many of whom simply for being themselves.

#WeekendCoffeeShare (December 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining in with the #WeekendCoffeeShare once again. As usual, I’ve had my last cup of coffee for the day. We didn’t have chips to go with my soft drink, as for some reason the person ordering our care home groceries had ordered far too little. We are also almost out of desserts and the next delivery of groceries won’t be till this coming Wednesday. It’s going to be a not so luxurious Christmas after all. Speak of first world problems. Let’s have a drink (thankfully I have lots of green tea, including coconut-flavored green tea) and a biscuit (I have cinnamon stars and stroopwafels in my cupboard) and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s usually uneventful here in the eastern Netherlands, but not so this week. Storm Pia actually hit us hard. In fact, on Thursday, the storm caused a tree to fall over on top of a side-by-side bike here on the cycling path that’s along institution grounds. The staff member steering the bike was hit so hard that she didn’t survive. The client had relatively minor injuries, but I’m pretty sure they’re traumatized for life. I don’t know the staff member myself, thankfully, but it was a warning sign not to go outside in the storm.

We’ve been experiencing heavy rain and wind all week except for Monday. Monday was actually a beautiful day. I went for a 5K walk with a staff member that day.

If we were having coffee, next I’d tell you about the stroopwafel cheesecake I made yesterday. I made it because my one-on-one got renewed, something I really hadn’t expected. The cake was extremely sweet and a calorie bomb as they say here but who cares? It was also delicious, after all.

If we were having coffee, I’d share that I’ve really been feeling creatively motivated lately but have been struggling to put this motivation into action. As a result, I haven’t been doing much with my polymer clay lately. I’d really like to change that soon. I did order new clay, because I want to experiment with Cernit and also because some of my Fimo is too crumbly to condition without exerting enormous effort.

If we were having coffee, I’d share that I did come up with the idea of using my two-hour activity time slot for cooking a simple meal for myself and my fellow clients. We could then reheat it in the oven or microwave when it’s dinnertime.

If we were having coffee, I’d tell you my assigned staff asked me to think of goals for my upcoming care plan. He did say that these goals do not need to be all that drastic or anything and that simply having a meaningful life could be a goal in itself. I mean, my staff at the intensive support home have been pushing me to create independence-focused goals but I really don’t care for those given the discrepancy between the fact that technically my body still functions okay but due to overload tasks still cost me tons of energy. I mean what if staff and I set a goal for me to achieve a certain task and I physically achieve it in three months’ time, then staff will always expect me to do it independently because purely physically speaking I can. Then because it costs me tons of energy I’ll end up neglecting it if I don’t have supervision (ie. someone pushing me to do it) and we end up back at square one. And to be honest, I don’t want to have someone supervise my every task that I can do myself just so they can tell me to do it myself and push me far beyond my capacity limits in terms of energy.

If we were having coffee, lastly I’d tell you all that I’m looking to finally turn my room into an actual living space. I’m looking to buy some more furniture and also to possibly decorate it more. Currently, there’s a box full of junk in my room that I could really empty out. I mean, after I’ve finished my crisis signaling plan, because the folder from Raalte is in there. In its place, I’d like to put a second nightstand or small cabinet, so that I can put my claying supplies in there rather than in a box under my bed. I am also looking to put some poster on my wall, probably something not too weird. I mean, I originally wanted to go for a unicorn theme but that’d be all very flashy, which isn’t exactly my style.

Speaking of unicorns, I will be wearing a unicorn-themed Christmas hoodie this year, like last year. It’s a little on the big side now, but not too much so.

Hope you all have a lovely Christmas.

The Wednesday HodgePodge (December 20, 2023)

Posted on by Astrid

Hi everyone. Another Wednesday, yay! I’m joining in with the Wednesday HodgePodge. Here goes.

1. Did you do more talking or more listening yesterday? Was it by choice or by necessity?
Talking. Honestly, even though I’m an introvert, I talk more than I listen generally. Maybe that technically makes me an ambivert, who knows?

2. Are you a tea drinker? Hot, cold, or both? Flavored? What do you like in your tea? Do you make Christmas tea this time of year? What time of day do you like to sip your tea?
I’m more of a coffee lover but I do drink tea occasionally. Usually hot. I mostly drink plain green tea, although I like some flavored green teas too, like coconut or cranberry. Nothing in my tea please. I’ve never made Christmas teas and have no idea what makes a tea specifically a Christmas tea. I usually drink my tea in the afternoon or evening.

3. What’s an activity you won’t try, an event you won’t attend, or an athletic challenge you won’t take part in not even for “all the tea in China”?
Marathon running. That is, most likely I will never run more than 100m at all and that can barely be considered running.

4. What’s something most people seem to love but is not “your cup of tea”?
Starbucks. And yes, I thought of that before I’d read Joyce’s answer. Like I said before, I went there twice and thought I sort of liked it the first time (because everyone apparently does). The second time though, both I and my spouse decided we definitely weren’t coming back.

Oh and romance novels. I am not sure whether I haven’t found the right kind yet but I think they’re all horribly cheesy, shallow and predictable, and it’s not like I need lots of twists in a book otherwise.

5. How does your family celebrate New Year’s Eve?
Uhm, we don’t? That is, as far as I know my spouse isn’t expecting me to come to our house for the occasion. Last year, though I did spend New Year’s Eve in Lobith, we went to bed before midnight.

6. Insert your own random thought here.
I want to share some good news: my one-on-one got renewed! I don’t know any details yet, but according to my staff everything will stay the same with respect to my care.

Never a Perfect Day: Is It a Bad Attitude?

Posted on by Astrid

Yesterday, as I was paging through some collections of journaling prompts I own, I came across a prompt that said: “Today was a perfect day because…”. Now I would counter that not a single day in my life was perfect. That in turn reminded me of something my assigned staff at the intensive support home used to complain about. She’d say I never said I’d had a great day and rarely said I had a good day. Most days though, I said my day was “okay”. I’d regularly say a shift had gone “pretty well”. To that, she often asked me to clarify what didn’t go well, since I didn’t say it went well, but said “pretty well” instead. According to her, even if I’d had a perfect day care-wise – my day schedule was followed precisely and I’d gotten all familiar staff -, I’d still find something to complain about.

There are several things I could add to this. For one thing, I wasn’t the one complaining. I think “pretty well” or even “okay” isn’t negative. For another, I never had an entire day where my day schedule was followed precisely and I was only supported by familiar staff. I do have those days now.

Another thing is, I am in near-constant physical discomfort. This may be relatively mild, but it is present nonetheless. I am also perpetually in a state of overload. For this reason, merely going through the day takes me more effort than it would a non-disabled person. I realize neurotypical, non-disabled people cannot grasp what it is like to feel what I feel, but to label my lack of overt positivity as somehow being a bad attitude, is quite something different.