Today I Feel…

Posted on by Astrid

Today I feel pretty awful. Several of my day activities staff were off sick, so I got assigned a relatively new staff. This was hard enough. To make matters worse, I was pretty badly overloaded all day. I did try to relax in the sensory room, but really couldn’t find my calm.

In the evening, I started a Dutch blog again. It’s been the umpteenth time that I started one and I’m not feeling too optimistic about how long I’ll be able to keep it up. Then again, I did finally find a way to link to it from this blog, so that I don’t have to keep switching primary sites each time I comment on a Dutch blogger for them to see it. Of course other bloggers seeing your content shouldn’t be the point of blogging. At least, it wasn’t my point when I first started blogging. I didn’t care about my stats. But that was over thirteen years ago. Now, of course I do care.

I saw a post by a Dutch disability blogger. That blogger in fact inspired me to start a Dutch blog again. She was discussing the notion of “mild” forms of impairments. I generally hate that notion, even though I still often fall into the trap of judging people, including myself, by it.

For example, I am diagnosed with level 1 autism spectrum disorder and probably level 1 cerebral palsy too. Only my blindness can be seen as “severe”. Even so, it’s of course the combined effect of these disabilities that causes me to need the support I need. Thankfully, the long-term care fudning agency got that in my case eventually. It doesn’t get it in some other cases.

Like, a friend of mine shared a newspaper article a few weeks ago about an elderly man who was profoundly hearing impaired, nearly blind and hardly able to walk but still too “mild” for nursing home funding. This man ended up taking his own life. I was incredibly saddened by this and at the same time, it made me feel guilty. I’m trying to turn this guilt into gratitude though.

This post was partly inspired by the first prompt in a 10-day writing challenge I participate in. The prompt was “Today”.

Dentist’s Appointment

Posted on by Astrid

I shared last week that I was going to have a dentist’s appointment soon and was really nervous. I reluctantly agreed with the care facility physician that 1mg lorazepam the night before and 1mg about an hour before my 8:30AM appt should help me enough. It for sure must’ve helped some, but I was a little disappointed in how much of the edge it took off.

I had my appointment today. Went to bed at 8:30PM yesterday evening to hopefully get a good night’s sleep. I didn’t. I half-awoke at least eight times before finally waking up at 4:15AM and not getting back to sleep.

Still, I was calm’ish on the way to the dentist’s office. My dentist’s practice is at the main institution for my care agency in Wilp, which is a 45-minute drive from Raalte. I had fully expected to fall asleep in the car, but I didn’t.

I still didn’t really know what to expect, even though I’ve had a lot of cavities filled before. This was an old filling that needed replacing, so that should be easier. It wasn’t. I did get a topical anesthetic. That reminded me of why I hadn’t had it when I had seven cavities filled at age eighteen. The anesthetic is really, well, weird. I really expected the injection to hurt, but it didn’t. Instead, the feel of numbness and thickness was more annoying.

I was really anxious all throughout the procedure, but had no idea how to make it clear. I mean, my day activities staff was with me and she held my hand, but she apparently didn’t feel me pinching it. Then again, what could we have done anyway?

I had one filling replaced and a new cavity filled. It also turned out I have a pretty bad mouth ulcer near the tooth that needed the filling replaced. That will need to go away on its own. I will need to return in April to get some fillings on the other side replaced.

Now we’re twelve hours on and I do have some slight pain still, but it’s manageable.

I’m just trying to relax this evening. Had a pretty good day overall today. Having lunch with the anesthetic still wearing off, was kind of hard, so we chose to move the Tuesday morning cooking activity at day activities to the afternoon. The tortilla wraps were delicious!

#WeekendCoffeeShare (February 23, 2020)

Posted on by Astrid

I’m late to join in with #WeekendCoffeeShare, but better late than never. I just had coffee. Didn’t track my fluid intake today, as I was a bit lax with it, but I also had water, yoghurt drinnks and green tea.

If we were having coffee, I’d ask you how your week has been? Hopefully the weather has been treating you well. Here in the Netherlands, the week started off pretty well, but over the week-end, we’ve had a storm once again and lots of rain too.

If we were having coffee, I’d share that I did some soap making again early in the week. I made a yellow, banana-scented soap that actually turned out quite well on Monday. I haven’t tried my hand at bath bomb making again this week, but I did try out a bath bomb I’d made last week in the bath last Friday.

If we were having coffee, I would also tell you that this week has been pretty good in the physical activity department. I got over 200 active minutes, 150 being recommended. I wasn’t very active every day, but on the days that I was, I went above my daily goal. In fact, I probably was more active than my Fitbit activity tracker claims I was, as it doesn’t seem to count side-by-side bike rides, as I’m not steering then. I discovered that I really like one of the two side-by-side bikes we have at the day center. With the other, I cannot reach the pedals and I don’t like it if I can’t pedal along.

If we were having coffee, lastly I’d share that over the week-end, I’ve mostly been relaxing. My husband would have come over to take me to a nearby city called Hengelo. I was planning on buying wireless headphones with noise canceling functionality there and then we’d eat out. Unfortunately, my husband was sick, so he didn’t come over.

I bought the headphones I wanted online. Then after I’d ordered them, I discovered that the mobile app they work with, which I’d considered an advantage, had really poor ratings on the app store. Thankfully, the headphones work without the app too and actually the app works fine for me. I’m not sure I’ll keep the app though, as I don’t really need it. The headphones, like I said, have noise canceling. I was a little disappointed in how it worked the first time, but then again I wasn’t sure what to expect. I’ve never had noise canceling headphones before, after all and my room was relatively quiet when I tried it. I will try it out at day activities tomorrow, as that’s what I intended the headphones for. The headphones also have Bluetooth connectivity, which I’d never tried before either. I love that, as I’m now able to walk around the room while having my headphones on. I may try to go onto the elliptical while using them tomorrow.

What have you been up to lately?

#WeekendCoffeeShare (February 2, 2020)

Posted on by Astrid

It’s February, yay. I’m joining in with #WeekendCoffeeShare again, even though I’m not 100% sure I feel like writing. I had a lot of green tea and only one cup of coffee today. It’s interesting that, at my husband’s and in-laws’, I mostly drink green tea, whereas in the care facility I almost always drink coffee. Anyway, let’s catch up.

If we were having coffee, I’d share that this week was a hard one. I don’t even remember what I did on Monday. On Tuesday, I was in a near-constant panic at day activities. I eventually asked to go to the behavior specialist’s office to see if I could schedule an appointment with her to talk. However, the behavior specialist on my case wasn’t in the office. Another one was, but I couldn’t quite make it clear what I needed and so I went back downstairs.

That evening, I had another huge crying fit. I took a PRN lorazepam, but still didn’t sleep all night. In the morning, I kept crying. My assigned support worker informed me that the behavior specialist responsible for my care was on sick leave, but she called the one who’d been in the office on Tuesday.

She visited me at day activities at around 11AM and I talked for about an hour. I talked about all that I was overwhelmed by. Particularly, I felt that I need more support at day activities. This still needs some sorting out, but mostly I do now get an assigned staff member each day.

If we were having coffee, I’d share that from then on, I felt okay and haven’t had panic attacks or meltdowns. I do struggle with some level of overwhelm and anxiety, but it’s manageable.

If we were having coffee, I’d share that on Thursday, the family of a potential new client came for a visit. This stressed me out a little, because I thought another client coming to my home means less care for me. This isn’t the case, the staff said.

If we were having coffee, I’d say that I traveled by train to Arnhem yesterday. A transregional ParaTransit taxi drove me to Deventer station. There, a travel assistant was waiting to help me onto the train. She apparently needed to help someone in Arnhem next, so she actually traveled all the way to Arnhem with me rather than just helping me get on the train. My husband picked me up from the station at Arnhem again. It was a relatively comfortable way of getting eased into traveling by train again.

If we were having coffee, I’d share that my husband and I had pizza at our in-laws’ yesterday. Then today my mother-in-law would be driving me back to the facility, so she picked me up at my husband’s at 4PM. We first went to my in-laws’ house again, where we walked the dog and ate fried potatoes, broccoli and chicken. I had a Magnum almond ice cream for dessert.

If we were having coffee, lastly I’d share that I finally brought some of my soaping supplies to the facility with me today. One of our home staff was leaving this week, so I had originally intended to make her a soap earlier. Thankfully, she will be working at another home with this facility, so when I do make the soap, I can bring it to her.

How has your week been?

Worrying: Will I Be Kicked Out of the Care Facility?

Posted on by Astrid

I have had a lot of dreams in which I was kicked out of the care facility lately. They’re no fun. I don’t know why I have these dreams. I mean, yes, a new client may come to my home, but I didn’t find out about that until today. Besides, my staff say it doesn’t mean I’ll have to leave. After all, there’s still an available room in my home.

Still, it scares me. I worry that, if this other client needs a lot of support, I will not get my needs met. I mean, not because of this other client, but because staff will be busier. Oh my, this sounds incredibly attention-seeking. I don’t want to need more support than I can get.

And what if this other client is very noisy? He’ll most likely be assigned to the other communal room than the one I’m assigned to. However, I think he’ll attend my group at day activities, which is already very crowded and noisy as it is. I was told they had many more clients before I came, but well, then this place wouldn’t have been suitable to me.

I talked about my worries to my former support coordinator on the phone. She told me these are just my thoughts and there’s no reason I’ll have to leave because of this other client. Then again, I didn’t get to elaborate on my worries.

I don’t want to be seen as needing too much. I was often seen as needing too much. Either needing too much or claiming to need more than I got. The two are different. The people at the first day activities I attended with this agency, truly thought I needed one-on-one support most of the time, which isn’t even what I was asking for. The staff on my last psychiatric unit thought I needed little care but was just demanding a lot out of some feeling of inadequacy that was apparently unfounded. Either way, I was asked to leave the place. With the psych ward, things were a little nastier than with the day center, but the result was the same.

I saw the behavior specialist who worked for that first day center today. That fueled my worries even more. I mean, she was extremely supportive, but didn’t really know how to handle my issues either. Then again, she never got to talk to me beyond the one time when she made sure I got transferred from the industrial activities group to the sensory group. That was a good move, but when it didn’t fully work out, I guess the manager stepped in and said he’d been accommodating enough and I would have to leave. That’s what I think will happen here too. I mean, my staff are very accommodating, but what if it isn’t enough? Will we find other solutions? Will I get even more accommodations? Or will I at some point just be kicked out? I’m very unsure and that worries me.

#WeekendCoffeeShare (January 19, 2020)

Posted on by Astrid

Hi and welcome to another installment of #WeekendCoffeeShare. I can have coffee again, as my flu is gone. It was gone already at the end of last week, but for some time, I still didn’t really enjoy coffee.

I also tried Optimel, which is a type of no-fat yoghurt drink, today. I initially thought it was based off buttermilk, the idea of which has me so disgusted that I don’t even want to try it. It is based off no-fat yoghurt though and it was good. If you want to try it too, I think we have some in the fridge.

If we were having coffee, Optimel or another drink, I’d share that this week has been eventful. I already wrote about it a lot during the week, as I seem to have gotten quite a bit of writing mojo back. That’s good! I also enjoy the comments on my blog and am trying to engage with you lovely readers more. I also love reading and commenting on other blogs and seeing people respond to my comments.

If we were having coffee, I’d share that the week-end was good overall. I had some nightmares again, but was able to keep them from interfering with my day for the most part. Still, I’m considering raising the issue of my vivid, bad dreams with my mental health treatment team.

If we were having coffee, I’d share that my husband didn’t have time to collect all my soaping supplies yet, but we’re probably going to sort through them another time together. I think I may order some supplies online this coming week, but am not sure. My husband and I agreed on throwing out all the ingredients, as they’ve probably gone past their expiration date and aren’t too expensive. At least not if I only buy what I need and don’t end up ordering random stuff in large quantities.

If we were having coffee, I’d share that we succeeded at getting my photo taken at the photographer’s yesterday. This is for my public transportation pass. There are really strict rules on photos for IDs and passports, but mine isn’t due for renewal for another five years. I want the transportation pass so that I can travel to my husband by train. You can get an anonymous one too, but then you can’t load discount subscriptions or the like onto it. Now I will still need to digitally apply for the pass.

If we were having coffee, I would share that my husband and I ate out at La Place, a restaurant chain we often have lunch at, yesterday evening. It was okay, but rather expensive for the quantity and quality of the food. Lunch usually is much better.

If we were having coffee, I’d be sharing that I was an overachiever according to my Fitbit yesterday. It probably says so if I get over 12,500 steps a day. I got 12,700. Today I made up for it, as I sat on my ass almost all day.

Another Crisis

Posted on by Astrid

As those who’ve been following along with my writing will know, I was in a bit of a crisis on Monday. Tuesday and yesterday were better, but today was bad again.

It started out with a horrible nightmare last night. I still can’t shake the thought that I’ll be kicked out of the care facility sooner or later and that was what the nightmare was about. I woke up all sweaty and fearful. I called the night staff to calm me down.

Then by mid-morning, I felt rather insecure. My day activities group is divided into two subgroups. There are three full-day staff for these two subgroups combined, plus one staff who has the short 10AM-2PM shift. Today, one of the three staff who would otherwise stay the entire day, had the short shift too. I didn’t mind as much, as still each subgroup would have one staff for the full day. Then one of the regular staff, who would stay the full day, had to attend to a client one-on-one. The would-be third full shift was a sub, so she needed help doing lunch. So at the end, my full-day staff ended up helping her in the other room and the short-shift staff was attending to my subgroup on her own. She had to help people get around, to the bathroom, etc., too, so I was feeling rather left out. Everything went a little chaotic and that led me to enter the orange phase of crisis prevention.

There are three or four phases: green for adequate coping, yellow for mild distress (this one is sometimes left out), orange for serious distress and red for crisis. I was eventually able to go back to yellow as lunch was served and I ate.

Then I wanted to go into the snoezelen® room to further calm down. However, the music, though it was my favorite calming record, was way too loud. After some time, I ended up having a severe meltdown. I wasn’t able to calm down once back at my group.

In the end, I decided to take a PRN lorazepam and go back to the home to lie on my bed. I slept for two hours straight. Now I’m back to green again.

I’m joining in with #FOWC, for which the prompt today is “Crisis”. The prompt couldn’t have come at a more appropriate time.

A Mixed Monday

Posted on by Astrid

Today is a truly mixed bag! I started out feeling relatively well. The flu seems to finally have left me, although I still sound a bit hoarse. Then in the morning I ate just a little too much sugar-free liquorice. This type of sugar-free liquorice has manitol in it, which works as a laxative. If I eat moderate quantities of liquorice, I’m totally fine, but if I eat too much, I get like the worst diarrhea imaginable. I thought I hadn’t eaten too much, but apparently I had. If my husband reads th is, he’s going to say he warned me.

I was still relatively okay during the morning. Went for a short walk. Then in the afternoon I didn’t feel well. This usually affects my mood before I’m even aware I’m physically unwell. I started to get really frustrated with how quickly my iPhone battery level would go down, which honestly isn’t that quickly at all given it’s an older model. Then I started to get annoyed with my fellow clients’ sounds. My fellow clients are all non-speaking, so it really is no wonder they make sounds. Just because I can’t understand them, doesn’t mean they need to shut up. Finally then I got annoyed with my staff having mindless chatter while I was trying to indicate I wanted help finding something to do. I found a simple shape-sorting task eventually, but it didn’t satisfy me. In this sense, it frustrates me that I need the level of support and low-stress environment geared towards people with severe intellectual disabilities, but at the same time need much more stimulation. My range of understimulation and overstimulation even seem to overlap a lot, so that my window of tolerance is very narrow. I try to tell myself I just need to accept boredom if I want to keep my level of support, for if I am judged to be too much of a handful, the result is likely that I get less support. That being said, telling myself not to be a pain in the neck doesn’t mean I actually am not a pain.

Finally, I started talking to my assigned staff. We agreed to try out soap making again someday soon. It’s something I enjoy and is a relatively quick activity even if I need hands-on assistance, that will nonetheless satisfy me for a while. I will ask my husband to bring my soaping supplies when he next visits me.

When I returned to the care home, I browsed my favorite soaping supplies store. I was talking to my assigned day activities staff about also knowing how to make lip balm. That’s an even easier activity that can be made more complex by using individual oils and butters rather than ready-made lip balm base. While browsing the store website, I came across a starter kit to make your own bath bombs. I’ve been wanting to do that forever, but since the goal up till recently has always been full independence, I thought this wouldn’t be a suitable activity. When I get back in the swing of soaping, I may buy myself the starter kit. It has some supplies I already have, such as colorants and fragrance oils, but you can never have enough of those. We have a bathtub at the care facility, so I’ll actually also put them to use.

In the evening, I was so excited I wanted to tell my home staff about the soaping idea and the bath bomb craziness. Then however the staff were talking among themselves for like an hour. They weren’t talking about clients, but still I beat myself up over wanting to interrupt them. That led to more frustration and overload and I eventually ended up banging my head. I feel incredibly annoyed with myself for being an attention-seeker like this, even though I didn’t act out when I thought the staff were looking. They eventually were though. Now I’m not sure whether this will eventually be used against me to kick me out. The staff said no, I won’t be kicked out, but in the end if I don’t change will they not reason life isn’t better in the facility for me? It is better, generally speaking, but I still struggle a lot.

#WeekendCoffeeShare (January 4, 2020)

Posted on by Astrid

Even though I don’t join in nearly every week, I really missed the #WeekendCoffeeShare crowd over the holidays. I’m so glad the linky is back, so I’m joining in today. Grab a cup of your favorite hot or even cold beverage and let’s catch up.

If we were having coffee, I’d say that I prefer water or green tea today, as I’m sick with a nasty cold or mild case of the flu. I can still drink coffee, but it doesn’t taste as good as does water or green tea.

My father-in-law was sick with the flu over the Christmas break. He ended up needing to go into hospital on the 27th for dehydration. Thankfully, he’s back home and slowly recovering. Then over New Year’s, my husband got sick. I seem to have caught it from either of them, but my mother-in-law says it’s a “men’s flu”, in that women don’t get it nearly as bad as men do. I’m hoping she’s right, although of course I hope my husband and father-in-law make a speedy recovery too.

If we were having coffee, I’d share that despite the flu going round my family, we had a good New Year’s. My husband and I went to his parents. One of my sisters-in-law joined us after dinner. I spent the evening mostly reading, while still sitting in the same room as everyone else, so that occasionally I could socialize.

If we were having coffee, I’d say that my 2020 is off to a pretty good start. I came back to the care facility early Wednesday afternoon, because my husband needed to drive me back. I relaxed some over Wednesday, Thursday and Friday, although on Thursday and Friday I did have day activities.

If we were having coffee, I’d share that I’m feeling productive in regards to finding a solution for getting to my husband by public transportation. I had a bit of a crying fit last night because I thought we wouldn’t find a solution and I would struggle to see my husband regularly. My support coordinator E-mailed the behavior specialist though to help us think out a solution.

If we were having coffee, I’d want to share all about the books I’m looking forward to reading. I didn’t read at all today, but over the holiday break, have truly been enjoying reading. Of course, my virtual shelves are still stacked much fuller than my slow reading pace can follow, but so what? I’m a collector at heart, after all.

How have you been this past week and over the holidays?

Essential Oil Diffuser!

Posted on by Astrid

Today we had a Christmas lunch at day activities. It was good. We got a hamburger, salad and ice cream. At the end of the day, we also got our Christmas presents from day activities. It’s a tradition here in the Netherlands that employers give their employees a Christmas package (usually a box with foods and a small gift). Though we aren’t really employees, our day activities gives us a present too. I had been more or less pestering my staff for an essential oil diffuser. A fellow resident at the care facility got one as a St. Nicholas present on December 5. I have at least one and probably two at home already, but they work with a fan and hardly give off any scent. The one my fellow resident got, works with water. You add a cup of water and a few drops of essential oil to it and then it somehow heats the water or otherwise diffuses the oil. I had had such a diffuser a few years back but that one had a lot of safety warnings on it and my husband was pretty sure I’d harm myself using it, so I returned that one to the shop.

Anyway, we did get the essential oil diffuser! It’s a cheap one from something similar to the Dollar Store, but I love it. Right now, it’s diffusing a bit of vanilla fragrance oil that I borrowed from the fellow resident, as I don’t have my EOs with me here yet. Its scent is a lot stronger than what came off the fan-based diffusers. I checked and it doesn’t seem like this diffuser is actually heating the water. Don’t know how else it produces the smell, but oh well. This particular diffuser also has lights in it that change color and it actually releases a bit of mist. I can’t see the colors, of course. I’m curious to know what this diffuser will do when I diffuse eucalyptus essential oil. I tried this in the fan-based one and hardly smelled it, even though eucalyptus is supposed to be a really strong scent. This diffuser has only a small water reservoir, so you can only add five or so drops of EO. This means I can hardly make any blends, but who cares? Maybe I’ll figure out blending tiny amounts anyway.